SEND Parent & Carer Engagement Report Phase 1

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2 We are People First.

Cumbria SEND Engagement and Coproduction Report April 2020

Contents

Executive Summary including key themes from the Parent/Carer Engagement Conferences p.g.3

1. Commitment to improving SEND services in Cumbria p.g.5

2. Implications of the OFSTED and CQC SEND report p.g.6

2.1 The SEND Improvement Board Written Statement of Action p.g.8

2.2 SEND Working Groups p.g.9

2.3 Working Group 3 Engagement and Coproduction p.g.10

3. The SEND Engagement Offer p.g.11

3.1 Parent Carer Reference Group p.g.11

3.2 Surveys p.g.11

3.3 Stakeholder Engagement p.g. 10

3.4 Shout Group, Maryport p.g. 13

4. Parent and Carer Engagement Conferences – January 2020 p.g. 14

5. Parent and Carer Engagement Conferences – key themes p.g.16

5.1 Educational Health and Care Plans (EHCPs) p.g.16

5.2 Speech and Language Therapy (SLT) p.g.18

5.3 Occupational Therapy (OT) p.g.20

5.4 Autistic Spectrum Disorder (ASD) p.g.22

5.5 Other Issues p.g.24

6. References p.g.25

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Executive Summary

In March 2019, an OFSTED and the Care Quality Commission (CQC) inspection found Cumbria’s SEND services were in need of ‘significant improvement’. In response Cumbria County Council, the North Cumbria Clinical Commissioning Group and Morecambe Bay Clinical Commissioning Group:

 Asked People First to facilitate a programme of engagement with the families of children and young people with SEND.

 Established the SEND Improvement Board (IB), consisting of six Working Groups.

 Drafted the SEND IB Written Statement of Action (WSoA), which sets out what needs to be done in order to address the nine identified areas of concern. The WSoA also demonstrates the IB’s commitment to coproduction and working with the families. David Blacklock CEO of People First is Chair of Working Group 3 (WG3) – Engagement and Coproduction. This WG took responsibility for creating the revised SEND Engagement Offer. This included:

1. A Parent/Carer Reference Group.

2. Five surveys, which were sent to children, young people, families and professionals.

3. Online engagement.

4. Communication.

5. Staff engagement.

6. Stakeholder engagement.

7. A series of Parent/Carer Engagement Conferences.

This report focuses on the work and impact of WG3, focusing in particular on the feedback and emerging ‘key themes’ from the Parent/Carer Engagement Conferences that took place in January 2020.

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Key Themes from the Parent/Carer Engagement Conferences:

 Parents/carers appreciated the value of the Education, Health and Care Plan (EHCP) as a legal document that considers the views of both parents/carers and professionals. However, they felt there is a lack of consistency of support, information and communication. Parents/carers would also like to see a simpler and more transparent process.

 Speech and Language Therapy is seen as effective when it is accessed early, it was also useful to have it integrated within or working closely with schools. However, parents/carers would like to have more information and some basic skills or training, to continue the therapy at home. As with the other areas, parents/carers want more transparency, consistent access, better communication and a continuity of care. There should also be more appointments, regular sessions and shorter waiting times.

 There is good availability for Occupational Therapists (OTs), but not enough ongoing support and children are only given a few appointments. Parents/carers would like clearer guidance on what is available, what OT can do and what the criteria are that people have to meet in order to access services. OT is another area that parents/carers feel would benefit from a multi-agency approach.

 For children with Autistic Spectrum Disorder (ASD) there are individual professionals who are very supportive, as are the ‘What now?’ and ‘Early Bird’ programmes. Unfortunately most parents/carers do not feel that they are listened to or their opinions valued and they feel there is a lack of understanding about ASD within the wider community. Parents/carers would like to see improved communication, more consistency across services, better continuity of care (including post 16) and access to professionals.

