Governance Slide – SEND H&W

🧩 CYP Board Update: Autism & Eating Difficulties 

(New NHS England draft guidance – March 2026) 

We wanted to share an important national update discussed at the CYP Board about autism and eating disorders / eating difficulties, as this is an area many families are affected by. 

🔍 Why these matters 

• Autistic children and young people are much more likely to experience eating difficulties or eating disorders than non-autistic peers.  

• Many autistic young people:  

• Wait longer for the right support 

• Have poorer experiences in services 

• Are more likely to need hospital care  

💬 Parents often tell us: “Support only comes once things have reached crisis.” 

🧠 Big shift in thinking (important for families) 

The guidance is clear: 

👉 Support should be based on need – not just diagnosis 
👉 Eating difficulties in autism may look different and need different support 

For example: 

• Food issues may be about sensory needs (texture, smell, colour) 

• Not always about weight or body image  

⏱️ Earlier support (before crisis) 

There is a strong focus on: 

• Spotting eating difficulties earlier 

• Supporting families before it becomes severe 

• Not waiting for a full diagnosis to offer help 

👉 Services are encouraged to treat autism as a “working consideration” and adapt support straight away.  

🏫 Schools & early identification 

• Schools and early years settings should:  

• Recognise eating difficulties early 

• Refer and support sooner 

• A multi-disciplinary approach is expected (health, education, therapists)  

👨‍👩‍👧 Support for families (this is a key change) 

The guidance recognises: 

• Families often feel unsupported and overwhelmed 

• Parent/carer support should be offered as standard 

• Families should be treated as partners in care 

💬 “Families shouldn’t be left to manage this alone.” 

🛠️ More personalised, autism-friendly support 

Services are expected to: 

• Make reasonable adjustments (under Equality Act) 

• Adapt:  

• Communication 

• Environments (noise, lighting, smells) 

• Mealtime support 

• Offer flexible, personalised care plans 

🏥 Reducing hospital admissions 

A key message: 

👉 Hospital should not be the default 

• Inpatient care can be very distressing for autistic young people 

• Focus should be on:  

• Support at home / in the community 

• Preventing crisis situations 

🤝 Better joined-up working 

The guidance highlights the need for: 

• Health, education, social care and VCSE (like PCVH) to work together 

• A single joined-up plan for each child 

• Better coordination across services 

💬 What this means for Herefordshire families 

This is national draft guidance, but it supports what families here have already been saying: 

• Long waits and late support 

• Lack of understanding of autism in services 

• Support too often dependent on diagnosis 

• Families feeling left to cope 

👉 PCVH will continue to: 

• Share your lived experiences 

• Push for earlier, autism-informed support 

• Advocate for better joined up working locally 

💬 Share your experience 

We want to hear from you if your child has: 

• Restricted eating 

• Sensory food difficulties 

• Been on an eating disorder pathway 

• Struggled to access support 

📩 admin@pcvherefordshire.com 
🌐 https://pcvh.co.uk 

Learning Disability week Update 

CYP Board Update: Learning Disability Diagnosis 

What parents need to know (June 2026) 

🔍 Why this was discussed 

There has been growing concern locally about: 

• Lack of clarity on how learning disability is diagnosed 

• Children and young people remaining labelled as Global Developmental Delay (GDD) instead of receiving a confirmed diagnosis where appropriate  

👉 This means some children may not be getting the right recognition or support at the right time. 

🧠 What is a Learning Disability? 

There is agreement across services that a learning disability: 

• Is a health/medical diagnosis 

• Involves:  

• Significant difficulty with thinking and understanding 

• Significant difficulty with daily living skills 

• Starts in childhood (before age 18)  

⚠️ What it is NOT (important for families) 

• ❌ Not the same as a learning difficulty (e.g. dyslexia, ADHD) 

• ❌ Not the same as Global Developmental Delay (GDD)  

• GDD should usually be reviewed and updated as a child grows 

💬 Many families tell us their child stays labelled as GDD for years without review. 

