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Parent Carer Forum Update Autumn 2025

Hello

Welcome to our Parent Carer Forum ebulletin.  I have pulled information together on opportuniites to get involved and some more general information about what is happening in the SEND World in general – the SEND committee (we are very much part of the discussions for the upcoming white paper – through local, regional and natonal meetings), the Law Commission review that we know lots of families fed into and the new OFSTED inspection updates and what that means for families.  Local updates about the Autism and ADHD Project, PINS, Speech and Language Service, BeeU Frequently Asked Questions, and more...

Our Annual Survey will be out in the next few weeks and we’d encourage everyone to complete this as it feeds so much into the work we do at an operatoinal and strategic level – it gets shared with the Directors, service leads, leader of the council, MPs and Councillors and of course the report is shared on our website.

It's been great to have your involvement and update so far, and please continue – helping us to Make A Difference 😊

Look out for us in the community and at local events – we have a new banner that includes a new ‘mission statement’ developed by our lovely team of Parent Reps:

“Sharing experiences, driving change, building futures – empowering SEND families”

Best Regards

Jayne@podstelford.org / 0777 534 2092

ADHD and Autism Project

"Tell us about Autism/ADHD services and help to shape the future of how they are delivered"

We are hosting this workshop to share your views about all-age ADHD and autism services to help shape improvements for children, young people, adults, and families.   These experiences will feed straight into commissioning of services, and will supplement the work they have already done for engagement of this area (eg. surveys).

Your child/young person may have received a diagnosis, be waiting for an assessment or self-identify as being autistic, having ADHD or AuDHD (Autism and ADHD).

The aim is to build a timely and more lasting support system that goes beyond just medical needs.

It's important to make sure that the new services are based on what individuals, their parent carers have experienced, leading to better care options.

1:1 half hour sessions: 24th October 9.30-4.30pm

https://www.ticketsource.co.uk/Parents-Opening-Doors-PODS/e-ryazrx

PINS PROJECT 2025/26

(Partnership for Neurodiversity in Schools)

We are working with the following schools over this next year.  We are holding parent carer sessions in schools (x3) and there is a series of training offers and workshops that schools are also accessing.  If you are a parent carer at any of these schools pleased keep an eye out on ebulletins, socials, and school dojo’s etc for information on sessions you can attend:

ELSEC UPDATE

Sharing from ELSEC...

"Article for PODS Newsletter – September 2025

ELSEC (Early Language Support for Every Child)

The Early Language Support for Every Child (ELSEC) project enters it’s second year from September 2025 and continues to support a large number of 4 – 7 year olds in the local area.

The ELSEC team is made up of people from both health and education and they work with children, their parents and professionals to improve language and communication outcomes for children, with early intervention being key.

We know that speech, language and communication skills are important to help children access the wider curriculum, make friends and manage feelings. The ELSEC team are supporting staff in schools and parents to develop these skills to help all children in their care. In the last academic year the ELSEC team worked with 850 children in local schools and nurseries, to ensure that all those who needed support received it.

Talk Boost is the main intervention programme used in schools as all schools have been offered free training and given free resources to run it over the last 4 years. ELSEC also uses Talk Boost as the main intervention programme with all children in Year 1, Reception and the pre-school year, in ELSEC schools. Last year one third of children in ELSEC settings started the year with age appropriate communication and language skills and after support from the ELSEC team three quarters of children ended the year with age appropriate skills.

For a full list of settings involved, resources for supporting speech, language and communication and further information on the ELSEC project please visit the Telford and Wrekin SEND Local Offer page:

SEND & AP Change Programme - SEND - Local offer"

NHS Shropshire, Telford and Wrekin Seeks Views on Changes to Prescription Ordering

PRESS RELEASE: Patients, carers, and local residents are being invited by health leaders at NHS Shropshire, Telford and Wrekin (NHS STW) to share their views on changes to how repeat prescriptions are ordered across the county.

An engagement exercise has been launched today (Monday 29 September 2025) following a recent review of the Prescription Ordering Direct (POD) service - a phone and email-based system introduced in 2016/17 to help reduce medicines waste.

While currently used by around 70% of local GP practices, the review found that the service now duplicates functionality already available through GP practices and the NHS App. Although delivered by dedicated and hardworking staff, the service has faced ongoing access challenges and rising costs and is no longer considered the best use of NHS resources - costing the local health and care system over £1 million each year.

