Public Document Pack

Agenda for a meeting of the Joint Health and Social Care & Children's Services Overview and Scrutiny Committees to be held on Tuesday, 28 November 2017 at 4.30 pm in the Banqueting Hall - City Hall, Bradford

Members of the Health and Social Care Overview and Scrutiny Committee – Councillors CONSERVATIVE LABOUR LIBERAL DEMOCRAT AND INDEPENDENT Gibbons Greenwood N Pollard Rickard A Ahmed Akhtar Johnson Shabbir Alternates: CONSERVATIVE LABOUR LIBERAL DEMOCRAT AND INDEPENDENT Barker Berry Griffiths Poulsen I Hussain S Hussain Iqbal H Khan NON VOTING CO-OPTED MEMBERS Susan Crowe Strategic Disability Partnership Trevor Ramsay Strategic Disability Partnership G Sam Samociuk Former Mental Health Nursing Lecturer Jenny Scott Older People's Partnership

Members of the Children’s Services Overview and Scrutiny Committee – Councillors CONSERVATIVE LABOUR LIBERAL DEMOCRAT INDEPENDENT AND INDEPENDENT D Smith Engel Ward Sajawal M Pollard Mullaney Peart Shaheen Tait Alternates: CONSERVATIVE LABOUR LIBERAL DEMOCRAT AND INDEPENDENT

Rickard Akhtar J Sunderland Riaz Bacon Abid Hussain Thirkill Sharp VOTING CO-OPTED MEMBERS: Sidiq Ali Parent Governor Representative Claire Parr Church Representative (RC) Joyce Simpson Church Representative (CE) Gull Hussain Parent Governor Representative NON VOTING CO-OPTED MEMBERS Kerr Kennedy Voluntary Sector Representative Tom Bright Teachers Secondary School Representative Irene Docherty Teachers Special School Representative

Notes:  This agenda can be made available in Braille, large print or tape format on request by contacting the Agenda contact shown below.  The taking of photographs, filming and sound recording of the meeting is allowed except if Councillors vote to exclude the public to discuss confidential matters covered by Schedule 12A of the Local Government Act 1972. Recording activity should be respectful to the conduct of the meeting and behaviour that disrupts the meeting (such as oral commentary) will not be permitted. Anyone attending the meeting who wishes to record or film the meeting's proceedings is advised to liaise with the Agenda Contact who will provide guidance and ensure that any necessary arrangements are in place. Those present who are invited to make spoken contributions to the meeting should be aware that they may be filmed or sound recorded.  If any further information is required about any item on this agenda, please contact the officer named at the foot of that agenda item. From: To: Parveen Akhtar City Solicitor Agenda Contact: Fatima Butt Phone: 01274 432227 E-Mail: [email protected] A. PROCEDURAL ITEMS

1. ALTERNATE MEMBERS (Standing Order 34)

The City Solicitor will report the names of alternate Members who are attending the meeting in place of appointed Members.

2. APPOINTMENT OF CHAIR (Standing Order 35)

To elect a Chair for this meeting only.

3. DISCLOSURES OF INTEREST (Members Code of Conduct - Part 4A of the Constitution)

To receive disclosures of interests from members and co-opted members on matters to be considered at the meeting. The disclosure must include the nature of the interest.

An interest must also be disclosed in the meeting when it becomes apparent to the member during the meeting.

Notes: (1) Members may remain in the meeting and take part fully in discussion and voting unless the interest is a disclosable pecuniary interest or an interest which the Member feels would call into question their compliance with the wider principles set out in the Code of Conduct. Disclosable pecuniary interests relate to the Member concerned or their spouse/partner.

(2) Members in arrears of Council Tax by more than two months must not vote in decisions on, or which might affect, budget calculations, and must disclose at the meeting that this restriction applies to them. A failure to comply with these requirements is a criminal offence under section 106 of the Local Government Finance Act 1992.

(3) Members are also welcome to disclose interests which are not disclosable pecuniary interests but which they consider should be made in the interest of clarity.

(4) Officers must disclose interests in accordance with Council Standing Order 44.

4. MINUTES

Recommended –

That the minutes of the meeting held on 27 October 2016 be signed as a correct record (previously circulated).

(Fatima Butt – 01274 432227) 5. INSPECTION OF REPORTS AND BACKGROUND PAPERS (Access to Information Procedure Rules – Part 3B of the Constitution)

Reports and background papers for agenda items may be inspected by contacting the person shown after each agenda item. Certain reports and background papers may be restricted.

Any request to remove the restriction on a report or background paper should be made to the relevant Strategic Director or Assistant Director whose name is shown on the front page of the report.

If that request is refused, there is a right of appeal to this meeting.

Please contact the officer shown below in advance of the meeting if you wish to appeal.

(Fatima Butt – 01274 432227)

B. OVERVIEW AND SCRUTINY ACTIVITIES

6. CHILDREN AND YOUNG PEOPLE'S MENTAL HEALTH 1 - 72 Previous reference: Minute 3 (2016/2017)

The Director of Strategy, Bradford Districts Clinical Commissioning Group will present a report (Document “A”) which provides an update on the progress of Bradford’s Children and Young People’s Future in Mind local transformation plan since last reported to the Committees in October 2016.

Future in Mind was published in 2015 by the government’s Children and Young People’s Task force. It describes how children’s mental health services need to be transformed through collaboration around five key areas.

Recommended –

The Committees are invited to:

(1) Recognise the progress made in meeting the emotional and mental wellbeing needs of young people through the delivery of the Future in Mind transformation plan.

(2) Support and promote the work to improve emotional and mental wellbeing of young people in all work streams and programmes considered.

(Sasha Bhat – 01274 237537) 7. AUTISM AND OTHER NEURODIVERSITY STRATEGY 73 - 138

The Director of Children’s Services and the Strategic Director of Health Partnerships will submit Document “B” which presents the Draft Bradford District and Craven Autism including other Neurodiversity Strategy. The strategy identifies a number of key areas for review and development in order to ensure that children and adults with Autism and other frequently co-occurring neuro-developmental conditions, living within our district, are able to lead rewarding and fulfilling lives from cradle to grave.

The strategy has been developed in response to the self assessment process that Local Authorities are required to undertake annually. This self assessment helps Local Authorities to determine what progress is being made towards meeting the requirements of the Autism Act 2010 (revised 2015). A local Autism strategy is a key requirement of the Act.

Recommended –

That the contents of the report be noted.

(Jo Butterfield/Ronnie Hartley – 01274 439496)

8. BETTER START BRADFORD PROGRAMME UPDATE 139 - 156 The Strategic Director of Children’s Services will submit Document “C” which provides an update on the progress of the Better Start Bradford programme and implications for the district.

Recommended –

That the information provided in the report and the high commitment within the District to improving outcomes and reducing inequalities for all young children through evidence based early intervention and prevention to ensure all children reach their potential be noted.

(Michaela Howell – 01274 513227)

THIS AGENDA AND ACCOMPANYING DOCUMENTS HAVE BEEN PRODUCED, WHEREVER POSSIBLE, ON RECYCLED PAPER This page is intentionally left blank Agenda Item 6/

Report to the joint meeting of Health and Social Care and Children’s Services Overview & Scrutiny Committees to be held on 28 November 2017

A Subject:

Children and Young People’s Mental Health

Summary statement:

This report provides the Joint Health & Social Care and Children’s services Overview and Scrutiny committees with an update on the progress of Bradford’s Children and Young People’s local transformation plan since our last report in October 2016.

Future in Mind was published in 2015 by the government’s Children and Young People’s Task force. It describes how children’s mental health services need to be transformed through collaboration around five key areas.

We have made good progress in meeting the Top Tips for Commissioners that Young People set in the Joint Strategic Needs Assessment and the Future in Mind transformation plan is delivering key progress.

Ali Jan Haider Portfolio: Director of Strategic Partnerships NHS Clinical Health and Wellbeing Commissioning Groups (Bradford and Craven) Overview & Scrutiny Area: Report contact: Sasha Bhat Head of commissioning: mental wellbeing Children’s Services and Phone (01274) 237537 Health & Social Care E-mail: [email protected]

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1. Summary

Future in Mind was published in 2015 by the government’s Children and Young People’s Task force. It describes how children’s mental health services need to be transformed through collaboration around five areas of promoting prevention, improvement of care and access to good quality of services.

This report describes progress on issues raised by the Committee following the papers in October 2016 and March 2017. The overall progress of the programme is provided in Appendix 1.

Key points:

• Excellent progress on meeting the Top Tips for commissioners as set by Young People in our Joint Strategic Needs Assessment. • Strong engagement of children and young people in the programme • Established formal alignment with programmes such as the SEND, B Positive Pathways and Social, Emotional & Mental Health (SEMH) group • 67 schools now have 86 mental health champions with 100% good or very good evaluations for impact of support provided. • Implemented a new self-harm policy across health and education settings • Over 50 schools have accessed Living Life to the Full training • 26 courses on mental health awareness were held from April 2016 to March 2017 with 555 staff trained across the universal workforce in Bradford District. • Our Health Buddies have supported 277 children and young people reducing waiting lists • The average waiting time from referral to treatment was 106.8 days, a reduction of 14.5 days from the average of 121.3, for CAMHS services. • Bevan Healthcare are delivering schemes to provide refugee and asylum seeking children with mental health and psychological support. • Greater working with the voluntary and community sector to build support when needed, this has included developments with the First Response Service and Safer Spaces. • First response are working with Youth on Health to create a toolkit for tele coaches to help them work with young people that ring in crisis as more young people use the service • Youth on health network working with safer spaces to audit to the building and working with Tower Hurst to keep creating a homely service currently look at the artwork for the building. • We are supporting a youth led campaign on anti-bullying #bfdbeatsbullying

Priorities for the next year include integration and alignment of the transformation programme sustainably across other programme areas, expansion of digital engagement and wellbeing tools and an overall alignment of children’s and young people mental health services with our Districts’ strategic aims. In terms of outcomes – we will be prioritising early access and work in schools.

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2. Context and Background

The Children and Young People’s Mental Health and Wellbeing Taskforce was established by the government in 2014 to consider ways to make it easier for children, young people, parents and carers to access help and support when needed. In March 2015 the taskforce published its report and recommendations: Future in Mind: promoting, protecting and improving our children and young people’s mental health and wellbeing .

The five key themes were: - Promoting resilience, prevention and early intervention - Improving access to effective support: a system without tiers - Care for the most vulnerable - Accountability and transparency - Developing the workforce.

Our Local Transformation Plan was developed in the context of Bradford and Airedale with reference to the Joint Health Needs Analysis of emotional and psychological wellbeing of children in Bradford (Public Health 2015).

Earlier this year we launched the strategy for Mental Wellbeing in Bradford and Craven. This all age strategy has been developed through extensive and detailed working with partners and stakeholders. It addresses three principal areas: our wellbeing, our mental and physical health, and care when we need it. These areas are aligned with Future in Mind’s work streams and together will help to achieve the five strategic objectives set:

¢ Future in Mind objectives set within our commitments of the Mental Wellbeing Strategy.

By 2020, we will work together with partners to ensure that children and young people: 1. will be supported to recognise and value the importance of their mental wellbeing and take early action to maintain their mental health through improved prevention, awareness and understanding 2. can enjoy environments at work, home and in other settings which promote good mental health and improved wellbeing 3. will experience seamless care and have their physical and mental health needs met through services that are integrated and easily accessible 4. can reach their maximum potential through services which are recovery focused, high quality and personalised and which promote independence 5. can expect support to be commissioned and delivered in a way that leads to increases in efficiency and enables transformation of care through reinvestment. Page 3 Report to the Joint Health & Social Care and Children’s Services Overview & Scrutiny Committee

3. Report issues

Children and young people provided a series of Top Tips for commissioners of emotional and mental health services. Commissioners are working with Children and Young people and service providers to fulfil our commitments to meeting these key areas of support. The progress on Future in Mind, described below supports our delivery of these commitments.

Promoting resilience, prevention and early intervention Expansion of Wellness Recovery Action Plan (WRAP) services: Bradford were one of the first areas in the country to roll out WRAP (Wellness Recovery Action Planning) for Children and Young People and is in its fourth year of delivery. WRAP is a peer support 10 week course promoting self-care, resilience building and peer support. Barnardo’s have developed a Children and Young People WRAP Toolkit informed by user and facilitator evaluation from over 20 WRAP groups delivered. Locally Barnardo’s provides Bradford with a robust marker for quality assurance re WRAP and has built capacity across the district through training over 15 adult WRAP 1 and 2 facilitators and 13 Young People peer Wrap facilitators. Since 2016, we have supported further organisations to carry out WRAP for young people including Girlington Community Association, Bradford District Care Foundation Trust and Roshni Ghar. The WRAP courses support young people transitioning to be resilient and manage well.

Mental health champions in school The aim in establishing Mental Health Champions and a network of Mental Health Champions in schools was been agreed to build capacity and confidence to address mental health in schools. The Mental Health Champions have increased capacity to meet low level mental health needs in the school, improved joint working, are bringing service providers together with schools to develop understanding of pathways and where necessary providing opportunity to develop and feed into more efficient pathways. Over 86 schools attended Mental Health Champions Launch Conference in February 2017. • Steering group of key partners for joint working in shaping the initiative and developing sustainability post funding. • 67 schools have signed up for the Mental Health Champions Initiative and have attended the Mental Health Champions’ Network Meetings. • Over 50 schools have accessed Living Life to the Full training. • Evaluations have been 100% good or very good for impact of support provided via network meetings to support Mental Health Champions to support pupils in schools. • Development and implementation of self-harm policy for schools. • MYMUP commissioned to develop www.mentalhealthmattersinschools.org website where parents can gain advice and key information and professionals can access resources, share information and connect

Barnardo’s and ‘Yoomee’ have been commissioned to develop a website with information and advice for young people navigating adolescence, with signposting to services and real stories. This website, Thrive Bradford , is now live, providing information to young people on mental health and wellbeing matters and on local services available. A campaign to publicise the site is complete and usage is being monitored.

We have also produced the Future in Mind local transformation plan into an Easy Read version to support understanding of the work programme and increase involvement and this is available on the Clinical Commissioning Group website. Page 4 Report to the Joint Health & Social Care and Children’s Services Overview & Scrutiny Committee

We have worked with young people to create a series of short films on different topics that effect young people and young people giving advice on them. There devolvement youth on health and positive identities to add a session around LGBT and race issues. Going forward, our priority is to bring together all the digital platforms for schools, champions and young people through a single gateway. MYMUP will increase Thrives’ levels of engagement through the development of films, media and blogs on the site.

Primary mental health workers in schools As part of the Future in Mind Transformation Plan the commissioner identified that links into schools and provision at lower level is paramount in the success of the pathway for Children and Young People and their social and emotional wellbeing and ensuring that care is delivered at the right place at the right time. Pivotal to delivering this is the role of the Primary Mental Health Worker.

The Primary Mental Health Worker workforce consisting of 12.6 WTE professionally qualified clinicians are employed by BDCFT. They span across the whole district providing a link into schools, offering consultation and support to the universal workforce to include school nurses, social workers. They hold family support clinics and act as a conduit to referrals into specialist CAMHS ensuring that families’ children & young people receive support at the most appropriate level and in the right place. Each PMHW is linked and mapped to a school nurse cluster and work closely with School Nursing Colleagues and GPs. The PMHW workforce are skilled in providing expert advice and guidance, upskilling and empowering the workforce in being able to support the emotional wellbeing of Young People and their families. They are also skilled in delivering brief interventions alongside the wider workforce and the specialist CAMHS service.

The Primary Mental Health Worker role is key in the delivery of the MH champions in schools project. Our PMHW Lead has been fundamental in the development of the project. She and her PMHW colleagues support the delivery of the training and supervisory sessions to the MH champions.

To make even further use of this vital capacity, to attempt to offer greater spread of their role and out into the wider health, social care and education system we also mapped PMHW capacity to each Early Help Panel ensuring that CAMHS representation is present at each early help panel where referrals for families are discussed and a shared understanding and formulation of what the family needs can be reached.

Addressing Bullying Across the local authority youth Services there are positive interventions that support young people in dealing with bullying. Regular youth work sessions enable young people to build strong voluntary relationships with youth work staff that builds trust and support for young people in speaking out about bullying.

The Bradford Safeguarding Children’s Board has asked its Education sub group to look at hosting a conference and leading some work around Bullying, this is in the early stages of planning.

Sharing Voices' Young Peoples Community Development Workers are currently delivering awareness workshops around bullying in many schools across the Bradford District, this

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includes providing practical advice to young people on how to respond to bullies, dealing with cyber bullying and more importantly where to get help from. Schools are also being encouraged to appoint 'happiness ambassadors' to ensure their peers stay safe both online and offline, and will mentor, train, advise and monitor the effectiveness of the schools anti-bullying policy from a student perspective. Sharing Voices in partnership with Ona Ju Jitsu Club and Bradford Clinical Commissioning Groups also hosted a large anti bullying event 'Break the Silence' at City Park in September, hundreds of school children attended to take part in the martial arts class and demonstration, the youngsters were also treated to a performance by a young Bradford rapper who herself was a victim of bullying.

Young people have also started their own anti-bullying campaign to encourage positive care which was launched on the 13 th of November 2017. A short presentation will be made at the committee on the campaign, seeking support of members to promote the key messages of the campaign.

Raising awareness, skills and training The above work with schools is aimed to support awareness raising and access to skills. In addition to the above, we have worked with our voluntary sector providers and NHS England to host events, roadshows and festivals aimed at promoting awareness about mental wellbeing. These have been really successful and raised the profile of Bradford as leading the way.

Improving access to effective support Waiting Lists The Youth in Mind, which includes the Health Buddies, service aims to support young people and reduce waiting list numbers expects to support 500 young people during 2017/18. At 30 September 2017 there were 570 children and young people on the CAMHS waiting list, a reduction of 211 from 781 at the end of September 2016. At 30 September 2017 the average waiting time from referral to treatment was 106.8 days, a reduction of 14.5 days from the average of 121.3 at the end of September 2016.

Specialist CAMHS In 2016/2017 1881 referrals were accepted into CAMHS and the active caseload was 2005 at 31 August 2017. Pathway review and transformation is taking place working alongside Youth in Mind with a focus on improving access and growing the workforce. The work with Youth in Mind has supported new skills and ways of working.

Youth in Mind The Youth in Mind model was designed by young people who felt that young people should get support for their mental health and wellbeing when they need it.

Health, Youth Service and Voluntary Partners working together to create an integrated model that helps young people to build resilience and be less isolated, more connected, safer and in control.

The Youth in Mind model provides young people with the Same Worker/Named worker to support them through their mental health journey.

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Youth in Mind uses a range of ways to engage young people including drop-ins, one to one and peer support work through Buddies WRAP group work led by Barnardo’s, MYMUP’s digital self-help tool, evidenced based peer support groups and longer term volunteer mentoring. Additionally support in a crisis is provided through Creative Support’s Safer Space at Tower Hurst. The below diagram details the model:

Sharing Voices Cultural specific support

One of the reasons for launching Youth In Mind, originally called the Buddies scheme, was to address the high volume of referrals to Child and Adolescent Mental Health Services (CAMHS). Since launch in April 2017 CAMHS have referred 275 young people to Youth In Mind where they received the support of a Health Buddy through the Youth Service and access to the MYMUP digital platform. In quarter 2, onward referrals started being made to other Youth in Mind partners; 8 referrals to Yorkshire Mentoring for ongoing one to one support with volunteer mentors, 40 referrals made to Barnardo’s for 10-week WRAP group programmes being run at 5 venues across the district. With the follow on support from the sweet wrapper groups.

MYMUP – the digital 24/7 wellbeing application has launched; giving access to a joined-up recording and monitoring tool across the partners to input and track progress; providing a wide range of online interventions to young people that promote self-awareness, resilience, empowerment, life skills and self-care. MYMUP are providing targeted one to one support to all partners around the use of the digital application; consequently there has been a surge in engagement with online interventions, out of hours digital support that the app provides and profile-building including the development of digital wellbeing diaries.

Youth In Mind currently accept referrals, targeting CAMHS wait times for treatment and initial assessment, . Furthermore, the flexibility and adaptability of the model allowed for an unanticipated cohort of referrals from CAMHS, of young people already receiving treatment. Buddies support this cohort in partnership with allocated CAMHS practitioners Page 7 Report to the Joint Health & Social Care and Children’s Services Overview & Scrutiny Committee

to target the reduction of Did Not Attendees (DNAs) and impact waiting times by facilitating move on from specialist CAMHS. The model will open to referrals from wider partners in quarter 3; initial plans in place to target schools with support from Sharing Voices Bradford to address underrepresentation of referrals from BME backgrounds and Family Action to include work with younger children and their families.

Safer Spaces Safer spaces – Tower Hurst offers a one night stay in a homely, non-clinical place for children & young people under 18 who are in or at risk of mental health crisis or emotional distress. The Safe Space is staffed 10pm to 10am Monday to Sunday with referrals made through the First Response service – which was expanded for children and young people and the Emergency Duty Team. The Safer Space model was designed in partnership with CAMHS Service Users via Barnardo’s Youth on Health Participation Network through consultations and visits to the space.

The Safer Space has had 84 referrals, 54 of which were accepted. . The First Response service offered triage and crisis assessment to 283 children and young people under 18 between January and July 2017.

Appendix 2 provides case studies and the committee will be presented with films made by the young people.

Caring for the most vulnerable Bevan Healthcare are delivering a number of schemes to engage with the mental health and psychological support needs of refugee and asylum seeking children in Bradford. The one-to-one counselling sessions have been extremely successful with 30 children seen and discharged, receiving positive feedback from both schools and families.

4. Options Not applicable

5. Contribution to corporate priorities

The Future in Mind implementation plan and the prioritisation of the children and young people’s mental wellbeing reflects the ambition of the District Plan for ‘all of our population to be healthy, well’ (District Plan: Better health, better lives) and the commitments made in the Bradford and Craven Mental Wellbeing Strategy.

6. Recommendations

The Committees are invited to: • Recognise the progress made in meeting the emotional and mental wellbeing needs of young people through the delivery of the Future in Mind transformation plan. • Support and promote the work to improve emotional and mental wellbeing of young people in all work streams and programmes considered.

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7. Background documents

• Future in Mind (DOH) March 2015 • Mental Health Strategy for Bradford and Craven (CCG) October 2016 • Children and Young people’s Health Needs Assessment 2015

8. Not for publication documents

None

9. Appendices

1. Future in Mind Locality Transformation Plan (CCG) October 2017 2. Youth in Mind Case Studies

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Refreshed version October 2017

CHILDREN AND YOUNG PEOPLE’S MENTAL HEALTH TRANSFORMATION PLAN

1. Our vision and summary ...... 3

Achievements ...... 3

2. Background ...... 4

Future in Mind ...... 4

The Five Year Forward View for Mental Health ...... 4

Bradford District and Craven Sustainability and Transformation Plan (STP) ...... 4

West Yorkshire and Harrogate Health and Care Partnership ...... 5

Mental Wellbeing in Bradford District and Craven: a Strategy 2016-2021 ...... 5

Alignment with Partnership Programmes ...... 5

3. Health Needs Assessment ...... 7

Why is children’s mental health important? ...... 8

Vulnerable groups in Bradford’s population ...... 8

Recommendations of the Health Needs Assessment ...... 10

4. Engagement and involvement ...... 11

5. Promoting resilience, prevention and early intervention (Wellbeing) ...... 13

Schools Engagement ...... 13

Single point of access ...... 16

6. Improving access to effective support: a system without tiers ...... 17

CAMHS ...... 17

CAMHS Tier 4: ...... 20

Early Intervention in Psychosis...... 23

Crisis Care ...... 24

Perinatal mental health ...... 26

Autistic spectrum ...... 26

Eating disorders ...... 27

7. Caring for the most vulnerable: Vulnerable Groups ...... 29

8. Accountability and transparency ...... 33

9. Developing the workforce ...... 34

CAMHS Workforce ...... 37

Workforce planning ...... 38

10. Finance ...... 39

HLT&CHI28NovDocAapp1final_draft Page 11 1

Funding allocation 2016/17 ...... 39 Funding allocation 2017/18 ...... 39 11. Governance ...... 40 12. Measuring impact ...... 40 13. APPENDICES ...... 41 Appendix 1: Mental Wellbeing in Bradford district and Craven: a strategy 2016-2020 ...... 41 Appendix 2: Engagement with children and young people in North Yorkshire including Craven 42 Appendix 3: Local Transformation Plan summary for children and young people, parents and carers ...... 43 Appendix 4: Bradford Youth Voice event findings ...... 43 Appendix 5: Governance structure ...... 44 Appendix 6: Outcomes and milestones ...... 45 Appendix 7: Metrics ...... 50 Local metrics ...... 50 Local dashboard ...... 52 National metrics...... 53 References ...... 54

HLT&CHI28NovDocAapp1final_draft Page 12 2 1. Our vision and summary Mental wellbeing in Bradford district and Craven: a strategy 2016-2021 (Appendix 1) was developed through close working with district partners including CBMDC, North Yorkshire County Council and VCS organisations. The local Future in Mind transformation plan is embedded within our all age strategy and shares its vision of hope, empowerment and support through a focus on three strategic priorities:

• Our wellbeing, • Our mental and physical health, and • Care when we need it.

By 2020, we will work together with partners to ensure that children and young people:

1. will be supported to recognise and value the importance of their mental wellbeing and take early action to maintain their mental health through improved prevention, awareness and understanding 2. can enjoy environments at work, home and in other settings which promote good mental health and improved wellbeing 3. will experience seamless care and have their physical and mental health needs met through services that are integrated and easily accessible 4. can reach their maximum potential through services which are recovery focused, high quality and personalised and which promote independence 5. can expect support to be commissioned and delivered in a way that leads to increases in efficiency and enables transformation of care through reinvestment.

Achievements Since the October 2016 refresh, some highlights of our main achievements have been: V 67 schools now have 86 mental health champions with 100% good or very good evaluations for impact of support provided. V Implemented a new self-harm policy across health and education settings V Over 50 schools have accessed Living Life to the Full training V Our Health Buddies have supported 211 children and young people reducing waiting lists V The average waiting time from referral to treatment was 106.8 days, a reduction of 14.5 days from the average of 121.3, for CAMHS services. V The number of Tier 4 occupied bed days decreased from 3,401 in 2015/16 to 2,651 in 2016/17. V Bevan Healthcare are delivering schemes to provide refugee and asylum seeking children with mental health and psychological support. V The main statutory provider is reporting against MHSDS and Data Quality in 8 of the 14 fields monitored by NHS Digital was above 95% in June 2017. V 26 courses were held from April 2016 to March 2017 with 555 staff trained across the universal workforce in Bradford District. V Launched the Compass Buzz school wellbeing workers project V Established formal alignment with programs such as the SEND, B Positive and SEMH group V Greater working with the voluntary and community sector to build support when needed

HLT&CHI28NovDocAapp1final_draft Page 13 3 2. Background

Future in Mind The Children and Young People’s Mental Health and Wellbeing Taskforce was established by the government in 2014 to consider ways to make it easier for children, young people, parents and carers to access help and support when needed. The purpose of the taskforce was to make recommendations to ministers, and agree actions aimed at achieving better outcomes for children and young people with mental health problems. In March 2015 the taskforce published its report and recommendations: Future in Mind: promoting, protecting and improving our children and young people’s mental health and wellbeing . 1 The five key themes articulated in this report were:

- Promoting resilience, prevention and early intervention - Improving access to effective support: a system without tiers - Care for the most vulnerable - Accountability and transparency - Developing the workforce.

The Five Year Forward View for Mental Health The report of the Mental Health Taskforce, The Five Year Forward View for Mental Health , was published in 2016 and builds on the foundations provided by Future in Mind to recommend the system-wide transformation of the local offer to children and young people to achieve improvements in mental health and increased access to high quality healthcare. 2 It also recommends that Children and Young People’s Local Transformation Plans should be refreshed and integrated into local area Sustainability and Transformation Plans. This is the refreshed version of the Local Transformation Plan. The guidance on implementing the Five Year Forward View for Mental Health also emphasizes the need for a joint-agency approach, early intervention and the promotion of resilience, as well as access to high quality, evidence based treatment. 3

Bradford District and Craven Sustainability and Transformation Plan (STP) The areas of transformation envisaged by the STP include

- The prevention of illness and the improvement of general health and wellbeing - The transformation of primary and community services, with the patient at the centre of care - Implementing a 24/7 integrated care system - Developing a sustainable system-wide model for urgent care. Prevention of illness, improved wellbeing, transformation of services and the availability of 24 hour crisis care are all central to this local Future in Mind Children and Young People’s Mental Health Transformation Plan.

HLT&CHI28NovDocAapp1final_draft Page 14 4 West Yorkshire and Harrogate Health and Care Partnership Our local STP aligns to the overarching plans for our region. We want to make sure that mental health services are integrated or combined with physical health services - this will ensure we care and treat the ‘whole’ person. For example, we will support people with long-term physical health conditions to cope with anxiety or depression. We are developing services across the area to reduce the difference in the quality of mental health care that people receive in order to improve their wellbeing and make services better. It is important to us to develop services to improve the experience of care for people in mental health crisis, and we want to reduce the number of people taking their own lives, so we are creating a region-wide multi-agency suicide prevention strategy.

Mental Wellbeing in Bradford District and Craven: a Strategy 2016-2021 This all age strategy has been developed through extensive and detailed working with partners and stakeholders, and was launched in December 2016. It addresses three principal areas: our wellbeing, our mental and physical health, and care when we need it. These areas are aligned with Future in Mind’s work streams and together will help to achieve the five strategic objectives set:

¢ Future in Mind objectives set within our strategic objectives of the Mental Wellbeing Strategy.

Alignment with Partnership Programmes We work very closely with the Local Authority and other partners in line with our aim to join up services and integrate the way we work.

Good Health and Wellbeing 2013-2017 Good Health and Wellbeing 2013-2017 is a strategy to improve health and wellbeing and reduce health inequalities in Bradford and Airedale. Future in Mind is aligned with Priority 7: Improve the mental health of people in the Bradford District.

HLT&CHI28NovDocAapp1final_draft Page 15 5 Bradford Children, Young People and Families Plan 2017 – 2020

Our Future in Mind plans align with our districts ‘Children, Young People and Families Plan 2017-20 which sets out our vision and our priorities for children, young people and families, how we plan to achieve these, who is responsible, and what success will look like.

The plan will be monitored by Bradford Children’s Trust . The trust is the leadership group which brings together all of the partners who work with children and young people. There are 6 priorities of which the following are integral to the Future in Mind strategy.

- Accelerating education and attainment and achievement. - Ensuring our children and young people are ready for life and work (resilience) - Safeguarding the most vulnerable and providing early support - Reducing health and social inequalities - Listening to the voice of children, young people and families and working with them to shape services The plan makes specific reference to the need to improve emotional wellbeing for individual young people through the opportunities offered by the Future in Mind Programme.

B Positive Pathways (BPP) BPP is a £3.2m innovation funded project based on the successful North Yorkshire ‘No Wrong Door’ project. No Wrong Door seeks to prevent adolescents entering the care system and improve their long term outcomes. The model centres on a hub home with wraparound multi- agency professionals working together. The BPP service will respond proactively and innovatively to cases that at the moment quickly escalate to full time care. Outreach workers will support young people and families in their own homes responding at the time of crisis and call on the wrap around support to enable families to work through their issues without statutory intervention. The outreach service will be offered 24/7. BPP is aligned with the Future in Mind work stream for Vulnerable Groups, which includes Looked After and Adopted Children.

Special educational needs and disability code of practice: 0 to 25 years Future in Mind is aligned with this code of practice, which relates to children with physical and mental health disabilities or impairments. We have recently aligned the two strategies for SEND and Behaviour and are working to ensure we move towards a sector-led self-improving model of SEND provision where best practice is shared between schools, health and care.

Young and Yorkshire 2 (North Yorkshire Children’s Trust) Future in Mind is aligned with Priority 5: Improve social, emotional and mental health and resilience.

HLT&CHI28NovDocAapp1final_draft Page 16 6 3. Health Needs Assessment A comprehensive health needs assessment for the Bradford district was published in January 2015. It highlighted the fact that Bradford has the third highest population of children and young people in the United Kingdom and that services provided to them are under pressure from national austerity measures. Details of the Health Needs Assessment are in Section 3. Bradford has the third largest child population in the UK with some risk factors which increase the likelihood of poor wellbeing and mental health, in particular the high numbers of children living in poverty. The overall child population increased by 10.5% between 2002 and 2012, and is projected to grow by a further 5.5% by 2025. This population growth is likely to be concentrated in the most deprived areas of the city where birth rates are currently highest. The 10-14 age group – a key group for the onset of mental health difficulties – is projected to grow by 10.2% in the next 10 years. Bradford’s child population has a number of factors associated with increased risk of emotional or mental health difficulties. The most significant of these is the high number of children living in poverty and disadvantaged circumstances. Based on data from national surveys, we can estimate that there are currently just under 8,500 children aged between 5 and 15 with diagnosable mental health disorders in Bradford. Between three and four children in every secondary school classroom are likely to have some form of mental health difficulty. However, the number of children with emotional or behavioural difficulties at a lower level is harder to quantify but if we applied the figure in the Growing Up In Ireland study to the Bradford child population between 5-15, we could estimate there to be a further 10% of children with lower level difficulties. 4 This would equate to 17,000 children with some level of emotional or mental health difficulty in Bradford. Further, with the expected increase in population in the relevant age bands, we would expect to see a rise to 23,600 children with some level of emotional or mental health difficulty by 2025. Figure 1: child population and projected increases

These figures suggest that children and young people in many parts of the Bradford district are affected by health inequalities, that is, differences in the health of different parts of the

HLT&CHI28NovDocAapp1final_draft Page 17 7 population. 5 There is convincing evidence that inequalities begin in childhood and widen over an individual’s lifetime. By ensuring the best possible mental and emotional wellbeing for children and young people in Bradford district and Craven we intend to reduce inequalities in mental health and also in other areas that can be affected by mental wellbeing, such as physical health and the fulfilment of educational potential.

