Neurodiversity means that across the population there is variation in people’s brains. Having people in society who see the world differently and have unique skills is an important part of life to be celebrated. The term “neurodivergent” refers to people whose brains work differently to the typical cultural standards. Neurodivergence includes conditions that people are born with including autism,ADHD, learning disability and learning disorders.
This programme of free virtual workshops for parents and carers will explore nurturing the unique strengths of neurodivergent children and young people and provide advice on how to support them with the challenges they face.
Any parent or carer is welcome to join regardless of whether their child has a diagnosis. The workshops are live on Zoom and are 75 minutes long.
Recordings of the workshops and resource packs will be sent after the live event to everyone who has registered.
Childhood Neurodiversity: Understanding and Supporting Sensory Needs What are the different sensory systems? What might sensory processing difficulties look like in children and teenagers?
This workshop will answer these questions and explore how parents and carers can support a child’s sensory needs. Monday 6 November 1pm book here
Childhood Neurodiversity: Understanding and Supporting Eating Difficulties This workshop is for parents/carers concerned about their neurodivergent limited diet (i.e.avoiding or restricting certain foods). We will explore why children may struggle to eat, anxiety around eating and how parents/carers can support children with these eating struggles.
This workshop is not aimed at parents of children whose eating difficulties relate to body image concerns. Thursday 7 December 1pm book here
Childhood Neurodiversity: Supporting Language and Communication This workshop will discuss language and social communication, including how parents/carers can support their children to communicate. This workshop will be co-delivered with the Integrated Community Paediatric Services Speech and Language Therapy Team. Tuesday 9 January 2024 1pm book here
There are lots of opportunities for forums to represent the experiences of their members! More details on each consultation and parliamentary inquiry can be found below.
Currently open inquiries and consultations that may be of interest to forums and included in this briefing:
Improving support for children missing education
The Department for Education is seeking views on:
how children missing education are identified and supported
the challenges in identifying and supporting children missing education
how to address those challenges
The consultation covers a wide range of children missing education including those with SEND. Forums and individual parent carers can access the consultation here.
Major Conditions Strategy
The government is currently developing a major conditions strategy for England which will manage the 6 major groups of health conditions that affect most populations in England.
These are:
cancers
cardiovascular disease, including stroke and diabetes
chronic respiratory diseases
dementia
mental ill health
musculoskeletal disorders
This call for evidence builds on from the calls for evidence last year on cancer and mental health.
Forums and individual members can give their views on the major conditions strategy here.
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 response and recovery from the Covid 19 pandemic and implementation of the NHS Long Term plan are critical to parent carer forums and are key priorities for the NNPCF.
We have been hearing very clear feedback on issues in the health system and around the implementation of the NHS Long Term Plan from parent carer forums and the regions.
NNPCF steering group members Kath Bromfield, Jo Gilliland, Ros Luff, Mrunal Sisodia, met with NHSE leaders Phil Brayshaw and Lorraine Mulroney on 18 March and shared some concerns with them.
1. Capacity across the system to deliver the key LDA projects.
We are aware of several capacity issues which are impacting ability to deliver on some of the key LDA projects. Factors include, in no particular order:
Community health services have huge waiting lists
Schools are struggling to remain open with the various Covid impacts. This includes staff sick absences and keeping ahead of the DfE contingency plans for exams and any future peaks in the pandemic.
Whilst there is willingness to engage with the Autism in Schools project, on a practical note schools may not be able to prioritise this.
Parent carers may be under extra demand with their caring responsibilities with children off school with covid related issues.
There is pressure on forums time resource where the projects overlap, and it is the same parents involved (see also co-production paragraph).
This has been compounded where some projects have been slow to start and are now being rolled out at pace, putting increased pressure on forums.
2. Disconnect between the regional implementation and the national team
There are differences between the national team vision and regional implementation. Whilst this will always be the case due to regional differences, sometimes it seems there is little link up. Regional teams are reporting that whilst the flexibility on how to implement projects is welcome and allows for regional / local implementation, they would appreciate more of a structure and framework on how to implement projects.
3. Quality of coproduction is very varied.
Feedback from forums indicate a very mixed picture around co-producing. Some areas were involved late on in a project whereas others were fully involved from the start.
We have heard that some experienced good co-production or engagement at the early expression of interest stage but then less involved as the project commenced. Some forums report only being involved at an interview stage but not in helping shape the role or service.
The increased use of virtual platforms has given opportunities for parent carers to be involved in a greater number of meetings & events. However, there has been a gradual drift away from involving their voices when organising these meetings. Often these are held at times which clash with school runs and other caring responsibilities. There is also a lack of recognition that parent forums work across partners, and this can lead to unreasonable expectation regarding availability.
There can be high expectations placed on parents to deliver presentations etc, often at very short notice.
One of the issues which impacts opportunity for good engagement or co production is that many health partners do not understand the nature of parent forums. i.e. forums are neither a supplier nor individual patient advisers. This issue is impacted further by high churn of staff.
On points 1-3 we agreed with Phil and Lorraine that we would work with the NHS LDA and SEND leads to coproduce a national, regional and local model of engagement and coproduction
4. Designated Clinical Officer / Medical Officer
DCO / DMO role remains very variable across the country. The resourcing issues post Covid and the move to ICS Integrated Care Systems is exacerbating these differences.
The roll out of ICS’s along with the changes has served to push SEND to a lower priority. It is hard for forums to keep abreast with the changes and navigate the new structure. This can also result in staff changes where relationships & understanding of forums need to be rebuilt.
Lorraine agreed to work with her SEND leads to cascade the key requirements of coproduction to the DCO
5. Strain on services in the wake of the pandemic
The pandemic has exacerbated the pressures on community health services (therapies, CAMHS, paediatricians). The already lengthy waiting lists have increased with higher demand from cohorts who are new to the services. This is causing extreme stress and increased harms in the system with families often waiting over 6 months for basic services
The loss or reduction of service during the pandemic has seen some of the existing users deteriorating and needing more specialised services. This is further impacted by many targeted / specialist services being on hold.
As a result of extra pressures in the system there is a struggle for services to manage EHCP and annual review workload. In turn, it is likely there will be greater demand for EHCPs and more looking to tribunal to obtain support.
Lorraine updated that work is ongoing at the senior levels of government to address these issues. She agreed to host a webinar in June to update parent carer forums. This has been scheduled for noon on 7th June.
