"Not thriving... just about coping": Liverpool’s response to the health and social care needs of children and young people (0 – 25) with Special Educational Needs and Disabilities (SEND)

We are pleased to publish a report exploring Liverpool’s response to the health and social care needs of children and young people (0 – 25) with Special Educational Needs and Disabilities (SEND).
image of front cover of Healthwatch Liverpool SEND report

This report was researched and compiled prior to the Covid-19 crisis and was submitted to Liverpool’s SEND Partnership Board in draft form in the week before the country went into lockdown in March 2020. The report and recommendations clearly need to be considered in this light; however the issues raised within the report have not ceased to exist. In many ways they have become even more pressing.

Executive Summary

It has been five years since the Children and Families Act 2014 introduced significant changes to the delivery of education, health and social care services to children and young people (aged 0–25) with special educational needs and disabilities (SEND). 

During this time, parents, carers, children and young people needing assessment and additional support in Liverpool have reported frustration at the pace of change, including strategic responses and service re-design, and have expressed concerns about the impact that this has had on their wellbeing – above and beyond the day-to-day challenges which they face. 

During this period, Liverpool, in common with the rest of the country, has experienced increasing demand on education, health and care services in a climate of austerity and reduced resources.

A joint Care Quality Commission/Ofsted inspection of Liverpool’s SEND provision in January 2019, whilst highlighting examples of good practice, identified “significant weaknesses”, noting a number of areas of concern and setting out specific areas for improvement.

Liverpool City Council, NHS Liverpool CCG (Clinical Commissioning Group) and key partners have responded positively to the issues highlighted, acknowledging that change has been slow and producing a SEND Written Statement of Action (WSoA). This Statement outlines how the city intends to address concerns relating to, for example, multi-agency working, Education, Health and Care Plan (EHCP) assessment, Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD) pathways.

It therefore felt timely for Healthwatch Liverpool to offer an independent opportunity for children and young people, parents and carers, and SEND professionals to provide comments and feedback on how change is progressing, to help to inform ongoing strategic development and implementation, and to contribute to positive progress in the spirit of co-production.

It is also in line with the Healthwatch role, as set out in the SEND Code of Practice (DfE, DoH, Jan 2015), in terms of: 

  1. Provision of information and advice about education, health and care, which should be included as part of the Local Offer
  2. Engagement of children, young people, parents and carers in the SEND commissioning process
  3. Local accountability through membership of the Health and Wellbeing Board
  4. Local Independent NHS Complaints Advocacy

Over 9 months we received input from 208 individuals, including:

  • 75 parents and carers
  • 72 children and young people
  • 61 SEND practitioners

The aim of our engagement with children, parents, carers and professional stakeholders was to capture, and learn from, their experiences of Liverpool’s SEND provision and to make a series of recommendations, based on their expert insights. We aimed to look at the whole process, from identification and assessment of need, through to the production of EHCPs (where required), individually tailored support, and transition to adulthood and adult services. We were particularly mindful of the fact that the Children and Families Act 2014 emphasises working collaboratively with children and young people with SEND, and their parents or carers – and states that EHCPs and other appropriate support should be co-designed with them and take account of their views, wishes and aspirations.