 Other issues that parents/carers raised included feeling blamed for their child’s behaviour and diagnosis. They requested improved training and awareness of SEND in the wider community and among professionals as well as some emotional support for themselves and their families. Also highlighted was the poor access to CAMHS, poor support post 16 and for those with high-functioning ASD and other learning difficulties. Overall, parents/carers want to see transparency and consistency within the SEND process, effective communication from service providers and improved multi-agency working.

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1. Commitment to improving SEND services in Cumbria In March 2019 OFSTED and the Care Quality Commission (CQC) inspected and reported on Cumbria’s Special Educational Needs and Disability (SEND) services and found that they were in need of significant improvement¹.

Cumbria County Council (CCC) recognised they had to address this:

“Improving services for children and young people with SEND is a priority for all of us. Services should be consistently good across the whole county. We welcome the report findings. They reflect our own self-evaluation and confirm that while there is much work to do, we are moving in the right direction. We are pleased that inspectors found many examples of where services are working well, and that the quality and dedication of staff working with children and families was recognised. We are committed to getting it right for children and young people with SEND and we are working together, alongside parents/carers and carers, to respond to the inspection findings and make improvements.”²

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2. Implications of the OFSTED and CQC SEND report In response to the report, CCC and the local NHS CCGs established the SEND Improvement Board.

SEND Improvement Board³

Name Position Working Group Link

Fiona AD Integration and Partnerships, Chair of Working Group 1 – Musgrave CCC Understanding Local Need

Sharon Senior Manager, Children’s Chair of Working Group 2 - Simpson Commissioning, CCC Commissioning & Access to Provision

David Blacklock CEO People First Chair of Working Group 3 Engagement & Co-production

Dan Barton AD Education and Skills, CCC Chair of Working Group 4 - Transition

Colin Cox Director of Public Health, CCC Chair of Working Group 5 - Emotional Health and Wellbeing

Mary Mulligan Senior Manager, Inclusion, CCC Chair of Working Group 6 SEN Support

Julia Westaway Population Health and Children’s Deputy Chair of Working Group 1 System Senior Manager Understanding of Local Need

Greg Everett Senior Commissioning Manager, Deputy Chair of Working Group 2 Children and Families, North Commissioning & Access to CCG Provision

Harry Harrison Commissioning Manager, North Deputy Chair of Working Group 3 Cumbria CCG Engagement & Co-production

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Lyn Durrant Associate Director of Operations Deputy Chair of Working Group 4 Children and Families, NCIC - Transitions

Amanda GP Lead North Cumbria CCG Deputy Chair of Working Group 5 Boardman - Emotional Health and Wellbeing

Alex Nancollis Designated Clinical Officer Deputy Chair of Working Group 6 SEN Support

John Readman Executive Director of People, CCC

Hilary Fordham Chief Operating Officer, Morecambe Bay CCG

Anna Stabler Director of Nursing and Quality, North Cumbria CCG

Cristina Chair - Parent Carer Forum Bowman

Julia Buchanan Parent/Carer Reference Group

Councillor Anne Cabinet Member – Children’s Burns Social Care, CCC

Councillor Sue Cabinet Member – Schools and Sanderson Learning, CCC

Councillor Val Cabinet Member – Scrutiny CCC Tarbett

Amy Holliman Senior Manager, Partnership & People Improvement, CCC

Kieran Barr Communications Business Partner, CCC

Linda Bennetts Associate Director of Nursing – Mental Health CNTW

Karen Worton Associate Director of Nursing Children & Families CNTW

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David Muir Group Nurse Direct, North Cumbria Locality, CNTW

Jo Johnston Lancashire Care

Sarah Powell Primary Heads Association

Anna Scamans SEND Project Manager, CCC

2.1 The SEND Improvement Board Written Statement of Action (WSoA)

In October 2019, the SEND Improvement Board drafted the ‘Cumbria Local Area SEND Written Statement of Action’.