As a result, NHS STW is now planning to phase out the POD service by the end of November 2025 (approximately). Repeat prescriptions will instead be ordered through the NHS App or directly from GP practices, with additional support available for patients who are not digitally enabled.

The engagement exercise includes a public survey and accessible formats, such as Easy Read versions and paper copies, distributed via GP practices, community pharmacies and voluntary sector partners. To share your views and help shape the transition, please complete the survey here. This should only take five minutes of your time and is open until Sunday 9 November 2025.

Further information, including FAQs and support resources, is available here. This explains why the change is happening, what patients’ options are, and where to get help and support.

Minesh Parbat, Chief Pharmaceutical Officer at NHS STW, said: “We know that this will be a change for many people, and we are committed to listening carefully and supporting everyone through the transition.

“We want to hear from patients, carers and the wider community about what support they need and how we can make the change as smooth and inclusive as possible. Feedback from the public will help shape the next steps and ensure that no one is left behind during the change.

“We understand that not everyone is confident using digital tools like the NHS App, and that’s okay. You won’t have to manage this change on your own - support will be available.

“GP practices will be offering help, whether through practice staff, Patient Participation Group (PPG) members, or specially trained NHS App Champions. There will also be information on local digital skills sessions to help you get started. And if using the App isn’t right for you, your practice can talk you through alternative ways to order your repeat prescriptions.

“Our priority is making sure everyone can continue to get the medicines they need, in a way that works for them.”

For further information on the changes to prescription ordering, please visit the NHS Shropshire, Telford and Wrekin website.

Speech and Language Service Update

Law Commission Reporting Update

Summary for Parent Carers: Law Commission Report on Disabled Children’s Social Care (via Co-Pilot)

💡 Why This Matters

This report proposes major reforms to the law governing social care for disabled children in England. It aims to make the system clearer, fairer, and easier to navigate—for families, carers, and professionals alike.

🚨 Key Problems Identified

• Confusing and outdated laws: The current legal framework is described as “baffling” and exhausting for families to understand and use.
• Unfair treatment across regions: Local authorities can set their own criteria, meaning children with similar needs may receive different support depending on where they live.
• Stigmatisation and lack of trust: Families report feeling judged or misunderstood when seeking help.
• Limited rights and participation: Disabled children and their carers often struggle to have their voices heard in decisions about care.

✅ What the Law Commission Recommends

• A single, simplified legal framework: All laws on disabled children’s social care should sit within the Children Act 1989.
• Clear statutory guidance: One comprehensive guide for families and professionals outlining rights and responsibilities.
• Updated definition of disability: To reflect modern understanding and remove outdated language.
• National eligibility criteria: So children are treated fairly no matter where they live.
• Independent advocacy: For children and carers who need help navigating assessments and decisions.
• Children’s participation rights: Ensuring disabled children are involved in decisions about their care.
• Early transition planning: Support for moving into adulthood should begin by age 14.
• Clearer boundaries between health and social care: To reduce confusion and delays.
• Better dispute resolution: A fair and accessible system for resolving disagreements with local authorities.

📅 What Happens Next

The report was published on 16 September 2025. It’s now up to the Government to decide whether to implement these reforms.

NEW OFSTED FRAMEWORK

What Parent Carers Need to Know About Ofsted’s New Inspection Framework (Co-Pilot)

Purpose of Inspections

• Ofsted inspections aim to raise standards and improve lives by focusing on learners’ education, safety, and well-being.
• They offer independent evaluations to help schools and other providers improve and inform parents about quality.

Key Principles

• Inspections are evidence-led and consistent across early years, schools, and further education.
• Inspectors assess how well providers help and protect learners, with safeguarding now graded as either “met” or “not met.”
• Equality and inclusion are central—inspectors check compliance with the Equality Act 2010 and Human Rights Act 1998.

What’s New from November 2025

• No more overall effectiveness grade. Instead, each area of provision is graded separately.
• New 5-point scale:
  • 🟣 Exceptional
  • 🔵 Strong Standard
  • 🟢 Expected Standard
  • 🟠 Needs Attention
  • 🔴 Urgent Improvement

Areas Inspected in Schools

• Safeguarding
• Inclusion
• Curriculum and Teaching
• Achievement
• Attendance and Behaviour
• Personal Development and Well-being
• Leadership and Governance
• Early Years and Sixth Form (where applicable)

Why It Matters to You

• Inspection reports help you make informed decisions about your child’s education.
• They highlight strengths and areas needing improvement, ensuring transparency and accountability.
• Ofsted prioritises children who face barriers to learning, aiming to support every learner’s success.