Recommendations

  1. Increase the size of the SEND Case Work Team and ensure that parents/carers and, where appropriate, children/young people know who their Case Worker is, what their role entails, and how to contact them. This will a) further reduce caseloads; b) reduce waiting times; c) improve communication with parents/carers; and d) provide a single point of contact for signposting and co-ordination of information. It is encouraging to note that additional staff are already being recruited.
  2. Renew the emphasis on early intervention. Early awareness of the signs or indicators of SEND can be as helpful to those not meeting the EHCP ‘threshold’ as to those that do. This entails professionals listening to parents/carers and valuing their expert insights about their own children’s strengths, needs and aspirations. Early support is crucial to reduce crises, costs and mental distress for the whole family; and increased training and support for nurseries and early years professionals to assist parents/carers with initiating EHC assessments as early as possible is essential. 
  3. Increase the representation of parents/carers and children/young people at all stages of the commissioning cycle – including additional places on the SEND Partnership Board – to improve co-production and further amplify the voices and expert experience of these groups. This should include the introduction of formal and informal mechanisms for children/young people to feed into strategic decision making and governance. Again, more value needs to be given to the expertise of parents/carers and to diversity of inclusion.
  4. Work to develop ‘whole life’ pathways – from early years through the transition between stages of education, to the transition to adult services. This should include ‘easy access’ to adult services for young people/adults with late diagnoses. A clear majority of parents/carers who responded to the Healthwatch Liverpool survey said the EHCP doesn’t contain enough information about transition to adulthood. It is encouraging that the NHS Mental Health Implementation Plan 2019/20 – 2023/24 addresses this to some extent in respect of psychological support but this should also apply to neurodevelopmental and other additional needs.
  5. Refresh and redesign the SEND Local Offer website – and include Healthwatch Liverpool (HWL) as part of the Local Offer; particularly in relation to its roles in information provision (e.g. maintaining the Live Well Directory ) and independent NHS Complaints Advocacy. Parents/carers and professionals still feel the need for clearer access to information, advice and advocacy on e.g. diagnosis, treatment, peer support, professional support, training (e.g. on social skills, dealing with violence from children/young people, independent living, employment opportunities and Access to Work), culturally appropriate support, etc. The Liverpool Local Offer app, co-produced with children and young people, provides a useful model for how parents and carers could be further involved in designing a Local Offer website which responds to their needs more efficiently, and which shows evidence of wide consultation with equalities groups and with parents/carers/children/young people living with under-represented SEND support needs as well as those with more common diagnoses/conditions. Any redesign should take account of a range of access needs (e.g. pictures may help some groups but may be problematic for others without a description) and ways of presenting information which is navigable by people with a range of additional needs, including sensory impairments. 
  6. Improve the consistency and quality of EHCPs – to include specific/quantifiable support which can be easily monitored and evaluated. This will enable parents/carers to have a better understanding of what support is in place and who is responsible for delivering it; and will also enable all stakeholders to monitor the support delivered, and its associated outputs/outcomes, more effectively.
  7. Ensure that EHCPs are meaningful to children/young people. Children and young people who attended focus groups facilitated by LSCP Young Advisors on our behalf requested a one-page document, explaining the EHCP aims and actions. They suggested that this should be provided in addition to a detailed explanation, before and during their appointments, about what the meeting is about, what will happen at it, how the meeting and subsequent support plans have been designed to help them, and how they can provide feedback about whether or not EHCP actions or support plans are working well for them.
  8. Increase investment in voluntary and community sector support for parents/carers and children/young people. This could also include increased commissioning of voluntary sector organisations, such as Parent and Carer organisations and statutory services provided by voluntary sector organisations (e.g. LivPaC and SENDIASS) and those with a focus on equality and diversity (e.g. Mary Seacole House) to increase their already excellent delivery of information, advice and support. Increased capacity in the voluntary and community sector should reduce pressure on statutory services whilst providing reassurance to families through peer-led support and ‘lived experience’ expertise. 
  9. Increase investment in BAME voluntary sector and language support to ensure equality of access for Black, Asian, Minority Ethnic and Refugee families; and those whose primary language is not English (including BSL). Ensure BAME parent/carer representation on the SEND Partnership Board, and increased diversity in the Board membership and the SEND workforce, which should increase cultural sensitivity and reduce unconscious bias. 
  10. Increase the focus on mental health support for the whole family unit, including via peer support. One of the most striking features of the feedback from Healthwatch Liverpool’s SEND work has been the levels of stress, anxiety, depression and fear that families live with, in addition to the everyday pressures of living with SEND. This still requires de-stigmatisation and easy access to support.
  11. Improve access to information about personal health budgets – what they are, how to access and manage them, the advantages and drawbacks, and where to find further advice and information.
  12. Improve information about choice of educational setting - including mainstream provision, specialist provision and home education as options for parents/carers. Listen to parents/carers and children/young peoples’ concerns, aspirations and preferences and provide clear information on the advantages and drawbacks of the available options. Encourage use of existing facilities (e.g. libraries/schools out of hours) by home educators and peer support groups, and encourage collaboration and partnership between mainstream and specialist schools, to share resources, expertise and best practice, to the benefit of all.
  13. Improve communication between professionals and parents/carers, and between professionals. Co-production and multi-agency working should always focus on the child/young person’s best interests and this requires more opportunities for contact between all stakeholders, on a level playing field and with mutual respect. Named case workers should play a key role as facilitators but there is also a need to continue developing ‘Local Offer Live’ events, and opportunities to work collaboratively through co-production working groups, lead jointly by parents/carers and professionals. There should also be emphasis on two-way communication between strategic leads and professionals working in the field, to ensure that strategy is informed by the reality ‘on the ground’. 
  14. Increase access to training opportunities. This includes SEND awareness training for professionals across education, health and social care and, particularly those teaching (and training to teach) in mainstream settings. Co-production might also include parents/carers and children/young people delivering training to professionals and/or developing joint training sessions with professionals. Training for parents/carers, children/young people and siblings should continue to be offered at flexible times and locations. Some parents/carers would find shorter courses (6-week rather than 12-week) easier to commit to. Some parents/carers requested support around violence from their children/young people as they become older. Again, there are opportunities to commission training from voluntary sector partners.
  15. Increase access to short breaks, respite, Local Authority-provided social activities for families. This would help to alleviate stress for all family members. However, at present, families report that they do not meet thresholds, or that services do not cater to their needs, so they feel excluded. The geographical spread of services also prevents access by those without their own transport.
  16. Improve alignment of Neurodevelopmental and CAMHS support. Some concerns remain that children/young people can miss out on accessing additional support once they have a diagnosis for another specific Pathway. It is encouraging that the NHS Mental Health Implementation Plan 2019/20 – 2023/24 addresses this to some extent. 
  17. Ensure wider diversity of representation. Other recommendations focus on greater involvement of parents/carers and children/young people – including those from BAMER groups – at strategic level, in the workforce and across advisory groups. This also applies to e.g. low- incidence disabilities. It is important to ensure equally good provision and choice for children/young people with less common additional needs as for those who are relatively well provided for. The views of those with rarer conditions are not always gathered or represented effectively in surveys or other mechanisms for participation and co-production, including in this report, and action needs to be taken to address this.
  18. Maintain existing levels of support services across education, health and social care, and work towards strategic improvements notwithstanding the implications of The Coronavirus Act 2020 or any subsequent legislation which may reduce pre-Covid-19 statutory duties towards children and young people with SEND.

Downloads

If you need this report in a different format, please email enquiries@healthwatchliverpool.co.uk or call 0300 77 77 007

"Not thriving... just about coping": Liverpool’s response to the health and social care needs of children and young people (0 – 25) with Special Educational Needs and Disabilities (SEND)

Becoming a Healthwatch Liverpool Member is FREE!

We've made it even easier for you to share your expert knowledge as a patient, service user, carer or service provider and help shape local health and social care services.

Sign up