Why is children’s mental health important? An increase in the demand for emotional and mental health services at all levels, including specialist CAMHS services, over and above a rise in proportion with the population, is likely. Prevention, promotion and early intervention will play a very important role in protecting capacity within specialist CAMHS. One in 10 children between the ages of 5 and 16 has a mental health disorder. 6 For many, this is persistent: successive national surveys show that 25% of children with a diagnosable mental health disorder still had the same disorder three years later. The majority of adult mental health disorders have their beginnings in childhood. 50% of adult mental health disorders (excluding dementia) have their onset before age 14 and 75% of disorders (again excluding dementia) before the mid-twenties.

Figure 2: The age of onset for some common adult mental disorders

Condition Age group

ADHD 7-9 years of age

Oppositional defiant disorder 7-15 years of age

Conduct disorder 9-14 years of age

Psychosis Late teens – early twenties

Anxiety disorders 25-45 years of age

Mood disorders 25-45 years of age

(adapted from Kessler et al, 2007)

Vulnerable groups in Bradford’s population In every child’s history and circumstances there will be factors which may help to build emotional resilience and protect them against mental health difficulties (‘protective’ factors), or others which, conversely, may make future problems more likely (‘risk’ factors). We also know that certain groups of children are much more likely to experience mental health difficulties than the population at large.vi Figure 3: Specific vulnerable groups within Bradford’s population

HLT&CHI28NovDocAapp1final_draft Page 18 8 Vulnerable Groups Situation in Bradford

Children with learning A recent needs assessment identified 19,219 children and young people difficulties and with a SEN or disability. For just over 50% (9,940 children) this need disabilities related to learning. Our local Children and Young People’s Health and Lifestyle Survey (2013) found that children with SEN were more likely to have low self-esteem.

Refugee and asylum There are small groups of asylum seekers and refugees who come to seekers the district who have very high levels of need, including mental health needs. Refugees are about ten times more likely than the age- matched general population to have post-traumatic stress disorder (PTSD): 9% of refugees in general and 11% of children and adolescents have PTSD. 7 Children with chronic Bradford has the highest prevalence of children in the region with physical health problems complex medical conditions considered ‘life limiting’ – there were estimated to be 595 such children in Bradford in 2011 (Fraser, 2011). 335 children are currently receiving support through the Children with Complex Health and Disabilities team.

Lesbian, gay, bi-sexual There are no officially available statistics on the numbers of LGBT young and transgender (LGBT) people in Bradford. Between 5% and 7% of the adult population are young people estimated to be LGBT – this would equate to 1,750 out of the 35,000 15- 19 year olds in Bradford.

In 2017 Bradford was responsible for 925 Looked-After Children 8. The rate of Looked-After Children per 10,000 children aged under 18 is Looked-After Children similar to the Yorkshire and Humber average. Both rates show an increase from 2016.

Children and young In 2015/16 the rate of children and young people entering the Youth people in the criminal Justice System for the first time was 425 per 100,000. This was a decrease justice system from the previous two years but above the average of 397 for all English 9 metropolitan boroughs.

Children with Autism In 2013 local GP data showed that 1061 children (0-18 year olds) were recorded as autistic on the GP clinical system. By 2017 this has increased to 1896 (nearly 80% increase). Children from BME Black and minority ethnic groups have the youngest age profile, with backgrounds 65.8% under 25 years of age. Of the South Asian ethnic groups, the Bangladeshi ethnic group has the youngest age profile - 42.2% are under 16 years of age and 57.4% under 24 years of age . We also have new young age residents from Eastern Europe 10 .

HLT&CHI28NovDocAapp1final_draft Page 19 9 Recommendations of the Health Needs Assessment The health needs assessment for Children and Young People’s Mental Health makes the following recommendations:

1. To review and redesign services to provide maximum capacity in community and school- based interventions, protecting the capacity within specialist CAMHS and responding to what children and young people tell us about their ideal services (Future in Mind: Schools Engagement work stream).

2. To continue to support and expand workforce development and the ‘skilling up’ of workers in universal services who have day-to-day contact with children, for example through the CAMHS training programme for GP practices and school nurses (Future in Mind: Workforce Development work stream).

3. To continue to promote the role of schools in supporting children’s mental health and emotional wellbeing, and as potential direct commissioners of services (Future in Mind: Schools Engagement work stream).

4. To consider the potential of other professionals and organisations to extend the services they offer to meet need, for example VCS organisations, school nursing.

5. To plan and deliver a mental health promotion strategy for children and young people through schools and community settings (Future in Mind: Schools Engagement work stream).

6. To ensure that support for children who present with behavioural difficulties is considered as an integral part of the overall system for children’s emotional wellbeing and mental health (Future in Mind: Schools Engagement work stream).

7. To continue to design services in ways that support access for children and young people from black and minority ethnic (BME) communities, particularly the South Asian community and the growing Eastern European community.

8. To create strong links between children’s mental health services, early years’ services and parenting and family support.

9. To consider representation from health visitors or other early years services at the Mental Health Matters in Schools group.

HLT&CHI28NovDocAapp1final_draft Page 20 10 4. Engagement and involvement The development of our children and young people’s mental health transformation plan was informed by consultation with a number of key stakeholders including, most importantly, the involvement of children, young people and their families. There has also been involvement from schools, the local authority, health commissioners and providers, voluntary and community sector (VCS) and specialised commissioning colleagues. Involvement with the local Crisis Care Concordat planning group has also been important in establishing the needs of young people within this agenda. A survey of schools in the area has been undertaken to inform the process with regard to local access and experience of mental health services overall. This informs both this transformation plan and our overarching children and young people’s mental health commissioning strategy. We have sought the views of children, young people and their families through the CCGs’ ‘Grass Roots’ system, 11 the People’s Board, engagement events with young people about self care and mental wellbeing, consultation with young people who accessed Children and Adolescent Mental Health Services (CAMHS) and psychological therapies, work with local schools, youth and arts projects, work with GP practices and universities, work with young women and children and young people from vulnerable groups, and discussions with parents and carers. We will continue to involve children, young people and their families in the co-production of our plans and services throughout the transformation that we plan. North Yorkshire County Council has co-ordinated additional activities covering the Craven area including The Voice, Influence and Participation team (VIP) to facilitate opportunities for Looked After Children and care leavers (Young People’s Council), and Flying High for young adults with Learning Difficulties and Disabilities to meet on a regular basis to seek their views and thoughts on services which affect them in North Yorkshire including mental health services. Details of engagement and participation in North Yorkshire are in Appendix 2. The main themes identified from our engagement to date are:

• Communication • Access to services • Experience of services

Providers Schools and colleges were seen as core to providing services, with the information, support and direction offered by non-academic staff such as mentors, school nurse and even peer support leaders seen as determining factors in people choosing to access services. The importance of support available during waiting times was highlighted and the role of community support, family involvement was central during this period. The importance of working with voluntary and community groups in helping young people to understand and access appropriate early support was underlined. They also played a vital role in involving the family and providing carer support. Local Transformation Plan summary for children and young people, parents and carers (Appendix 3)

HLT&CHI28NovDocAapp1final_draft Page 21 11 During early 2016 Barnardo’s worked with groups of children and young people to develop a version of the Local Transformation Plan that clearly outlines its background and key elements. The summary is succinct and engaging, and has now been approved for publication through the Future in Mind governance structure. It provides clear information about our plans to this most important audience. Youth Voice event August 2016 (Appendix 4) The Youth Voice event involved children and young people with experience of accessing mental health services, and some parents. It provided an opportunity to ask commissioners and providers about service developments in health and education and influence developments. The views expressed supported information given during previous engagement that some children and young people might hesitate to approach a GP or school nurse about mental wellbeing issues. They also confirmed the overriding importance of being able to access staff with whom they felt comfortable. Young people’s #selfcareeverywhere work Children and young people lead a series of workshops and events to explore the experience and service needs of mental wellbeing and physical health services. The workshops enabled young people to work with schools, local authority, NHS staff and commissioners to shape developments for mental and physical health services. Key areas of exploration included long term conditions, body image, self-esteem, confidence, mental health crisis services, stigma and discrimination and having positive relationships. Youth in Mind As we have developed new services as part of our Future in Mind transformation plans, including the establishment of Safer Spaces, Health Buddies and digital tools, we have constantly involved young people in the development. Films and case studies from the work have been shared.

HLT&CHI28NovDocAapp1final_draft Page 22 12 5. Promoting resilience, prevention and early intervention (Wellbeing)

Schools Engagement Children and young people told us: “All staff should be confident in their ability to spot and support emotional and mental health issues. Workers we have day to day contact with and who we trust need to have these skills to help us. It is not good enough to just have individual specialist workers that cover a wide area. These workers have no chance of providing all the support needed.” Planned changes 2015-2020

Develop and implement a collaborative commissioning model with consistent reporting mechanisms and governance structures.

Future in Mind forms an integral part of the governance structure for mental wellbeing in Bradford district and Craven. This structure is reproduced at Appendix 5.

Services working in schools will focus on early intervention and the development of a workforce that can promote resilience and self care.

The Healthy Child Programme (Craven) and school nurses (Bradford) have been providing low level mental health input and have been working in partnership with Primary Mental Health Workers to manage young people’s mental health problems at the lowest level. There is now a School Nursing lead for Mental Health. The Mental Health Matters in Schools group has been reconvened to provide a forum for commissioners, providers and school staff. It reports to the Future in Mind Project Group. In addition to the Mental Health Champions project, CBMDC Early Help links with schools to provide access to an appropriate level of social care with input from Primary Mental Health Workers where this is indicated.

PMHWs will be clustered to schools acting as the link to the pathway for support and advice in relation to children and young people’s emotional health and wellbeing. They will work alongside universal services such as health visitors and school nurses being visible in the community offering support and advice to ensure care and support is offered at the right level and at the right time in the right place. PMHWs will facilitate the signposting and transition onto more intensive support in specialist CAMHS or signposting into community-based voluntary services.

Primary Mental Health Workers (PMHWs) continue to work in schools liaising with School Nurses and other staff.

Extend access to WRAP, which has been successfully implemented with children and young people to help manage mental health problems through a solution-based focus . 12

The Wellness Recovery Action Planning ‘WRAP’ programme was developed to support adults to mental wellbeing. In Bradford WRAP has been developed to provide a self-designed prevention and wellness process that all children and young people can use to get well, stay well and make their life the way they want it to be. It has been piloted through Barnardo’s and has had good initial feedback.

HLT&CHI28NovDocAapp1final_draft Page 23 13 Establish Mental Health Champions in schools.

A plan to establish a network of Mental Health Champions in schools has been agreed to build capacity and confidence to address mental health in schools, develop and provide resources and guidance to school staff, parents and community partners, facilitate multi-agency work and enable swift access to specialist CAMHS professionals. The Mental Health Champions will increase capacity to meet low level mental health needs in the school environment and facilitate referral to other services including specialist CAMHS when appropriate. Budget, staffing and lead roles have been agreed. Schools in the Craven area have been invited to participate in the project.

- 86 schools attended Mental Health Champions Launch Conference in February 2017. - 67 schools have signed up for Mental Health Champions Initiative. - 67 schools have attended the Mental Health Champions’ Network Meetings. - Over 50 schools have accessed Living Life to the Full training and licence requests are being processed. This is a PHE recommended intervention. Evaluations have been 100% good or very good for impact of support provided via network meetings to support Mental Health Champions to support pupils in schools. It is estimated that each Mental Health Champion will provide targeted support to at least 10 pupils experiencing mental health difficulties or distress. This equates to involvement and impact for 670 children and young people across Bradford. In addition to accessing specialist support from the Educational Psychology Team and CAMHS via shared supervision at network meetings, Mental Health Champions in schools are delivering psychoeducation themed assemblies for pupils with the aim of giving information, exploring self-help strategies, reducing stigma and signposting support The potential impact on all pupils attending project schools was identified through informal pupil feedback forms and informal response from Mental Health Champions delivering the assemblies as:

- Collecting information on pupils who self harm - Delivering robust and culturally sensitive information to pupils and parents about self harm - Using a consistent LA wide approach to addressing self harm - Supporting parents to have difficult conversations with pupils - Ensuring that pupils have access to appropriate psychoeducational resources about a range of mental health matters, including ‘Getting Through Tough Times’ Attendance at community events such as the 2017 Dragon Boat Festival) and the Bradford Mela helps establish community presence, raises awareness and gives the opportunity to engage with the public, including parents and young people, across a range of contexts. A task and finish group has been established; one task will be to build in monitoring systems to provide more detail on numbers accessing the resource. Links have been established with CAMHS for training and built into the programme for the academic year. The project is working to establish links with parents, carers and pupils in planning and delivery by exploring existing participation system, holding a stall at young person’s engagement event on 18th November and circulating a questionnaire to collect views. Responses are currently being collated.

HLT&CHI28NovDocAapp1final_draft Page 24 14 Momentum for Mental Health Champions has bee n maintained during a change in coordination of the project and two further meetings took place in October. Barnardo’s and ‘Yoomee’ have been commissioned to develop a website with information and advice for young people navigating adolescence, with signposting to services and real stories. This website, Thrive Bradford , is now live, providing information to young people on mental health and wellbeing matters and on local services available. A campaign to publicise the site is complete and usage is being monitored. Outcomes • Continued attendance by school Mental Health Champions and positive evaluations of meetings. • Website launched. • Press article promoting the initiative and supporting the agenda of de-stigmatising mental health. 13 • Assemblies available and pupil evaluation available. • Self harm protocol agreed and shared. Challenges • Project evaluation including measure of usefulness of resources (planned focus of Delivery Group). • Inclusion of parent and pupil engagement in planning and delivery. • Extension of offer to wider group of schools. • Reduced allocation of time from Educational Psychology Team has been allocated to the project. • Long-term sustainability of project.

Craven: North Yorkshire School Mental Health Project (Compass Buzz) The project went live on 1 st April 2017. Initially monthly meetings are being held to keep abreast of implementation and when established, the meetings will be changed to quarterly. The project aims to improve and strengthen the support for children and young people’s emotional and mental health issues across all schools in North Yorkshire. Further details on the service commissioned are outlined in the service specification and the project implementation report for April (embedded below). The project plan from the provider is also included below. A key risk for the project is the large geographical area the project will have to cover and service will be offered based on need. The providers plan to complete an audit of schools to identify where the need is. Key Actions completed by Compass to date (October 2017):

Number of North Yorkshire schools who have accessed Level 1 training 10 Number of staff who have accessed Level 1 training 275 Number of staff reporting increased confidence following training 128*

*105 evaluation forms have not been included as they remain to be analysed. In additional to these school staff 28 key partners (Prevention staff and NYCC No Wrong Door staff) have completed the Level 1 training with Compass BUZZ. Airedale, Wharfedale and Craven CCG commissioners receive papers for Compass contract management meetings and are fully informed of progress.

HLT&CHI28NovDocAapp1final_draft Page 25 15 Single point of access Children and young people told us they wanted: “someone we can trust,” “access to speak to someone when I need to,” “to be able to book an appointment if I need to in the same week.” Planned changes 2015-2020

Early Help Hubs provide access to care services for families with additional support needs.

The Early Help hubs have been piloted and extended across the CBMDC district. Through Future in Mind investment, Primary Mental Health Workers have been appointed into the Hubs and panels which identify the most appropriate pathway for each family.

Provide single point of access for urgent and emergency mental health needs

The First Response service provides a single point of access 24 hours a day for referrals including self- referrals for urgent and emergency mental health needs for children and young people.

HLT&CHI28NovDocAapp1final_draft Page 26 16 6. Improving access to effective support: a system without tiers

CAMHS

Specialist CAMHS In 2016/2017 1881 referrals were accepted into CAMHS and the active caseload was 2005 at 31 August 2017. Pathway review and transformation is taking place working alongside Youth in Mind with a focus on improving access and growing the workforce.

CAMHS waiting times The buddying project to support young people and reduce waiting list numbers expects to support 500 young people during 2017/18. At 30 September 2017 there were 570 children and young people on the CAMHS waiting list, a reduction of 211 from 781 at the end of September 2016.

Page 27 Page At 30 September 2017 the average waiting time from referral to treatment was 106.8 days, a reduction of 14.5 days from the average of 121.3 at the end of September 2016.

Latest Numbers on CYP Baseline position Quarter 3 reduction Quarter 4 reduction Quarter 1 reduction Quarter 2 reduction under 18 on 30/09/16 known 31/12/2016 31/03/2017 waiting list 30/06/2017 30/09/2017 30/09/17 Planned Actual Planned Actual Planned Actual Planned Actual

Total number of 211 (570 10 (771 40 (741 252 (529 CYP waiting for 781 570 78 -19 waiting) waiting) waiting) waiting) treatment Average waiting 14.5 (ave 1.3 (ave 6.3 (ave 15.5 (ave time from is 106.8) 121.3 106.8 time is 2.1 time is 4.9 time is referral to 120) 115) 105.8) treatment (days)

HLT&CHI28NovDocAapp1final_draft 17 Q2 2016/17 Q3 2016/17 Q4 2016/17 Q1 2017/18 Q2 2017/18

Number of children and young people referred 616 708 837 691 469 in quarter Average waiting time from referral to treatment 121.3 119.2 116.4 105.8 106.8 (days) Number of CYP waiting for treatment for 4 - 6 48 60 58 47 30 weeks % waiting for 4 -6 weeks 2.1% 2.6% 2.4% 2.1% 1.4% Number of CYP waiting for treatment for 6 - 8 44 55 69 54 39 weeks % waiting for 6 - 8 weeks 1.9% 2.3% 2.8% 2.4% 1.8%

Page 28 Page Number of CYP waiting for treatment for 8 - 10 34 36 50 38 33 weeks % waiting for 8 - 10 weeks 1.5% 1.5% 2.0% 1.7% 1.6% Number of CYP waiting for treatment for more 488 412 439 245 332 than 12 weeks % waiting more than 12 weeks 21.6% 17.6% 18.0% 11.1% 15.7%

HLT&CHI28NovDocAapp1final_draft 18 Buddy Scheme Trained ‘buddies’ will be allocated to children and young people on waiting lists for specialist mental health services. The buddies will maintain contact with and support young people until specialist therapy can begin. We anticipate that this will reduce the number of appointments that are not attended, improve use of clinical time and therefore reduce the lengths of waits. The project is based on a proposal originating with children and young people who worked with Barnardo’s during 2015/16. Since launch in April 2017 CAMHS have referred 227 young people to the Buddy Scheme. In quarter 2, onward referrals started being made to Youth in Mind partners; 4 referrals to Yorkshire Mentoring for ongoing one to one support with volunteer mentors, 40 referrals made to Barnardo’s for 10-week WRAP group programmes being run at 5 venues across the district. MYMUP Version 2 has launched; giving access to a wide range of online interventions that promote resilience, empowerment, life skills and self-care. The updated system produces comprehensive reports detailing engagement and distance-travelled. MYMUP are providing targeted one to one support around use of the digital platform; consequently there has been a surge in engagement with online interventions and profile-building. All partners submit quarterly reports detailing progress with KPIs. The steering group meetings 3- weekly to efficiently track progress, identify and address challenges and ensure the model remains responsive and adaptable to changing need. Summary data for quarter 2 has been submitted for Buddies and WRAP. Quarter 2 data for Yorkshire Mentoring and MYMUP to be submitted end of October 2017.

Partners are working closely to build trusting relationships, streamline referral pathways and embed the model. At a recent full service event, attended by 60 members of staff from all partners; CAMHS, Youth Service, Yorkshire Mentoring, MYMUP and Barnardo’s, successes were shared and celebrated, challenges addressed and forward planning put in place. Additionally, partners meet one to one, attend each other’s team meetings, arrange locality based multi-agency lunch breaks and co-train to continue shared learning and relationship-building. Buddies currently accept Wave 1 and 2 referrals, targeting CAMHS wait times for treatment and initial assessment, respectively. Furthermore, the flexibility and adaptability of the model allowed for an unanticipated cohort of referrals from CAMHS, of young people already receiving treatment. Buddies support this cohort in partnership with allocated CAMHS practitioners to target the reduction of DNAs and impact waiting times by facilitating move on from specialist CAMHS. The model will open to Wave 3 referrals in quarter 3; initial plans in place to target schools with support from Sharing Voices Bradford to address underrepresentation of referrals from BME backgrounds.

The model is currently based on 5 virtual access hubs across the Bradford District and Craven; preliminary plans are in place for a crisis café in Holmewood that will be the first physical hub, offering crisis support but with a strong focus on building resilience and promoting emotional wellbeing, to reduce the need for crisis services. Buddies provide support with building resilience, learning self-care techniques, reducing barriers to accessing local community-based services and activities, exploring interests and hobbies, building

HLT&CHI28NovDocAapp1final_draft Page 29 support networks, becoming more physically and socially active, getting back into education, engaging with other professionals and services and much more.

CAMHS Tier 4:

Spend and activity

The National Specialised Commissioning Oversight Group (SCOG) decided in March 2016, that a single national procurement would not be in the best interest of patients and the approach taken would need to strengthen the requirement for regional planning and delivery. It would need to align with, and support the move to population based commissioning and the outputs of this work would need to be embedded in local systems. To reflect this, NHS England revised its approach to one of local ownership and delivery under the umbrella of national co-ordination and oversight and is now referred to as the Mental Health Service Review (MHSR) programme. A key factor and driver in the service review has been a lack of capacity in some areas that has led to out of area placements. The proposed changes in bed numbers aim to address this and ensure that for the majority of services, the right number of beds are available to meet local demand in each area. It is predicated on the principle that there is regard to patient flows so each local area should

HLT&CHI28NovDocAapp1final_draft Page 30 “consume its own smoke”. As these services are specialist in nature, there is national oversight of this process but with a strong emphasis on local engagement and ownership. The implementation of local plans will see the re-distribution of beds across the country so patients will be able to access services closer to home rather than having to travel to access appropriate services, except for a few particularly specialist services that it is uneconomic to provide in each area. NHS England is collaborating with local commissioners on the CAMHS Tier 4 bed changes in Yorkshire and the Humber to ensure the interdependencies between localities are managed effectively.

Expected reduction in admissions Investment in First Response Service and expansion of Intensive Home Treatment as an all age service (working with CAMHS out of hours service) will have an impact on use of Tier 4. Also the development of the Safe Space through the West Yorkshire UAE Vanguard as an alternative placement in order to de-escalate crisis presentations will have a positive impact on use of Tier 4.

Crisis intervention First Response Service developed as an all age open access crisis response service operational on a 24/7 basis. It has had a positive impact on Adult Mental Health reducing OOA placements to zero for 18 months. With access to age appropriate First Response Service, Intensive Home Treatment and Safe Space we anticipate a similar impact in Children and Young People’s Mental Health.

Eating disorders Further development of the specialist eating disorder and Intensive Home Treatment service (formerly known as SPEEDIHT) will reduce the need for inpatient treatment of eating disorders establishing a dedicated team of professionals to deliver home based packages of care.

Children and young people with Learning Disabilities BEST project in Bradford has been successful in providing timely assessment for children and young people with Learning Disabilities and has prevented escalation of crises to Tier 4. This service continues to be jointly commissioned between LA and CCGs. HLT&CHI28NovDocAapp1final_draft Page 31 New Care Models Bradford District Care Foundation Trust in partnership with Leeds and York Partnership Foundation Trust, Leeds Community Healthcare Trust and South West Yorkshire Partnership Foundation Trust have been successful in a bid to NHSE to be part of the CAMHS Tier 4 New Care Models programme. This will see the alliance take control of current spend on Tier 4 provision for our local areas with a view that we will transform the community offer to children and young people in crisis and look to reduce length of stay and use of tier 4 beds thus reinvesting in community services. We are adopting a Care Navigator approach across the locality providing robust gatekeeping, bed management and facilitating of pathways and transitions. We will also ensure that across our footprint children and young people will have consistent and robust access to crisis care and home treatment. Particular focus will be given to those young people who experience high levels of emotional distress and dysregulation, potentially from the Looked After system who can often become ‘stuck’ within the inpatient estate. Across the alliance we are establishing a clinical network of experts to look at developing robust community pathways for this group of young people. The pilot is set to mobilise in October 17 lasting for 2 years. Across Bradford we will look to refocus our offer of Home Treatment to young people at the point of crisis utilising both existing capacity and also reinvestment via the New Care Model successes. Key activities across 18/19 and 19/20 are

• Identify senior clinical leadership and capacity to oversee service development and pathway management for Home Treatment • Embed the Care Navigator role into the local CAMHS pathway; creating networks, promoting best practice in managing young people in crisis across the CAMHS workforce • Re-align and ring-fence capacity within existing CAMHS creating clear job plans around Home Treatment thus increasing flexibility and capacity to offer enhanced/intensive support at home • Develop an offer of evidence based interventions available to young people in crisis and requiring home treatment to include the use of group based interventions • Develop a training strategy to support the delivery of interventions • Utilise New Care Models reinvestment to recruit additional staffing for Home Treatment from across the MDT will a breadth of skill mix acknowledging workforce challenges. This includes the recruitment of band 4 staff, PWP type roles and Allied Health Care Professionals. • Recruit Parent Support Worker; acknowledging the importance of Parental involvement and Parent specific support. Learning from the Rollercoaster Parent Support Group available in the North East.

HLT&CHI28NovDocAapp1final_draft Page 32 Early Intervention in Psychosis Bradford and its three CCGs have a fully commissioned and NICE Compliant EIP service in line with the Better Access and Waiting Time Standard. Additional investment to expand the age range and offer of interventions were agreed in April 2016 (separate to the Future in Mind transformation developments). A full recruitment plan has been implemented with staffing now all in place. The pathway is self-referral and can be accessed across all internal and external sources. The Service pathway is for age 14 upwards again in line with Better Access and Waiting time standards. EIP have 3 EIP practitioners co-located within specialist CAMHS embedding the pathway and ensuring referrals are expedited. The full BDCFT offer of EIP with fidelity to the model has been in place for 11 years including EIP practitioners being embedded within specialist CAMHS. In 2015 after the announcement of the Better Access and Waiting Time standard BDCFT completed a gap analysis based on the commissioning guidance to look at workforce and service development to provide a NICE compliant offer of service, expansion of the age range and ability to meet the waiting time target. All recruitment has now been realised and capacity for the 14-18 age range is protected. Additional Psychological therapy provision has been provided to offer the extension of service to the at risk mental state group (ARMS), again in line with the Better Access and Waiting Time Standard. The service reports in line with national requirements on the waiting time standards and have completed the EIP Network Self-Assessment. During Q2 2017/18 60 of 94 people who started treatment for a first episode of psychosis were treated within two weeks of referral. 14 The age range has been extended and the team has been fully recruited to meet the NICE requirements and are meeting the 50% Better Access waiting time standard.

HLT&CHI28NovDocAapp1final_draft Page 33 Crisis Care Children and young people told us: “No waiting list – we should get help when we need it. Not months down the line when we have to rake it all up again. More services that we trust and work with should be able to refer into specialist services such as CAMHS. GPs and school nurses are the referral route but some of us will not use these as we do not know them, they may be a community GP and know our family and we worry about confidentiality, so how do we get the help we need?” “When I need to talk, services should be made available.” Planned changes 2015-2020

Through development of an established intensive home treatment approach in the Bradford district and building on the success of the Crisis Care Concordat and First Response service, the transformation plan can help the service to reach any children and young people in crisis wherever and whenever they present, reducing inpatient admissions and providing care closer to home.

BDCFT CAMHS offer 24/7 cover to existing CAMHS clients via the CAMHS consultant on call 7 days per across the 24 hour period and CAMHS Community Mental Health Nurses at weekends 9am-5pm. The service responds to young people supported by CAMHS and requiring home treatment and to young people presenting at A&E following self harm. The 24/7 First Response Service (FRS) provides a co- ordinated point of access and response 24/7 for crisis referrals across all ages and is a direct access point for all professionals, children and young people and families. All interview panels for posts with the FRS include representatives from children’s and young people’s services. CAMHS specialist practitioners are being recruited through Future in Mind to ensure that the needs of children and young people are supported when in crisis across the 24 hour period. This includes specialists with autism and learning disabilities experience so that unnecessary escalation to admission can be avoided. The FRS ensures a response that is rapid and proportionate, and provides signposting to the most appropriate setting. First Response Service workforce

• 1.0 Band 7 Team Manager • 14 WTE Band 6 First Responders (3.0 WTE CYP) • 18 WTE Band 5 Tele-coaches (PWP qualification) • 6 WTE Band 7 Advanced Nurse Practitioners • 3.8 WTE Band 3 Support Workers

All FRS staff are beginning a period of induction and shadowing in CAMHS. This will offer FRS staff an opportunity to work alongside core CAMHS clinicians, understand the pathways and offer of interventions within the service. This will support relationships and smoothing of transitions for young people accessing the crisis pathway and ensure care is offered at the right time, in the right place by the right person. First Response Service activity Between January and July 2017 FRS offered triage and crisis assessment to 283 children and young people under 18.

HLT&CHI28NovDocAapp1final_draft Page 34 Youth in Mind Airedale, Wharfedale and Craven, Bradford City and Bradford Districts CCGs are working in partnership with Bradford District Care NHS Foundation Trust, Bradford Metropolitan District Council’s Youth Service and four VCS providers, Creative Support, MYMUP, Barnardo’s and Yorkshire Mentoring, to create an alternative offer to crisis through promoting resilience and emotional wellbeing, demonstrated by the following outcomes: • Improve access and quality care standards for CYP in crisis • Improved experience and quality of services for young people and their families in crisis • Treat people closer to home • Reduce unnecessary A&E attendance, police custody and Tier 4 / paediatric admissions for young people in emotional distress • Improve access to CAMHS, reduce DNA appointments and maximise workforce capacity by diverting Tier 1 & 2 information and signposting into VCS • Work more closely with the Early Help agenda, strengthen promotion of emotional wellbeing emotional resilience of children and young people in schools to shift away from crisis. Children and young people have been involved in all recruitment into CAMHS including the development of these recent initiatives (Safer Space, Buddy scheme) and assisting with research, branding and design of information. Safer Space A Safer Space is open 22:00 - 10:00 seven days a week, however, following requests from referral partners and young people, 6-month trial provision Mar-Sep 2017 was put in place for a 24hr Referral Coordinator and opening hours were extended to 19:00 - 10:00. During this time referrals increased considerably; 13 admissions October 2016 to March 2017, 35 admissions April to October2017. 65% of referrals over the latter period were made between 16:00 and 22:00. On average, young people arrive on site with 90 minutes of the initial referral enquiry. Primary referral pathways into Safer Spaces are First Response, CAMHS and the Local Authority’s Emergency Duty Team. Work is currently being undertaken to open the pathway further, to daytime Social Workers. Stakeholder engagement is ongoing with GPs, School Nurses, Mental Health Champions in schools and the VCS. Plans are in place to establish a firm, two-way referral pathway between Safer Space and Buddies, to support the integrated model. The Safer Space is staffed by 4 WTE mental health support staff, has a team of 3 regular relief support staff and 1 PT Project Manager. Support staff have significant, wide-ranging mental health experience with children and adults, on wards, in supported accommodation and community- based/outreach. Service-specific training is provided by the Local Authority and Bradford District Care NHS Foundation Trust. A joint training programme for Safer Spaces and Buddy Scheme partners is in place, supporting upskill of the workforce. CAMHS plan provide ongoing training and clinical group supervision around risk management and staff resilience and wellbeing. Additionally, third sector partners are providing training around LGBTQ Awareness and Dependency Reduction. Activity The Safer Space had 20 admissions 1st July - 30th September 2017, a total of 46 admissions since opening. Monthly updates completed for the Safer Spaces Steering Group cover referral statistics, demographics, case studies, referral source, presenting needs, feedback and challenges.

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Participation by children and young people Consultation is provided by Barnardo’s Youth on Health Participation Group. The group provides guidance about service provision (referral pathways, opening times), physical environment, evaluation and involvement of service users and their families.

Perinatal mental health Building on CCG investment which was utilised to support the development of perinatal mental health pathways and training for professionals such as Midwives, Health Visitors and mental health providers to enable earlier detection and intervention for vulnerable individuals, Bradford District Care Foundation Trust were successful with their bid to NHSE for Perinatal Mental Health Community Development funding. This funding is being utilised to develop a specialized team to offer:

- specialised early assessment by a consultant perinatal psychiatrist - early and preventative interventions using a biopsychosocial approach - intensive intervention, specific care planning, a women- and family-centred approach - greater continuity of care so that the women’s families’ experience is one of a seamless service which is flexible to the needs of service users and families. The CCGs sponsored this proposal and will, subject to positive evaluation, continue to fund the service once the NHSE Community Development Fund allocation ends. Colleagues in Better Start Bradford (a Big Lottery funded programme working within Bradford) have developed a number of initiatives to support women with perinatal mental health issues. The CCGs are working with Better Start Bradford to learn from their projects with a view to mainstreaming evidence based practice which is proven to improve health outcomes in this area.