🏥 Current challenges (this is the key issue) 

• ❗ No clear diagnosis pathway exists across the local ICB area 

• ❗ No national standards or guidance for diagnosing learning disability in children 

• ❗ Assessments are inconsistent and not always available 

• ❗ Some children are only described as “probably” having a learning disability 

• ❗ Learning disability is not always considered alongside autism/ADHD pathways  

👉 This leads to a postcode lottery and unclear decision-making. 

❗ Why this matters for families 

This is NOT about giving another label. 

It’s about making sure children: 

• ✅ Have their full needs recognised 

• ✅ Get the right support early 

• ✅ Can access appropriate services and adjustments 

💬 “This is about thriving, not just coping.”  

⚠️ Risks if there is no clear diagnosis 

Without a confirmed learning disability diagnosis, children may: 

• Miss out on early intervention at critical stages 

• Be unable to access specialist support 

• Face barriers to services that require diagnosis 

• Struggle to access reasonable adjustments 

• Experience poorer transition planning into adulthood 

• Contribute to hidden unmet need across the system  

👉 In short: needs may be underestimated or unsupported. 

🔄 What is starting to happen (positive steps) 

• A Herefordshire pilot pathway is being developed 

• Led by Community Paediatrics 

• With input from education and SEND partners 

• Work is underway to: 

• Improve joined-up diagnosis across services 

• Consider approaches beyond just IQ testing 

• Explore better models (e.g. Scotland) 

• Push for national guidance and consistency  

💬 What this means for Herefordshire parents 

This reflects what many families already tell us: 

• Lack of clarity around diagnosis 

• Long delays or no review of GDD 

• Difficulty accessing the right support without a diagnosis 

• Confusion between education and health terminology 

👉 PCVH will continue to: 

• Share parent experiences into this work 

• Push for a clear, fair and joined-up pathway 

• Advocate for needs-led support AND proper recognition 

💬 Share your experience 

We’d really like to hear if: 

• Your child is still labelled as GDD 

• You’ve struggled to get a learning disability diagnosis 

• You’ve been told your child “Probably” has LD but no formal assessment 

• You’ve found support depends on diagnosis 

📩 admin@pcvherefordshire.com 
🌐 https://pcvh.co.uk/ 

Updates 

NEW: Experts at Hand – What Parent Carers Need to Know 

📢 What’s happening? 

The Department for Education (DfE) has published the first guidance for a new programme called Experts at Hand. 
This is part of the wider national SEND reforms. 

🤝 Why this matters for families 

The guidance makes it clear that Parent Carer Forums must be involved in shaping how this support works locally. 

This means your voice – and your experiences as a parent or carer – should help influence: 

• ✅ How support is delivered in mainstream schools 

• ✅ What specialist help is available locally 

• ✅ How services are designed and improved 

• ✅ Decisions about funding and commissioning 

🧩 What is “Experts at Hand”? 

Experts at Hand is about making sure: 

• Specialist SEND support is available earlier 

• More children are supported in mainstream settings 

• Schools can access expert advice when they need it 

💬 Why your voice matters 

Parent Carer Forums (like PCVH) are recognised as key partners in this work. 

💡 This means: 

• Your feedback will help shape local services 

• Your lived experience will inform decisions 

• Co-production (working together as equal partners) is expected 

🗣️ What is happening nationally? 

The National Network of Parent Carer Forums (NNPCF) has welcomed this guidance and highlighted how important it is for: 

• Local areas to involve Parent Carer Forums from the start 

• Parent carers to be part of meaningful discussions 

• Changes to be shaped by real family experience 

👉 Read the NNPCF statement 

📍 What this means for Herefordshire 

Locally, this work will begin to develop over the coming months. 

PCVH will: 

• Represent parent carers in local discussions 

• Share updates and opportunities to get involved 

• Ensure your voices help shape what happens next 

💙 Have your say 

We want to hear from you. 

What would make a difference for your child in school? 