The “Written Statement of Action (WSoA) has been produced in response to Cumbria’s Local Area Special Educational Needs and Disabilities (SEND) Inspection undertaken by Ofsted and Care Quality Commission between 11th March and 25th March 2019 and sets out the actions that will be taken to address the identified areas of concern.”⁴ The WSoA identified nine ‘areas of concern’ that needed to be addressed:

1. Lack of understanding of the needs of the local SEND population.

2. Lack of understanding among leaders of the strengths and weaknesses within their areas of responsibility.

3. Limited joint working

4. Lack of trust from many parents/carers and carers.

5. Limited involvement of children, young people and their families in coproduction

6. Weaknesses in approach to supporting emotional health of children and young people with SEND.

7. Inconsistent application of local area strategy for assessment and support

8. Weaknesses in ensuring a smooth transition from children to adult services.

9. Inequities between different geographical areas within Cumbria. (Full details of the WSoA can be found at ⁴)

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The WSoA reinforced a commitment to co-production and “working together with families in an honest partnership”⁴.

As part of the commitment to improving SEND services, Cumbria County Council together with the North Cumbria Clinical Commissioning Group (NCCCG) and the Morecambe Bay Clinical Commissioning Group (MBCCG) asked People First Independent Advocacy (PF) to facilitate a programme of engagement; in order to involve parents/carers and carers in the service design and improvement and to improve the level of trust between parents/carers and carers and CCC and the NHS CCGs, David Blacklock (CEO of PF) was asked to lead this area of work. Who are People First? We are an independent customer-led organisation that has worked in Cumbria for over 25 years. We have a deep understanding of the area, our communities and the unique challenges.

We are the largest provider of Advocacy in Cumbria, supporting thousands of people every year to have their voices heard and helping them to live their best lives. Our independence is very important to us; we are not run or controlled by any other service.

We are a passionate organisation which dedicates itself to representing people’s views. We are dynamic and courageous and not afraid to stand up and be counted.⁵

2.2 The SEND Improvement Board Working Groups

The SEND Improvement Plan included the creation of six Working Groups. Each group is focused on a specific area highlighted within the OFSTED/CQC report as ‘needs improvement’.

Working with the Parent Reference Group, members agreed that a set of parent/carer representatives would be put forward to each of the Working Groups. It was agreed prior to allocation that having four representatives would enable the responsibility to be shared equally; two would attend and the other two would be able to provide support and act as substitutes when required. After a fair and anonymous selection process, representatives were allocated to each group, taking account of factors including geography, age of child and presenting conditions. These representatives became involved in Working Group meetings.

To enable parental/carer involvement at every level within the improvement process, two parent/carers were also nominated to sit directly on the SEND Improvement Board to work alongside staff from CCC and the NHS CCGs.

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The Working Groups are:

1. Understanding Local Need

2. Commissioning and Access to Provision

3. Engagement and Coproduction

4. Preparation for Adulthood

5. Emotional Health and Wellbeing

6. SEN support

2.3 Working Group 3 – Engagement and Coproduction

David Blacklock of PF is the Chair of Working Group 3 (WG3) ‘Engagement and Coproduction’. WG3 aims to ensure the voices of parents, carers and young people are fully integrated into the SEND improvement work.

“Our ambition is that through our actions over the next 24 months, we regain the trust and faith of parents and carers in Cumbria in the ability of the local area to work in partnership with them. Together we want to develop and deliver high quality services that meet the needs of children and young people with SEND and to increase the volume and quality of coproduction taking place.”

This report details the engagement activity delivered by WG3 during the first phase of engagement.

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3. The SEND Engagement Offer 3.1 The Parent and Carer Reference Group (PCRG)

The Parent and Carer Reference Group held its initial meeting in August 2019. The Parent Carer Reference Group currently has a membership over 50 parents/carers.

The PCRG offers parents and carers the opportunity to be involved in the SEND improvement process. The group has recently developed four of the five surveys, listed below and (distributed to all parents/carers in Cumbria) and nominated a parent/carer representative to the interview panel for the recruitment of the SEND Project Manager. 3.2 Surveys

The SEND OFSTED/CQC inspection highlighted gaps in both understanding the strengths and weaknesses of the system, and the experience of children, young people and their families.