Autistic spectrum Access to FRS and IHTT is not restricted by condition. Children and young people with ASC, ADHD and other developmental disorders will have access to crisis intervention around the clock in the event of a mental health crisis. Work has also been undertaken to review the pathway for Neurodevelopment across the CCGs and Bradford District Care Trust. A new model and costings have been proposed.

HLT&CHI28NovDocAapp1final_draft Page 36

Eating disorders Children and young people told us: “People working with children and young people should know how to respond to eating disorders.”

Planned changes 2015-2020

Clients receive prompt access to a NICE-approved package of care

BDCFT CAMHS already has a well-established pathway to provide intensive care at home for children and young people with Eating Disorders. This service is recurrently funded by Airedale, Wharfedale and Craven CCG, Bradford City CCG and Bradford Districts CCG. To respond to the new Access and Waiting Time Standard to be implemented from April 2016, the service reviewed the current pathway and provision and completed a gap analysis of required provision and associated investment. The gap analysis identified a recruitment and workforce plan to expand and develop the service between 2015 and 2020, including recruitment of a team manager, dietitian, additional consultant psychiatry, psychological therapy and assistant psychologist. Recruitment to Eating Disorders service is partially complete and phased implementation is taking place. All referrals are being seen within the better access and waiting time standard. Information systems are in place to measure waiting times and NICE-concordant interventions in line with commissioning guidance. The Community Eating Disorders service is affiliated to the QNCC / CCQI. Additionally as part of CYPIAPT development outcome measures related to evaluating interventions for Eating Disorders are being added to the RiO system. The team have developed their clinical pathway in line with The Maudsley model and clinical pathway. This includes mapping outcome measures and qualitative feedback tools to support ongoing service development. The team are delivering training to the wider workforce and supporting early detection and identification within schools via the MH Champions in Schools Project and Workforce Training plan with Sue Sykes. Junior MARSIPAN groups are in operation across the Acute Hospital Sites led by ED Consultants and Paediatrician. The Children and Young People’s Eating Disorders service is affiliated to the Royal College of Psychiatry (RCPSych) Centre for Quality Improvement (CCQI) and Quality Network for Community CAMHS (QNCC).

Activity From October 2016 –October 2017 there has been 83 new referrals. This is exceeding predicted referral rates and trajectory is being monitored across 17/18 for review with commissioners in 18/19. There is an active caseload of 86 clients.

HLT&CHI28NovDocAapp1final_draft Page 37 Workforce The team staffing structure has been developed in line with the commissioning guidance and consists of:

Role WTE Additional Skill set, Offer & training Consultant Psychiatry 1.1 Multi Systemic Family Therapy Team Manager/Nurse 1 Specialist ED Nurse 2.6 CYPIAPT Family Thearpy for ED Support Worker 1 Evidence Based Practice Module CYPIAPT, Phlebotomy Specialist ED Dietctian 0.6 Family Therapist 1.8 Supervisior for FT. CBT 1 Also Nurse by background. Clinical Psychologist 1 CBT & FT skills. Assistant Paychologist 1 Team Admin 1

HLT&CHI28NovDocAapp1final_draft Page 38 7. Caring for the most vulnerable: Vulnerable Groups Children and young people told us: “You feel left out and isolated at school and in lessons. You get left behind because you cannot keep up and teachers are not bothered about this as long as you do not cause trouble. If you are quiet and struggling you do not get noticed.” “People pick on me because of my condition so I don’t go to school. Make it safe and I will go. Bullying is massive in schools. It is more online now and it is hard for schools to control. This leaves us scared, unsafe and vulnerable.” Planned changes 2015-2020

To establish specialist mental health workers with looked after children teams to promote seamless access to services. 15

CCG funding was agreed for £186,000 per year for 5 years in addition to the existing provision of 2.6 WTE (Whole Time Equivalent) Psychological Therapists. These funds have been used to create four new additional WTE posts. In addition, CBMDC Be Positive Pathways Programme will fund a Speech and Language Therapist, an Occupational Therapist and Life Coaches. Appointees are expected to be in post at the beginning of December and the model is expected to be fully operational from 1 January 2018. They will work with the wider multi-agency Be Positive Programme. The role is to work closely with teenagers at the edge of care or in care and is based on North Yorkshire ‘No Wrong Door Model’. Working in a therapeutic way based within the 3 of the Bradford Specialist Children’s Homes. Referrals will be made by the Social Workers. Access has been improved through the addition of a Consultation Clinic model that is available to all, regardless of presentation or severity of need. The broader range of therapists and therapies on offer means that the most appropriate therapeutic approach can be considered based on client need rather than service availability. Therapies offered by the members in team include Art Psychotherapy, Cognitive Behaviour Therapy, Dyadic Developmental Psychotherapy, EMDR, Filial Therapy, Family Therapy, Play Therapy, Solution Focussed Therapy, Theraplay, and Therapeutic Parenting. The team is composed of: - Clinical Lead – Clinical Psychologist (0.71) - Art Therapist (0.80) - Assistant Psychologist (1.00) - Clinical Psychologist (1.00) - Play Therapist (0.40) - Play Therapist (0.50) - Psychological Therapist (1.00) - Therapeutic Social Workers (2.7) (Assimilation into the team to be complete by July 2017) - Psychological Therapists (1.2) To align Primary Mental Health Worker capacity with child sexual exploitation services to provide access to young people who have suffered sexual abuse. 16, 17

The Child Sexual Exploitation hub liaises with CAMHS specialist workers to advise on cases relating to children who are victims of grooming and other exploitation as they are unlikely to take

HLT&CHI28NovDocAapp1final_draft Page 39 up mainst ream ser vices.

To establish services for children and young people who do not access schools or education and may be vulnerable through homelessness or falling in with bad crowds or gangs. 18

The Youth Offending Team accesses a dedicated CAMHS nurse and consultant psychiatry time.

To develop links with statutory and voluntary Autism Services to promote interventions after diagnosis

Two transition nurses are based in CAMHS for Autistic Spectrum Disorder and Learning Disabilities.

Provide specialist programmes to meet the mental health care needs of refugee and asylum- seeking children

Bevan Healthcare are in the second year of their children and young person’s mental health programme, and are delivering a number of schemes to engage with the mental health and psychological support needs of refugee and asylum seeking children in Bradford. The one-to-one counselling sessions have been extremely successful with 30 children seen and discharged, receiving positive feedback from both schools and families. The antenatal programme engaged 28 women in the first year, and due to changes in the allocated midwife for BHC and the renovation work to the group wellbeing space, the next round is due to start at the end of this month (Nov 17). 39 children attend the After School Club in the Wellbeing Centre, offering educational and socialisation support for refugee and asylum seeking children between 5-12 years old, run by qualified teachers who volunteer their time. The Country Trust has partnered with us in taking 57 children and their parents on Farm Experience Days at Gazegill Organic Farm; here children are able to experience the British countryside, learn about animals and utilize English language skills. During the summer, Bradford City Community Foundation provided two days of football coaching sessions to unaccompanied asylum seekers between 14-17 years old, with some accompanied children also involved. The main challenges for the service relate to being able demonstrate quantitatively the change made through these structures of mental health support, though the service often makes use of more qualitative mechanisms including case studies and interviews. Bevan Healthcare have been looking to partner with a locally-based children’s mental health organisation as previously we have worked with CHUMS based in Bedford and this distance has proved challenging. Thus far, we have been unable find an organisation with the capacity to work with us to provide more group-based psychological therapies. Issues with language barriers are eased by the use of high quality interpreters provided by Enable2, though we continue to grapple with the concept of ‘mental health’ which often comes as a foreign concept or with associated stigmatisation – this can often require significant input whilst trying to engage a family or child initially. Timely and appropriate levels of care can be seen as a challenge, with considerable waiting lists for CAMHS. Reimbursement of travel costs is also a significant issue which can often secure attendance and engagement for these vulnerable groups.

HLT&CHI28NovDocAapp1final_draft Page 40 Activity for the Looked After and Adopted Children’s Team Direct Clinical Work Referrals for Direct Work can be made from Social Workers, School/LAC Nurses, GPs and Paediatricians. The LAAC Team received 59 referrals for direct work from the 1 st November 2016 to the 30 th April 2017; the breakdown of this is shown in Table 1. Twenty-seven of these were accepted for consultation in the LAAC consultation clinic and twelve were redirected to other services. Twenty referrals into the LAAC team were accepted for assessment.

Table 1. Direct Referral Information 1st November 2016 -30 th April 2017 Total Number of Referrals for Direct Work 59 Number of Referrals Accepted for Assessment 20 Referrals Redirected to Other Services 12 Referrals Accepted for Consultation Only 27

1st November 2016 -30 th April 2017 (Number of Sessions) No. % Assessments 96 17 Assessments for Therapy 45 47 Cognitive Assessments 9 9 MIM Assessments 2 2 Story Stem Assessments 0 0 Other Assessments 40 42 Therapy 356 62 Art Therapy 39 11 Dyadic Developmental Psychotherapy 19 5 Family Therapy 4 1 Filial Therapy 0 0 Individual Therapy 59 17 Other 71 20 Play Therapy 94 26 Therapeutic Parenting 70 20 Theraplay 0 0 LAC Reviews and Professionals’ Meetings 21 119

50 Assessments 45 Assessments for Therapy 40 Cognitive 35 Assessments 30 Therapy MIM 25 Assessments 20 Story Stem 15 Assessments LAC Reviews 10 and Other 5 Professionals Assessments 0 Meetings

Bar Chart displaying the number of different Pie Chart displaying the distribution of assessments completed by the LAAC team different sessions completed by the LAAC HLT&CHI28NovDocAapp1final_draft st th from the 1 st November 2016 to the 30 th April Page team41 from the 1 November 2016 to the 30 2017 April 2017

Indirect Clinical Work 1) Consultation Clinic The consultation clinic can be accessed by any professional or carer working with a looked after child, an adopted child, or a child on a Special Guardianship Order (SGO). The team offer 4-5 consultation slots per week, across Fieldhead and Hillbrook. These take place over an hour and a half and are usually offered by two members of the CAMHS-LAAC team. Consultations offer an opportunity to think in depth about a child’s difficulties or presentation, reflect on a child’s experiences and early development and draw on psychological expertise. They can also be utilised to think about the network of care around a child and to consider plans for the child with regard to home and school placements and psychological therapy needs.

Clinicians provide a written summary on the consultation for all attendees and all attendees are asked to complete a feedback form at the end of every consultation.

Breakdown of Consultation Data 1st Nov 2016 – 30 th April 2017 Number of consultations attended 58 Number of consultations cancelled 14 Number of cases discussed in Consultation Clinic 51 Number of cases attended for a second consultation 7 Total number of professionals and carers who attended 131

2) Children’s Home Staff Consultation Consultations were offered to all eight mainstream Local Authority Children’s Homes in Bradford District. In addition the team began offering consultation to a Children’s Home which also provides a Residential Service for children with Learning Disabilities from February 2017. These consultations were offered on a monthly basis. In total, 32 Children’s Home Consultations took place in the six month period. Two Child and Adolescent Psychotherapists also contribute to this service from the wider CAMHS team. Group Supervision for this work takes place monthly with Ben Lloyd (Head of psychological therapies in CAMHS).

Table 10. Number of Consultations delivered by the LAAC team to Children’s Homes in Bradford Children’s Home Number of Consultations Nov 2016 – April 2017 The Hollies 0 First Avenue 5 Meadowlea 6 Newholme 6 Owlthorpe 2 Rowan House 5 Sky View 4 Valley View 3 The Willows 1

3) Consultation to LAC Social Work Teams Consultation to LAC Social Workers took place monthly at Sir Henry Mitchell House. These 30- minute consultations slots offer an opportunity for the screening of cases that might need a direct referral into the LAAC Team. They can also offer support and advice at a general level. When a more in depth consultation is required to think psychologically about a child’s presentation or issues within the system around the child, social workers are encouraged to book into the CAMHS-LAAC Consultation Clinic (described above). Between 1 st November 2016 and 30 th April 2017, five consultation sessions took place at Sir Henry Mitchell House. During these sessions, a total of 25 young people were discussed. HLT&CHI28NovDocAapp1final_draft Page 42 8. Accountability and transparency Current position Nationally there is a challenge around the significant gaps in data and information, delays in the development of payment mechanisms and other incentives and the complexity of current commissioning arrangements With a number of providers and commissioners, it is difficult to get a consistent picture but there is opportunity and expectation we will do so through implementing the lead provider framework and reviewing data collected through the MHSDS. There is an opportunity to commission jointly with the appointment of a joint commissioner across the CCGs and the Local Authority. We have now established new governance and frameworks for reporting. Maintaining transparency and accountability through joint working with the People’s Board and the delivery group partners, will ensure shared understanding and learning. Priorities for change - Commissioner access to robust data on demand, activity and outcomes. - Analysis of data and measurement of Local Transformation Plan impact. - Effective joint commissioning to transform services and improve outcomes across Bradford district and Craven, with shared ambition, robust governance, and clear communication between commissioners, statutory and VCS providers. - Demand in schools for emotional support needs is not routinely monitored. Progress to date - Work stream outcomes, milestones and metrics drafted. - Children and Young People’s Mental Health Local Transformation Plan aligned with Sustainability and Transformation Plan (CCG), all-age mental wellbeing strategy (CCG) and B Positive Pathways (Local Authority). - Governance arrangements for implementation integrated with all-age mental wellbeing governance structure and delivery group. Planned changes 2015-2020 To es tabli sh l ead co mmiss ioner a rrangements across a ll s ervices Current commissioning governance arrangements are detailed at Appendix 5. To work with all services providing care for mental health and emotional wellbeing in preparation for incorporating the children and young people’s mental health minimum data set into MHSDS, including the establishment of data collection systems.

The main statutory provider is reporting against MHSDS. Data Quality in 8 of the 14 fields monitored by NHS Digital is above 95% in June 2017. 90% of records have a valid entry in Ethnic Category Code and only 2% of records have a valid entry in Primary Reason for Referral (31% in England).

As part of CYPIAPT much work has been done within Specialist CAMHS to promote and embed the use of Routine Outcome Measures. Significant amounts of work have gone into developing IT systems to ensure that outcome measures are available within the electronic patient record.

A navigable map of outcome measures has been developed guide clinicians in their use. IT systems have been developed to ensure that Routine Outcome Measures are available within the electronic patient record. An outcome measures champion has been identified by BDCFT. The outcomes measures champion will support the roll out of team training and education in the use of outcome measures for co-production, feedback and transparency.

HLT&CHI28NovDocAapp1final_draft Page 43 9. Developing the workforce Children and young people told us: “All workers (especially GPs and teachers) in contact with children and young people and families should have a better understanding and knowledge about emotional and mental health needs. Emotional and mental health training should be mandatory for all staff to be able to do their job and meet our needs.” “Someone I can relate to.” “Someone who understands.” “Someone who talks to you on a level that you are comfortable with.” “The right person.” “Everyone should be trained because if only one worker is trained then the young people may not feel comfortable with that worker and they would then have no-one else to go to that is knowledgeable enough to help.” Planned changes 2015-2020

New CAMHS Training programme

The journey begins with a CAMHS e-learning package of core universal emotional wellbeing education providing more staff with awareness of universal level actions that meet the well-being needs of children and young people. Content also covers when to contact colleagues who are competent in targeted approaches and who can support universal action. Following piloting of the draft package with key stakeholders, the final version is planned for launch within the wider workforce in November 2017. A new rolling programme of three ½ day face-to-face skills based courses will commence in December to follow-on from the e-learning using innovative whole systems tools to protect CYP emotional well-being and promote resilient relationships. With input from PMHWs, helpful practice will be learnt surrounding referral routes and supporting targeted approaches. Schools and vulnerable groups (looked after children and young people) settings are becoming increasingly interested in the tools. Finally, topic based CAMHS courses will continue to be a vital part of the programme with input from specialist CAMHS and voluntary sector partners e.g. Family Action and Barnardo’s. The NHS England Schools Competency Framework has informed the new multi-agency CAMHS programme by providing clear recommended activity for core competency groups working at a universal level within the setting. The e-learning will reach the areas of the workforce who traditionally have not accessed universal CAMHS training. The multi-agency offer of the CAMHS training programme will continue to ensure that good practice is shared among the wider Comprehensive CAMHS workforce.

Mental Health Champions/Schools Engagement

The school setting is where the schools engagement and workforce development work streams converge. The whole school approach is consistent with the whole systems approach of this CAMHS training programme and includes the well-being of staff. From November 2017, Mental Health Champions will receive the face-to-face training to inform the Senior Leadership Team and

HLT&CHI28NovDocAapp1final_draft Page 44 34 support access by their colleagues in the wider workforce. Collaboration with the Schools Engagement work stream has begun on a shared MHCs online platform to support practitioners in the wider workforce. Discussions have also begun for a more large scale audit of training needs.

Resilience Passport The Resilience Passport Pilot has been successful in securing charitable funding for the production of 50 passports. The Passport is a tool for use with pupils in year 5 approaching their SATS to help them develop helpful everyday habits and communication skills to meet their resilience needs including those surrounding cultural identity. The Passport uses an innovative well-being battery conceptualisation designed in partnership with the Barnardo’s Participation group including children and young people who continue to provide positive feedback on its usefulness. Training linked to the Passport focuses on how to use the tool in order to maximize the benefit to pupils on this emotionally demanding journey. A parental and staff well-being feature to the tool will support the use of the tool within the home as well as the workplace. Project management and evaluation is being undertaken in partnership with the BDCNHHSFT business support team – iCare. Roll-out is planned for June 2019 and will consider the use of the Passport for other significant life transitions such as entering and leaving care. Support to other work streams (Vulnerable Groups, Crisis Care and Eating Disorders) Training needs identified within Crisis Care have resulted in Safer Spaces staff joining the Buddies in receiving tailored topic based CAMHS training following previously delivered core competency training. Looked after children practitioners have benefited from tailored training in adolescent brain development and risk taking behaviour and will receive tailored self-harm training in October 2017. The training will support activities aimed at developing CYP resilience and will increase staff confidence. Discussions are underway with the eating disorders team to develop a universal training strategy to support early intervention activities. To extend roll out of CYPIAPT training to incorporate the voluntary and community sector, school nurses and counsellors with financial support from NHS England during Q3 and 4 2016/17. In Wave 6 The partnership are seeking to send 5 candidates from a breadth of services onto the evidence based practice module which will widen the skill set of the wider. Supervision will be provided by trained CYP IAPT supervisors within specialist CAMHS. To incorporate principles of CYPIAPT into workforce training programmes. To align workforce training programmes to ensure equal coverage and access to all providers of children’s services. BDCFT is currently mapping current pathways against NICE guidance to look at skill gaps. A workforce and training plan will be developed in response to this in early 2018.

Develop the CYP IAPT workforce

Bradford and Airedale were successful in applying for the fourth wave of children and young people’s improving access to psychological therapies (CYP IAPT), the training for which has been completed. Trainees have been recruited for this year’s CYP IAPT course. There is also an established programme of workforce development training in mental health delivered across schools and primary care with a dedicated programme coordinator. Specialist CAMHS services provided by Bradford District Care NHS Foundation Trust in partnership

HLT&CHI28NovDocAapp1final_draft Page 45 35 with Barnardo’s are members of the North West CYP IAPT collaborative. The partnership have been engaged since Wave 4 of the programme and have successfully trained 6 specialist CAMHS staff in CBT, Family Therapy and parenting. These skills are being utilized within specialist CAMHS services widening the offer of evidenced based interventions. In Wave 5 the partnership supported a voluntary sector organization in sending a member of their workforce on the CYPIAPT Programme with specialist CAMHS offering supervision and support throughout. The partnership are now targeting the wider workforce outside specialist CAMHS to address the need for skills and understanding around promoting emotional health and wellbeing at all levels thus ensuring that resilience is built and help is sought at the earliest stage. Wider CAMHS and VCS staff continue to be supported to access CYPIAPT training including: Evidence based practice: 2 colleagues from VCS services completed and practising, 2 Core CAMHS staff currently undertaking, 6 staff from across core CAMHS and VCS services are attending the next planned course. Service Lead Course: 3 core CAMHS managers have completed and 2 more managers are enrolled on the next course starting October 2017. Family Therapy for Eating Disorders: 1 Eating Disorders team member is enrolled on the course commencing January 2018. Routine outcome monitoring with improved supervision CYPIAPT outcome measure are being mapped to the clinical pathways alongside NICE guidelines for interventions. All core CYPIAPT outcome measures are now available on RIO. A set of core standards around the use of outcome measure are now in place. Staff are engaged in a rolling programme of training and support around the use of outcome measures to include the use within team meetings, case load management, supervision and appraisal. Outcomes Champions are in place across the Core CAMHS teams.

HLT&CHI28NovDocAapp1final_draft Page 46 36 CAMHS Workforce Page 47 Page

HLT&CHI28NovDocAapp1final_draft 37 Workforce planning BDCFT services will develop to extend provision originally focused on Adult Mental Health to work with specialists in Children and Young People’s Mental Health and extend access to people of all ages (crisis care), or to develop structures specific to children and young people (Schools Engagement, Vulnerable Groups), thus increasing the skill base and service access to children, young people and their families. This will maximize the contribution of the current workforce and extend access to skilled care to wider populations.

Service Staff group wte Timescale First Response (crisis) CAMHS specialist 3.0 August 2016 (complete) Eating Disorders Team manager Eating Disorders Dietitian Eating Disorders Consultant psychiatrist Eating Disorders Psychological therapy lead Eating Disorders Psychological therapist Eating Disorders Assistant psychologist Schools Engagement Primary Mental Health 4.0 Complete Workers (additional) Single Point of Access Primary Mental Health 2.4 Complete (Early Help Hubs) Workers Vulnerable Groups CAMHS social workers 3.0 Complete, ring-fenced from current workforce Vulnerable Groups Lead LAAC therapist 0.71 Complete Vulnerable Groups LA social workers tbd From current workforce, September 2016 Vulnerable Groups Psychological therapist 2.0 September 2016 Vulnerable Groups Assistant psychologist tbd September 2016 Schools Engagement Project administrator 0.5 tbd Schools Engagement Educational 0.3 (0.2 Future in tbd psychologist Mind, 0.1 core funding) Vulnerable Groups Primary Mental Health 0.4 Complete (CSE hub) Worker Vulnerable Groups Nurse specialist and 1.0 Complete (Youth Offending consultant psychiatry Team)

HLT&CHI28NovDocAapp1final_draft Page 48 38

10. Finance

Funding allocation 2016/17

Scheme Allocation Primary Mental Health Workers 352,000 Schools Links Project 91,000 Community Eating Disorder Service 298,000 Crisis Care 109,500 Model of therapeutic integrated care for vulnerable children and young people including LAAC 186,000 Single Point of Access: PMHWs appointed to Early Help Hubs and Panels 100,000 Total 1,136,500

Funding allocation 2017/18

Scheme Allocation Primary Mental Health Workers 350,000 Schools Links Project 91,000 Community Eating Disorder Service 298,000 Crisis Care 109,500 Model of therapeutic integrated care for vulnerable children and young people including LAAC 188,000 Craven (schools) 30,000 Bevan House 50,000 Other 20,500 Total 1,137,000

HLT&CHI28NovDocAapp1final_draft Page 49 39 11. Governance Commissioning governance arrangements are detailed at Appendix 5. The Future in Mind Project Delivery Board consists of commissioners (NHS and Local Authority including Public Health), contracting and engagement representatives, the principal statutory provider and representatives from schools and the VCS. Its role is to implement the Local Transformation Plan. It reports to the Joint Mental Health Commissioning Board, whose role is to provide strategic direction, monitor progress in implementing the plan, and perform a ‘scrutiny role’ for the oversight of service quality. The Mental Wellbeing Partnership Board is accountable to District-wide bodies representing both health and social care (Bradford Health and Social Care Commissioners, Health and Wellbeing Board). The Local Transformation Plan has a Programme Lead (Head of Mental Health Commissioning, CCGs and LA) and a Senior Responsible Officer (Director of Strategy, NHS Bradford Districts CCG). As well as reporting to the Joint Mental Health Commissioning Board it makes bi-monthly reports on risks and progress against milestones to the Programme Office of Bradford City and Bradford Districts CCGs and monthly reports to the Programme Office of Airedale, Wharfedale and Craven CCG. The programme milestones and risk register form Appendix 6 of this refreshed plan.

12. Measuring impact Local and national metrics are listed in Appendix 7. In addition to these overall metrics each work stream will develop and use indicators to monitor progress of implementation.

HLT&CHI28NovDocAapp1final_draft Page 50 40 13. APPENDICES

Appendix 1: Mental Wellbeing in Bradford district and Craven: a strategy 2016-2020

Mental wellbeing in Bradford District and Craven: a strategy 2016-2021 Or type the following address in to your browser http://www.bradforddistrictsccg.nhs.uk/seecmsfile/?id=1131

The easy read version of the strategy can be found here. Or type the following address in to your browser http://www.bradforddistrictsccg.nhs.uk/seecmsfile/?id=1184

HLT&CHI28NovDocAapp1final_draft Page 51 41 Appendix 2: Engagement with children and young people in North Yorkshire including Craven The Voice, Influence and Participation team (VIP) facilitate opportunities for looked after children and care leavers (Young People’s Council), and young adults with Learning Difficulties and Disabilities (Flying High) to meet on a regular basis to seek their views and thoughts on services which affect them in North Yorkshire The Flying high group have met with managers to look at ensuring CYP have access to therapists who know how to work with someone with a disability such as autism. They have also discussed the issue of older young people with SEND being asked to access CBT Mental Health services online and the difficulty of this for young people with visual impairment or learning disability. The Young People’s Council have met with Children’s Social Care Senior Managers to discuss how looked after young people and care leavers are supported by mental health services. The YPC also told looked after children health nurse managers about their experiences of being supported by their General Practitioners (GP’s). Their recommendations about what works well for them was fed back to GP’s. Members of the Youth Executive have shared their thoughts with the Health and Wellbeing Board in July 17 and have also met with senior managers from Tees, Esk and Wear Valley to see how they can work together to help support initiatives aimed at helping young people deal with mental health problems. The YPC and Flying High, along with representatives from other youth voice groups across the county, are represented on the North Yorkshire Youth Executive which was formed in February 2017 and which now meets to campaign on issues important to young people. Other groups represented -

• Harrogate and District NHS Foundation Trust - Young Peoples Panel • Harrogate Youth Council • LGBT+ • Military Kids Club • Police and Crime Commissioner - Young Peoples Panel • Young Advisors • Young Carers

The Youth Voice Executive are currently focussing on 3 topics, they are:

1. Developing Resilience and Emotional Wellbeing 2. Transport 3. Curriculum for Life

The VIP are supporting the running of both area youth voice groups and county wide meetings which will take place throughout the year, where young people can meet with others to work together locally and to meet with local mangers and senior decision makers. British Youth Parliament – to enable the views of young people in North Yorkshire to be heard regionally and nationally we also work with and support our 3 members of the youth parliament (MYPs) who meet regularly with other MYPs from across Yorkshire and the Humber and who attend the annual sitting in the House of Commons along with over 600 young people from across the United Kingdom in November each year. October 2017

HLT&CHI28NovDocAapp1final_draft Page 52 42 Appendix 3: Local Transformation Plan summary for children and young people, parents and carers

Appendix 4: Bradford Youth Voice event findings

HLT&CHI28NovDocAapp1final_draft Page 53 43 Appendix 5: Governance structure

Page 54 Page Strategicenablers

HLT&CHI28NovDocAapp1 44 Appendix 6: Outcomes and milestones Outcomes and milestones CYP1.0 Schools Liaison and Prevention Outcomes PMHWs provide specialist support working closely with school staff and children Increased awareness among schoolchildren and school staff of mental health and wellbeing Improved mental health and resilience for children and young people Reduction in stigma attached to mental health issues Schools are supported to identify children and young people at risk of mental health issues Children with low level need are supported in school environment Clear access routes to specialist services where need for these is identified Easier access to appointments Clearly defined roles with regard to MH responsibilities for staff groups in schools

Page 55 Page Choice of routes of access to mental health services School Nursing Mental Health lead with clearly defined role Implement relevant recommendations from School Nursing review Timescale Milestones CYP1.1 Clinical resource freed to contribute to work stream - complete Apr-16 CYP1.2 Reconvene Mental Health Matters in Schools Group - BMDC + key partners Jun-16 CYP1.3 Review MH promotion materials from other areas and develop action plan for production of materials to meet local needs CYP1.4 Go Live for Thrive Bradford website and publicity campaign Jun-16 CYP1.5 Identified mental health champion in every school to link into CAMHS Apr-16 CYP1.6 Identify relevant recommendations from School Nursing review Sep-16 CYP1.7 Every school to have access to a named school nurse: complete CYP1.8 Deliver self-harm strategies and prevention of self-harm in schools CYP1.9 Develop a mental health pathway for schools CYP1.10 Design One Stop Shop or Drop In facility to enable access for young people who cannot access statutory provision Mar-17 CYP1.11 Embed specialist workers with services for vulnerable children and young people (Looked After Children, Youth Offendi ng Teams): links with Special Needs schools complete. CAMHS also have direct links with YOT and Drug and Alcohol services for children and young people Mar-17

HLT&CHI28NovDocAapp1 45 CYP1.12 For referrals to CAMHS and VCS for children and young people, map sources of referrals and type of care need. Obtain intelligence on demographic of demand Dec-16 CYP1.13 Define referral routes to VCS providers CYP1.14 Ensure training and resources available to schools Mar-17 CYP1.15 Design processes for ongoing involvement in work stream development and implementation by children and young people Sep-16 CYP1.16 CYP IAPT available in schools Dec-17

CYP2.0 Single Point of Access Outcomes Need is identified as early as possible An appropriate level of support is provided at the earliest and most convenient opportunity Children and young people have access to one stop shops with staffing from a range of agencies

Page 56 Page Children and young people have access to an age-appropriate safe space People working with children and young people in a wide range of organisations can access training and advice Parents and families can access support and advice Clear pathways from Single Point of Access to services for different care needs and levels of acuity including specialist CAMHS Timescale Milestones CYP2.1 Implement Early Help Hub pilots in Keighley and East Bradford April 2016 CYP2.2 Evaluate Early Help Hub pilots CYP2.3 Identify learning from Early Help Hub pilots CYP2.4 Review Early Help Hub pilot model to identify elements supporting emotional wellbeing CYP2.5 Receive national guidance on Single Point of Access CYP2.6 Agreement on local Single Point of Access model

CYP3.0 First Response Service Timescale Milestones CYP3.1 Revised FRS service specification included in contract with BDCT CYP3.2 Recruit interim staff through agency Ongoing CYP3.3 Utilise existing resource to staff service pending recruitment to full team

HLT&CHI28NovDocAapp1 46 Novembe CYP3.4 Recruit specialists in children's and young people's mental health r 2016 CYP3.5 All FRS employees receive training in CYPMH Ongoing January CYP3.6 Align Children's IHT workers with Adult IHT 2017 CYP3.7 Co-locate LA Emergency Duty Team with FRS CYP3.8 Consider regional age appropriate s136 suite with other localities Septembe CYP3.9 Agree model for all-age Intensive Home Treatment service r 2017

CYP4.0 Community based Eating Disorders Outcomes Prompt access to care Clients receive NICE approved package of care

Page 57 Page Timescale Milestones CYP4.1 Complete team by recruitment to posts Sep-16 CYP4.2 Full service operational Mar-17 CYP4.3 Communication with stakeholders (roadshows, events with GPs) Mar-17 CYP4.4 Report against waiting times standards by Q1 1617 Mar-17 CYP4.5 Direct access and self-referral to service Mar-20

CYP5.0 Vulnerable Groups Timescale Milestones CYP5.1 Submit proposal for Specialist Looked After and Adopted Children team Complete CYP5.2 Revise proposal with reference to allocated budget Complete CYP5.3 Decision on whether to progress project Complete CYP5.4 Utilise existing resource to staff service pending recruitment to full team Ongoing March CYP5.5 Recruit to specialist team of therapists 2017 CYP5.6 Develop service to provide extended support for looked after children identified as vulnerable March

HLT&CHI28NovDocAapp1 47 2017 CYP5.7 Align with specialist services from CYP MH provision to provide specialist support where need is identified CYP5.8 Identify services towards other vulnerable groups

CYP6.0 Transparency and accountability Outcomes MHSDS data of an agreed level of data quality is available to eMBED analysis team Reports derived from MHSDS data are available to contract management forums Data from Social Care and Education is available to inform service design and client outcome monitoring Timescale Milestones CYP6.1 Map information available for Social Care and Education Jun-16 CYP6.2 Identify any obstacles to availability of Social Care and Education data Jun-16

Page 58 Page CYP6.3 Providers commence reporting against MHSDS - complete Jan-16 CYP6.4 HSCIC publish provider level DQ reports - complete Apr-16 CYP6.5 eMBED consolidate access to MHSDS submissions CYP6.6 Yorkshire DMIC make MHSDS data available to eMBED analysis team CYP6.7 eMBED analysis team identifies Data Quality areas for improvement (i) BDCFT (ii) sub-contracted providers CYP6.8 Data Quality improvements agreed with providers CYP6.9 eMBED analysis team develops methodology to report against performance indicators CYP6.10 eMBED analysis team develops methodology to monitor PbR and other commissioning requirements CYP6.11 Data Quality improvements achieved