• What support works well? 

• What is missing? 

• What needs to change? 

👉 Get involved through PCVH sessions, surveys, and events. 

📩 Stay connected 

Parent Carer Voice Herefordshire 
🌐 https://pcvh.co.uk/ 
📧 admin@pcvherefordshire.com 

⭐ Parent voice 

“We want support to be there before things reach crisis point – not after.” 
Local parent, Herefordshire 

Mental Health Support in Schools – Update for Parents & Carers (Herefordshire) 

We wanted to share a simple update on how mental health and emotional wellbeing support for children and young people is developing across Herefordshire. 

🌱 What’s happening right now? 

There are 114 schools and settings in Herefordshire. 

• Around 40% of schools currently have access to this support 

• This already reaches nearly 70% of children and young people 

💬 What parents are telling us: 
“Support is really helpful when you can access it — but it’s not available in every school yet.” 

🚀 What’s planned next? 

The service is expanding over the coming years so that: 

✅ Every school will have access by 2029/30 
✅ More areas will be included in each rollout phase (including Hereford and surrounding areas) 
✅ Additional staffing is being added, including a new senior practitioner role 

💬 What this means for families: 
If your child’s school isn’t included yet, it should be coming — but timing will vary depending on location. 

🧠 What support looks like 

• Most children are seen within around 12 weeks 

• Support focuses on things like:  

• Anxiety 

• Low mood 

• Emotional wellbeing 

• Progress is tracked using recognised tools and personal goals set with the child 

💬 In reality: 
Support isn’t just one appointment — it’s designed to track progress and help children build confidence over time. 

🔧 What improvements are being worked on 

Services are currently developing: 

• Better joined up working between services 

• A pilot to understand barriers to attending school 

• More group sessions in schools 

• Online support groups for parents/carers 

• Training to improve cultural awareness and inclusivity 

💬 Parent view: 
Families often tell us that joined-up support and understanding the “whole child” is key — this is a positive step in that direction. 

⚠️ What are the challenges? 

The biggest issue continues to be not enough staff, especially: 

• Educational Mental Health Practitioners (EMHPs) 

Steps are being taken to: 

• Recruit more staff 

• Request additional roles 

• Use existing staff in different ways 

💬 What parents are experiencing: 
“Waiting times can feel long, especially when a child is struggling now.” 

💛 What PCVH will keep doing 

We will continue to: 

• Share parent experiences with decision-makers 

• Highlight gaps in access across schools 

• Push for earlier support and reduced waiting times 

• Make sure parent voices shape how services develop 

📣 Want to share your experience? 

Your voice really matters. 

👉 Visit: https://pcvh.co.uk/ 
👉 Or speak to us at the SEND Information Day 

What is Alternative Provision (AP)? 

Some children and young people may need support outside of a traditional school setting for a period of time. This is called Alternative Provision (AP). 

Herefordshire Council has published a directory of local AP providers that schools can use to explore options. 

⚠️ Important for parent carers to know 

• This is not a recommended list – it’s a directory for schools to consider options 

• Schools must only use AP when other support has been tried first 

• The school remains fully responsible for your child’s safety and education 

✅ Before a placement, schools should check: 

• Is it safe and appropriate? 

• Does it provide good quality education? 

• Can it meet your child’s individual needs? 

• Is it properly registered, where required? 

🧩 Types of support available may include: 

• Small group or 1:1 tuition 

• Mentoring and emotional support 

• Vocational or practical learning 

• Outdoor or activity-based provision 

• Online learning options 

💛 Parent voice 

💬 “We weren’t always included in decisions about alternative provision—clear communication and being part of the process makes a huge difference.” 

🤝 How PCVH can support 

If your child is being considered for Alternative Provision and you’re unsure what it means or what your rights are: 

• We can help you prepare questions for school 

• Support you to understand the process 

• Share other parents’ experiences 

📩 admin@pcvherefordshire.com 
🌐 https://pcvh.co.uk/