In total five surveys were developed with the aim of improving how we engage with parents/carers, young people and professionals on ways that the service can be improved.

The surveys were: 1. EHCP Parent/Carer Survey 2. EHCP Child/Young Person Survey 3. SEND Support Parent/Carer Survey 4. SEN Support Child/Young Person Survey 5. SEND Professionals Survey

3.3 Stakeholder Engagement

In December 2019 an engagement session was arranged with stakeholders involved directly and indirectly with the SEND provision in Cumbria.

Over 60 people attended with a broad representation from schools, charities and other third sector organisations as well as a number of NHS and CCC staff.

The session highlighted the primary concerns for stakeholders and also identified areas for improvement, as raised by the vast number of organisations present.

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Areas of improvement identified included:

1. Communication

2. The need for more engagement with SEND staff

3. Keeping stakeholders updated on the improvement process and on the SEND journey

4. The Local Offer https://localoffer.cumbria.gov.uk/kb5/cumbria/fsd/localoffer.page?familychannel=5

5. How to share knowledge between organisations

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3.4 Shout Group, Maryport

In January 2020 David Blacklock, Chair of WG3, was asked to attend the SHOUT Parent Support Group in Maryport.

Joanne Hill from the group explained how the engagement went:

“The Shout Parent Support Group is based in Maryport. We have been supporting families for almost seven years and during this time we have hosted many different professionals to speak to families and deliver workshops.

Families approach us for advice and support and we signpost them to a variety appropriate services. Families have identified ongoing issues regarding CAMHS and feel they have exhausted all options available.

We invited David Blacklock to our January meeting which was very productive.

We approached Ewanrigg Local Trust to raise our concerns, as they have the ‘We Will' Youth Mental Health Group. This group has achieved admirable work highlighting and publicising the need for youth mental health training.

David Blacklock raised our concerns at a recent conference and we are now delighted to have received an email from Fiona Dixon (CAMHS) asking us to highlight the specific issues that families were facing.

Shout & the Owl Blue charity collated the evidence (with permission from our members) and arranged a meeting with Fiona Dixon and her colleagues. We felt this was necessary to give confidence to our families that their concerns are being taken seriously. This meeting is a huge step forward as it will enable parents/carers and professionals to remove barriers and work together.

Shout Parent Support Group & Owl Blue support this initiative as we engage with families who are seemingly stuck in a system that isn’t working.

CAMHS should support SEND families in a proactive and productive way with early intervention, playing a key role.”

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4. Parent and Carer Engagement Conferences – January 2020 Four Parent and Carer Engagement Conferences were held during January 2020 creating an engagement opportunity for over 200 parents/carers and carers.

Venue Date Attendees

Carlisle 17th Jan 2020 70

Whitehaven 22nd Jan 2020 64

Kendal 24th Jan 2020 50

Barrow 31st Jan 2020 46

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Each conference followed the same format and included:

Presentations from:

 Dan Barton - Assistant Director, Education and Skills, CCC: What went wrong?

 Greg Everatt (North) - Senior Commissioning Manager North Cumbria CCG: What have we done so far?

 Julia Westaway (South) – Senior Commissioning Manager Morecambe Bay CCG: What have we done so far?

 David Blacklock – Chief Executive PF: What engagement has been done so far?

 Rebecca Barns (South) All of Us, young people project, videos by young people

 Liz Wright (North) All of Us, young people project, videos by young people

 Kieran Barr - Communications Business Partner, Customer and Community Services, CCC: What do we know from the SEND survey findings? Two short films:

These were made by two different families that demonstrate their experience of living with a child with SEND. These films are part of a larger series that aims to gather the ‘lived experiences’ of parents/carers, carers and young people across Cumbria and to bring these experiences to a wider audience. Parents/carers were encouraged to take part should they wish to share their story by contacting People First. A series of workshops:

 Educational Health and Care Plans (EHCPs)

 Speech and Language Therapy (SLT)

 Occupational Therapy (OT)

 Autistic Spectrum Disorder (ASD)

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5. Parent and Carer Engagement Conferences – key themes Parent and carer feedback from the workshops was compiled and key themes were identified which will be used to shape the SEND Improvement and future engagement activity.