CYP7.0 Workforce Outcomes Menu of flexible training options developed for universal settings staff CYP workforce aware of the recommendations regarding emotional well -being knowledge and skills relevant to different levels of employment practice and service provision e.g. Common Core of skills and knowledge CYP workforce able to negotiate an appropriate plan of professional development with their managers based on practitioner and service need CYP workforce aware of the variety of settings where it is possible to develop relationships that foster resilience CYP workforce aware of the range of emotional well-being knowledge and skills development opportunities within Bradford District

HLT&CHI28NovDocAapp1 48 CYP workforce benefit from support of peers engaged in similar resilience building activity CYP workforce aware of the benefits of early intervention in emotional well-being Improved access to training for school staff and others who work with children and young people CYP workforce has increased awareness of choice of routes of access to mental health services CYP workforce has more awareness of strategies to provide support CYP workforce is supported to provide effective care to children and young people with mental health care needs Timescale Milestones CYP7.1 Establish what constitutes Universal Services CYPMH training CYP7.2 Map current training and identify gaps CYP7.3 Map training requirements for CYPMH across children's workforce CYP7.4 Design process for children and young people to influence Workforce work stream CYP7.5 Identify CYP MH workforce development champions across mainstream services and specialist CAMHS CYP7.6 Develop plan to ensure full coverage of training requirements across children's workforce Page 59 Page CYP7.7 Expand opportunities for WRAP training (Wellness Recovery Action Plan) Ongoing CYP7.8 Expand training opportunities for community and faith organisations to raise awareness of services available CYP7.9 Expand opportunities for training in cultural competence for staff working with children and young people CYP7.10 Extend CYP IAPT training to School Nurses

HLT&CHI28NovDocAapp1 49 Appendix 7: Metrics

Local metrics Work stream Measure Rationale

Overarching Has the CCG developed and published a local transformation plan which has been assured, National requirement: CYP MH includes baseline data and is this plan updated and republished annually? transformation milestone Are the Children and Young People’s Eating Disorder Team commissioned by the CCG providing National requirement: CYP MH a service in line with the model recommended in the access and waiting time standard? transformation milestone Are the Children and Young People’s Eating Disorder Team commissioned by the CCG part of National requirement: CYP MH the relevant quality assurance network? transformation milestone Does the CCG have collaborative commissioning plans in place with NHS England for tier 3 and National requirement: CYP MH tier 4 CAMHS? transformation milestone Page 60 Page Has the CCG published joint agency workforce plans detailing how they will build capacity and National requirement: CYP MH capability including implementation of Children and Young People’s Improving Access to transformation milestone Psychological Therapies programmes (CYP IAPT) transformation objectives? CCG spend of additional funding for CYP MH National requirement: NHSE finance tracker Number of children and young people commencing treatment in NHS -funded community National requirement from Q3 services 2016/17 Recovery metric to be developed pending introduction of national requirement National requirement from 2018/19 Number of children accessing CAMHS who self harm Monitor trend in numbers accessing CAMHS who self harm School readiness - % achieving a good level of development at the end of reception Monitor well -being and development in early years

CYP1.0 Schools Referrals from school staff to specialist CAMHS as a percentage of school staff contacts with an Estimate the proportion of emotional Liaison and emotional wellbeing component and mental health support need that Prevention is met in schools State -funded primary and secondary schools: % of persistent absentees, having 38 or more Identify change in numbers absent sessions of absence from school

HLT&CHI28NovDocAapp1 50 Work stream Measure Rationale New cases of "children in need": rate of new cases identified during year, per 10,000 aged <19 Children who require additional support from LA to maintain health/ development/ prevent harm Rate of 16 -18 year olds not in education, employment or training Monitor numbers of young people unable to reach their full potential

CYP2.0 Single Point To be determined Awaiting national guidance of Access

CYP3.0 First First response clients aged under 19 receiving assessment within 4 hours as a proportion of Monitor prompt access to care response: referrals for people aged under 19 crisis care Total bed days in CAMHS tier 4 per CYP population National requirement; monitor

Page 61 Page effectiveness of crisis care in supporting unwell CYP in the community Total CYP in adult in -patient wards/ paediatric wards National requirement; monitor effectiveness of crisis care in supporting unwell CYP in the community Mortality from suicide <19 years Trends in suicide prevention

CYP4.0 Community Percentage of clients (routine) who start treatment within 4 weeks from first contact with a Monitor prompt access to care based Eating designated healthcare professional Disorder service Percentage of clients (urgent) who start treatment within 1 week from first contact with a Monitor prompt access to care designated healthcare professional Service provides NICE -concordant care (y/n) Recovery metric to be determined Effectiveness of service in treating eating disorders

HLT&CHI28NovDocAapp1 51 Work stream Measure Rationale

CYP5.0 Vulnerable Emotional wellbeing of looked after children (PHOF 2.08) Well -being of vulnerable groups Groups

CYP6.0 Transparency NHS number CCGs percentage completeness Monitor data quality and accountability Ethnic Category Code CCGs percentage completeness Monitor data quality CCGs Source of referral for mental health percentage completeness Monitor data quality Programme governance structures are in place and evidenced by (1) Terms of Reference and Provide assurance that programme (2) Minutes governance structures are in place Number of complaints (upheld?) to children's mental health services Acceptability of services to service

Page 62 Page users and their families

CYP7.0 Workforce Schools, colleges and academies where a member of staff has completed training in [tbd] as a Monitor access to training for school percentage of all schools, colleges and academies staff

Local dashboard

cyp_dash_AS_2.0.xl sx

HLT&CHI28NovDocAapp1 52 National metrics Implementing the Five Year Forward View for Mental Health includes additional nationally reported metrics to demonstrate progress at CCG / STP level:

Metric Source Availability CYP MH transformation milestones CCG IAF / Unify From Q1 2016/17 CCG IAF / Unify From Q1 2016/17 CCG spend of additional funding for CYP MH NHSE finance tracker From Q1 2016/17 Number of CYP commencing treatment in NHS- MH SDS From Q3 2016/17 MH SDS From Q3 2016/17 funded community services Proportion of CYP with an eating disorder receiving MH SDS / Unify From Q1 2016/17 MH SDS / Unify From Q1 2016/17 treatment within 4 weeks (routine) and 1 week (urgent) Proportion of CYP showing reliable improvement in MH SDS 2018/19 MH SDS 2018/19 outcomes following treatment Page 63 Page Total bed days in CAMHS tier 4 per CYP population; MH SDS From Q2 2016/17 MH SDS From Q2 2016/17 total CYP in adult in-patient wards/paediatric wards

HLT&CHI28NovDocAapp1 53 References

1 Future in Mind (2015). NHS England, Gateway reference 02939. Available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/414024/Childrens_Mental_H ealth.pdf [Accessed 4 October 2016]. 2 The Five Year Forward View for Mental Health (2016). The Mental Health Taskforce. Available at https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental-Health-Taskforce-FYFV-final.pdf [Accessed 4 October 2016]. 3 Implementing the Five Year Forward View for Mental Health (2016). NHS England, Gateway reference 05574, p. 6. Available at https://www.england.nhs.uk/wp-content/uploads/2016/07/fyfv-mh.pdf [Accessed 4 October 2016]. 4 Nixon, E. (2012). Growing Up In Ireland: How Families Matter for Social and Emotional Outcomes of Nine Year Old Children . Dublin: Government Publications. Available at http://www.growingup.ie/fileadmin/user_upload/documents/Second_Child_Cohort_Reports/Growing_Up_in_ Ireland_-_How_Families_Matter_for_Social_and_Emotional_Outcomes_of_9-Year-Old_Children.pdf [Accessed 17 October 2016]. 5 Bradford and Airedale Health and Wellbeing Board (2013). Health Inequalities Action Plan [online], p. 3. Available at https://jsna.bradford.gov.uk/documents/home/Bradford%20and%20Airedale%20Health%20Inequalities%20Ac tion%20Plan%202013.pdf [Accessed 28 October 2016]. 6 Green, H., McGinnity, Á., Heltzer, H., Ford, T. and Goodman, R. (2004). Mental health of children and young people in Great Britain: Summary report . London: Office for National Statistics. Available at http://content.digital.nhs.uk/catalogue/PUB06116/ment-heal-chil-youn-peop-gb-2004-rep2.pdf [Accessed 17 October 2016]. 7 Giacco, D. and Priebe, S. WHO Europe Policy Brief on Migration and Health: Mental Health Care for Refugees [online]. World Health Organization Regional Office for Europe. Available at http://www.euro.who.int/__data/assets/pdf_file/0006/293271/Policy-Brief-Migration-Health-Mental-Health- Care-Refugees.pdf?ua=1 [Accessed 5 October 2016]. 8 Local authority tables: SFR50/2017 Table LAA1 [online]. Available at https://www.gov.uk/government/statistics/children-looked-after-in-england-including-adoption-2016-to-2017 [Accessed 27 October 2017]. 9 Local Government Association. First time entrants to the Youth Justice System aged 10-17 in Bradford [online]. Available at http://lginform.local.gov.uk/reports/lgastandard?mod-metric=123&mod- area=E08000032&mod-period=3&mod-group=AllMetropolitanBoroughLaInCountry_England [Accessed 27 October 2017]. 10 Links to data: https://www.nomisweb.co.uk/census/2011/qs201ew https://www.nomisweb.co.uk/census/2011/dc2101ew https://www.nomisweb.co.uk/census/2011/qs601ew https://www.nomisweb.co.uk/census/2011/dc6201ew https://www.nomisweb.co.uk/census/2011/qs302ew https://www.nomisweb.co.uk/census/2011/qs303ew https://www.nomisweb.co.uk/census/2011/dc3201ew https://www.nomisweb.co.uk/census/2011/ks209ew 11 Grass Roots is an ongoing mechanism of collecting feedback from people and carers who use NHS services. Insights are collected from a wide range of sources including direct and real time feedback, feedback from Healthwatch, social media, NHS Choices, patient opinion, staff, voluntary and community sector, carers, patient groups and networks. 12 Copeland, M. (2015). WRAP and Recovery Books [online]. Available at http://mentalhealthrecovery.com/ [Accessed 18 October 2016]. 13 http://www.thetelegraphandargus.co.uk/news/15595101.The_Mental_Health_Champions _who_are_helping_to_improve_young_minds_in_Bradford/ 14 Bradford District Care NHS Foundation Trust (2017). Integrated Performance Report October 17 [online]. Available at http://www.bdct.nhs.uk/wp-content/uploads/2017/10/Item-14-Trust-Board-Report-October-17- FINAL.pdf [Accessed 25 October 2017]. 15 The Mental Health of Looked-After Children (2002) [online]. London: The Mental Health Foundation. Available at https://www.mentalhealth.org.uk/sites/default/files/mental_health_looked_after_children.pdf [Accessed 18 October 2016].

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16 Domestic violence and abuse: multi-agency working: Public health guideline (2014). National Institute for Health and Care Excellence. Available at https://www.nice.org.uk/guidance/ph50/resources/domestic- violence-and-abuse-multiagency-working-1996411687621 [Accessed 18 October 2016]. 17 Casey, L. (2015). Report of Inspection of Rotherham Metropolitan Borough Council . London: Department for Communities and Local Government [online]. Available at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/401125/46966_Report_of_I nspection_of_Rotherham_WEB.pdf [Accessed 18 October 2016]. 18 NHS England / Commissioning Strategy / Equality and Health Inequalities Unit (2015). Guidance for NHS commissioners on equality and health inequalities legal duties. Leeds: NHS England [online]. Available at https://www.england.nhs.uk/wp-content/uploads/2015/12/hlth-inqual-guid-comms-dec15.pdf [Accessed 18 October 2016].

HLT&CHI28NovDocAapp1final_draft Page 65 55 This page is intentionally left blank Youth in Mind Case Studies

Individual Assessment Case Studies incl. video testimonial:

Video testimonials will be shared with the committee.

YP1 individual assessments:

NB:

• 0 = Things could not be any worse, 10 = things could not be any better.

YP1 reflects in her assessment scores above that she struggled with most aspects of her life scoring below average (5, ‘things are okay/ balanced’) for all applicable. YP1 highlights that she really struggled with community engagement, getting involved in groups/ activities and social things that were going on around her scoring a 0 ‘the worse things can be’. YP1 also reports that she struggled with her emotional health/ expressing how she feels and her confidence and self- esteem scoring a 2 ‘very low’.

The Buddy worker informs us that YP1 was experiencing issues involving, isolation, anxiety, anger, low self-esteem and confidence. She had not attended school for 18 months due to her issues triggered by on-going incidents of bullying both in school and through social media. She did not leave the house without mum, and had not socialised with peers for over 12 months.

During her involvement with the Youth in Mind approach YP1 now reports that her community involvement has improved by 40% (to 4), Her emotional and mental health has improved by 30% to 5 where she feels ‘okay/ balanced’. Her confidence has improved by 20% to (4) just under ‘okay’, with her reaching a level where things feel ‘okay’ regarding her other aspects of life – Financial, Ability to Function, Support Networks and Physical Health.

Due to her growth in Confidence, Emotional Wellbeing and feelings of being supported, this young person has identified her ability and wish to engage in her community more, she volunteers for peer mentoring, youth council and having her voice heard. She is now a regular attendee of the local youth provision and has been referred and awaiting a WRAP peer support group.

Page 67 Youth in Mind Case Studies

YP3 individual assessments incl. video testimonial:

YP3 begins her journey in Youth in Mind feeling that 1 ‘things were nearly at their worst’ regarding her Emotional Wellbeing and Financial situation. Her Confidence was extremely low at a 2 ‘things are very bad’ and her Community Engagement was virtually non-existent scoring 2 ‘things are very bad’. YP3 scored herself below average in all aspects of her life apart from Support networks which she rated as 5 ‘okay/balanced’.

In her second assessment YP3 reflected, that through the support of the Youth in Mind approach she now felt more in control of her Emotional Wellbeing with a 30% improvement to 4 ‘things are quite bad/ not yet okay’ but with the support she is moving in the right direction. YP3’s Financial situation improved by 20% which has enabled her to improve to score a 5 ‘okay’ (a shift of 30% ) in Community Engagement which is aiding her to improve by 20% to ‘okay’ in Physical Health and 10% in Ability to Function. YP3 appears to be more in control and in charge of her physical, emotional health improving how she manages her Medication by 30% to score 6 ‘it is good’.

In all highlighted cases above, the Youth in Mind approach has improved all outcomes that are in the professional’s ability to influence resulting in better social, emotional and physical prospects for the young people.

As their time with Buddies comes to an end these young people will move through the Youth in Mind model towards WRAP, Mentors, wider generic youth work, peer groups and community engagement.

Page 68 Youth in Mind Case Studies

Case Study 1:

I am working with a 17 years old female client. She has anxiety and depression and has been involved with CAMHS for a number of years. She often has weeks where she is unable to leave the house, and then at other times she is on a high and sometimes does crazy things. My Client spends a great deal of time on the internet on social media, often chatting to people all over the world. She is interested in comics and spends a lot of her time in chat rooms on line in the role of a character from a comic book. She likes weird and wonderful things, and calls herself unique.

I spent several weeks trying to make contact with my client, she didn’t answer her phone, texts or door when I went to visit. However, through talking to the referrer I managed to get introduced and I then met my client a number of times at her home address before she felt comfortable venturing out with me. For our first outside appointment we went to Star Bucks somewhere she had never been before (she often avoids places where there are lots of people.) She was uncomfortable at first and had a few panicky feelings, but I worked with her to control her breathing and zone out the surroundings and give her the control to leave if she needed to and she was able to ground herself and then felt more settled.

We spoke about what kinds of things she likes to do, she wanted to lose weight and get healthier, she wanted to get out of the house more and make friends. I spoke to her about joining a local gym, cycle club, going for walks etc… She liked the idea of biking. So, we have arranged to attend the biking project at Bradford Bulls and see if she likes it.

We also spoke about her attending the TFD centre for the Build a Girl Project on a Monday. She has been down and looked around the centre and said it would be something she would like to do, however I would have to convince her mum it was safe. She also loves art and drawing, so we are looking at how she can access some art courses in the local community, linking her with the community library on Holme Wood. My client is hoping to start back at college in September and needs to feel confident about going out and being around people again.

Case Study 2:

X was referred to me in May via the Buddying service. The information on the form stated that there were some concerns about X’s emotional wellbeing; this was more of a concern for mum rather than X. There were also some issues with his step dad which affects X. The form stated that X’s relationship with his birth dad was sporadic.

When I first visited X with Shaun Walker from MYMUP we were very welcomed and X and his mum were more than willing to go through the assessment with us. X showed an interest in the MYMUP application and was keen to build up his profile. After the visit and further contact with X, I am very pleased on how much he has progressed in such a short space of time. This has also been noted by the MYMUP team as they were pleased with the inputting X had done on his personal profile and the information he had put on which provided me a further insight into his needs.

I have had a one to one visit with X where I was able to tell him about the local youth clubs and we have arranged to visit them one evening so that he can potentially participate in them. X also has a keen interest in drama and because I have worked with Freedom Studios (Drama Company), I have asked X if he would like to go visit and see what there is to offer for him, which he is also interested in.

X has worked very well with me and I am pleased that we have built a good relationship where he is able to talk to me and get advice. I am also in constant contact with X’s mum to update her about everything keeping her involved in the process. I will continue to work with X and support him with the issues he has raised in order for him to deal with any barriers he is facing. Page 69 Youth in Mind Case Studies

Case Study 3

A was referred to me as a young person on the buddying scheme. She is 14 years old, and was experiencing various issues such as isolation, anxiety, anger, low self-esteem and lack of confidence. A had not attended school for 18 months due to her issues, which both she and her mum felt had been triggered by on-going incidents of bullying, both in school and through social media. She did not leave the house without her mum, had not socialised with peers for over twelve months, and was displaying ritualistic behaviours with regards to her appearance, for example, not leaving her room without spending two hours putting on make-up and fake eyelashes, and going into emotional meltdowns or fits of anger if she did not have any fake eyelashes and nails. Mum was very supportive, as she too had experienced issues with her own mental health in the past.

After discussing how unhappy A was, and how she was experiencing the feeling of being worthless, we came to the agreement that she wanted to change her life, and to do this she would have to go through a tough period to push herself to overcome her anxiety. At first it was really difficult as I could sense the terror and fear at the prospect of going into social situations. I quickly realised that ad hoc or unplanned visits to A were much more productive, as she had no time to overthink and worry about it. We also arranged visits in the morning to try and break her poor sleeping pattern.

During one of our one to ones I drove with A and pulled up outside the youth club and asked if she would go inside with me, just to look around. She agreed and after a quick look and talking it through, A went back in and stayed for the remainder of the session. I had already prepared a couple of the young people in there, who had experienced similar issues to A, briefed them on her, and asked for them to make her feel welcome.

A now had a couple of peers who she could relate to and speak to, and began attending youth club regularly, initially with my support. She felt a lot happier, and began to look forward to our weekly sessions. Being able to chat about her issues openly and listening to other young people talking about similar issues helped to affirm that A was not weird or alone in her struggles with mental health. I encouraged these young people to make contact with each other outside the youth club sessions. They set up a group chat on social media, and were communicating and meeting up outside the youth sessions. I encouraged contact outside the youth club by giving them cinema tickets, and suggesting they travel there by bus as a group. This helped build their social independence and to look after each other. This worked so well that I began to bring other young people from the buddy scheme too, and asked A along with the others to support their integration into the group. A’s confidence was growing with her new found “buddying” role, and she found the confidence to be involved in Youth Voice events, a “Mile of Tolerance” event which involved visits to a range of places of worship with other young people, as part of the Youth Service’s work to build community cohesion. A is now a member of the Youth Council, helping to plan and deliver sessions, and support other young people. Her growing confidence and willingness to extend her social interactions has amazed me. For example, she agreed to take part in the Lane Fox Challenge (an amazing outdoor group event!). She was ready at 8:30am on the Sunday morning, without any make-up on, and really pushed herself to run through the woods and get wet and muddy, and took part in nearly all of the challenges. Page 70 Youth in Mind Case Studies

The MYMUP online tool has been a fantastic resource for A. She has done a number of online interventions which she has talked about with me when we have met. The tool has also enabled us to document her journey and just how far she has come.

I was able to support A’s engagement in education by liaising with school, and picking up and dropping off English and Maths work for her to prepare to restart her education, as she was on the waiting list for home tuition. I also worked with mum, advising her to encourage A’s independence. Because mum had suffered with mental health issues, she was very empathic but she was also anxious for A. Mum needed to learn not to overreact to A’s new achievements, and to endorse her growing independence.

A now feels that she is worth something, and is looking to the future and ready to get back into education, and mum is overjoyed with her development and the fact that she now smiles regularly.

Case Study 4

I first met B on 16/05/17 after he was referred through CAMHS for the Buddy Project. B is 14 years of age, my first meeting with him involved doing an initial assessment, this involved B, his mum and step dad. The issues discussed involved B who presented himself as being socially isolated with not many strong friendships, and had been diagnosed with autism. During the assessment it was clear that B was not involved in any activities out of school, and would spend a lot of his spare time in his bedroom gaming or surfing the internet. Throughout the assessment he scored low in regard to the subjects discussed, except for support networks which he scored high in. This is due to the fact that B comes from a very loving family. He lives with his mum and stepdad but sees his dad on a regular basis.

B has experienced bullying at secondary school, he has now moved and located to a new school which he prefers. B struggles and doesn’t enjoy the majority of lessons he is taught, but has a keen interest in drama and excels in his lessons. B also has a passion for cooking and regularly bakes bread for his family. He is a polite and well-mannered young person who is instantly very likeable and easy to interact with. He admits that he finds it easier to build relationships up with adults than school colleagues.

B had previously attended a drama club when he was younger, and my first discussion in relation to this was whether he would like to try attending another one which was local to him. He was keen on the idea and after initial research he began attending a drama club called Stardom, and has not looked back since. B has now been attending this group on a weekly basis for the past four months, and has been put forward for potential casting opportunities, and has a portfolio which contains professional photos. He has made a couple of friends from the group who he now socialises with.

B has always been open to new ideas and potential activities. With him being a keen cook I suggested booking him onto cooking sessions at Jamie’s Ministry of Food. He checked the programme of activities, and decided on attending seven cooking classes, which consisted of baking, preparing and learning about foods and cooking different cuisines. B attended every session and as his buddy worker I received regular Page 71 Youth in Mind Case Studies feedback from the tutors, who were always full of praise for his enthusiasm, commitment and passion for the sessions he did.

My 12 weeks with B are now complete and his progress was reflected in his final assessment, from which his community involvement has scaled from a zero to a nine. All the assessment topics were now all at the higher end of the assessment scale, which was a dramatic improvement from when I first met him. He has been very receptive of the MYMUP online interventions tool, and has regularly completed tasks on this and has added many photos of himself taking part in activities, and pictures of his family.

B was referred to the Bradford South WRAP group which he has attended on a regular basis, contributes well to discussions, and is very well liked and respected amongst staff and his peers. The next step for him will potentially involve him being a buddy volunteer to other young people who require support, and he will without doubt be, and already is, a role model to others.

Assessment

The assessment was carried out with B and his parents at the family home. I introduced him to the online MYMUP system, this was helped by him being able to access the tool by using a 4G tablet. He was instantly engaged by the system’s interactive options in relation to the virtual world, which in his words were “very similar to the Sims game”. I felt that having the option of the online tool to interact with B was a great way to introduce myself, and give a good first impression and positive outcome to the first session.

Interventions

B has engaged really well with the online tool, and to date has completed twelve online interventions related to his current anxieties and social issues. The advantage of him having the online tool enables myself as the buddy to explore and discuss these interventions on a sessional basis, and also allows a joint collaboration of goal settings between buddy and client. I also feel that the option to be able to send messages to the client on the “Client Journey” section is a really good method of keeping in touch, and also to provide the on-going encouragement and support in relation to the client’s needs.

To date, B has taken part in activities and has been open and honest during our meetings. He is now involved in a local drama group on a weekly basis as this is one of his passions.

Page 72 Agenda Item 7/

Report of the Director of Children’s Services and the Strategic Director Health Partnerships, to the Joint meeting of Children’s Services and Health & Social Care Overview and Scrutiny Committees to be held on 28 November 2017

B Subject: Autism and other Neurodiversity Strategy (all age)

Summary statement:

This strategy identifies a number of key areas for review and development in order to ensure that children and adults with Autism and other frequently co-occurring neuro-developmental conditions, living within our district, are able to lead rewarding and fulfilling lives from cradle to grave.

The strategy has been developed in response to the self assessment process that Local Authorities are required to undertake annually. This self assessment helps Local Authorities to determine what progress is being made towards meeting the requirements of the Autism Act 2010 (revised 2015). A local Autism strategy is a key requirement of the Act.

Judith Kirk Portfolio: Deputy Director Employment Education and Skills Education, Employment and Skills

Ali Jan Haider Health and Wellbeing Director of Strategic Partnerships

Report Contact: Jo Butterfield and Ronnie Overview & Scrutiny Area: Hartley Head of the SEN EIT inc Autism TSS. Children’s Services Phone: (01274) 439496 Health and Social Care E-mail: [email protected]

Page 73

1. Summary

It is recognised that failure to provide adequate services can have costly consequences for individuals, their families and for public services both in terms of the negative impact that crises have on people’s lives and the fact that acute and/or highly specialist services are expensive.

Key recommendations include:-

- Defining a pathway of support and care which coordinates key actions across sector both pre and post diagnosis, is easily navigable and based on need. - Raising awareness about Autism and other Neurodiversity and reducing stigma - Identifying what reasonable adjustments can be made within mainstream services to ensure early access to support and care (ie remove barriers to access) - Ensure timely identification and diagnosis - Ensuring that services involved in assessing the needs of Neuro diverse individuals have training and skills to be able to do this.

The strategy is in the final stages of development and it has been proposed that a cross organisational strategy implementation group be established across partner organisations. A named strategic lead will be identified to ensure appropriate accountability and governance and to ensure the strategy moves into implementation mode quickly and effectively.

1.1. What is Neurodiversity?

Neurodiversity refers to the range of neurological differences experienced by people with ‘conditions’ such as Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), dyslexia and dyspraxia and other conditions such as tic disorders and Tourette Syndrome. More detailed descriptions of the two most common “conditions” are given below.

1.2. Autism Spectrum Disorder (ASD)

The main focus of this strategy is autism. No one knows why people have autism and you cannot always tell that someone has autism so it is sometimes called a “hidden disability” or condition. It lasts for all of a person’s life, irrespective of when an individual is diagnosed, but with appropriate support many people can lead rewarding and fulfilling lives.

Everyone with autism is different, and consequently will have different needs, but being autistic often means that people may experience problems with:

Communication – both verbal and non-verbal, e.g. difficulties with use and interpretation of voice intonation, facial expressions and other communicative gestures. This can mean that it is difficult to tell people what is needed and their feelings;

Page 74 Reciprocal social interaction – for example the ability to understand what someone else might be thinking in a real-time situation and to understand the need for social ‘give and take’ in conversation and overall interaction. This can result in high anxiety levels, loneliness and/or isolation and depression.

Restrictive, repetitive and stereotypical routines of behaviour – these may involve enthusiasms held by a person with autism (which may be very restricting for their family, friends and colleagues but may also be psychologically distressing or inhibiting for the individual with autism).

Sensory overload – such as difficulty processing everyday sensory information such as sounds, sights and smells. This again can raise anxiety levels and trigger unsociable behaviour.

A proportion of young people with ASD are also reported to show catatonic like symptoms in adolescence, the prevalence of such is unknown.

1.3 Other Neurodiversity

There are a number of conditions that are referenced in this strategy either because they can be diagnosed alongside autism or because they have a similar impact on individuals lives. These include ADHD (Attention Deficit Hyperactivity Disorder); Dyspraxia, Dyslexia and Tic disorders see Appendix 2.

Neuro diversity and particularly autism impacts on the whole life experience of people and their families/carers.

1.4 Assessment

Health has a statutory responsibility to commission services that provide assessment and diagnosis of Autism and other neuro diversity. The assessment and diagnosis process involves a number of different professionals across a spectrum of different services/organisations depending on where the individual being assessed is currently receiving support and their age. This can include clinical psychologists, speech and language therapists, community paediatricians, occupational therapists, and representatives from social care, education, and others as appropriate. Professionals will undertake assessments/collate reports separately and then, through a multi- disciplinary meeting, look at this information collectively and make a decision about diagnosis.

Demand for assessment and diagnosis has rapidly increased over the past few years this has led to an increase in referrals into both child and adult services. The different health services providing assessment and diagnosis for children have collaborated over the last year to agree a standard approach across the district that recognises both

Page 75 Autism and ADHD and joins up to the adult pathway. The amount of recurrent funding for adult autism assessment and diagnosis was increased earlier this year and Bradford District Care Trust have been able to increase staffing levels as a result of this. Additional short term funding has also recently been made available to clear the waiting list backlog for assessment and diagnosis and we are discussing the best way of doing this with the providers.

1.5 Purpose of strategy

This strategy upholds the need to focus on a holistic, joined-up approach across statutory and non-statutory services in order to ensure support and care is efficiently delivered and effectively utilised. The main focus of this strategy is to enable people that are neuro-diverse to keep well and safe and to live fulfilling lives.

The strategy was developed using real life experiences of people living in the district and in consultation with services providing support and care and the public health department. It is currently owned by the Autism Partnership Board which is led by the Local Authority.

Individuals with autism and their families need to be able to access services that support their individual needs and to have access to services where professionals have a good awareness of autism and behaviours and conditions associated with it. This will mean that a wide range of services should be available, as and when required and in a way that is appropriate to them. Within the strategy a number of specific services are focused on including:-

• Assessment and Diagnosis Services (health) • Housing • Education (including tertiary education) • Employment • Mental Health • Social care • Voluntary Community Sector • Accessing Mainstream Services

1.6 Families/carers

The strategy brings together key recommendations from a number of national documents and sets them in the context of recent experiences of people with neurological difference and their families/carers in an attempt to demonstrate the strategic and operational changes that need to be made in the District. It aligns the statutory responsibilities of different organisations to real service user experience in order to highlight what impact services do, or don’t have on an individual and their family’s/carer’s lives

Page 76 1.7 Delivery of strategy

It is envisaged that the strategy will be approved by the Health and Wellbeing Board and report to the SEND and Behaviour Strategic Partnership. A draft implementation plan is currently being developed to ensure that at point of “sign off” the strategy will move into implementation quickly and with professionals identified to drive the work that is required. A cross organisational strategy implementation group will be established across partner organisations A new commissioning framework will be required to ensure that services are effectively integrated and that an easily navigable pathway of support and care is offered.

2. BACKGROUND

2.1 Children and adults on the autism spectrum and/or with other neuro difference disabilities or mental health, although these conditions may also be present and associated services may be the most appropriate to access. Consequently, this strategy is aligned to both the strategy “Mental wellbeing in Bradford District and Craven: 2016 – 2021”and the Transforming Care Programme for Learning Disabilities and/or Autism.

2.2 The Underpinning Values of this strategy include:

• Transparency – involving service users, service providers and other stakeholders and working together to promote independence, recovery, resilience and wellbeing. • Services and support which are person-centred, inclusive and relevant to need. • Support that is of a high quality and meets the diverse needs of Bradford District and Craven’s population. • Services and support that represent good value for money • Care provision and support that is focused on outcomes rather than simply the activity itself. 2.3 The key strategic outcomes expected from this strategy are:

• People are supported to remain independent and to meet their full potential. • Choice and control over how individuals (and their carers) are supported to live their lives is maximised. • People are able to access high quality services that meet their health and care/support needs.

3. OTHER CONSIDERATIONS

3.1 The Autism and Neurodiversity Strategy is all age, and involves both child, adolescent and adult services. Further discussion will need to take place with a range of commissioners and providers in children and adult services and health to agree any changes to current commissioning arrangements.

Page 77 4. FINANCIAL & RESOURCE APPRAISAL

4.1 It is recognised that failure to provide adequate services can have costly consequences The Report “Supporting People with autism through adulthood” states that late clinical intervention can be -

“…expensive, with inpatient mental health care costing between £200 and £300 per day”

4.2 The National Autism Project (NAP), supported by The Shirley Foundation, has recently published “The Autism Dividend; Reaping the Rewards of Better Investment”. They key aim of the report is to provide authoritative recommendations on those aspects of autism research and practice that have demonstrable effectiveness in benefiting people with autism, their families and their communities. Following publication of these recommendations NAP are conducting a national campaign aimed at policy makers to demonstrate the economic benefit that could be gained by greater investment in preventative intervention which supports wellbeing and enhances an individual’s ability to contribute to society and reduces the enormous economic impact of autism in the UK (estimated £32 billion per annum).

4.3 Financial and resource implications of delivering the strategy will be detailed in the implementation plan, it is anticipated that this will be ready by April 2018 and a further report is brought to overview and scrutiny in September 2018.

