NHSE – National Network of Parent Carer Forums C.I.C

NHS England has published the new Dynamic Support Register (DSR) and Care (education) and Treatment Review C(E)TR policy

February 2023

At the end of January, NHSE published its new DSR and CETR policy.

You can find a link to it here: PR1486-Dynamic-support-register-and-Care-Education-and-Treatment-Review-policy-and-guide.pdf (england.nhs.uk)

There is also an easy read version here: Easy-read-version-of-the-Dynamic-support-register-and-Care-Education-and-Treatment-Review-policy-and-guide-Jan.pdf (england.nhs.uk)

The policy will be rolled out in April 2023.

Some definitions:

A Dynamic Support Register (DSR) is the tool used in a local area to identify individual children, young people and adults with a learning disability, autism or both who are at risk or may become at risk of admission to a mental health inpatient setting without specific and timely Dynamic Support

Note: the term “At Risk of Admission Register” was originally used, this term continues to be used in some areas. Similarly, the Dynamic Support Register is also known in some local areas as a Dynamic Support Database (DSD)

A C(E)TR is a meeting bringing together those responsible for commissioning and providing services (including nurses, social workers, local authority representatives, such as from housing and education, and health and social care commissioners) together with independent clinical opinion and those with lived experience of learning disabilities and/or autism, which includes people with a learning disability and/or autistic people and their family carers.

The aim of a C(E)TR is to check that a person who is either at risk of being admitted or who has already been admitted to a hospital setting is receiving appropriate care that meets their individual needs and that, where possible, challenges are overcome to support discharge to or continued care in the community.

The policy outlines the new process for the implementation of DSRs and C(E)TRs. The NNPCF did not have direct input into the development of the policy but we were involved in broader conversations about the issues with DSRs and CETRs in the current system, the experiences of children and young people and their families and some of the changes that we wanted to see in the new policy.

We are working with NHSE to ensure that parent carer forums are engaged in the implementation of the new policies:

NHSE will be hosting a webinar for parent carer forums to explain the new policy, what has changed and the role that parent carer forums can play in its roll out. This webinar will be held on 14 March please follow this link to sign up https://us06web.zoom.us/meeting/register/tZEud-CgrzgoH9y7_fOCdMb0HNSu7AxXToRc
In addition, NHSE are holding a briefing session for people with lived experience. This is not targeted at parent carer forums but at individual families who have had experience of the DSR / CETR process. This is open to anyone and a link to sign up for it can be found here: https://teams.microsoft.com/registration/slTDN7CF9UeyIge0jXdO4w,QEJVWbS9TUK5AFArxhPZ0g,XHWJVzje40-WI0Cvo7uh4g,RqoXUlop0EmnTOfUib1-EA,Opgv9tfH2U6JeIA35LisMg,4twvijWsJ0W_YL66zI7fvg?mode=read&tenantId=37c354b2-85b0-47f5-b222-07b48d774ee3
We are working with NHSE to convene a focus group to ensure that the face to face section of the Key Lines of Enquiry (KLOE) template which is used in C(E)TR meetings to support the consistent recording of findings and generate the C(E)TR report, is accessible and easily understood by families moving forward. We are looking for input from families that have experienced a CETR. Our participation lead Jacqui Watt is organising this to find out more or participate please contact Jacqui at participation@nnpcf.org.uk
If you have any comments on the policy you can feed them back to NHSE at england.ctrdsr@nhs.net

Our work with National Health Service England (NHSE) to develop health services.

Last year, the NNPCF was appointed the strategic partner for the Learning Disability and Autism workstream of the Children and Young People’s Long Term Plan.

In this capacity, we have been working alongside our NNPCF regions and local forums to develop services for children and young people (CYP) with learning disabilities and autism (LDA). We wanted to take this opportunity to share our work on two important areas – Autism in Schools and Keyworking.

Autism in Schools (AiS)

The foundations of the AiS programme were based on supporting families and schools in innovative ways.

The aim was to

raise awareness of the needs of young people with autism,
listen to the voice of young people and their families, and
model and implement practical ways schools could improve the experience for young people with autism.

This involved bringing together health and education expertise to take steps to support children who were finding school a challenge due to their disability and ultimately to reduce inappropriate educational exclusions and hospital admissions.

After a successful pilot in the North East and Cumbria, this project is in the process of being rolled out across England.