5.1 EHCP

Summary of EHCP feedback:  Parents/carers across all areas appreciate the value of the EHCP as a legal document and feel reassured that this means service providers have to adhere to it.

 The EHCP is also valued as something that considers a parent’s view as well as those of professionals. Though it was felt that professionals could be working together more effectively.

 There is a lack of consistency of support, information and communication around the EHCPs. Parents/carers would like a simpler and more transparent process that is easier to understand.

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EHCP feedback by District –

What is good?

Whitehaven Barrow Kendal Carlisle It’s a legal document. It’s one working document It’s legally binding. It’s legally binding. that contains all the relevant information. Ensures all a child’s It’s person-centred Parent’s views are Parent’s views are needs are met. considered. considered. Enables all relevant It collects the views of It collects the views of parties to work different professionals. different professionals. together.

What could be improved?

Whitehaven Barrow Kendal Carlisle If the process was If the family felt If school staff were If the process adhered to simpler and it was easier supported. better supported and if legal requirements. to understand. they were more supportive. Consistency of support, Consistency of support, It was easier to It was easier to understand information and information and understand. and parents/carers were communication. communication. supported through the process. If schools were more More transparency. The right professionals Professionals worked supportive. were involved. together.

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5.2 Speech and Language Therapy (SLT)

Summary of SLT feedback:  SLT is seen as effective if children are able to access it early enough.  Parents/carers also appreciated having SLT integrated within or working closely with schools.  Parents/carers would like to have more information about SLT and perhaps be provided with some basic skills or training, so they can continue the therapy at home.  As with the other areas, parents/carers want to see more transparency, consistent access to services, better communication from service providers and a continuity of care between service providers.  More appointments, regular sessions and shorter waiting times were also concerns.

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SLT feedback by District

What is good?

Whitehaven Barrow Kendal Carlisle It is effective if it’s accessed Early intervention is Can help a child’s The therapist was good. early enough. helpful. progress. The therapists are good. It’s based in school. It is integrated within They worked closely with the school. the school.

What could be improved?

Whitehaven Barrow Kendal Carlisle Parents/carers could be School could Parents/carers could be Better information for provided with training to have identified provided with training to parents/carers. continue at home. needs earlier. continue at home. There was consistency Improved More transparency and Better communication. across services and of awareness within better communication. access to services. schools. Shorter waiting times. More appointments. Better awareness and training within schools. Regular sessions. If there were appropriate A continuity of care and interventions for non-verbal better joint working between children. different services. Earlier intervention.

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5.3 Occupational Therapy (OT)

Summary of OT feedback:  Parents/carers noted that there is good availability for OTs, good support and quick referrals, particularly in the Whitehaven, Kendal and Carlisle areas.  It was felt that there was not enough ongoing support, that children are only given a few appointments.  Parents/carers would like clearer guidance on what support is available, what OT can do and what the criteria is that people have to meet in order to access services.  OT is another area that parents/carers feel would benefit from a multi-agency approach.

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OT feedback by District

What is good?

Whitehaven Barrow Kendal Carlisle Good availability. Good communication Quick referrals. Good access. from the local OT. Provides good support. The therapists are good. The therapists are good.

What could be improved?

Whitehaven Barrow Kendal Carlisle If there was a planned If the OT had experience Flexibility of access. approach. of specialist needs. Clear guidance on what is Continuity from Clear guidance on what Better communication. available and how they can childhood through to is available and how offer support. adulthood. they can offer support. A multi-agency A multi-agency A multi-agency approach. approach. approach. More ongoing support. More ongoing support. More ongoing support – not enough appointments. What criteria you have to What criteria you have to Quicker diagnosis. meet in order to access meet in order to access services. services.