5. RISK MANAGEMENT AND GOVERNANCE ISSUES

5.1 The strategy is in the final stages of development and it has been proposed that a cross organisational strategy implementation group be established across partner organisations. A named strategic lead will be identified to ensure appropriate accountability and governance and to ensure the strategy moves into implementation mode quickly and effectively.

5.2 The NAP report also found that the reality is “that poor support for autistic people results in poor choices, leading in turn to poorer outcomes – and the impacts on autistic people and their families can be highly damaging. Autistic people are more likely to be excluded from schools, suffer poor health and have a high risk of premature death 1”.

6. LEGAL APPRAISAL

The LA will work closely with partner agencies to ensure the effective delivery of the strategy and implementation.

1 “The Autism Dividend; Reaping the Rewards of Better Investment” National Audit Project January 2017

Page 78 7. OTHER IMPLICATIONS

7.1 EQUALITY & DIVERSITY

An equality impact assessment will be completed for the strategy and implementation plan.

7.2 SUSTAINABILITY IMPLICATIONS

None arising from this report

7.3 GREENHOUSE GAS EMISSIONS IMPACTS

It is not anticipated that the strategy will impact on the Local Authority’s carbon footprint.

7.4 COMMUNITY SAFETY IMPLICATIONS

None arising from this report

7.5 HUMAN RIGHTS ACT

There are no direct Human Rights implications arising from this report.

7.6 TRADE UNION

None arising from this report

7.7 WARD IMPLICATIONS

The strategy and implementation plan will be shared with all Wards.

8. NOT FOR PUBLICATION DOCUMENTS

8.1 None

9. OPTIONS

9.1 The strategy is presented for information and update at this stage.

10. RECOMMENDATIONS

10.1 The Committee is asked to note the contents of the report at this stage.

Page 79 11. APPENDICES

11.1 Appendix 1: Draft Bradford District and Craven Autism including other Neurodiversity Strategy v.16 11.2 Appendix 2: Other Neurodiversity descriptors

12. BACKGROUND DOCUMENTS None

Page 80 Bradford District and Craven Autism including other Neuro diversity Strategy V.16 October 2017

Section Sub Section Page 1 Background 3 2 Purpose 5 3 Cost Benefit/case for change 6 4 Key Drivers a) National Context 7 b) Local Context 8 5 Statistics/Key headlines 8 6 Why this strategy is important 9 7 Planning for Neuro Diversity a) Level of Need 10 Services b) Commissioning Approach 11 8 Key Areas for Review a) Data/information 14 b) Autism Awareness/training 16 c) Defining a Pathway 18 d) Learning Disabilities & Mental Health 27 e) Transition 29 f) Education and support 30 R g) Relationships/Carers/Families 32 h) Employment 33 i) Housing 34 j) Undiagnosed/late diagnosis 36 k) Older Adult 37 l) Accessing mainstream services 38

9 Digital Resources/Technology 38 10 Governance 37 11 Partnership Working 37 12 Listening/Engaging Service 38 Users and Families/Carers 13 Priority Outcomes 39 Bibliography 41 Appendix 1 Action Plan from National Self Assessment 42 Appendix 2 Information from Born in Bradford 47 Appendix 3 Autism Epidemiology 47 Appendix 4 West Yorkshire areas for consideration 48

Page 81

VERSION CONTROL

Author Version Amendments made/by Jo Butterfield 0.1 Jo Butterfield 0.2 Comments from Autism Partnership Board Jo Butterfield 0.3 Comments from BAS, AWARE, Jo Butterfield 0.4 Comments from Autism Partnership Board Jo Butterfield 0.5 Comments from Healthwatch Jo Butterfield 0.6 Updated data from primary care systems Jo Butterfield 0.7 Update following training event and SLT input Jo Butterfield/Andrew O’ 0.8 Update of health needs Shaughnessy component Jo Butterfield 0.9 Update following feedback from Mother (HH) and SAS members and BDCFT OT Jo Butterfield 0.10 Updated following presentation and feedback from SEND partnership board Jo Butterfield 0.11 Update following feedback from David Sims and other CAMHs staff Jo Butterfield 0.12 Update following public health england report on self assessment Jo Butterfield 0.13 Update fol lowing new guidance to TCPs on developing support and services for children and young people with a learning dis, autism or both Jo Butterfield 0.14 Update following feedback from Julie Bruce Jo Butterfield 0.15 Update following comments from Janet Bean – SAS Jo Butterfield 0.16 Update following discussion at Autism Partnership Board

This strategy has been developed with the support and advice from the following key partners

Bradford City, Bradford Districts and Airedale, Wharfedale and Craven CCG

Bradford Local Authority (and following review of the North Yorkshire Autism Strategy)

Page 82 Airedale and Wharfedale Autism Resource (AWARE)

Bradford Autism Service (BAS)

Barnados

SAS (specialist autism services)

HFT

Healthwatch

Bradford Education

Health providers – Bradford Teaching Hospitals Foundation NHS Trust, Bradford District Care Foundation Trust, Airedale Hospitals Foundation Trust

Born in Bradford Project Research Team

Autism Partnership Board

The delivery of this strategy will be progressed through the Autism Partnership Board and will ensure consistency of service provision for all residents within Bradford Districts and Craven.

(NB Craven residents are included in CCG boundaries and therefore have access to the same health provision, Local authority support for Craven residents would however be provided through Craven district Council and North Yorkshire County Council).

Forward

Real life, everyday experiences have been used to help demonstrate where changes need to be made and the voices of those affected by autism also underpin this strategy. It is an ageless strategy in recognition of the importance of good transition processes between child, adolescent and adult services, and sets out key recommendations for the work that is required over the coming years to ensure that NICE Quality standards are fulfilled 1

The Underpinning Values of this strategy include:

• Transparency – involving service users, service providers and other stakeholders and working together to promote independence, recovery, resilience and wellbeing. • Services and support that are person-centred, inclusive and relevant to need. • Support that is of a high quality and meets the diverse needs of Bradford District and Craven’s population. • Services and support that represent good value for money • Care provision and support that is focused on outcomes rather than simply the activity itself.

The key strategic outcomes expected from this strategy are:

1 https://www.nice.org.uk/guidance/qs51/ https://www.nice.org.uk/guidance/qs39

Page 83 • People are supported to remain independent and to meet their full potential. • Choice and control over how individuals (and their carers) are supported to live their lives is maximised. • People are able to access high quality services that meet their health and care/support needs.

These strategic outcomes are set in the context of a requirement to ensure ongoing delivery of a financially sustainable health and social care system.

This strategy upholds the need to focus on a holistic, joined-up approach across statutory and non- statutory services in order to ensure support and care is efficiently delivered and effectively utilised. The main focus of this strategy is to enable people that are neuro-diverse to keep well and safe and to live fulfilling lives.

1. Background

Originally coined by a scientist in the 1980s, neurodiversity refers to the range of neurological differences experienced by people with ‘conditions’ such as autism, ADHD, dyslexia and dyspraxia. Other conditions such as tic disorders and especially Tourette Syndrome are also considered in this strategy as they too are neurological disorders with onset in childhood. Tic disorders are a co-morbid disorder with ASD’s.

It is recognised that there are a number of terms that individuals and groups prefer to use including autistic spectrum disorder (ASD), autistic spectrum condition and autistic spectrum difference. In thiDarrys strategy the term autism is used as an umbrella term for all such conditions, including Asperger syndrome. This is in line with the approach to terminology adopted by key autism representative organisations, including National Autistic Society (NAS).

Autism

This strategy primarily focuses on the development of services for people with autism although considers other frequently co-occurring neurodevelopmental conditions across the age spectrum. People with autism may have learning disabilities or have other conditions such as Attention Deficit Hyperactivity Disorder (ADHD), learning difficulties, such as dyslexia (difficulty in learning to read/interpret symbols) and dyspraxia (difficulties with co-ordination/movement). Asperger Syndrome and Pathological Demand Avoidance (PDA) are considered to be part of the autistic spectrum. Neuro diversity and particularly autism impacts on the whole life experience of people and their families/carers. No one knows why people have autism and you cannot always tell that someone has autism so it is sometimes called a “hidden disability” or condition. It lasts for all of a person’s life, irrespective of when an individual is diagnosed, but with appropriate support many people can lead rewarding and fulfilling lives.

Everyone with autism is different, and consequently will have different needs, but being autistic often means that people may experience problems with:

• Communication – both verbal and non-verbal, e.g. difficulties with use and interpretation of voice intonation, facial expressions and other communicative gestures. This can mean that it is difficult to tell people what is needed and their feelings;

Page 84 • Reciprocal social interaction – for example the ability to understand what someone else might be thinking in a real-time situation and to understand the need for social ‘give and take’ in conversation and overall interaction. This can result in high anxiety levels, loneliness and/or isolation and depression. • Restrictive, repetitive and stereotypical routines of behaviour – these may involve enthusiasms held by a person with autism (which may be very restricting for their family, friends and colleagues but may also be psychologically distressing or inhibiting for the individual with autism). • Sensory overload – such as difficulty processing everyday sensory information such as sounds, sights and smells. This again can raise anxiety levels and trigger unsociable behaviour. • A proportion of young people with ASD are also reported to show catatonic like symptoms in adolescence, the prevalence of such is unknown.

Each individual with autism and their family need to be able to access services that support their individual needs and to have access to services where professionals have a good awareness of ASD and behaviours and conditions associated with it. This will mean that a wide range of services such as social care, education, housing, equipment, employment and a wide range of other community based services should be available as and when required and in a way that is appropriate to them.

Attention Deficit Hyperactivity Disorder

ADHD is a medical condition that affects how well someone can sit still, focus, and pay attention. People with ADHD have differences in the parts of their brains that control attention and activity. This means that they may have trouble focusing on some tasks and subjects. The symptoms of ASD and ADHD overlap. Most children on the autistic spectrum have symptoms of ADHD such as difficulty settling down, social awkwardness, the ability to focus on things that interest them and impulsivity. Recent research is suggesting that around half of children diagnosed with autism will also have ADHD. ADHD can “mask” autism when left untreated. Symptoms of ADHD tend to be noticed at an early age and may become more noticeable when a child's circumstances change, such as when they start school. Most cases are diagnosed when children are 6 to 12 years old. The symptoms of ADHD often improve with medication. However, like Autism the cause of ADHD is unknown, and again like Autism the condition has been shown to run in families. Research has also identified a number of possible differences in the brains of people with ADHD compared to those who don’t have the condition. It is thought about 3-5% of school aged children may have ADHD and again, like autism, it can occur in people of any intellectual ability although it is more common in people with learning difficulties.

Children and adults on the autism spectrum and/or with other neuro difference each have a unique set of conditions which will not necessarily fall within categories of learning disabilities or mental health, although these conditions may also be present and associated services may be the most appropriate to access. Consequently, this strategy is aligned to both the strategy “Mental wellbeing in Bradford District and Craven: 2016 – 2021” and progress will be monitored at the Transforming Care Programme for Learning Disabilities and/or Autism. There is a recognition that timely access to mental health provision is key to reduce escalation of crisis situations and to some extent if individuals are seeking crisis care then the support system has failed them. Crisis services for people

Page 85 who are neuro-diverse with mental health conditions and/or Learning Disability will not be included in depth in this strategy although raising awareness of autistic people’s particular needs in accessing any non neuro-diverse specific service will be referred in an attempt to reduce the numbers of people with autism and/or ADHD being placed in out of area provision due to their needs escalating to such a point that local provision is not a viable option. Lessons must be learned from reviewing individual stories of people’s experiences of crisis care and these should be utilised to help prevent individual’s following the same path.

This strategy brings together key recommendations from a number of national documents and sets them in the context of recent experiences of people with neurological difference and their families/carers in an attempt to demonstrate the strategic and operational changes that need to be made in the District. It aligns the statutory responsibilities of different organisations to real service user experience in order to highlight what impact services do, or don’t have on an individual and their family’s/carer’s lives.

2. Purpose of this Strategy

The purpose of this strategy is to outline what care and support is required by service users and their families, recognising that resources are finite, and to progress the key recommendations outlined in the government’s “Think Autism” strategy which was published in April 2014 and set out the statutory guidance for public sector services. It also considers the impact of the Review of services provided at Winterbourne View (2012) and NICE guidance (CG142). The reasoning behind developing a strategy for all age groups is to ensure that services across the age spectrum are integrated, primarily because transition points for neuro diverse individuals, particularly those with autism, can be difficult for them to cope with. As detailed above many difficulties that individuals with ASD’s face are similar to those with other neuro- diverse conditions such as tic disorders, dyslexia, ADHD etc. and many individuals who are not supported effectively will suffer mental health distress such as anxiety and depression and/or social isolation.

This strategy sets out the priority areas for local review, change and development for NHS and Council services working in partnership with both commissioned and non-commissioned voluntary sector services and with families and people affected by neurodiversity. The remit is consequently very broad and encompasses education, social care, community, housing, employment, broader public services, as well as addressing and influencing societal perception and understanding, healthcare and biological/medical research.

It is envisaged that a Programme Plan, aligned to the Transforming Care Programme (TCP), will be developed which identifies workstreams for each of the priority areas detailed within the strategy. Care will be taken not to duplicate transformational work being undertaken by the TCP. As a result this strategy will focus predominantly on neuro-diversity without learning disability. The Mental wellbeing in Bradford District and Craven strategy 2016 – 2021 is also relevant bearing in mind that mental illness is more common for people with autism than the general population. Mental health and wellbeing services that are autism friendly as a minimum but ideally autism specific must be developed. Timescales for delivery of the main recommendations within this strategy are dependent on resource to support implementation across the numerous providers involved but should be completed by 2021.

Key performance indicators have been suggested for each workstream but will need further development as the strategy is operationalised.

Page 86 This strategy has been approved by the Autism Partnership Board for Bradford District and Craven and

Xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx? Which body for final approval Health and Well Being Board?

3. Cost Benefit – Case for Change

It is recognised that failure to provide adequate services can have costly consequences for individuals, their families and for public services/state. The 2009 National Audit Office (NAO) Report “Supporting People with autism through adulthood” states –

“ Beside the negative impact of such crises on a person’s life, acute services are also expensive, with inpatient mental health care costing between £200 and £300 per day”

The National Autism Project (NAP), supported by The Shirley Foundation, has recently published “The Autism Dividend; Reaping the Rewards of Better Investment”. They key aim of the report is to provide authoritative recommendations on those aspects of autism research and practice that have demonstrable effectiveness in benefiting people with autism, their families and their communities. Following publication of these recommendations NAP are conducting a national campaign aimed at policy makers to demonstrate the economic benefit that could be gained by greater investment in preventative intervention which supports wellbeing and enhances an individual’s ability to contribute to society and reduces the enormous economic impact of autism in the UK (estimated £32 billion per annum 2). Key findings and associated recommendations included:

• Ensure timely identification and diagnosis • Provide evidence-supported interventions and support (with an aim to reduce Mental Health crisis interventions) • Make the economic case for intervention • Remove barriers to access • Tackle environmental and other stressors • Fight stigma and discrimination • Ensure better transitions (for example between child and adult services) • Coordinate action across sectors • Build better information systems

(These recommendations have been incorporated into this strategy but with the caveat that the ambition articulated within this document has to be realistic to the financial situation of public sectors services).

The NAP report also found that the reality is “that poor support for autistic people results in poor choices, leading in turn to poorer outcomes – and the impacts on autistic people and their families can be highly damaging. Autistic people are more likely to be excluded from schools, suffer poor health and have a high risk of premature death 3”.

2 Based on initial research in 2007 led by Professor Martin Knapp from the London School of Economics and Political Science which demonstrated that the economic consequences of autism in the UK totalled £28 billion per annum – since revised by LSE in 2014. 3 “The Autism Dividend; Reaping the Rewards of Better Investment” National Audit Project January 2017

Page 87 This preventative agenda is a key component throughout this document with recognition that timely low level and low intensive support and services can help to prevent the development of more complex needs over time.

4. Key Policy Drivers

a) National Context

The 2009 Autism Act and the publication of the autism strategy, Fulfilling and Rewarding lives, that followed in 2010 set out the vision and direction of travel for services for adults with autism. Local authorities were tasked to appoint a lead with responsibility for mapping local need and developing plans and, increasingly, people with autism have been engaged locally in planning and designing services. Nationally a comprehensive suite of clear national guidance has been issued on the care, management and diagnosis of autism for adults including Statutory guidance (published in 2015) for Local Authorities and NHS organisations which is reflected throughout this document.

With regards to children; The Children and Families Act 2014 aims to ensure that all children young people and their carers are able to access the appropriate support and provision to meet their needs. The Act outlines a new Code of Practice for children and young people with special educational needs and/or disabilities (SEND). (NB the government considers Autism to be a disability).

The Care Act 2014 is also a key national driver and introduced a single law to replace existing complex legislation around social care and new duties for local authorities and partners resulting in new rights for service users and their carers including a stronger focus on wellbeing and prevention and a new safeguarding framework. Care and support services are often key in enabling the independence and wellbeing of people with autism and/or ADHD.

The Care Act requires councils to ensure that any adult and/or carer with care and/or support needs should receive a needs assessment. Transition assessments should also be undertaken when a child, young carer (or adult caring for a child) is likely to have care and/or support needs when they turn 18 regardless of whether the individual concerned currently received support from children’s services.

b) Local Context

In Bradford District and Craven the journey to redesign services for people with autism has just begun and it is recognised that there are a number of reasons why this strategy is required. These include:

- Waiting times for diagnosis and assessment are too long resulting in distress for both the individual being assessed and for their families/carers - Pathways for supporting children and adults with autism in the District are fragmented across a number of different services - Reasonable adjustments to open up access to mainstream services for people with Autism and building on the Department of Health’s Think Autism strategy are required to ensure that the NHS, criminal justice system and benefits system are better able to support them - Proactive planning is required to support children and adults through transition points in their life (including school transition, puberty, child to adult services, starting work etc) - Provision of new protections for those with special educational needs in further education and supportive pathways into employment for young adults is required.

Page 88 A recent report by Healthwatch has also highlighted that there is insufficient support available for people within autism in the District especially if they don’t have a learning disability or a current mental health problem. It also highlighted that that people with autism and their families believe there is a poor understanding of autism within public sector services but especially in primary care.

An underlying issue for Bradford and Airedale is a recognition that we don’t truly understand the level of need locally due to a lack of joined up data and a sense that the diagnosis of autism is not always recorded or is a secondary diagnosis. Other issues contributing to a lack of clear understanding of need is that both nationally and locally there is under diagnosis in females and that many people who are autistic have never received a diagnosis and consequently will be not recorded in our data. This was highlighted in the recent Autism Self Assessment Exercise which has now been analysed by Public Health England. An action plan developed following this exercise can be found in Appendix 2 .

What is known is that the demand for assessment and diagnosis has increased markedly over the last 3-5 years across the full age spectrum and that the capacity of services delivering diagnostic assessment cannot meet this demand.

5. Statistics/ Key Headlines

The following statistics are recognised at a national and international level.

• Autism is a serious, lifelong and disabling condition. Without the right support, it can have a profound - sometimes devastating - effect on individuals and families.

• There are estimated to be around 700,000 people in the UK on the autistic spectrum

• Between 44% - 52% of autistic people are thought to have a learning disability (IQ less than 70)

• There is still a perception that ASD is a male condition and consequently there is an under diagnosis of females and a belief that diagnostic tools developed have been steered towards more easily recognisable male autistic traits.

• While autism is incurable, the right support at the right time can make an enormous difference to people's lives (although the balance between dependency on services and empowerment of individuals with autism is often difficult to get right)

• The identification of autism in children and young people can be complex and diagnosis must be undertaken with care to ensure that other possible causes/conditions have not been overlooked (the specific diagnostic test utilised in Bradford and Airedale takes around 22 hours of professional time to undertake )

• Caring for a child/young person with autism can have particular challenges and consequently families require support as well as the individual.

• Nationally 70% of adults with autism say that with more support they would feel less isolated.

• At least one in three adults with autism are experiencing severe mental health difficulties due to a lack of support.*

• Only 16% of adults with autism in the UK are in full-time paid employment, and only 32% are in some kind of paid work. *

Page 89 • Only 10% of adults with autism receive employment support but 53% say they want it*

• Suicide is a leading cause of premature death particularly in individuals with Asperger Syndrome (Sarah Cassidy and Jacqui Rodgers - Lancet Psychiatry)

(*National Autistic Society)

In relation to people with ADHD (particularly when undiagnosed or untreated) there is a recognition that they are:-

- twice as likely to commit crime and known to commit three times as many offences as those without the disorder - more susceptible to problematic drug/substance use - more likely to be socially isolated/without friends - more likely to attempt to take their own life ( 6. Why this strategy is important and who it is for?

This strategy is an attempt to outline what action is needed locally to support children and adults on the autistic spectrum and their families. For the vision outlined to be realised, shared action across all services involved and collaboration and partnership with anyone affected by autism is required. Some of the recommendations highlighted are about assessing and amending existing practice, recognising that services are not meeting always meeting the needs of individuals and families, whilst other recommendations are about changing practice in light of new research and learning.

Individual’s and family’s experiences of assessing support underpin each section below and ensure that the focus of any chance has a clear benefit identified.

The financial climate is challenging but there is a recognition that through greater clarity about the cost of services and building the economic case for a shift to a more preventative approach that significant improvements can be made. This includes ensuring that the interests of those on the spectrum are appropriately included in other areas of policy development such as learning disability and mental health services as well as self-directed support.

7. Planning for Neuro diversity services

a) Level of Need

It is widely recognised that at least 1% of the UK population are autistic (around 700,000). A recent study by the Department of Health’s Learning Disabilities Observatory carried out a systematic review to estimate the prevalence of autism amongst adults with Learning Disabilities. The review led to the conclusion that the prevalence of autism amongst adults with learning disabilities was likely to lie somewhere between 20% and 33%. The most recent study indicated that the prevalence of autism increased with greater severity of learning disability/lower verbal IQ. It has been estimated that around half of people with autism fall into the category of ‘High Functioning Autism’ – i.e. they actually have an IQ greater than 70. This variance in disability and the very nature of Autism means that the level and type of need can vary significantly and consequently a “one size fits all” approach is not appropriate.

Page 90 A recent review of social care data requirements carried out by the NHS Health and Social Care Information Centre (HSCIC) now known as NHS Digital has introduced a requirement on Local Authorities to begin recording ‘Primary Support Reasons’ and ‘Health Conditions’ within electronic social care record systems from April 2014, including Autism and Asperger’s Syndrome as mandatory fields. This information will start to be reported from April 2015 and it is anticipated that this will lead to significant improvements the availability and robustness of local data on levels of need and autism prevalence in the future.

In Bradford and Airedale there is no one source of data that gives an accurate picture of the number of children and adults living with autism but all local services across age spectrums are seeing an increase in referral numbers for assessment and diagnosis and an increase in overall diagnosis rates.

An epidemiology description of Autism Spectrum Disorders (ASD’s) is key to understanding the local level of need. The Bradford Council Public Health Department have undertaken an assessment which will help to inform public health policy, plan for education, housing and financial support services as well as broader health and social care provision – this can be found at Appendix 3.

Key findings include:

- Classic Autism has gradually evolved into the concept of a larger “spectrum disorder”

- ASD is highly heritable but environmental factors are also implicated.

- Multiple lines of evidence suggest the aetiology of ASD has prenatal origins. Onset of ASD symptoms typically occurs by age 3, although symptoms may not fully manifest until school age or later, and some research suggests symptoms can emerge between 6 and 18 months of age

- More severely affected children are more likely to be identified and reliably diagnosed at younger ages than milder cases

- Annual incidence rates of autism during the 1990’s showed a five fold increase in the UK. Although this incidence has since reached a plateau referrals for diagnosis and diagnostic rates have continued to increase.

According to PANSI (projecting adults needs and service information system) data the number of over 18’s in Bradford Local Authority area with autism was 3500 in 2015 with a predicted 10% increase by 2025 (to nearly 4000). Data relating to over 65 year olds shows a predicted increase of nearly 40% in this age category.

Local GP data showed that 1061 children (0-18 year olds) were recorded as autistic on the GP clinical system in 2013 in 2017 this has increased to 1896 (nearly 80% increase). The total number for people recorded as being on the Autistic spectrum on primary care systems is 3271 but national prevalence data indicates that in a population the size of the 3 CCGs (around 600,00 population) it is more likely to be in the region of 6000 to 8000 (1% and 1.3% respectively).

ASD - GP systems/Age 0-7 8-18 19 -30 31 -50 51 -112 Total

AWC CCG 115 481 288 89 35 1008

Page 91 Bradford City CCG 101 185 120 44 6 456

NHS Bradford Districts 238 772 542 201 54 1807

Total 454 1438 950 334 95 3271

In terms of ADHD there is an accepted 3-5% prevalence range in school age children. There are around 170,000 school age children in Bradford District and Craven but only 272 recorded in primary care as being diagnosed with ADHD ( prevalence suggests the range should be in the region of 5000- 8000).

ADHD - GP systems/Age 0-7 8-18 19 -30 31 -50 51 -112 Total

AWC CCG 4 73 106 28 5 216

Bradford City CCG 1 25 55 7 0 88

NHS Bradford Districts 6 163 304 53 8 534

Total 11 261 463 88 13 838

The Born in Bradford study has recently extracted data from GP systems relating to the cohort of children included in the Project. 4 This is attached at Appendix 2. The age of the children at date when the GP data was extracted varies, from just over 5 years old to just over 9 years old (mean age of 7¼ years). This data suggests that socio-economic factors play a role in whether a child receives a diagnosis at an early age and also identifies that children of mothers who are educated to A level or above are twice as likely to have a diagnosis at an early age compared to mothers with lower levels of education. This may be related to differing levels of engagement in the health care system but potentially demonstrates inequitable access to diagnosis.

b) Commissioning Approach

People with autism and/or other neurodiversity, and their families/carers need the support of well informed and committed professionals to ensure the best possible progress in all areas of their lives

4 The Born in Bradford cohort study was established in 2007 to examine how genetic, nutritional, environmental, behavioural and social factors impact on health and development during childhood, and subsequently adult life in a deprived multi-ethnic population. 12 453 women were recruited during pregnancy, at around 28 weeks; all babies born to women who agreed to participate in the cohort study were eligible for recruitment. All cohort members were asked for consent to link to GP records, the rates presented here are for the cohort of 12,388 children who were matched to GP records. For more information on the Born in Bradford cohort study: http://www.borninbradford.nhs.uk/

Page 92 across the full age spectrum. Currently commissioning for autism services takes place within different contexts including children’s services, Child and Adolescent services, council services and adult mental health provision. Legislation also states that there must be an identified lead across health and local authority who is able to influence and shape strategic thinking around the development of services. This leadership is currently being provided through the Transforming Care Programme. Our commissioning approach will be one in which we ensure the right services are identified, commissioned in an integrated way which supports children to adult and consequently meets both current and future need. There will be a clear pathway for pre diagnosis support (including practical support based on need rather than diagnosis) assessment and diagnosis and post diagnosis support which recognises that autism does not present in the same way across individuals and that need and support will vary. There is recognition that commissioners need to work collaboratively on defining the local pathways and this may include commissioning new pathways across a wider geographical footprint to maximise use of resources, share innovative practice and ensure timely access to specialist input.

Three broad priority areas are suggested in this strategy and they are:

•Reviewing and redesigning services to ensure access to assessment and diagnosis as soon as it is required and with minimum delay (and investing Early detection & time and resource in doing this) Diagnosis •. Currently there is no defined pathway in place for individuals presenting with these conditions •Ensuring that pre diagnosis support is available and based on need

•Ensuring pathways of care and support are clear, that services work together to improve the lives and opportunities for children and adults with Post Diagnostic support autism or other neurological development conditions and prevent, wherever possible, escalation into crisis services, admission to inpatient services or out of area placements

•Developing a training and autism awareness campaign across Bradford and Airedale (including raising awareness and skills withinwider public services), •Ensuring access to specialist skills at points of assessment for support and in order to enable improved access to mainstream services, supporting families and carers to access appropriate courses/training to help support their Awareness family member/carers •Raising general awareness within the local population. •Training and support for people with autism at particular points in their lives also needs to be reviewed eg training which provides specific support into employment.

All of these will require that the capacity of the services supporting children and adults through the pathways is able to meet the level of demand and that services have clearly identified which staff support these individuals and their families and that time spent, particularly on pre and post diagnosis work, is recognised in job planning.

Page 93 This will mean that statutory public services, voluntary and community sector organisations and individuals who are autistic and their families/carers need to work together to deliver this strategy. A framework will be developed to monitor and measure success against key recommendations in this report with a focus on ensuring that the anticipated benefit is delivered and a programme for implementation established. This could be led through the already established Autism Partnership Board if there was increased representation across the different agencies.

It is also worth stating that from 1st August 2016 onwards, all organisations that provide NHS care or adult social care are legally required to follow the Accessible Information Standard.

The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand and with support so they can communicate effectively with health and social care services. It also means that commissioners of NHS and publicly-funded adult social care must make sure that contracts, frameworks and performance-management arrangements with provider bodies enable and promote the Standard’s requirements. Further information can be found here Accessible Information Standard

8) Key Areas for Review

Following consultation with providers and service users 12 areas of review have been identified and key recommendations/requirements identified. These are:

a) Data/information b) Autism Awareness/training c) Defining a Pathway d) Learning Disabilities & Mental Health e) Transition f) Education and support g) Relationships/Carers/Families h) Employment i) Housing j) Undiagnosed/late diagnosis k) Older Adult l) Accessing mainstream services

Following approval of this strategy these will need to be prioritised and developed into an Implementation plan with named leads and governance to assure delivery. a) Data and Information

Few local authorities and health bodies collect enough information on the needs of their local autistic population – particularly adults. Improving reporting and effective local planning is an important part of this to ensure that services are reviewed annually. Westminster Commission on Autism 2016 recommended that consistent diagnosis-coding should be used in GP practices to establish a better data profile of autism and that autistic people should receive annual health checks.

Within Bradford District and Craven the completion of the National Annual Self Assessment process in relation to services for people with autism in both 2015 and 2016 demonstrated the lack of joined up data in the district. A key challenge being that ASD, ADHD or other neuro diversity may be the underlying reason that an individual is accessing support or services but will often not be the

Page 94 presenting reason. This is more likely to be a mental health issue or issues with behaviour. Transforming Care Programmes (TCP) have been tasked with utilising risk stratification tools to identify individuals prior to mental health services being accessed. This is particularly relevant for individuals who do not have a learning disability and who may not be “known to the system” until they reach crisis point. The areas for development are outlined in the action plan attached in Appendix 1.

Commissioning plans need to be based on the best available information about local need and as a minimum should include the number of children and adults known to have autism in the area and the support adults with autism need to live independently. A clear profile of the ages of the autistic population should be developed with particular attention paid to those people approaching a key transition – primary to secondary school, school to college, child to adult services, and those approaching 65 or above working age. This will also help to predict how need and numbers will change over time. Some of this information is available (as detailed in different sections below) but the analysis of this data and the integration of key information across different services needs development.

It is clear that the estimated prevalence rates for adults with autism can only be a very approximate guide to the actual numbers of people living with this condition in the District. Many children and adults with autism may never seek to be diagnosed particularly if they are able to cope and succeed at school. These people may, however, seek a diagnosis later in life if they find themselves unable to cope with significant changes in their lives and/or if they are either struggling to find employment or finding a work environment particularly difficult.

Accurate recording of information about individual’s with autism should ensure that people only have to tell their story once and shouldn’t have to repeat if to lots of different people which can be anxiety provoking particularly when in crisis. Services need to work together to ensure that the right information is passed between them, subject to usual consents, to help ensure that the right support is available in the right place at the right time.

More robust data is available in relation to our population diagnosed with ADHD due to the fact that when diagnosed most are prescribed medication and this will be clearly documented and monitored through clinical systems and requires regular check ups. However many people live with ADHD without diagnosis and again are “hidden” to services until there is a crisis such as a mental illness or police involvement. Many people with ADHD end up within the criminal system if their symptoms are not managed.

If diagnosed the fact that the medication often reduces the symptoms/difficulties faced by children and adults with ADHD and that the prevalence of ADHD reduces with age means that often the focus post diagnosis is more on medication compliance, stabilisation and support around any side effects being experienced.

Page 95 •Data Review of public services data systems (what is captured where?) •Ensure consistent data recording in GP systems •Ensure secondary diagnoses of autism/adhd are recorded Recommendations & Requirements •Record autism related attendances in services such as community paediatrics/child development centres and/or other services. •Ensure processes are particularly robust through transition (utilising data as an early indicator)

•Confidence in data systems and ability to ascertain local need for children and adults with autism How will we know? •Database of children/adults with autism and/or ADHD developed. •Able to complete Annual National Autism Self Assessment

b) Autism Awareness - Training including Workforce Development

There are statutory obligations on public service providers in relation to how they ensure staff and service models are autism friendly. Recent NAS guidance states that public sector organisations should collaborate and integrate training resources and ensure services such as job centre plus and local police are encouraged to share resources and budgets. In depth training should be given to all public sector staff including education, the police, fire service, nurses, doctors and office based staff who make decisions relating to people with autism. Where at all possible adults with autism, their families and carers and autism representative groups should be involved when commissioning and planning training. The Autism Act (2009) placed a statutory duty on Adult Social Care to provide autism training and specialist training to social workers.

