The National Network of Parent Carer Forums (NNPCF) acknowledges and welcomes the government’s recent announcement to extend mental health support to nearly one million additional pupils across England. (GOV.UK)
We welcome this investment and the recognition of the critical role mental health plays in the overall well-being and educational outcomes of our children. Early intervention and accessible support within educational settings are vital components ensuring that mental health challenges are addressed promptly.
However, we must emphasize that while this expansion is a positive development, it does not fully address the unique challenges faced by some children and young people with Special Educational Needs and Disabilities (SEND). Many families continue to encounter significant barriers in accessing appropriate mental health services tailored to the specific needs of their children. Issues such as long waiting times, lack of specialized support, and insufficient integration between educational and health services persist, often leaving SEND pupils without the necessary resources to thrive.
It is imperative that the rollout of mental health support teams includes provisions specifically designed to meet the diverse needs of SEND students. This includes training for mental health professionals in SEND-specific issues, ensuring that interventions are adaptable and inclusive, and fostering collaboration between schools, health services, and families.
Furthermore, while the goal to provide universal access to mental health support by 2029/30 is ambitious, the urgency of the current mental health crisis among young people necessitates accelerated action.
The NNPCF remains committed to working collaboratively with the government, educational institutions, and health services to ensure that the voices of families are heard and that the mental health needs of all children and young people, especially those with SEND, are adequately met.
On 27th September 2023, the Department of Health and Social Care issued a Patient Safety Alert regarding the shortage of specific ADHD medications.
It has been reported in the press that the disruptions are expected to continue, and so we have written to the Ministers outlining our concerns, and what steps the government is taking to address the shortage of medication, and the increased levels of support that is needed for children and young people in education.
You are welcome to share this letter with your families and to support conversations within your local area.
The NNPCF know that the cost of living crisis is causing worry and stress for all families especially those with disabled children.
We bring the genuine issues that families are experiencing to every meeting we attend to ensure these at issues are discussed at all levels.
Below are some websites that may be able to offer assistance and advice during this winter.
General Help for Household’s -This is the governments website with resources on how to get support with energy bills, household costs, childcare costs, and what discounts and offers are available.
Warm Home Discount Scheme – This may offer some people on benefits assistance or with low incomes towards electrical bills.
Help paying bills using your benefits – There is more information on the government’s website to advise about paying debts for energy bills out of benefits payments.
Charitable Trusts Some energy companies have set up Charitable Trusts which customers can apply to for help if they are finding it difficult to meet energy costs or have arrears. If your energy supplier doesn’t have a trust you can apply to British Gas Energy Trust for help, as their charitable scheme isn’t just for British Gas customers.
Most charities will expect that customers apply to a debt/money advice organisation for help before going to them.
There may be other charities who could assist with energy costs, by providing grants, which is money which doesn’t need to be paid back.
You can use Turn2Us to search for grants and schemes.
Benefits check Have you had a benefit check lately? It’s recommended that families get a benefits check from their local benefits advice service to check whether they are receiving all of the financial support that they are entitled to, as an increase in income may help the family to meet ongoing costs. They can find your local benefits advisor here.
Energy efficient upgrades
You may be entitled toenergy efficiency support, which may help towards energy efficient upgrades to your home.
The charity Scope offer disabled people and their family’s advice regarding energy support. Disability Energy Support
Local Energy Advice Partnership LEAP
LEAP is a free service that is helping people keep warm and reduce their energy bills without costing any money
If your child has an oxygen concentrator, you can get a rebate for the electricity the concentrator uses from the company that supplies the concentrator. Contact them directly for advice.
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:
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.
The mental health and wellbeing of both our parent carer forum members and their children and young people with SEND is a priority for us, the NNPCF.
We are acutely aware of the impact that the COVID pandemic has had on everyone, especially parent carers.
We have created a survey to help inform our future work and to advise our response to the call for evidence to develop a new cross-government, 10-year plan for mental health and wellbeing for England.
