SEND Parent & Carer Engagement Report Phase 1 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 2 3 We are People First. 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. 3 4 We are People First. 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. 4 5 We are People First. 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 5 6 We are People First. 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 6 7 We are People First. 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 7 8 We are People First. 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) 8 9 We are People First. 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.