In partnership health and social care organisations should ensure that there is a comprehensive range of local autism training that meets NICE guidelines for those staff who are likely to have contact with people with autism. Currently training and workforce development tends to be led by each organisation within Bradford and Airedale rather than as a collective. Training available in Bradford and Airedale should include:-

- Training for professionals who regularly interact with people with autism and/or other neurodiversity (including advice on appropriate environments in which people can be seen) - Training within all public services to ensure equity of access and proactive support to keep well - Autism Awareness training and a campaign to become an Autism Friendly City. This will help reduce fear and stigma and will help to tackle discrimination. - Autism support groups/resource centres and training and guidance for families/carers. - Specific training for individuals with autism dependant on need (eg support around employment)

Autism Awareness training and other training that supports people to help support children and adults with autism must be a priority for Bradford and Airedale. Enabling and supporting our autistic population to feel confident and comfortable in accessing mainstream services and to be able to easily access public places ensures equity of access. Being able to recognise signs of autism early on in an individuals’ life can help ensure appropriate support is put in place, and ensuring staff and

Page 96 services are able to make reasonable adjustments for people with autism make the difference between individuals having proactive support for their needs. A separate framework for approaching Autism Awareness training, workforce development and training and support for families/carers and individuals with autism has been developed. Recommendations to take this work forward are listed below.

Supporting families and carers prior to, during and following diagnosis to better understand their child’s needs is also a priority. Many families report that whilst waiting for diagnosis they are unsure how to deal with their child’s difficulties. This needs further exploration -see pre diagnosis section Cii) below.

“….I feel my sons behaviour has and is slightly deteriorating and I don't know what to do to help him. I don't want to make matters worse but I also don't want to "let his behaviour be acceptable" if he can help it…”

Many parents also state that, particularly prior to diagnosis, their child’s behaviour is being interpreted as “naughty” and consequently feel that they are sometimes being sanctioned unfairly through lack of understanding about neuro diversity and/or gaining a reputation for poor behaviour. Training and awareness is an area where technology could be exploited to maximise reach and to minimise cost. On line resource and information and interactive tools could be developed for the District or even on a wider footprint. For example Parliament has recently created a guide which can help people who experience anxiety or stress in new situations to “virtually” visit before they actually attend. This model could be replicated for appointments at GP practices, hospitals, and even to envisage what a diagnostic process may look like.

http://www.parliament.uk/visiting/visiting-parliament-news/new-online-guide-for-visitors- with-autism/

Within Bradford District and Craven a model of Autism Champions within specific council services has been developed but so far this has had limited success primarily due to the fact that this depends on the good will of individuals to champion changes to mainstream services to make them more effective. This should be reviewed and re launched with realistic expectations on individuals, succession planning and transfer of knowledge into services – this would be more feasible if neuro diversity awareness training was more wide spread.

Page 97 •Review and Re establish Autism Champion model •Establish a "charter" to demonstrate commitment within an organsiation to be autism friendly (in line with dementia) •Identification of staff who need to develop skills around supporting people with Autism/ADHD •Undertake a Training Needs Analysis Recommendations •Document what training resource is available in the District and whether it is fit for & Requirements purpose •Develop as a minimum a standard Neuro difference awareness training pack •Identify any gaps in training provision •Explore potential development of online resources including virtual experience resources •Develop a 5 year Training Plan for the District which includes all public services •Consider changes to estates/environments to ensure appropriate to need

•Training Plan in place which ensures consistency of approach across the district# •Service users/families/carers reporting better experiences How will we know? •Public Sector workforce feel confident in supporting people with Neuro difference •Online resources are available and accessed and updated as appropriate •Charters are utilised to demonstrate which organisations are committed to

c) Defining a pathway

In order to ensure an effective, equitable but flexible pathway (recognising individual need) is in place the Local Authority, NHS commissioners and providers, and other commissioned services including voluntary services must strive to work in collaboration and to ensure that a clear pathway, that can be easily articulated, interpreted and navigated, is in place across the full age spectrum. Access to diagnosis is key component of this but also knowing what post diagnostic support is available, even when the child/adult does not meet educational or social support criteria, is also important. This pathway must focus on a needs based model and recognise the duty of care to promote a person’s well being.

Parents/carers of children with neuro diversity often state that they are unaware of the process ahead of them and what to expect at each stage and also find it difficult to understand the language and acronyms utilised. Comments such as “the referral just goes into a black hole” and “who should we liaise with when waiting and how do we know if a referral has been made/received” are common.

i) Pre diagnosis

Children are referred for diagnosis either through their paediatrician (if they are under the care of one), through their GP, or through professionals working in nurseries and schools. Dependant on the age of the child they will either be seen by the Child Development Service, the Clinical Psychologist team or the CAMH’s Service (Child and Adolescent Mental Health Service). Whilst waiting for a diagnosis support groups such as AWARE (Airedale and Wharfedale Autism Resource) and BAS (Bradford Autism Support) will help families if they wish them to although is not necessarily widely known. Some people may not want to seek support until the diagnosis is clear but it can be helpful to make connection with these groups to access peer support around particular issues such as navigation of the diagnostic process, what support may be available post diagnosis and practical support around managing behaviour as well as peer support from other parents/carers experiencing

Page 98 similar issues. Waiting times for Diagnostic assessment are lengthy and growing (between 6 and 24 months currently). Carer support and information BEFORE diagnosis has been highlighted as a major concern in both AWARE and BAS

“I am currently applying for schools and there is little support. I'm hoping the joint assessment will be soon in the new year, I don't know what happens if he is diagnosed autistic but may be there may be more support and I can learn how to care for my son with autism or with the issues he has. I'm worried about school as it's quite clear he needs some support but every school has made it quite clear that without the EHCP he isn't entitled to it. So therefore my son will have to struggle. I'm hoping I will get the EHCP just so he thrives at school and I don't have the backlash of how he has "coped" at school like he does now at preschool! “

Families also report that the wait is often a very stressful time, with a sense of being in “limbo” with little or no guidance around approaches that were relevant to the issues the children presented. Training offered was not fit for purpose and had the negative effect of making parents/carers feel like they had bad parenting skills.

Signposting to online resources such as http://www.childautism.org.uk/free-information-pack may be helpful in the pre diagnosis stage. Key workers linked to individuals being assessed would help to guide and navigate through the pathway. Ideally pathways across the age spectrum would be similar, if not standardised.

Adults seeking a diagnosis of either Autism or ADHD are either referred via their GP or if they are accessing mental health services through the community mental health team to the BANDS (Bradford and Airedale Neurodevelopment Service). Prior to diagnosis support will be given either through the mental health service if one is being accessed or from the GP and/or social services if appropriate. Better alignment between statutory and non statutory (VCS) services could result in more integration in pre diagnostic support and the VCS taking more a role at this stage. Current feedback is that there is very little support offered currently.

Long waiting times are having a detrimental impact on both children and adults and their families/carers. There is confusion about who makes the diagnosis with parents often thinking that a referral to a Speech and Language therapist or Educational Psychologist will result in diagnosis. Parents/carers particularly need to be supported to understand what the process is and what may need to happen prior to actually been assessed specifically for autism or other neuro difference. For example a referral utilising the EA1 form to the Early Intervention Team at Education Bradford prior to diagnosis. This could include professionals ruling out other conditions that may cause similar behaviours or developmental delays. If parents were more aware of the process they would be better able to contribute and provide information that helps steer the child towards the appropriate pathway for their need.

(AWARE member/parent) “ waiting times are far too long…. (still) no date for assessment. In this time I see the happy, confident boy I had deteriorating. I cannot talk to him about being different without a diagnosis and it is harder for school to acknowledge and make reasonable adjustments”

Page 99 •Explore the possibility of a virtual hub or Single Point of Access (SPA) for neuro diversity (could be cross district or even regional) utilise resources currently in the system but create more joined up approach •Join up pathways (eg EHCP and diagnosis) where possible •Ensure as much information collated as early as possible in order to ensure effective triage and progression to diagnostic stage •Ensure clear information is available to parents/carers about the assessment pathway Recommendations & prior to the actual diagnostic process being undertaken and how they can contribute to Requirements this •Ensure at point of referral that effective signposting and support is given for current need including guidance sheet/advice •In relation to children better triangulation with schools at an early stage could be developed (ie could they be supported/trained to do the observation which is required before diagnosis given •The role of key workers/navigators should be explored to support families through the process

•Gap between referral and diagnosistic assessment is reduced •Parent/family feedback around pre diagnostic support/signposting . How will we know? •Better information collated centrally in relation to numbers waiting, where they are in relation to diagnostic pathway •Clear and documented pathway outlining each stage/what to expect/what options are available (jargon busting utilised)

ii) Diagnosis process and responsibilities

Health services have a statutory responsibility to provide assessment and diagnosis of autism for children and adults. Pathways for children and adolescents in Bradford and Airedale are currently under review, primarily because demand is far exceeding capacity. Service providers are working collaboratively in an attempt to make the diagnostic pathway a more streamlined and standardised process. Recommendations about changes required are expected to be presented to commissioners along with costings in 2017. However, the general feeling is that unless more funding is made available there is unlikely to be a significant impact on waiting times/lists. Commissioners across West Yorkshire have requested a scoping exercise to be carried out to determine what potential there may be to transform services across the region by working in a more collaborative way. Early findings were shared in March 2017 with further work to be undertaken to bring commissioners to a collective agreement with regard to priorities. Public Health England’s report on the Autism Self- assessment audit undertaken by local authorities identified a number of areas for the West Yorkshire region which needed development. These are listed at Appendix 4.

Within Bradford and Airedale 3 different service providers (Bradford District Care Foundation Trust, Airedale Hospitals Foundation Trust and Bradford Teaching Hospitals NHS Trust) deliver the diagnostic process for under 19 year olds. Professionals from a number of different services are routinely involved and ensuring alignment of assessments before they are brought together for final assessment can be a complex process.

Under 5’s who have been either under the care of Paediatricians or the Clinical Development Service primarily due to delays in their development are currently assessed within that service. This service includes children with a learning disability. Child and Adolescent Mental Health Services and Clinical Psychology at Bradford Teaching Hospitals are involved in the diagnostic assessment for over 5 years old. A process called a Joint Assessment Clinic (JAC) is often adopted. This brings together a number of different professionals to review the information available about a child. A diagnostic tool called the Autistic Diagnostic Observation Schedule (ADOS) is used by all these services and staff have to be trained in using this process. All of these services are seeing significant increases in referrals and

Page 100 Clinical Development Services are reporting that a high percentage relates to children with autism (often alongside other disability).

Until fairly 2015 adults requiring diagnostic assessment for either ADHD or Autism were funded for assessment through the Individual Funding Request (IFR) process at the CCG. The Bradford and Airedale Neurological Development Service (BANDs) was set up using the monies that had historically been used to fund the IFRs and referrals are made from either GPs or community mental health professionals. Adults with a learning disability are not able to access this service but are assessed by psychologists in the Learning Disability Service. However, referral numbers were triple what were expected in the first year. This meant that after the first year of running the waiting list and associated times were so high that the service had to close to new referrals. Work is currently underway to ensure that service can reopen shortly. The Diagnostic Interview for Social and Communication Disorders (DISCO) tool is used to support diagnosis in adults.

Families, carers and individual’s awaiting assessment report that the time they have to wait is not acceptable and can have significant impact on someone’s mental health and wellbeing.

“ ( I have) a real significant worry about the impact that the waiting time will have on his mental health and his academic performance as he is bright but held back”

The diagnosis is the clinical confirmation of a condition and is undertaken by a number of different professionals. It can help individuals and their families/carers better understand why they might behave or react in specific ways in certain conditions. In child hood it may change the way that children are supported at school and will feature in the Education, Health and Care Plan, (EHCP) process although not all children with autism have an EHCP.

As a result of the long wait to access the assessment for diagnosis in Bradford and Airedale a redesign of the current children’s pathway is being undertaken which aligns to the adult pathway (ie addresses Autism and ADHD within the same pathway). However even when streamlined it is unlikely that this will significantly reduce waiting times. The BANDs service has recently received some additional recurrent funding in an attempt to address demand on the over 18 year olds service. However, because the service has been closed to new referrals since April 2016 and there has been an unfilled vacancy within the service the backlog is significant. As at December 2016 over 100 people were waiting for assessment and once the service re opens to referral this is likely to increase significantly again.

The potential to align developing and existing pathways with a common front end (single point of access) should be explored as should the possibility that the over 7’s pathway and adult diagnostic pathway could be merged and become one service. This would better utilise the resources available and ensure economies of scale are realised and resilience to staff leaving established. Within the health component of the diagnostic pathway an MDT approach is already recognised as best practice and clinics undertaking the formal diagnosis (JAC) already involve many different professionals. Further establishing this model of working by having staff dedicated to the Autism/ADHD service, rather than undertaking some assessments as part of a broader job role, would establish clearer time commitments and improved working relationships. It would ensure that individual assessments are not being undertaken in vastly varying time frames. For example currently an SLT assessment may take place up to 2 years before the actual JACC which potentially makes it out of date at the point of the diagnosis taking place.

A number of services nationally have begun to recognise that developing a single point of contact route for referrals and request for autism assessment can be helpful. This ensures that data is

Page 101 recorded centrally and that an initial triage process can take place ensuring that as much information as possible is collated prior to being passed to the appropriate service to make a diagnosis. Services report that the stage between referral and actually having the relevant information collated and available to make a diagnosis is time consuming. This could potentially be something that is undertaken centrally and needs exploration.

A very simplified pathway to diagnosis (certainly for the over 7s where other developmental issues can be ruled out) could be adopted. Individuals may be signposted away from the pathway if Autism and/or ADHD is ruled out at any of the stages. An attempt to align this with parallel processes (SEN provision, ECHP, Social Care support etc) and to embed this into the Bradford and Districts Local Offer Guide, would be made by closer working across agencies (preferably co-located and dedicated to the Autism service for example social worker presence in an assessment and diagnosis service in other geographical areas has led to improvements in transition into post diagnostic support and signposting, and observations made within educational settings could be utilised within the assessment process). The work on the children’s pathway will potentially provide a platform to build on but commitment will need to made from individual organisations to participate, contribute to and ultimately sign up to a new model of integrated pathway within Bradford District and Craven and resource identified to help shape and drive this. By offering Self Referral there would be a recognition that Autism/ADHD assessment and diagnosis does not need gate keeping unlike other potential investigations required in primary care – Autism and neuro diversity are life long conditions not a presenting illness.

Parallel processes around school observation, SEN/EHCP, social care involvement to be “aligned”

Single Point Referral Assessment of Access Initial with including self advice, signposting, screening ADOS/DISCO referrals – standard documentation of (with information need, information, available ) (decision about referral diagnosis made) form/questionnaire collation/liaison around assessments

Key Worker to support throughout process (explore possibility of VCS role)

A target should be for an initial appointment within 12 weeks of receiving the referral as per NICE (2014) quality standards. The screening stage would help to identify anyone where there were serious mental health problems that had not been addressed and should be used to decide whether or not to proceed with the full diagnostic process.

Page 102

•Commissioner to review all possibilities to reduce waiting times including possibility of regional collaboration •Waiting list process to be reviewed - what pre diagnosis support is available, key workers allocated, single point of access /clear information point. •Pathway review to streamline and standardise diagnostic process is undertaken (to include health, education, Local authority provision) •Pathway is clearly documented and shared across appropriate public services Recommendations & and made available to general public Requirements •Ensure the timing of assessments are aligned (to reduce delay) •Improve links between partner agencies and explore possibility of training educational establishments to undertake observation component of pathway in an attempt to speed up the process •Focus on ensuring diagnosis is given within NICE guidelines timescales (3 month wait) •Ensure the clinic environment is appropriate to need

•Reduced waiting times •Families/carers feel better informed about the process How will we know? •Effective collaboration between all parties involved in supporting an individual (eg across health and social care) •Clear articulated pathway in place

iii) Special considerations in diagnosis

Late Diagnosis

Many adults with autism and/or ADHD report that getting a diagnosis can be a relief after years of feeling different or not fitting in. It can also lead to feelings of anger or sadness at not being diagnosed earlier and having had to struggle unnecessarily.

Diagnosis is just as important for adults who never had their condition or sensory issues recognised at an earlier stage in their life. Some adults might have been receiving care and support from either Learning disability or mental health services where their autism wasn’t always recognised or supported. Both mental health services and learning disability services locally must have the training and skills to support individuals with ASD or other neuro diversity.

Diagnosis of Females

The National Autistic Society (NAS) states that five times as many males as females are diagnosed with autism 5. According to the NAS survey in 2012 of 8,000 people with ASD just 8% of girls with Asperger syndrome were diagnosed before 6 years old compared with 25% of boys. Only 21% of girls with Asperger’s were diagnosed by age 11 compared with 52% of boys. Females with autism show

5 The proportion of males as opposed to females diagnosed with autism varies across studies, but always shows a greater proportion of males. Fombonne at al (2011) found a mean of 5.5 males to 1 female in their research review.

Page 103 fewer repetitive behaviours than men with the condition on a standard diagnostic test and learn to “mask” their condition. This difference may lead to a ‘partial’ diagnosis for many females, qualifying them for only limited services and/or confusion about whether they are likely to be diagnosed at a later stage. It is believed that just 1 girl with autism is given a diagnosis for every 10 boys (where there is no learning disability) and most diagnostic assessment are based on research in boys with autism and may be biased towards behaviours typically seen in these boys. Gender differences are less marked in adults with learning disabilities compared with the rest of the general population.

Recent research points to the possibility that women and men with autism present differently and may benefit from diagnostic tools that take gender differences into account. The Adult Psychiatric Morbidity Survey recorded people in private households, and found a prevalence rate of 1.8% male compared with 0.2% female, (Brugha et al, 2009). However, when they extended the study to include those people with learning disabilities, who were not part of the Morbidity Survey, they found that the rates for females were much closer to those of the males in the population with learning disabilities (The NHS Information Centre, Community and Mental Health Team, Brugha et al, 2012). Research around this area is emerging and should be taken into consideration.

The NAS also report that girls are at higher risk of being misdiagnosed due to their entirely literal responses to clinicians. For example responding to questions about “hearing voices” or “seeing people” may lead to a misdiagnosis of schizophrenia or other mental illness. This misdiagnosis or undiagnosed ASD can mean the right support is not given and this leaves them particularly vulnerable. The 2012 NAS survey highlights that 38% of females with Asperger’s have another serious mental health condition.

Recent Born in Bradford data demonstrates this difference (this includes children with a learning disability as well as autism)

Child Gender Est. CI Low CI High

Male 1.58% 1.28% 1.89%

Female 0.42% 0.26% 0.58%

Source: Born in Bradford Cohort

Post diagnostic support can be particularly helpful for these people and peer support groups might could be developed.

Support for Family Members

Another special area of consideration through the diagnosis process is the requirement to support family members/carers. A recent consultation at Bradford Autism Services (BAS) identified that the majority of parents didn’t understand the diagnostic pathway, who was involved, what was actually being assessed and how, and why this was necessary. During this process they felt very vulnerable and protective of their children, frightened for the future and what diagnosis may mean for both them and their child. 95% of parents consulted said their own health issues (both physical and mental) were affected. Social isolation and depression are often reported. Again a key worker role could be just as important for the family (including siblings) as it would for the individual being assessed.

Page 104 • Need analysis to look at under diagnosis in females • Potential to collaborate across the Region to assess diagnostic tools used and to undertake research or adaptation to make more "female" friendly Recommendations • Ensure that people receiving a late diagnosis are & Requirements supported post diagnosis if they are feeling issues of anger and upset • Develop and support peer support groups and work in collaboration with current voluntary/charitable organisations to progress these

• Improved support for people with a late diagnosis How will we know? • Needs assessment utilising recent research and evidence undertaken with regards to under diagnosis in females

iv) Mainstream Post diagnostic support

There is no standardised pathway or process following diagnosis for any age, although children and their families do receive a pack of information once they are diagnosed. This could be because a “ one size fits all” service is not appropriate for people with neuro-difference. Services like BANDs were initially offering individuals some post diagnostic support but this has had to be reduced in order for the service to concentrate on addressing the increasing demand for assessment and diagnosis which is health’s statutory responsibility. A review of what post diagnostic support is available for both adults and children needs to be undertaken including signposting to online resources and potential peer support groups with particular focus on Social Care Assessors having specialist knowledge of Autism and other neuro diversity to ensure care assessments are undertaken appropriately.

Comorbid disorders are high in people with autism. Children are likely to present with ADHD and depression is a common diagnosis in both teenagers and adults meaning ongoing support post diagnosis is key. Early intervention for these comorbid disorders is key to ensure early intervention and prevention of escalation. Carers are often critical in relation to identifying symptoms early but often report that there is little support until they are in a crisis situation. Other disorders commonly associated with autism include sensory problems, seizures and epilepsy, ADHD, bipolar disorder, Obsessive Compulsive Disorder (OCD), Tourette Syndrome, General anxiety, gastrointestinal disorders amongst others.

Anxiety requires special attention because of its higher prevalence with recent studies reporting that 84% of people with Autism had symptoms and met the criteria to be diagnosed with anxiety disorder. Treatment for anxiety disorders can sometimes be managed through medication or through individual or group therapy (such as Cognitive Behavioural Therapy – CBT) where techniques to explore the diffusion of anxiety can be explored. This may include relaxation or distraction techniques but again would need to be tailored to ensure that it is appropriate to people on the autistic spectrum with/without ADHD.

Page 105 Following diagnosis individuals should be signposted to what resource and support is available to them. Links to social care at this point are key. Individuals, whether diagnosed or not, can request a social care assessment where the assessor will look at the outcomes that matter to the individual and the impact their needs have on their wellbeing. The assessment is how the local authority will decide whether a person has eligible needs for publicly funded care and support and the council has a legal duty to ensure these needs are met. Recent guidance developed as part of the Transforming Care Programme identifies that personal health budgets should be considered as a default option 6

Assessors must be able to carry out assessment of particular conditions which means they must be informed and trained in understanding Autism. If a professional lacks sufficient experience of autism they must consult someone who does have experience. The Autism Act statutory guidance provides additional detail on the level of specialist knowledge that assessors are expected to have in autism. In addition to basic awareness they are expected to use appropriate communication skills for people with autism and should know how autism may present itself across a lifespan and levels of ability and the relevant pathways and screening tools that can be used. Particular attention should be made to good practice guidance in relation to an individual with autism’s capacity to assess risk.

The council must arrange for some people to have an independent advocate with them at the assessment if the individual doesn’t have someone one else to support them (like a friend or family member). It must also be offered if an individual has substantial difficulty communicating what they want to say, understanding information given to them or making decisions about their support. The Care Act also introduces for the first time a duty on council to meet the eligible needs of carers as well as the individual with needs. This is assessed against specific criteria of which two components are particularly important for adults with autism – “maintaining family or personal relationships” or developing them (one in four adults with autism say they no friends and they need support to improve social skills) and secondly the criteria relating to “being unable to achieve an outcome” which also includes not being able to do so without assistance, prompting or supervision. 65% of adults with autism are estimated to need prompting to wash, dress and prepare food.

If found eligible for support a care and support plan will be developed if they are not found eligible then written guidance on how their needs could be met should be made available and support offered to interpret this.

Access to educational support for children such as an EHCP can be difficult to navigate. Benefits for either adults with Neuro-difference or carers may be available following diagnosis as could self directed support and personal budgets. These systems and processes are particularly hard for people with autism to navigate and families/carers of children with autism state that the energy required to “keep knocking on different doors until one opens” is exhausting. People with ADHD may also have additional problems such as sleep and anxiety disorders. Post diagnostic guidance on what is available including advocacy if appropriate or opportunities for support in seeking jobs are all key priorities in the post diagnostic pathway.

6 NHS England – September 2017Developing support and services for children and young people with a learning disability, autism or both

Page 106 •A review of what support is available post diagnosis needs to be undertaken and this resource identified •Assessors of post diagnostic support should be trained appropriately to be able to support people with Autism/ADHD •Anyone receiving a diagnosis should receive information (or be Recommendations & signposted to relevant online resources) to support them in Requirements their next stage of the pathway - this must be more than a "pack of information" and should include Jargon busting literature (eg information on EHCPs etc) This should be linked to the local offer •Advocates should be identified in order to support individuals access appropriate support post diagnosis

•Reduced "crisis" intervention required for individuals post diagnosis. •Clear documentation that it agreed across all public and How will we know? voluntary services involved in post diagnostic support •Feedback shows a more person centred approach is being adopted

d) Learning Disabilities and Mental Health/wellbeing

Around half of people with autism also have a learning disability and around a third of learning disabled people are thought to be autistic. At least one in three adults with autism experience severe mental health difficulties due to a lack of support 7. The law states that mental health, and other public services must make reasonable adjustments for people with learning disabilities and people with autism. This means services must be adapted to make them easier to use. This can be a challenge when services are initially designed and set up for non-autistic children and people and can result in someone who is neuro-diverse changing their behaviour because they are anxious and upset.

“ one of the most debilitating symptoms for those on the spectrum is anxiety – it can be crippling and can lead to isolation. Little support is available and it can be extremely debilitating for those who suffer with it.”

Anxiety is a very common experience for children and adults with autism and ADHD. There is a 40-50% prevalence of symptoms of an anxiety disorder at any one time, compared with up to 15% in the general population. Many people on the autistic spectrum can have difficulty describing the symptoms they experience which then may exacerbate and result in anxiety and depression or worse. Preventative support is required to help people with autism to be able to describe how they are feeling and to be able to seek appropriate help; particularly as many people on the autistic spectrum find change daunting and anxiety provoking. In relation to ADHD symptoms often include an inability to focus, disorganisation and restlessness. This can lead to difficulties in organising their lives, remembering details and completing tasks and this in turn can severely affect their relationships at home, school and make it difficult to gain employment. Alongside anxiety disorders people with ADHD are likely to experience depression or other mental illness and these can significantly impair the ability to function.

7 Rosenblatt, M (2008). I Exist: the message from adults with autism in England . London: The National Autistic Society, p3

Page 107 Carer support is also an important aspect here. Knowing how and when to access appropriate mental health services can be difficult to navigate and many parents report their frustration at not being able to help identify the right support (which is appropriate to need and where consideration has been made around appropriateness for people with autism),

Some mental health difficulties in people with autism may relate to issues of gender identity. Gender dysphoria, the feeling of incongruence between a person’s anatomical body and their gender identity, is more common amongst those with autism than the general population. A range of psychosocial and medical input is available to gender dysphoric children and adolescents including those with autism via the Gender Identity Development service at the Tavistock and Portman NHS Foundation Trust (northern base in Leeds) www.gids.nhs.uk and for over 18 year olds through specific Gender Identity Clinics provided in Leeds, Newcastle, Nottingham and Sheffield – see links to relevant service. http://www.leedspft.nhs.uk/our_services/gender_identity/ http://shsc.nhs.uk/service/gender-identity-service/ https://www.ntw.nhs.uk/sd.php?l=2&d=9&sm=15&id=240 https://www.nottinghamshirehealthcare.nhs.uk/nottingham-centre-for-transgender-health

Good connections with these services should be made by providers of care.

Awareness training as highlighted in section 8b) above can help to ensure that staff who work in services accessed by people with autism make these reasonable adjustments and to reduce anxiety levels when interfacing with services. It is particularly important in mental health crisis services and services such as police and youth offending teams. Within Bradford and Airedale significant process has been made in supporting both children and adults in crisis. The First Response team, and services such as The Haven within the Cellar Project and the Sanctuary which is run by MIND. Analysis of the number of people accessing these types of service who have autism is required to understand the local need and to ensure that services are autism friendly and that reasonable adjustments are routinely made for individuals with ASD or other neuro diversity accessing these services .

Greater understanding of the numbers of people with autism known to both Youth Offending Services and to the police would also enable direction of more appropriate preventative support to individuals with autism.

Page 108 •Needs analysis of numbers of children and adults with autism known to either the youth offending team or to the police •Greater support for both individuals and their carers to be able to access appropriate services and support prior to a crisis •Needs analysis of numbers of children and adults with autism accessing mental health "safe place " services Recommendation & •Review of numbers of people (and their stories) being admitted acutely Requirements and/or into a secure provision in or out of the district and actions taken to prevent this escalation •Services for adults and children with learning disabilities to review their level of support and "reasonable adjustments" made for people with autism •Ensure mental health providers have adequate training and skills to support individuals with ASD or other neuro diversity to ensure that appropriate support and care is given.

•Reduced number of autistic people accessing crisis services •Reduced number of autistic people being involved in crime or being in How will we know? trouble with the police •Reduced number of people with autism/adhd being admitted to the ASsessment and Treatment Unit and/or being placed outside the district.

e) Transition Points

The Autism Education Trust has created guidance that supports the fact that people on the autism spectrum have difficulties in predicting what might happen in a new setting so prefer to stick with what is familiar. Difficulties in social understanding can mean that it takes them much longer to understand the expectations and social rules of a new environment and difficulties in interpreting social cues, may mean that a person with autism does not know how to respond or how to behave in the new environment and that their anxiety levels are raised.

In Bradford and Airedale transition support is available if moving from child to adult health care services and support is given in schools around transition from primary to secondary school or leaving school to go on to further education and accessing apprenticeships. However, families/carers often report that transition points need proactively planning much sooner than they currently are. Because transition points can trigger high levels of anxiety and upset then they should automatically be considered as another priority area for this strategy and further work assessing the need and understanding current resources involvement should be undertaken. This will include understanding the different roles that services play in transition (across health, education and social services into employment, housing and even entering into significant relationships).

“My son is now aged 18 years and managed to do quite well at A’ level and is therefore deemed “ok”. He has no diagnosis but I am sure he is on the spectrum and we are trying to have him assessed. He is trying to sign on for benefit ….. He can’t manage work situation and finds it difficult to communicate and has started to realise this himself. … He is unable to cope with every day things and is struggling but can’t get any support financially. We are stuck”

Many teenagers leaving school, or adults leaving tertiary education, potentially become “lost” to the system until they are physically or mentally unwell. A positive of being in an education “system” is that there needs should be known, even if they are not always met.

Page 109 Each service has a role to play for example school nurses lead and deliver the Healthy Children Programme (HCP) for ages 5 to 19 which plays a crucial role in supporting the emotional and mental health needs of school aged children 8. School age children should also benefit from current government action to support schools in promoting resilience and prevention of mental health problems. The Department for Education (DFE) is leading to improve the quality of teaching about issues such as managing anxiety and stress , and to support schools to tackle bullying (including cyber bullying).

• Guidance around key transition points for children through to adulthood should be developed. • Services involved in major transitions, such as starting school, leaving primary school, leaving school or accessing adult services should identify what resource is Recommendations available at each of these stages & Requirements • Tools to support transition points should be including in parental training and guidance • Early indication of transition points must be built in to ensure that that planning, support and advice is given as early as possible

• Risk of high levels of anxiety at transition points are reduced How will we know? • Families/carers feel able to plan and support through transition points

f) Educational Support

Parents and Carers of children either waiting for diagnosis of autism or with a diagnosis have reported that starting school is often a particularly difficult time and that with hindsight they wish they had known more about how autism can be supported in schools. Parents/Carers need advice and support around choosing the right school for their child, and being better informed about what to look out for – however this doesn’t detract from the fact that all schools should be equipped an able to support a child where mainstream school is the most appropriate setting. Jargon used can be difficult to interpret and there needs to be better transparency about provision prior to starting school.

Parents/families routinely report a “postcode lottery” in terms of school provision and support around children who are autistic and/or have other neuro differences. Reports include the fact that schools don’t always differentiate learning, don’t make reasonable adjustments and don’t communicate with the families about any approaches they are taking. This can be particularly challenging due to the long waits currently in existence for assessment and diagnosis as until diagnosed there is often a view that the school doesn’t need to acknowledge the issues and the child is often labelled naughty or disruptive. Parents/carers feel that if an individual has issues with social interaction/communication, social imagination and sensory issues then these will be very apparent within a school

8 Future in Mind – promoting, protecting and improving our children and young people’s mental health and wellbeing – Department of Health and NHS England 2015

Page 110 setting and don’t just “appear” when diagnosis is made. Educational Psychologists can have a key role here in terms of identifying what a child’s specific needs are but local resource is limited.

School funding and what additional funding particularly can be made available to children with neuro difference (with or without an EHCP) can be complex for parents/carers to navigate. Core educational funding, additional support funding and top up funding is available dependant on level of need. Easy access for parents/carers to information about Special Educational Need (SEN) funding and ring-fencing of school SEN budgets should be made available.

Often, particularly where there is no learning disability present, the suggestion that a child may have autism is only raised when a child has either started attending a nursery or a school. Support at this stage, including navigating the SEN system, is reported as a weak point locally. Training could be offered to support parents to understand SEN processes. Parents also report challenges in trying to find the right information and often rely on other parents/carers that have been through the process using groups such BAS and AWARE for this.

Data is developing in terms of information about children with autism in schools. Around 800 children are known to the Autism support service for mainstream schools in the District and around 300 children for whom autism is the main diagnosis are in special schools in the district. For pupils with a primary need of Autism as at December 2016 54 pupils were placed in independent provision or out of district. Education data shows that Autism is the most common feature in EHCP requests.

Many individuals with Autism, particularly those with Asperger’s Syndrome (which is considered the “high functioning” end of the autism spectrum) will move onto Tertiary education after school and with the right support can be a perfectly viable option. But many adults with Asperger’s are undiagnosed and that is why it is important to raise awareness. It is unclear how many individuals with Autism and/or ADHD are accessing University or College and what proportion are completing their studies. Having a diagnosis can bring reassurance and better support. Universities have access to guides such as the National Autistic Societies guide to assisting AS students .