To date there are 15 projects, covering 210 schools, these projects are about to embark upon the second year of delivery and take on more schools (minimum of 97 at the point of writing). All projects are implementing the 3 key elements of building relationships, increasing knowledge and hearing the young person’s voice.

The offer of the project differs from region to region, however there are 9 projects who are working with AET (Autism Education Trust)*, or using the AET resources, and 7 of the projects have made links with the mental health support teams in their locality. You can find out more about projects local to you from your regional NNPCF representative.

Improving outcomes for children in school with Autism

The pilot in the North East & North Cumbria was delivered in two phases, evaluations for these are below:

Click to access Autism-Accelorator-Phase-1-evaluation.pdf

Link to the autism accelerator PDF

Click to access Autism-Accelerator-Phase-2-1.pdf

Link to the phase 2 evaluation

Parents were telling us that there were too many missed opportunities with this in mind the ethos behind the project was to bring together parent carers & schools, by implementing ‘mini forums’ within schools, providing support, signposting, facilitating workshops to meet parent carer needs within the setting and ultimately creating a network of peer support for parents with children within the school setting.

Alongside this, a series of workshops were delivered to school staff and the parent carer forum representatives who were supporting the mini forums element, at the same time looking at potential reasonable adjustments that could be made which would benefit CYP in educational settings. There was also an ‘all about me’ element to the training, so that school leads could train the trainer and deliver the workshop to students.

Keyworking

The NHS Long Term Plan includes a commitment that ‘by 2023/24 children and young people with a learning disability and/or who are autistic with the most complex needs will have a designated keyworker, implementing the recommendation made by Dame Christine Lenehan in ‘These are our children’.

Initially, keyworker support will be provided to children and young people with a learning disability and/or who are autistic who are inpatients in, or at risk of being admitted to, a mental health hospital. Keyworker support will then be extended to the most vulnerable children with a learning disability and/or who are autistic, including people who face multiple vulnerabilities such as looked after and adopted children, and children and young people in transition between services.

The framework (which was co-produced with parent carers and children and young people) that underpins the service is that children, young people and their families should:

feel safe and happy
feel listened to and informed
feel involved in their plans, care and support
experience a reduction in stress and uncertainty and an increase in stability

In their role as strategic partner to NHSE, the NNPCF sit on the national steering group, the evaluation group and the workforce development group to ensure that representation is made on behalf of the parent carers who feed into us via regions and localities. Though the workforce development group we have ensured parents voice has helped shape the design of the mandatory training. This has been informed both by those with lived experience and feedback from our various network meetings, including the PCF Community of Practice.

Alongside this, parent carer forums are involved in their regional projects. The first two waves of the project (initial pilot and early adopters) have already been rolled out. We are currently (2022/23) in wave three of the projects, which brings keyworking to all remaining localities in England. Because of this phased approach, projects are in different stages of delivery.

NNPCF representatives and regional forum members have regularly attended the national Community of Practices (CoP) for each of the stages. We have taken the opportunity to deliver presentations on partnership/coproduction with forums at the various CoPs. We have ensured the parent perspectives are shared in the CoP and some regions have co presented on their project with their regional partners.

NNPCF have also been hosting a CoPs for parent carer forums to attend, share good practice and learn from others who at differing stages of project delivery. These CoPs offer an opportunity for forums to share a more focussed discussion, around keyworking from a parental perspective, than can be achieved in the CoPs with wider partners.

Joining links are shared on NNPCF social media and can be sent by your NNPCF steering group member.

*AET are a not-for-profit organisation supported by the Department for Education

Communication Access UK is an initiative developed by the Royal College of Speech and Language Therapists in partnership with charities and organisations that share a vision to improve the lives of people with communication difficulties. The NNPCF have been part of the steering group to create and develop the Communications Access Symbol from the beginning. It is a new disability access symbol underpinned by a completely free training package and standards. The NNPCF is currently working towards accreditation of the symbol, and you can join us by registering your forum, and sharing with your Local Authorities and health services. You can complete the training either as an individual or as an organisation. Find out more about the symbol here: https://communication-access.co.uk/about/

The training consists of 4 short e-modules that can be completed in your own time and is free to do. Once completed you will receive a certificate that will be valid for one year.

To hear why the symbol is important to people with communication difficulties please watch this video: https://www.youtube.com/watch?v=kD5_p_YZ1PY&t=1s