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5.4 Autistic Spectrum Disorder (ASD)

Summary of ASD feedback:  Individual professionals are recognised by parents/carers as being helpful and supportive, but this is not reflected at the service level.  Parents/carers appreciate the ‘What now?’ and ‘Early Bird’ programmes.  Parents/carers do not feel that they are listened to or their opinions valued.  Across all areas parents/carers want the wider community, professionals and staff within schools to be aware and understand the needs of children and young people with ASD.  Improved communication, information and support were among the most cited requests from this feedback.  Parents/carers would like more consistency across services, better continuity of care (including post 16) and access to professionals.

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ASD feedback by District

What is good?

Whitehaven Barrow Kendal Carlisle Certain individuals Certain individuals Certain individuals Certain individuals (professionals). (professionals). (professionals). (professionals). The ‘What Now’ and The ‘What Now’ The ‘What Now’ and ‘Early Bird’ programmes. programme. ‘Early Bird’ programmes. Consistency – working with Having the process the same professionals. explained clearly.

What could be improved?

Whitehaven Barrow Kendal Carlisle More funding and better A shorter timeline for Clearer timescale, better Reduce waiting times. resources. access to services. communication and quicker access to appointments. Better training for Multi-agency support. Multi-agency support. Multi-agency support. parents/carers and professionals. Better information, Being listened to and Parents/carers feeling Parents/carers feeling communication and given support (as a understood and their understood and their support. family.) opinions valued. opinions valued. Improved continuity of A single point of contact. Continuity of support. Improve care. communication from professionals. An increased awareness An increased awareness More support for families. More support and and understanding of ASD and understanding of understanding for within the wider ASD within the wider families. community. community. Access to professionals. Consistency of Access to professionals. professionals. More support post More support post 16. diagnosis and into adulthood. More provision within mainstream schools.

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5.5 Other issues

Summary of ‘other issues’ feedback:

 Many parents/carers feel blamed (and sometimes shamed) for their child’s behaviour and diagnosis and feel this could be remedied to some degree by improved training and awareness in the wider community and among professionals.  Across all the localities parents/carers asked for some emotional support for themselves and their families.  Better support and information about what is available post 16 is required.  There is poor access to CAMHS.  Parents/carers feel there should be more provision for those with high functioning ASD and other learning difficulties.  Finally, as with all the other feedback areas, parents/carers want to see transparency and consistency within the SEND process, effective communication from service providers and improved multi-agency working.

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Other issues feedback by District

Whitehaven Barrow Kendal Carlisle

Difficulties getting Difficulties getting A lack of respect for a child’s Parents/carers being access to CAMHS. access to CAMHS. and parent’s privacy. blamed and not listened to. Long waiting lists. Difficulty getting A general lack of Shorter waiting times for access to respite care. understanding around referrals and appointments. SEND. More transparency Improved Agencies need to work Support for the whole over the process. communication. together. family, including siblings. Emotional support for Emotional support for Emotional support for Emotional support for parents/carers. parents/carers. parents/carers. parents/carers. Better training for Better training for school Increased awareness and school staff. staff, so they can provide understanding within better support to schools and the wider parents/carers. community. More information and More information and More information and better Better support for transition better support for better support for post support for post 16. periods. post 16. 16. More provision for More provision for those those with high with high functioning ASD. functioning ASD. Better communication and information. More specialist schools.

6. References

¹ https://files.ofsted.gov.uk/v1/file/50079132

²https://localoffer.cumbria.gov.uk/kb5/cumbria/fsd/site.page?id=JBJNucLbFiY

³https://localoffer.cumbria.gov.uk/kb5/cumbria/fsd/advice.page?id=WsVEk820EDk

⁴https://search3.openobjects.com/mediamanager/cumbria/fsd/files/cumbria_local_area_ wsoa_for_publication_-_october_2019.pdf

⁵https://wearepeoplefirst.co.uk/about-us/