Support to help manage behaviour of children is given in a number of services. Being on the autistic spectrum and/or having ADHD can mean that individuals are more likely to behave in socially inappropriate ways. This could be being aggressive or having tantrums and/or engaging in self-stimulatory behaviour, like rocking or hand-flicking. This can lead to them hurting themselves or other children – for example, by head-banging or biting. Parent/carers and schools may need support in managing these behaviours which can lead to individual’s being unable to access the very services that they need. Services like BEST offer behaviour support for children with very challenging behaviour but this is focused specifically on individuals with a learning disability.

Page 111 •Information and support given (standard information for the district) at nursery /schools once autism is suggested •More transparency around which schools are better able to support autistic children including ring fencing funding where possible •Review of increases in numbers of children being identified as autistic and or diagnosed with ADHD in both mainstream and special schools •Potential review of out of area placements - could these be brought back into Recommendations & local provision? Requirements •Work with local universities/college to ensure appropriate support is in place •Identify opportunities for accessing apprenticeships locally •Ensure cross border issues are kept to a minimum (living in one geographical area, attending school in another) •Capture and share best practice from schools/colleges •Map where and how carers or services can access support to help with behaviour management in relation to neuro diversity

•Fewer children moving schools once diagnosed •Parent/Carer feedback regarding confidence in navigation and support How will we know? through educational system •Children with autism thriving and assessing tertiary education

g) Relationships/Carers and Families

Getting a diagnosis can help individuals better understand their own behaviour and others, and improve relationships no matter what stage in life diagnosis is given.

“ I feel that my diagnosis has improved my relationship with my Father as he better understands how I am feeling and my needs”

However, the effects of autism on the individual and their family can be significant. Loneliness, lack of friends, few social activities and little support alongside an individual’s constant challenge of trying to “fit in” are amongst the most common issues that people with autism and their carers face and the impact can be devastating. Autistic people commonly develop stress-reducing behaviours that can make them appear strange or unruly and lack of awareness around autism in society can mean that they are judged for behaving inappropriately. Parents/carers often state that they avoid taking their child out to public places rather than avoid the reactions from people who do not understand the situation. This in turn causes not only the individual with autism but their family to become housebound or isolated and this can have a profound effect on their own wellbeing. Teenagers are particularly prone to feeling both frustrated and isolated, and siblings can suffer from being in a stressful environment feeling unable to socialise because of their home situation. Having a support network of people around that are well informed about autism and ADHD, understand an individual’s particular needs and who are, in turn, also supported themselves, can ensure that anyone diagnosed with autistic and ADHD stays well.

Page 112 “Some of those with symptoms as children (undiagnosed or not) are now being picked up by drug and alcohol services as adults as they used drugs or alcohol as a means of dealing with their anxiety – this is having a knock on effect on those services, particularly if the person was not diagnosed as a child and now has no diagnosis as an adult” (from Healthwatch)

Parents and carers can also become isolated or depressed and exhausted from looking after their children and feeling that they need to fight for support. The stresses of living with someone with autism can also cause families to break up which adds to the feeling of isolation and despair.

Carers need to be able to lead healthy, fulfilling lives too and this strategy supports this. Carers help and support children and adults with neuro-difference but this can have a massive impact on their lives. Supporting carers to keep well and recognising that this may impact on aspects such as being able to work regular hours or maintain their own relationships needs further consideration. The availability of awareness training for carers and/or peer support groups, getting access to relevant services within acceptable timescales, can ensure that Carers remain supported throughout their own lives.

• Review of what support is available to carers and families ensuring appropriate access to training, peer support and respite • Ensure support is available pre diagnosis where appropriate Recommendations & Requirements • Ensure support is available for individuals who do not have a learning disability & who may not be known to specialist services • Ascertain what number of people with autism live with their familiy and determine what impact this is happening

• Reduction in numbers of families breaking up • People with autism either able to stay with parent/carer How will we know? or live independently increases • Local information around what support is available is routinely given to carer/parents

h) Employment

People with autism have skills to bring to the workplace and with the right support, they can make a valuable contribution in the work environment. Employment helps people with autism feel valued by society and results in significant psychological and social benefits. However, only 15% of adults with autism are in paid full time employment and 9% in part time employment compared to 48% of people with general disabilities in full time employment. A much greater number of people with autism want to work and could do so if able to access appropriate support.

Page 113 Luke Jackson – author, public speaker and blogger on all things Autism draws on his own experience in his writing and outlines how people with autism can make great workers, are able to concentrate for long lengths of time and can think laterally to help find solutions to problems. His view is that the fact that a large proportion of jobs require consumer interaction and all jobs require interaction with co-workers can be where the difficulty in getting and maintaining employment. He states “ If employers aren’t educated about the problems that people with Asperger’s Syndrome and Autism face, then often people on the Autism spectrum will find themselves dealing with disciplinary measures, hassle from peers or superiors” (Luke Jackson).

Autism specialist supported employment schemes can result in significantly higher rates of employment as well as employer and employee satisfaction, compared to generic disability employment services. There are clear benefits of working collaboratively with neighbouring regions to support autistic people into employment and to establish standard support and good working relationships with Job centres and DWP and to make the most of initiatives such as Access to Work which provides a service that helps get people with either a disability or after illness into, or back into, work by contributing to the employer’s cost of making appropriate adjustments in the workplace such as equipment or additional support. Information about this should be made available in one place for the resident population alongside other neuro difference specific information.

Although support to find and sustain work should be available to all people who require it, some people with disabilities feel unable to access appropriate support. For example, very few government-funded schemes benefit people with autism seeking employment. Government priority PSA 16 aims to increase the proportion of socially excluded adults in employment, including those with learning disabilities or mental health conditions. Although people with autism are often both socially excluded and keen to secure employment, there is a risk that such strategies will again neglect them. Local multi-agency employment strategies, linked to PSA 16, must start to be more inclusive of people with autism.

•Review what support is currently available to those seeking employment •Work collaboratively over a wider geographical footprint to establish effective training and support •Standardise process and opportunities with Job Centre and DWP and ensure information is accessible Recommendations & •Development of support package for adults trying to develop Requirements their skills to secure a job (or for career progression) •Partnership development between DWP, health and social care to identify and support young adults particularly •Scope out /promote and support employers who recognise the value that people with ASD can add to their organisation •Identify how the system can help prepare long term unemployed people for work such as work experience/training

•More people with autism/ADHD in paid employment •More people with autism/ADHD progressing in their chosen How will we know? career path •More people with autism/ADHD being offered an alternative to an interview (ie work place trial)

Page 114 i) Housing

There are many people with autism who do not have a learning disability or a debilitating mental illness and who are living independently or in either residential services or supported living but nationally almost half of adults with autism who are 25 years old or older continue to live in the family home and over half are dependent on their parents for financial support. This is a cause of concern for carers because as they, in turn, grow older they begin to worry about who will look after their dependents in the future.

Very few adults with autism have sufficient choice and control over where they live, the type of housing or the support they receive. As it is a spectrum disorder, adults with autism require a range of different housing options from fully independent (with some support), to clusters of units with communal areas, to small group homes. The home environment is of particular relevance for those people who have severely debilitating sensory, perceptual and social difficulties for whom many types of accommodation are not appropriate.

Out-of-area placements can result in lack of investment in local services, which in turn results in further reliance on out-of-area placements. Local housing strategies therefore need to be more inclusive of the future housing needs of people with autism. Bradford’s housing strategy is currently being refreshed and particular attention should be paid to the current and future needs of people with autism. Older Adults with autism, that have lived with family all their lives, and find themselves needing to move when family can no longer cope, get ill themselves or die, are of key concern.

When people with autism are placed in the wrong environment it can cause them extreme anxiety and result in increased support needs so it is essential that the location of the home reflects their individual needs and preferences. Houses may need adaptation such as consideration of sensory sensitivity to certain sounds, lights or colours.

Adults with autism will require varying levels of support within their home. Supported living involves housing and support being offered by separate providers so that the person with autism will not need to move house even if there has to be a change in support provider. All staff providing the support should have good understanding of the often hidden needs of adults with autism and should be included in the Training Review highlighted in section 8b).

Relevant support will match individual need for example some people with autism may only need a few hours support a week to undertake specific tasks, but others may need support daily to ensure that they are kept well and safe.

Page 115 •Review housing strategy to ensure that the needs of people with autism are reflected within the documentation Recommendations •Mapping exercise to determine whether volume of & Requirements people anticipated to need housing over the next 5 years can be accomodated in appropriate provision •Further training around autism awareness be given to housing department staff

•Numbers of peoplethat have to moved from current housing provision because it is not appropriate •Number of people that are placed in housing out of How will we know? district •Number of people who are not happy with their place/type of housing

j) Undiagnosed and late diagnosis

Some people with autism will never seek a diagnosis as they feel able to lead a fulfilling live without it. However, there is wide recognition that early diagnosis can help families to understand and support a child’s emerging needs and that diagnosis can still be helpful and required at a later stage in life particularly when leaving the structure that the education system offers and/or seeking employment.

“ as a 20 year old I was assessed as having a diagnosis of Asperger’s. I had managed to make my way through school without a diagnosis and without any additional educational support. I was unhappy at school. Following school I enrolled in college to undertake a qualification in childcare. Following my diagnosis, and with the support of my GP and social services, I applied for a job working in a private day nursery…. I could tell my employer about my diagnosis and anticipate what impact it may have on my working day”

Data from Born in Bradford demonstrates that children with mothers who are university educated are much more likely to have an early diagnosis of autism which will result in their family being informed and able to support their child in an autism appropriate way. Ensuring that all children and adults that are showing signs of autism are supported to get a diagnosis if they or their carers feel it would be beneficial to them is a priority area.

Page 116 • Ensure access to assessment and diagnosis process Recommendations available to all ages & Requirements • Ensure families/carers are supported to access diagnosis where it is felt it would be beneficial to the individual

• Referrals for children are received from all socio- economic groups How will we know? • Diagnosis is still offered for adults

k) Older Adult

Many adults who grew up before ‘autism’ or neuro- diversity was part of the public vernacular have lived their entire lives without ever getting a diagnosis. In 1966 only 4 in 10,000 children in the United Kingdom were diagnosed as autistic and that many children who have a diagnosis of autism or ADHD were either completely missed or given the “wrong label” or misdiagnosed.

Anecdotally some adults only recognize their own autism when their own child is diagnosed and adult services often report that there is an increase in parents seeking a diagnosis when their child has been diagnosed . So far, the few studies of older adults with autism suggest they suffer from a myriad of health conditions and lack appropriate support, living much of their life within their family home and often in relative social isolation. Locally GP’s are reporting an increase in numbers of elderly parents now feeling unable to cope with their child who has now reached older adulthood (ie over 60).

Page 117 • Assessment of need for older adults with autism (over age 60) • Development of guidelines to support individuals in this Recommendations category who potentially may find themselves unable to & Requirements remain in their family home and/or being supported by their parents/family/carers. • Collaboration with voluntary organisations who may have better understanding of local need

• Guidelines developed and used in both health and social How will we know? care servcies

L) Accessing mainstream services

Visits to mainstream health and social care services can be a challenge for service users with autism, their families/carers and the health care providers themselves. Guidance to support the process should developed locally building on the good practice suggested by the National Autistic Society (NAS). This includes use of the “ hospital passport” template which helps individuals with autism prepare themselves and the care provider for an appointment pointing out what their particular needs might be and the use of an Autism alert card which can be utilised when accessing services. Guidance from the Department of Health on “How to support people with Autism” adapted from a poster provider by the Estia Centre, should also be utilised by public services staff who are at the “front door” of their services. Good communication between the provider and the parent, preferably before, during and after medical appointments can help the process.

Feedback from individuals diagnosed with ASD locally state that in order to help access mainstream services the following issues should be considered.

“ services can be too noisy for me”

“ the people I am consulting/meeting need to be aware of my autism and know my history”

“ it can be hard to process information quickly and I may need support”

“anxiety can lead to me missing appointments”

“I would never go on my own as my parents can help people to understand my condition”

“ receptionists need to be patient with me”

In Bradford District and Craven some work has commenced in relation to developing GP patient records by using a flagging system in the clinical system used (Systmone) which, as it is rolled out in primary and community care, hospitals and local authority will mean that when a person with an additional need presents for an appointment or makes contact that it is immediately apparent what

Page 118 kind of additional help may be required to help them access appropriate support and treatment. The requirements for assistance are input with the help from the patient and/or carers

Access to services which offer preventative as well as urgent support are very important in order to keep individual’s well. Particularly attention should be paid to “opening up” access to primary and community care and Dentistry services where it is perceived that attendance is low in comparison to need.

•Standard guidance for individuals, families/carers and providers to be developed to support access to mainstream services •Sharing good practice across services and celebrating this •Public service staff who are likely to be meeting and greeting Recommendations & people accessing their service should be trained in autism Requirements awareness •Review numbers of individuals accessing Dental services •Reasonable adjustments should be made to ensure access to mainstream services (particularly primary health care) is appropriate for people with autism/ADHD

•More children and adults with autism able to access mainstream services (monitor dentistry and primary care) How will we know? •Increased well being of indivduals with autism and levels of satisfaction that their needs are being met.

9) Digital Innovations/Technology

Digital Technology can have a positive role to ensure that children and young people, particularly, have the right information to hand and to be able to access services. Mind have launched the # DontPanicButton which aims to empower self care and their parents. The development of new apps and digital tools such as My autistic world and other apps such as those listed on https://www.autismspeaks.org/autism-apps could be promoted in services for people with autism.

Page 119 • Review what local digital resources are available which would be appropriate for neuro diverse children and adults • Research what other digital innovations are available Recommendations nationally and internationally and determine whether & Requirements appropriate for local use • Develop on line resources and interactive tools to support people with autism maintain access and support from local services

• Feedback on tools/resources utilised How will we know? • Numbers of autistic people and their carers accessing digital resources

10) Governance and Alignment to other strategies

As per statutory guidance in Bradford a Local Autism partnership board is in place. This links into the wider Transforming Care Plan which in turns links to the Health and Wellbeing Board. The key purpose of the Autism Partnership Board is to bring together stakeholders to support the work of local commissioners and focus on service improvement. Historically this Board has had an adult focus but it is recommended that an all age view be taken at these meetings and effective working relationships be established with the appropriate strategic children’s forums.

The Partnership Board is also responsible for completing the National Autism Self Assessment each year and aims to improve its progress against the key recommendations year on year. An action plan at Appendix 1 demonstrates what progress is required to achieve this and demonstrates who has accountability for which action.

Page 120 • Partnership Board to work with children's forums to establish all age Autism group • Links to the TCP programme board are made Recommendations • Clear accountability for delivery of key actions is & Requirements established • Priorities identified in this document are translated into a programme plan

• Year on year improvements in self assessment reporting How will we know? • Process against key performance indicators developed as part of the Neurodiversity Programme Plan

11) Partnership working and statutory responsibilities

Partnership working is fundamental to improving the way in which neuro diverse children and adults and their families are supported. The main aim of this strategy is to put systems and processes in place to ensure that there is a focus on proactive and preventative health and wellbeing and to ensure autistic people are diagnosed quickly and supported to access mainstream services that keep them well.

The Autism Partnership Board already has representation from a number of different agencies but these should be extended to include voluntary/charity organisations and to establish more effective working relationships with strategic work around improvements in children’s services and their health and wellbeing.

• improve links to voluntary and charitable organisations involved in supporting people with autism Recommendations • Establish a partnership agreement about improving & Requirements services for people with autism across all agencies • Ensure the programme plan includes relevant bodies.

• Progress is made towards delivering the key priorities identified in this document How will we know? • Organisations work effectively together to ensure stretched resources are most effectively utilised.

Page 121 12) Listening to and engaging with families and service users

Parents and Carers hold key information and have a critical role to play in their children’s development and they have the knowledge and experience to contribute to the shared view of a autistic person’s needs and the best ways of supporting them. It is therefore essential that all professionals, both at a strategic and operational level, actively seek to work with carers and value the contribution they make. Indeed the work of professionals can be much more effective when both individuals with autism and their carers are involved and account is taken of their wishes, feelings and perspectives on the development of services.

These partnerships can be challenging, particularly when resources are limited but the benefits of involvement far outweigh the difficulties experienced particularly when the relationship is established in a positive way. Carers report that having a child with autism is

“….. a massive learning curve and I don't know how to handle him sometimes or how to make things easier for him. I also wish the joint assessment didn't have such a long waiting list. I understand not being too hasty with diagnosis. But I really do hope it is soon!”

Carers have to become experts in understanding their child’s needs and professionals can learn from this knowledge but also report a lack of clarity around where they can seek support and guidance that is specific to their needs and “feel tired and lonely” and unclear where they can get support or advice. Many report that any signposting to services tends to be through “word of mouth”. A survey at SAS showed that many parents/carers would appreciate autism specific services including respite, and help to manage challenging behaviour particularly as the child transitions to adulthood. Some services within Bradford District and Craven are available to offer behaviour support but often this is when behaviour has become unmanageable. A consistent offer around behaviour support should be available.

•Carers and service users are supported to become members of the Autism Partnership Board •Alternative ways to engage with service users/carers are explored to prevent the need for travel and face to face interaction (digital resources could be utilised) Recommendations & •Clear information about how to access a Carers Assessment and how Requirements this can help •Clear information is provided to Carers about services available •Review what respite is available locally including "short breaks offer" •Review what behaviour support services are available and ensure that these services are easily accessible to families.

•All strategic decisions and any changes to service are completed in consultation with service users and/or carers. How will we know? •Active participation in service user events whereby engagement is seem as something that leads to positive change. •Number of Carers Assessments increase

Page 122 13. Priority Outcomes (to help form a programme plan)

1. Local organisations and services have a better awareness and understanding of autism and make reasonable adjustments so that mainstream services are more accessible to, and respond more appropriately to, children and adults with autism.

The more people know about autism, the more support can be targeted more promptly and effectively, with the possibility of better outcomes for individuals, carers and their families. A multi- agency training plan will be rolled out across services and agree which staff will be trained and at what level; ranging from basic awareness raising to secondary training for professionals requiring more in-depth knowledge. Health and social care commissioners will ensure that good autism awareness training is built into the services they purchase including private providers. Any new service providers should be able to provide evidence and testimonials to demonstrate their expertise around supporting individuals with ASD and/or other neurodiversity.

2. A clear and consistent diagnostic pathway exists, across the age spectrum, with pre and post- diagnostic support where appropriate/needed

A diagnosis can help explain to the individual and their family what had previously been unknown or misunderstood. It also avoids the problem of misdiagnosis and helps people access relevant services and benefits. Health and social care professionals working with people with autism need to know how to make a referral for a diagnosis. Staff involved in diagnosis and assessment will not only receiving training about autism, but also have an indepth understanding of how the care pathway works.

3.Digital resources and technology are available to support people with autism to access mainstream services or to seek support or advice when it is needed should be utilised and/or developed

Exploitation of digital resources can help ensure that there is real time, up to date information available when and where it is needed. App developments and virtual experience technology can aid people with neuro diversity to better manage their anxiety and to ensure that access to mainstream services is maintained to keep them well and safe.

4. All children/adults with autism and their carers are able to access appropriate information and advice about services available to them and that these are available within appropriate timescales.

Clear and appropriate information about local services for people with autism needs to be made available. Following diagnosis, people need good, prompt information about autism and where to get support. People with autism can find assessments perplexing. Assessing the social care needs of someone with autism should be done by a professional with sufficient training and experience, and reasonable adjustments may need to be made to ensure the assessment is as productive as possible.

5. Transition points in services are reviewed and improvements made as they can cause particular upset and distress for people with autism. For example support for young people with autism as they move into adulthood and into older adulthood.

Through school, young people with autism and their families will usually have had access to support that helps them achieve and be included. Without effective transition planning, this support could disappear once people with autism reach adulthood, leaving them isolated at this critical point. Organisations and services need to work collaboratively to ensure that young people with autism are given the right start in their adult life.

Page 123 6. Data and information systems capture key information about people with autism to ensure integrated pathways and to enable better understanding of need in the District.

It is clear that data and consequently information about people with neuro diversity is recorded in fragmented way and that services don’t always share relevant (and appropriate) information with each other to support an individual’s pathway of care. A health needs analysis will be undertaken by the Public health department to better understand local need. A virtual hub where referrals for diagnosis can be centrally recorded could be developed to support this.

7. Adults with autism are able to be supported in their preparation for work and are able to access employment opportunities and relevant support at work

The ability to get and keep, a job and then to progress in work is a central part of social inclusion. We know that adults with autism are significantly underrepresented in the labour market and we are committed to doing more to help adults with autism and/or ADHD into work and keeping them in work. This will include new developing approaches that will better support adults with neuro difference and making sure that they benefit from wider employment initiatives.

8.Local planning and leadership is in place in relation to the provision of services for people with autism and their families (and this is effectively co-ordinated across public sector services)

Through the Joint Strategic Needs Assessment (JSNA) and the Health Needs Analysis, there will be enhanced data available around adults and young people with autism in the district leading to a better understanding of need. There will be local options for people with autism about where to live, how to spend their time and by whom they are supported. Specialist services are available for those who need them, offering structure routine and continuity. Mainstream services will be competent to support people with autism, with trained staff, low arousal areas and flexible processes.

9. Opportunities to better utilise limited resources, particularly specialist resources, are maximised - this may include collaboration with neighbouring districts.

A West Yorkshire wide scoping exercise is currently underway to review what provision is currently available for assessment and diagnosis of autism for both children and adults. The findings of this will be shared in March/April 2017

Bibliography

• Autism Act (2009). (2009). London: HMSO. Read Full Item (website page). Act which put a duty on the Government to produce a strategy for adults on the autism spectrum in England and to produce statutory guidance for local councils and local health bodies on implementing that strategy.

• Care Act 2014. London: HMSO. Read Full Item (websitepage) | EasyRead . Act which builds on recent reviews and reforms, replacing numerous previous laws, to provide a coherent approach to adult social care in England.

• Children and Families Act (2014). London: HMSO. Read Full Item (website page) | Young Person's Guide (PDF document). Act which amends existing legislation and services for chilren and young people, including those with special educational needs, in England.

Page 124 • Equality Act (2010) . (2010). London: HMSO. Read Full Item (website page). Act which legally protects people from discrimination in the workplace and in wider society.

• Fulfilling and rewarding lives: the strategy for adults with autism in England. (2010). London: Department of Health. Read Full Item |EasyRead (PDF documents). Strategy which sets out how public services for adults on the autism spectrum in England should be delivered.

• SEND: guide for parents and carers (2014). London: Department of Education. Read Full Item (PDF document). Explains how the system that supports children and young people with special educational needs and disability (SEND) works.

• NHS England – Developing support and services for children and young people with learning disabilities and/or autism. September 2017

• Think autism: Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update. (2014). London: Department of Health. Read Full Item | EasyRead (PDF documents). Updates the strategy on public services for adults on the autism spectrum in England.

Appendix 1

NB priority level ascertained by where there is a high risk/gap around a development. Some are high risk but work already underway and therefore the priority would be lower.

Section Development required Statutory requirement Who Priority to lead Relationships with other Establish formal relationships Medium CCGs/LA with neighbouring CCGs (Craven) regarding Autism Planning Need to identify strategic lead & To demonstrate that High or lead commissioner strategically autism is being thought about not just as an add on to existing services. Autism Act 2009, Think Autism 2014. Need to design a job role for Would have High this person – dual accountability responsibility and across health & social care? accountability for

Page 125 Clear responsibilities ensuring programme/plan for delivery in place and monitored effectively Clarity on operational lead Medium across health & social care Clear and transparent alignment Recognition that the sum Medium with JSNA, MH and Learning of these should inform Disability strategies. the Health and Wellbeing strategy Clear links to Health and Health and Wellbeing Medium Wellbeing strategy boards should oversee implementation of the local autism strategy Autism strategy needs High developing – must demonstrate engagement of both health and social care Governance Clear accountability Autism Partnership Board High structure/governance. Need to should exist, clear TOR review existing meeting and expectations. Clear structure. accountability and governance and brings together all key partners in one forum with a common strategic agenda. Commissioned services (eg SLA’s to be monitored to through VCS) expected to follow ensure commissioned national guidelines and services follow relevant contracts/SLA’s must outline guidance. what is expected from services Data/Information Data Requirement that there High requirements/responsibilities is prompt sharing of need developing across health, information between social care and voluntary sector diagnostic services and system. Number of LA children/people with autism, estimate of those not diagnosed, whether or not have multiple diagnosis, which services accessing, whether meet eligibility criteria for social care/health support. Interfaces with MH and LD key. Need to record data in a way Children and Families Act High that allows easy access to 2014 – requirement to understand where a person integrate child and adult with suspected autism is in the pathway and help pathway, what has been offered children prepare for so far, what assessments are transition available, have been offered etc Link up data flows – ie of those High diagnosed how many meet care Act Eligibility criteria, are referred to other services, or

Page 126 numbers who are not offered other specific support Demonstrate how data is used Medium in effective service planning for people with autism Engagement Formalise engagement High structure Ensure people with autism and NHS has a responsibility High their carers underpin the to look at people’s planning process experiences of the diagnostic process eg involve NHSE Local audit teams. Autism Awareness Need to demonstrate that Statutory guidance for LA High Bradford/Airedale making a and NHS March 2015 – commitment to improve access states that there must be and support for people in a joint approach to Bradford across statutory public innovation in the way sector services, including services are delivered information and advice (this and that reasonable includes, health, social care, adjustments are made to transport, housing, education, enable appropriate libraries etc) access to all public services (Section 6 of Care Act) Transition points need to be Children and Families Act High highlighted as difficult for 2014 – requirement to people with autism (child to integrate child and adult adult) pathway and help children prepare for transition Particular needs of older adult, Engagement of people Medium women, BME community needs from each of these to be addressed groups should feature in the partnership board. Training Need a multi agency training Training plan must not High plan that outlines a only be focused on comprehensive ranges of local autism awareness but on autism training that meets NICE different levels of guidelines specialist training for specific staff. GPs and other primary care practitioners must be engaged in this. Numbers of staff undertaking Those staff undertaking Medium training is recorded an assessment of an (particularly client facing staff) adults care/support needs must have suitable skills/knowledge and competence in the assessment as outlined in the Care and Support (Assessment) Regulations 2014 Training specific for older adults Recognise that these may Medium required be “hidden” as may have

Page 127 relied solely on their families for support in the past. Need to recognise that likely to be other health issues which can cause particularly distress as the individual ages. Training plan identifies those 2010 statutory guidance High people who should undertake states that all NHS & LA training staff should have access to basic autism training Criminal justice – training plan Medium required for court, police, probation etc Family/carers and people with Recognised good practice Medium autism to be included in the to include adults with design of training and autism, their potentially take the role of families/carers and trainers (could be autism representative video/recorded media) groups when commissioning or planning any training Diagnosis (health) Clear autism diagnostic pathway Must follow NICE High needs to be in place (GPs to be guidelines and target of involved) – need to plan when less than 3 months wait will be able to meet NICE for this. NICE Quality guidelines Standard (QS51) NHS must have an easy to access pathway to diagnosis although it is not expected that a specialist team will be located in all areas. This must also feature the triggers from diagnostic service to LA service. Data recorded for numbers Key to understand the High referred, numbers diagnosed, need in local area numbers undiagnosed, numbers waiting etc People with autism (as single or CCG and LA must work Medium dual diagnosis) should be able demonstrate their joint to access post diagnostic OT offer for post diagnostic assessments, clinical support regardless of psychology,SLT and/or other whether the person has a services Learning Disability and/or Mental health need Crisis services to provide Align this with guidance Medium support for people with autism by national Development whether or not they have a Team for Inclusion and Mental illness the Mental Health Crisis Care Concordat. . Clear Safeguarding process should be in place and established links with

Page 128 Safeguarding Adults Board. Care and Support (LA) Need clarification around both Section 47 of the NHS Medium access to community care and Community Care Act services and personal budgets 1990/Section 9 of the process and how autistic people Care Act 2014 duty of (whether they have a LD or not) care (do not have to have can access this. a diagnosis of autism) Single point of contact needs The Care Act 2014 strong High establishing for anyone with emphasis on prevention autism (to signpost – making sure support, appropriately for info, advice in advice, care etc available an autism friendly way) as needed. This must effectively integrate with the diagnostic/assessment process as per Section 3 of the Care Act Pathway for care assessment for The Care Act states must High people with autism to be promote individual’s well defined being (Section 1) Clarify what support and info is The Care Act 2014 strong Medium available to autistic people if emphasis on prevention they are not eligible under the – making sure support, Care Act/for statutory services advice, care etc available as needed. LA must have a clear framework for assessing the care and support needs of autistic people. Clarify what support is available The Care Act 2014 Medium to carers of people with autism (section 4) specifies must ensure appropriate advice/support for carers. Carers should have timely formal notification of their entitlement to assessment of need and where relevant a carers assessment. Housing/Accommodation Housing strategy must include Align to Article 8 – right Medium position statement/offering to to family life for people people with autism (what types with autism of housing is needed, how this is built into plan etc) Education Numbers of children diagnosed Carry out statutory duties should be readily available and as per Children and particular support given to Families Act 2014 and transition points in education engage children and families in decisions, keep educational provision under review for autistic children, review EHC plans at least annually , publish the

Page 129 local offer and put in place arrangements to request a Personal Budget. Employment Employment strategy has Achieving paid Medium focused autism trained employment should be a employment support and there priority for every district is proactive engagement with local employers Clear alignment between Information, advice and Medium transition processes and guidance on career employment – ie transition choice must be made plans include detailed reference available. Each learners to employment should have a study programme which is personalised to their own needs Criminal Justice System Alignment and collaboration The Care Act states that High between health/social care and the LA must assess the CJS re people with autism care and support needs (shared training plan, alert cards of adults who have such in operation etc) needs in prisons or other forms of detention Clarification in relation to what Link to Liaison and Medium services support people with Diversion services must autism when they are on be established and custody suites/place of safety processes for access documented. LA and health must seek to engage with CJS Parents Views Long waits, poor High communication, lack of availability of support, feels like a fight, need recognition that one size does not fit all. More support for people that are undiagnosed (both when waiting for diagnosis or don’t get a diagnosis)

Appendix 2 Statistics from Born in Bradford Project

There are no statistically significant differences in the rates of Autism for children at different ages at the point of data extract. However there is a suggestion that rates are increasing, as rates for younger children are higher than for older children.

Autism rates by child age

Page 130 Age of child at GP data extract Est CI Low CI High

Five (2,100) 1.05% 0.61% 1.48%

Six (3,308) 1.12% 0.76% 1.48%

Seven (3,253) 0.98% 0.64% 1.32%

Eight plus (3,677) 0.95% 0.64% 1.27%

Total number of children: 12,338.

Source: Born in Bradford Cohort.

Autism rates by child gender, ethnicity and socio-economic status show that male children in the Born in Bradford cohort are much more likely to have a diagnosis of autism. Children of Pakistani heritage are less likely to have a diagnosis of autism in Bradford. There is no evidence to suggest that diagnosis rates internationally are at a lower level in the South Asian population so this may be due to diagnosis at an older age and/or higher mental health stigma in the South Asian Population.

Child Ethnicity Est. CI Low CI High

White British 1.16% 0.82% 1.49%

Pakistani Heritage 0.92% 0.66% 1.17%

Other Ethnicity 1.22% 0.66% 1.78%

Source: Born in Bradford Cohort

Total number of children: 12,388

The differences related to free school meal status and mother’s education suggest that socio- economic factors do play a role in whether a child has a diagnosis of autism. Children receiving free school meals are less likely to have a diagnosis of autism in Bradford, though this difference is relatively small. A larger difference is observed when considering the mother’s educational status; children of mothers who are educated to A level or above are twice as likely to have a diagnosis of autism compared to children of mothers with lower levels of education. This may be related to differing levels of engagement in the health care system but potentially demonstrates inequitable access to diagnosis.

Free School Meals Est. CI Low CI High

Receiving free school meals 0.82% 0.45% 1.19%

Not receiving free school meals 1.07% 0.83% 1.31%

Mother Education Est. CI Low CI High

Page 131 Mother education: lower than A level 0.65% 0.43% 0.86%

Mother education A level or above 1.44% 1.07% 1.81%

Source: Born in Bradford Cohort

Total number of children: 12,338

Appendix 3

Epidemiology

An accurate epidemiological description of Autistic Spectrum Disorders (ASDs) is needed to inform public health policy and to plan for education, housing and financial support services (1) .

Case Definition Classic Autism has gradually evolved into the concept of a larger “spectrum disorder” (2) . Autism Spectrum Disorder (ASD) is defined as a group of behaviours indicating social, communicative, and behavioural impairment or abnormalities. The essential features of ASD are (3) : • Impaired reciprocal social interactions • Delayed or unusual communication styles • Restricted or repetitive behaviour patterns

Natural History ASD is highly heritable, but environmental factors are also implicated (4) . Multiple lines of evidence suggest the aetiology of ASD has prenatal origins. Onset of ASD symptoms typically occurs by age 3, although symptoms may not fully manifest until school age or later, and some research suggests symptoms can emerge between 6 and 18 months of age More severely affected children are more likely to be identified and reliably diagnosed at younger ages than milder cases

Incidence and Prevalence Children There are two key UK studies to consider: 1. Taylor 2013 UK (5) - a population study using the UK General Practice Research Database (GPRD) with annual autism prevalence rates estimated for children aged 8 years from 2004–2010 and annual incidence rates for children aged 2–8 years • Annual prevalence rates for each year were steady at approximately 3.8/1000 boys and 0.8/1000 girls . • Annual incidence rates each year were also steady at about 1.2/1000 boys and 0.2/1000

Page 132 girls 2. Baron-Cohen 2009 UK (6) - a Special Educational Needs diagnosis survey in schools handed out to parents of all children aged 5–9 years. The mainstream primary school population was also screened for unknown cases. • Prevalence estimates generated from the SEN register and diagnosis survey were 94 per 10,000 and 99 per 10,000 respectively. • The ratio of known:unknown cases was estimated as 3:2 , i.e. the true prevalence is estimated to be ~33% higher than the observed. • Taken together, the true prevalence was estimated to be 157 per 10 000 , including previously undiagnosed cases Adults Again, there are two key studies to consider: 3. Brugha 2011 (7) - A random sample from the Third National Survey of Psychiatric Morbidity in Adults in England in 2007. • The weighted prevalence of ASD in adults was estimated to be 9.8 per 1000 • Prevalence was not related to the respondent’s age. • Rates were higher in: ◦ Men ◦ Those without educational qualifications ◦ Those living in rented social (government-financed) housing ◦ There was no evidence of increased use of services for mental health problems. 4. Brugha 2014 (8) - Clinical assessments of 7274 Adult Psychiatric Morbidity Survey participants combined with a population case-register survey of 290 adults with intellectual disability. • The combined prevalence of autism in adults of all ages in England was 11/1000 • It was significantly higher in those with moderate to profound intellectual disability • Male gender was a strong predictor of autism only in those with no or mild intellectual disability Table 1 below shows estimates of these studies translated to the three Bradford CCGs. (Note there are confidence limits surrounding these estimates - please contact the author to discuss further) Table 1 Estimates of ASD Prevalence in the three Bradford CCGs Temporal Changes in Prevalence Following a fivefold increase in the annual incidence rates of autism during the 1990s in the UK, the incidence and prevalence rates in 8-year-old children reached a plateau in the early 2000s and remained steady through 2010 (5) . The rising prevalence of ASD diagnoses can be largely attributed to broader diagnostic criteria, adoption of dimensional assessment strategies, AWCCCG BCCCG BDCCG Taylor 2013 72 87 179 Baron-Cohen 2009 304 363 752 TRUE Baron-Cohen 2009 494 592 1224 Brugha 2011 1215 873 2462

Page 133 Brugha 2016 992 712 2009 Adults Observed Children increased awareness, linking of services to diagnosis, and the inclusion of milder neurodevelopmental differences bordering on normality (2) . Socioeconomic Factors • Recent European studies suggest that low socioeconomic status is associated with an increased risk of ASD (9) . • Prevalence of ASD with associated Intellectual Disability (ID) was higher in areas with the highest level of deprivation and the highest percentage of unemployed adults, persons with no diploma, immigrants and single-parent families. • No association was found when using occupational class. • Regarding ASD without associated ID, a higher prevalence was found in areas with the highest percentage of immigrants (9) . • The prevalence of ASD with associated ID and of severe isolated ID is more likely to be higher in areas with the highest level of deprivation (9) . • It has been proposed that clusters are linked to the education level of parents—those with a college education are more likely to obtain an autism diagnosis than those who did not graduate from high school (10) . A higher level of education could also be an indicator of being wealthier, and therefore having better access to resources such as better preventive medical care and paediatricians (10) . Ethnicity • Studies conducted in North America indicate large racial/ethnic disparities in the diagnosis of ASDs (11). • Others show that immigrant children have similar prevalence rates of ASDs as native children, although they are diagnosed later compared with native children. • After analysing the results of studies conducted in Europe, it is unclear if higher prevalence estimates of ASDs among immigrants in this region reflect true differences, especially considering many potential confounding factors, e.g. genetic, biological, environmental and cultural. Considering the number of people migrating within Europe there is a substantial need to study further the prevalence of ASDs in immigrant groups (11) .

REFERENCES

1. Baxter, A.J. et al., 2014. The epidemiology and global burden of autism spectrum disorders. Psychological medicine , 45(03), pp.601–613. 2. Graf, W.D. et al., 2017. The autism “epidemic”: Ethical, legal, and social issues in a developmental spectrum disorder. Neurology , 88(14), pp.1371–1380. 3. https://www.cdc.gov/ncbddd/developmentaldisabilities/casedefinitions.html - accessed 25/06/17. 4. Lyall, K. et al., 2017. The Changing Epidemiology of Autism Spectrum Disorders. Annual

Page 134 review of public health , 38, pp.81–102. 5. Taylor, B., Jick, H. & MacLaughlin, D., 2013. Prevalence and incidence rates of autism in the UK: time trend from 2004-2010 in children aged 8 years. BMJ Open , 3(10), pp.e003219–6. 6. Baron-Cohen, S. et al., 2009. Prevalence of autism-spectrum conditions: UK school-based population study. The British journal of psychiatry : the journal of mental science , 194(6), pp.500–509. 7. Brugha, T.S. et al., 2011. Epidemiology of autism spectrum disorders in adults in the community in England. Archives of general psychiatry , 68(5), pp.459–465. 8. Brugha, T.S. et al., 2016. Epidemiology of autism in adults across age groups and ability levels. The British journal of psychiatry : the journal of mental science , 209(6), pp.498– 503. 9. Delobel-Ayoub, M. et al., 2015. Socioeconomic Disparities and Prevalence of Autism Spectrum Disorders and Intellectual Disability. PLoS ONE , 10(11), p.e0141964. 10. Gee, A., 2010. Californian autism clusters leave researchers baffled. Lancet , 376(9751), pp.1451–1452. 11. Kawa, R. et al., 2017. European studies on prevalence and risk of autism spectrum disorders according to immigrant status-a review. European Journal of Public Health ,

27(1), pp.101–110.

Appendix 4 The following questions scored either a poor rag rating across West Yorkshire (RED) or were questions where the answer was either “no” or no information was available.

• Does your Local Joint Strategic Commissioning Plan (or other statement of joint commissioning intentions such as Health & Wellbeing Strategy, Autism Strategy or Market Position Statement etc.,) reflect local data and needs of people with autism? (This question is more precise than 2014) • Does your area have a designated strategic lead for adults with autism e.g. an Autism Lead Role? And for Does your area have a separate operational lead for services for adults with autism? • Does your local JSNA specifically consider the needs of children and young people with autism? • Have reasonable adjustments been made to general council services to improve access and support for people with autism? (This question is identical to 2014) • In your area have reasonable adjustments been promoted to enable people with autism to access health and social care information, support and advice? (This question is new this year) • How does your planning take into account the particular needs of adults aged 65 and older? (This question is similar to 2013 and 2014) • Is autism awareness training being/been made available to all staff working in health and social care? (This question is identical to 2014). • Do you record uptake levels of autism awareness training for Local Authority and/or NHS staff working in health and social care? (This question is new this year).

Page 135 • Do you have specific training that focusses on adults with autism over the age of 65? (This question is new this year). • What is the number of adults assessed as being eligible for adult social care services who have a diagnosis of autism and in receipt of a personal budget? (This question is similar to 2014) • Do you have a recognised pathway for people with autism but without a learning disability to access a care assessment and other support? (This question is identical to 2013 and 2014) • Do adults with autism who could not otherwise meaningfully participate in needs assessments, care and support planning, appeals, reviews, or safeguarding processes have access to an appropriately trained advocate? (This question is identical to 2014). • Does the local housing strategy and/or market position statement specifically identify autism? (This question is similar to 2014) • How have you promoted in your area the employment of people on the Autistic Spectrum? (This question is identical to 2013 and 2014)

Page 136 Appendix 2

Other Neurodiversity Definitions

Attention Deficit Hyperactivity Disorder (ADHD) - a medical condition that affects how well someone can sit still, focus, and pays attention. People with ADHD have differences in the parts of their brains that control attention and activity. This means that they may have trouble focusing on some tasks and subjects. The symptoms of ASD and ADHD overlap. Most children on the autistic spectrum have symptoms of ADHD such as difficulty settling down, social awkwardness, the ability to focus on things that interest them and impulsivity. Recent research is suggesting that around half of children diagnosed with autism will also have ADHD

Dyspraxia – A developmental co-ordination disorder is a condition affecting physical co- ordination that causes a child to perform less well than expected in daily activities for a child his/her age.

Dyslexia – A common learning difficulty that can cause problems with reading, writing and spelling. It is a ‘specific learning difficulty’, which means it causes problems in reading and writing. Unlike a learning disability intelligence isn’t affected.

Tourette (tic) syndrome – is a common neuropsychiatric disorder with onset in childhood, characterised by multiple motor tics and at least one vocal (phonic) tic.

Page 137 This page is intentionally left blank Agenda Item 8/

Report of the Strategic Director of Children’s Services to the joint meeting of the Children’s Services and Health & Social Care Overview & Scrutiny Committees to be held on 28 November 2017

C Subject:

Better Start Bradford Programme Update

Summary statement:

An update on the progress of the Better Start Bradford programme and implications for Bradford district.

Michael Jameson Portfolio: Strategic Director Children’s Services Children’s Services

Report Contact: Overview & Scrutiny Area: Michaela Howell (Bradford Trident), Director Better Start Bradford Children’s Services Phone: 01274 513227 E-mail: [email protected]

Shirley Brierley, Consultant in Public Health CBMDC E-mail: [email protected] Phone: 07582103103

Judith Kirk, Assistant Director Education and School Improvement Phone: 01274 385716 E-mail: [email protected]

Ruth Hayward, Head of Commissioning (Women and Children) NHS Bradford Districts and NHS Bradford City CCGs Tel: 01274 237714 email: [email protected]

Page 139

1. Summary

1.1 Better Start Bradford (BSB) is an opportunity to improve the outcomes for children in some of our most deprived wards and for Bradford to test out and add to the evidence base of ‘what works’ in improving child health and development outcomes in the early years, improving maternal and child health and school readiness. The intention is to scale up what works in improving outcomes across Bradford for all our young children.

1.2 This report outlines the background to the programme, the key principles of the approach, reports on the progress in implementation and key aspects of evaluation and learning across the district.

2. Background

2.1 The Better Start Bradford programme is the result of a successful £49 million Big Lottery Fund bid led by Bradford Trident, for a 10 year early intervention and prevention programme. We are currently in year 3.

2.2 Bradford was one of only five areas nationally to be awarded funding from the Big Lottery Fund’s A Better Start programme, following intensive partnership work between Bradford Trident, Children’s Services and Public Health in the Council, the Police, Clinical Commissioning Groups (CCGs), NHS providers, Voluntary and Community Sector organisations, Born in Bradford, elected members and families.

2.3 Better Start Bradford is a ‘test and learn’ programme which is being used as a vehicle for reform across the district in early years and has already informed the development of the Integrated Early Years Strategy and the Prevention and Early Help programme. It is being ‘tested’ in 3 wards (Bowling and Barkerend, Bradford Moor and Little Horton) and the ‘learning’ about what successfully improves outcomes for Bradford’s children will be integrated throughout the district.

2.4 Focussed on improving maternal and child health and school readiness, the programme’s primary outcomes are to improve communication and language development, social and emotional development and nutrition in children aged 0-3

Page 140 years.

2.5 During pregnancy a woman’s mental and physical health, behaviour, relationships and environment all influence the developing foetus and can have a significant impact on the baby’s wellbeing and long term outcomes. Pregnancy and the early years are an ideal opportunity to target interventions as this is when extensive brain development occurs and any new experience, both positive and negative, can have short and long term impacts. Therefore the programme is entirely focused on pregnant women and young children aged 0-3 years.

2.6 From a value for money point of view, research tells us that the best time to invest scarce resources to improve children’s outcomes is in pre-conception, pregnancy and the first three years of life, as it is this time when the improvement in outcomes is greatest.

3. Key principles of the BSB approach

3.1 Know what it is that you want to change: A clear focus on outcomes for children, with a framework detailing the measures to be used to measure change against short, medium and long term outcomes.

3.2 Use what works and create local evidence: Prevention and early intervention rooted in the best available evidence and science, alongside detailed evaluation of their implementation and effectiveness, led by Born in Bradford.

3.3 Joint accountability: A Partnership Board made up of communities and local public services (see appendix 1). Joint accountability is also demonstrated through public sector organisations contributing leverage funding alongside the Big Lottery Fund grant.

3.4 Cost benefit analysis : The London School of Economics is working with Better Start

Page 141 Bradford to develop a tool to identify unit costs and potential savings from successful interventions. This will inform future commissioning plans for the district and is currently being tested before full integration into the programme.

3.5 Community involvement: A focus on working with our communities as an equal partner in planning and delivering projects and in ensuring that our key messages are embedded into families and parenting so that we achieve a real sustainable change in outcomes for children.

3.6 Improve how systems work together: A focus on strengthening integration will provide more consistent support for families by implementing common pathways, a joint training programme and a shared data system.

4.0 Progress with implementation

4.1 Better Start Bradford is now well established with strong partnership commitment, community and workforce engagement and involvement and a unique partnership to create a monitoring and evaluation platform with Born in Bradford. It is also working collaboratively with other A Better Start sites across the country.

4.2 Eleven of the planned projects are now up and running in the Better Start area, four are in a ‘set up’ phase and six more are being commissioned. See appendix 2 for details of their intended outcomes, delivery partners and contract details.

4.3 Currently, four of the projects are also being delivered across the district: • The Baby Buddy phone app, supporting women during pregnancy has already been rolled out across the district due to support from the CCGs and partners via the Maternity Network. • The HENRY project (Health Exercise Nutrition for the Really Young), which focuses on improving nutrition and exercise in the really young, is being delivered in partnership with Public Health to ensure that what is proven to work can be

Page 142 embedded into district wide provision and sustainable. (see appendix 3 for HENRY and Me blog) • Family Nurse Partnership, an intensive home visiting service for vulnerable families, is jointly commissioned with Public Health with additional evaluation in the BSB area to understand its impact. • Welcome to the World has been introduced across the district and the Better Start Bradford area delivery is providing additional support with training, co-ordination and evaluation. (see appendix 3 for Welcome to the World news) • BSB is working with the South Bradford Children’s Centre cluster to embed some of the learning around language development as a result of reviewing the delivery of the Healthy Child programme and in response to a particular need there.

4.4 Service Design As part of our systems change agenda, each Better Start Bradford project has been subject to a robust design process before implementation. This gives us the opportunity to bring communities, academics and frontline staff together to discuss the evidence behind the effectiveness of the proposed project, how it can be implemented to ensure it reaches everyone eligible and how it will be monitored for effectiveness. We have produced and shared our first guide in this field: A guide for designing, implementing and evaluating projects https://betterstartbradford.org.uk/learning-resources/research-and-evidence/

4.5 Commissioning Better Start Bradford is committed to commissioning our projects from partners and local organisations. We also seek to influence others’ commissioning by raising the importance of pregnancy and the first years in improving children’s outcomes and sharing our robust design process to ensure a clear specification for potential providers. We have aligned our commissioning of Family Nurse Partnership and perinatal mental health service with the public sector, and have had similar conversations regarding future alignment of breastfeeding commissioning.

4.6 Workforce development Learning Together is the training and development programme for everyone working with pregnant women and young families in the Better Start Bradford area, offering a range of expert sessions, workshops and events bringing leading professionals to Bradford to lead discussions in the latest thinking in the field. Details and presentations can be found here. https://betterstartbradford.org.uk/learning- resources/past-events/

We have supported the introduction of free evidence based bonding and attachment training for all early years staff across the district, and training to deliver the HENRY programme is regularly available to a wide range of practitioners.

4.7 Data sharing and systems We are using SystmOne to capture the data on individual beneficiaries and work is progressing to address technical issues. SystmOne is used in primary care and by Health Visitors, who see every child, and we have developed a unit that will be used by every project and will support far better data sharing for practitioners. Shared

Page 143 data across health and early years is essential in ensuring efficient recording without duplication and effective family support.

Our ambition is for one single child health record and to overcome the data sharing obstacles that currently exist across early years and partners. The first step has been a recent acknowledgement across the district that every data system should use the NHS number as the unique identifier so children can be effectively tracked. We are also developing a shared approach to obtaining consent from participants for their data to be shared.

5.0 Learning and evaluation

5.1 Learning what works in Bradford from the BSB projects The BSB partnership with Born in Bradford (the BSB Innovation Hub) is monitoring the implementation of each project delivered as part of Better Start Bradford. Even the most robustly evidence based services and projects will fail if they are implemented poorly. Numerous studies have shown that an effective programme implemented poorly will get the same results as an ineffective programme implemented well - neither will have much, if any, benefit for children and families. We are therefore evaluating the implementation as well as the impact of our projects.

The Innovation Hub are recruiting a cohort of approximately 5000 babies over the first 5 years of the programme in order to measure the impact of each project. We currently have over 1206 mums and 122 partners recruited. Full results for the projects will be available via cohort data from 2021, although some preliminary findings will be available depending on the outcomes and measures, after 2-3 years of the project starting. 5.2 Evaluation at a national level As we are part of a national programme, the Big Lottery Fund are working with a consortium led by Warwick University to evaluate the programme. This evaluation involves three strands of work: • The implementation evaluation will be conducted in two phases looking at both the early years of set up to maximise the effectiveness of the programme in subsequent years and the remaining years will look at the different models of working adopted by the five areas. • The impact of the national programme will be measured by tracking a group of families from the areas in addition to a comparable group of similar families living in carefully selected comparison areas. Individual level data and administrative data will be brought together to provide a robust

Page 144 assessment of the programme and what it is achieving. This will then also be looked at in terms of cost-effectiveness of the programme, both overall and for each area. • A programme of activities will also be delivered to ensure outcomes and learning from this vital programme evaluation are promoted and shared

5.3 Partners have identified the following as key areas which have been influenced by the learning from the BSB programme to date:

• Implementation and further development of the Integrated Care Pathway between midwives, health visitors and children centre staff, including supporting the integration of Health Visiting and Children’s Centres delivery. • Development of the Prevention and Early Help programme in Children’s Services to ensure an evidence and outcome focused approach. • Joint multi-disciplinary training for early years staff including eLearning on bonding and attachment, HENRY (healthy eating and nutrition in the really young) training and district wide approach to community based antenatal classes. • Supporting the effective implement the Integrated Early Years Strategy for children 0-7 years, especially around obesity and mental health. • Working with the CCGs to support the development of a maternity transformation plan and Maternity Programme Board to oversee the implementation of Better Births. • Development of a project to improve communication and language development in Bradford South Children’s Centre cluster area. • Development and piloting of new initiatives such as the Maternal Postnatal Attachment Scale (MPAS) for measuring attachment, integrated 2-year review undertaken by childcare providers and Health Visitors, the targeted Early Help pilot. • Joint approach to commissioning Family Nurse Partnership (FNP) for vulnerable mothers under 20 years of age (under 24 years in BSB area) and working with partners in Public Health to develop a new FNP model. • Close working with CCG led perinatal mental health group to ensure both BSB and district wide mental health services for mothers and their infants are significantly improving, including supporting accessing NHS England funding.

5.4 Better Start Bradford has access to the latest international research, science and experts, which we share via our Learning Together events and our website. www.betterstartbradford.org.uk

5.5 Through our work, Bradford is a founding partner of the Global Compact on Early Child Development which shares excellence in the field and the national A Better Start programme is seen internationally as being at the cutting edge of thinking.

6. Contribution to Corporate Priorities 6.1 The BSB Programme contributes to the priorities within the Bradford District Health and Wellbeing Strategy and the associated Health Inequalities Action Plan (HIAP). HIAP Priorities 1-6 of the 18 priorities are focused on child poverty, infant mortality, parenting and early years, ensuring children are well prepared for adulthood. It is also included as part of the Council’s priority ‘Great start, good schools’ and to the Children, Young People and Families Plan. BSB is a key member of the Children’s Trust Board, Integrated Early Years Strategy

Page 145 group and many other key children’s groups and networks across the district, sharing learning and providing opportunities to pilot new approaches.

7. Recommendations 7.1 Committee members are asked to consider and to note the information provided in this report and the high commitment within the District to improving outcomes and reducing inequalities for all young children through evidence based early intervention and prevention to ensure all children reach their potential.

8. Background Documents 8.1 www.betterstartbradford.org.uk

8.2 How Brains are Built: The Core Story of Brain Development: Alberta Family Wellness October 2013. https://www.youtube.com/watch?v=LmVWOe1ky8s&list=PLPy5ZtNQuZCyKWCkuO 0w5YQVhEPUAucJ4

8.3 Conception to age 2 - the age of opportunity The Wave Trust (2013) http://www.wavetrust.org/our-work/publications/reports/conception-age-2-age- opportunity

8.4 Integrated Early Years Strategy 0-7 years http://www.bradford.gov.uk/bmdc/health_well- being_and_care/child_care/earlyyears.

9. Not for Publication documents 9.1 None.

10. Appendices 10.1 Partnership Board structure and membership

10.2 Projects and outcomes

10.3 HENRY case study & Welcome to the World news.

Page 146 BETTER START BRADFORD GOVERNANCE STRUCTURES APPENDIX 1 31 08 2017 V5.1

BSB PARTNERSHIP BOARD

Led by Community Chair

BIG LOTTERY FUND 11 Community Representatives, BDMC (Children Services and Public Health) CCGs, West Yorkshire Police, Local Councillor, Bradford District Assembly, Bradford District Foundation Care Trust, Bradford Teaching Hospitals NHS Foundation Trust, Born in Bradford, Bradford Trident.

BUMP START YOUR BABY FINANCE AND THEME GROUP AUDIT SUB- ICP WORKFORCE ADVISORY COMMITTEE Led by Programme Facilitator

Page 147 Page GROUP Led by Finance Manager FALLING IN LOVE WITH YOUR Represented by Workforce COMMISSIONING Coordinator Executive Group BABY THEME GROUP Led by Programme GROUP ICP DATA, MONITORING & Led by Programme Facilitator Director Led by Head of Programme EVALUATION GROUP PROGRAMME BABIES AND BONDING Represented by Implementation DIRECTOR THEME GROUP Manager BRADFORD TRIDENT BOARD INNOVATION HUB Led by Programme Facilitator COMMUNICATIONS

ADVISORY GROUP EAT, LIVE, LOVE THEME Led by Communications & Engagement Manager PROGRAMME GROUP

MANAGEMENT GROUP Led by Programme Facilitator DISTRICT REFERENCE GROUP

Organised by Programme Led by Programme Director Coordinator. LOVING LANGUAGE THEME GROUP

Led by Programme Facilitator

BETTER PLACE THEME GROUP

Led by Project Capital Manager This page is intentionally left blank Better Start Bradford report to Children and Health Joint Overview and Scrutiny Committee November 2017 APPENDIX 2

Project Outcomes Target groups How commissioned Beneficiaries at September 2017

Baby Buddy mobile phone app. Maternal mental health Universal Best Beginnings (national charity 1727 downloads Free app with personalised content approved Access to services All parents and parents-to- who developed the app.) by doctors and midwives. be from pregnancy to six Service Level Agreement August months after birth. 2014 renewed annually.

Personalised midwifery care pilot. Continuity of care Limited to 400 women due BTHFT 1125 women Ensuring women see the same midwife, with Maternal mental health to the capacity of the pilot. Service Level Agreement 766 children longer appointments, and enhanced support August 2015 for 3 years. and information.

Perinatal Support Service. Maternal mental health Targeted Family Action 159 parents/carers

Page 149 Page Providing emotional support to families under Pregnant women who Service Level Agreement 1st April 127 children pressure during pregnancy and the first year have, or are at risk of 2015 after birth. developing, mild to 3 year renewable following moderate mental health review. problems and their partners/family members.

Talking Together. Children’s language and Universal assessment BHT Early Education and Training 1639 Supporting two-year-olds in communication communication Targeted intervention (formally SureStart BHT) parents/carers and language development through home Service Level Agreement 1st June 1600 children visits to encourage play and conversation. School readiness Every 2 year old receives 2015 3 year renewable following an assessment. Those at review. risk of language delay receive the home visiting programme. Family Nurse Partnership. Parent/child interaction Targeted BDC FT & FNP National Unit 47 women Home visiting by specially-trained nurses to Neglect Vulnerable women up to Service Level Agreement June Better Start Bradford report to Children and Health Joint Overview and Scrutiny Committee November 2017 APPENDIX 2

suppo rt young first time parents and their the age of 24. 2016 for 18 months then review . children with health, wellbeing and self- School readiness sufficiency. Better Start Imagine . Children’s language and Universal BHT Early Education and Training 559 children signed Providing free books and activities to help communication (formally SureStart BHT) up develop language and literacy skills. Each child receives a book Service Level Agreement Jan 1 st School readiness each month from birth 2016 for Book Gifting, Oct 1 st for until 4 th birthday. project activities.

Family Links Antenatal – now Welcome to the Maternal mental health Universal BSB providing training and 64 parents to be World Breastfeeding monitoring. An antenatal course for pregnant mums, dads Attachment All parents-to-be from Commissioned by LA.

Page 150 Page and carers week 22.

HENRY Obesity Universal Service Level Agreement with 115 parents /carers Health Exercise Nutrition for the Really Young: Oral health HENRY Jan 2016 for 3 years 121 children A course or one-to-one sessions supporting All parents with a baby or renewable following review. families with young children to develop toddler under 4. healthy lifestyles.

Home -Start Parental feelings of ability to Universal Service Level Agreement with 22 parents /carers Volunteer home visiting service for families cope with stressors. Home-Start Bradford. January 32 children with young children. Access to services All expectant families or 2017 3 years renewable following Children’s social and with a child under 4. review emotional development

ESOL + for pregnancy Maternal mental health Targeted Licensed and unique programme 16 parents to be Language courses for pregnant women with Access to services developed by Shipley College. English needs, to help them engage with their Mother’s language and Pregnant women who Thus SLA with Shipley College midwife and be more in control of their communication might otherwise need an Nov 2016 3 years renewable Better Start Bradford report to Children and Health Joint Overview and Scrutiny Committee November 2017 APPENDIX 2

pregnancy and labour interpreter for antenatal following review appointments or delivery of their baby.

Perinatal mental health service Maternal sensiti vity. Universal workforce Currently in set up phase with A new service which will support and nurture Parent/child interactions. training Bradford District Care Foundation parent-infant relationships through training Children’s social and Targeted intervention for Trust. and consultation for the workforce as well as emotional development. families providing a clinical service to families as and when they require it.

Baby Steps Maternal mental health Targeted Currently in set up phase with A perinatal parent education programme for Parent/child interactions. Those at higher risk of poor Action for Children

Page 151 Page vulnerable parents. Neglect. emotional wellbeing during the transition to parenthood. Breastfeeding Support Breastfeeding Universal To be commissioned A home and community based support Obesity service. Maternal sensitivity

Cook and Eat programme Obesity Universal In the process of being Community based commissioned

Doula Project Maternal mental health Targeted Service Level Agreement with Physical & emotional support for women in Parent/child interaction Women with a mental Bradford Doulas March 2017 for later pregnancy, during & after birth given by health need. 3 years renewable following volunteers. review Better Place - environment Parent/child relationship Universal In contract negotiations. A programme of developing local and safe Social and emotional places to play, walking routes and development Better Start Bradford report to Children and Health Joint Overview and Scrutiny Committee November 2017 APPENDIX 2

local green spaces and community gardens Better Place – Forest Schools Parent / child relationship Universal In the process of being A programme of outdoor play and learning. Social and emotional commissioned development Family Links Nurturing Parent/child interaction Targeted. Provided by Children’s Centres A parenting project focussed on building Child’s language and Families in need of and VCS partners nurturing relationships. communication development additional support. Child’s social and emotional development. School readiness

Incredible Years Parent/child interaction Universal In the process of being

Page 152 Page A parenting project for parents with children Child’s language & commissioned between the ages of one and 3 could be at risk communication development of emotional or behavioural issues. Child’s social & emotional development. School readiness. HAPPY Obesity Targeted Currently in set u p phase with A perinatal parenting programme aimed at Pregnant women with a Barnardo’s reducing the number of overweight or obese BMI greater than 25 children. Pre -schoolers in the Playground Physical act ivity Universal In the process of being Playgrounds are made available to parents Obesity commissioned and pre-school children at times when parents are likely to already visit the venue. ICAN Language and communication Universal In the process of being Training for the workforce in early language development. commissioned development School readiness.

Appendix 3

HENRY and me

Busy working mum, Gemma Priestley, 31, has completed HENRY’s (Healthy Exercise Nutrition for the Really Young) one-to-one programme, offered through Better Start Bradford. In this blog Gemma shares the difference HENRY has made to her family’s life.

Gemma’s Story I often struggle to attend family courses and activities as I only have Monday’s free. When I found out about HENRY’s one-to-one programme, I jumped at the chance to take part as they offered to do it in my home on my day off.

My two-year-old son Logan and I have on going reflux conditions, which impacts on the food we can eat. I could only get Logan’s medicine down with his formula milk; I thought if I took the formula away I would not get his medicine down, and it was holding me back from improving his eating habits. Doing the HENRY course gave me a push to make the change he needed.

Through the course, I was able to swap his formula for real milk. I realised that just because he had refused at the start, his initial issue had become my issue. In the end, it was not so hard to make the change after all.

I had also taken his snacks away, thinking that was a good thing, but that meant he was really hungry at mealtimes and eating too much and too fast, which was probably affecting his reflux.

The course offered much more than advice around nutrition though. I realised that I was making Logan older than his time and trying to do more advanced activities with him. HENRY provides you with lots of suggestions for what’s good and healthy for young children. Some I use and some I don’t, but that’s the beauty of the course: you take from it what you need to take.

Better Start Bradford The Mayfield Centre, Broadway Avenue, Bradford, BD5 9NP 01274 723146 Page 153 [email protected]

Activity Wall

I have developed an ‘activity wall’, and because Logan is only two, I am taking photos of all of the activities we do and stick them on the wall. Logan simply points to the photos to show me which activity he would like to do. It’s such a lovely way to display his work and for him to easily communicate with me. I even have friends that have copied the idea from me!

Initially I was doing the course to help with feeding Logan, but it really helps you to look at other habits you may get into. We were one of those families that would use the television as a ‘babysitter’. My husband Richard, Logan and I would all eat in front of the television and we would let Logan watch it before bedtime, thinking it was a calming influence.

Healthy changes We have now looked again at our TV habits. Logan’s bedtime routine is now amazing; we have a little quiet time play in his bedroom, get pyjamas on, settle down and read books and then leave him in his bedroom to go to sleep. He has even started shutting the bedroom door on me so I will go!

As for meals, I got rid of Logan’s highchair and he now has a seat on his chair and sits at the table with us for meals. We have real family time with no television. We also have a meal reward chart, and even when Logan has gone to bed, me and Richard will reward ourselves with stickers if we sit down and have a meal together.

Thanks to the HENRY course, I feel a lot more confident as a parent, and we have not only learned a lot of things that we can do as a family to be healthier, but also how to take time out for yourself. I did the course just because I wanted a healthier balance. You don’t get judged and I think everyone who does the course will take something away that they didn’t consider before starting it.

Families expecting babies in the Better Start Bradford area are being encouraged to get involved with its Welcome to the World project, to help them prepare for life with a new baby. Welcome to the World is a free antenatal course with a difference: friendly groups of mums, dads and carers meet in local community venues over eight weeks to explore the changes babies bring and how they can be provided with the best possible start in life. It aims to help more families in our area access important antenatal advice.

Better Start Bradford The Mayfield Centre, Broadway Avenue, Bradford, BD5 9NP 01274 723146 [email protected] Page 154

Welcoming Bradford Babies to the World

Welcome to the World is a free antenatal course with a difference: friendly groups of mums, dads and carers meet in local community venues over eight weeks to explore the changes babies bring and how they can be provided with the best possible start in life. It aims to help more families in our area access important antenatal advice.

Noshi Iqbal, who is now proud mum of baby Salman said, “One of the best decisions I have ever made was attending the Welcome to the World sessions. This was my first baby and I had zero experience, but I wanted to make sure Salman had the best start possible. Not only did the session arm me with lots of information, coping strategies and how to involve the family, it puts a lot of things into perspective. It also opens windows to other services and activities that will benefit us.”

Welcome to the World is relevant for all parents in the Better Start Bradford area expecting babies, whether it’s their first child or not.

Mrs Begum said, “The sessions boosted my confidence. The information I got was really useful and a great refresher for me – I thought it was a brilliant course. My older children are nine and seven so I felt a bit rusty when it came to bringing a new baby into the world. I found the course really helpful, especially when we watched a DVD about techniques used to control our emotions, plus a lady came in to talk about baby and child car seat safety.”

Topics covered on the course include:

• Looking after your baby while they are in the womb

• Practical tasks of caring for a new baby

• Communicating and bonding with babies

• Understanding baby brain development

• Exploring your future and the move into parenthood

• Exploring your roots, traditions, hopes and concerns

• Considering how we look after ourselves

Better Start Bradford The Mayfield Centre, Broadway Avenue, Bradford, BD5 9NP 01274 723146 [email protected] Page 155 This page is intentionally left blank