How will OFSTED engage with parent carers?

Ofsted will engage with parent carers in several meaningful ways under the updated Education Inspection Framework (EIF) from November 2025:

👨‍👩‍👧 How Ofsted Engages with Parent Carers

1. Clear Communication Before Inspections

Schools are legally required to notify all parents when an inspection is scheduled.
Parents receive a letter with details on how to share their views, including a link to Ofsted’s Parent View questionnaire.

2. Parent View Questionnaire

• This online tool allows parent carers to give feedback on their child’s school during inspections.
• Responses help inspectors understand the school’s strengths and areas for improvement from a parent’s perspective.

3. Inspectors Consider Parental Feedback

• Inspectors are required to take parent views into account during full inspections.
• Feedback influences judgments on leadership, safeguarding, and overall school culture.

4. Judging School Engagement with Parents

• Inspectors assess how well school leaders engage with parents and carers.
• Schools are expected to communicate transparently, respond to concerns, and involve parents in ways that support pupils’ education.

5. Safeguarding and Inclusion

• Inspectors look at whether leaders listen to parent concerns about safety and well-being.
• Effective schools show they act promptly and proportionately when issues are raised.

This approach ensures that parent carers are not just informed but actively involved in shaping the educational environment.

UK Parliament Education committee report: Solving the SEND Crisis

Solving the SEND crisis: report calls for culture shift and funding to make mainstream education genuinely inclusive - Committees - UK Parliament

A parent carer–focused summary of the Education Committee’s September 2025 report, Solving the SEND Crisis (via Co-Pilot)

💡 Key Takeaways for Parent Carers of SEND Children

🧩 Systemic Challenges

• The SEND system is described as fragmented, adversarial, and under-resourced, leaving families exhausted and unsupported.
• Parents often face delays, inconsistent provision, and lack of transparency, eroding trust in the system.
• The rising number of EHCPs (from 354,000 in 2019 to nearly 639,000 in 2025) reflects growing need—but also growing pressure on services.

🏫 Inclusion in Mainstream Schools

• The report calls for a culture shift: mainstream schools must become genuinely inclusive, not treat SEND as an “add-on”.
• MPs recommend national standards for SEND provision, so all schools offer a baseline level of support—even without a formal diagnosis.
• Every school should have SEND-qualified leadership, and all headteachers should hold a SEND-specific qualification within four years.

📜 Protecting Legal Entitlements

• The Committee strongly opposes any reduction in EHCP rights or raising thresholds for access. These entitlements must remain intact.
• Accountability must improve across the system—not just through EHCPs, but in everyday school practices.

🗣️ Parent Carer Voice

• Nearly 900 submissions were received, including many from parent carers. However, these were summarised via AI-assisted review, raising concerns about how deeply they were considered.
• The report acknowledges that parents feel unheard and mistrustful, and calls for better engagement and transparency.

🧠 Health & Social Care Gaps

• While the report is strong on education and health, it’s light on social care, which many families rely on.
• Speech and language therapy is highlighted as a critical area needing investment, with calls for dedicated therapists in every Best Start Family Hub.

🛠️ What This Means for You

• If you're a parent carer, this report validates your struggles—and pushes for system-wide reform that could ease the burden.
• It urges the government to listen to families, protect legal rights, and build a system that supports children before crisis point.
• The next step is government response in the upcoming Schools White Paper. Parent carers and advocacy groups will need to stay vocal and vigilant to ensure these recommendations are implemented.

Full Report Here

Also Read a response from Natonal Charity Contact:  Contact’s analysis of the report.

“Contact welcomes the report’s recommendations and its clarity that the SEND reforms must not be based on any withdrawal of statutory entitlements for children and young people with SEND.”

BeeU Update – ND Service

We have gathered feedback from families about what is important to know about the service and pulled together these “Frequently asked questions”

https://www.mpft.nhs.uk/application/files/4217/5284/1521/BeeU_NeuroDevelopmental_Service_FAQs_v2.pdf

BeeU website has also been updated:

BeeU provides emotional wellbeing and mental health services for children and young people (ages 0 to 25) in Shropshire, Telford and Wrekin.

The service provides:

• Emotional wellbeing and mental health services for children and young people (0-25)
• Neurodevelopmental assessments for children – autism for 5–18-year-olds, and Attention Deficit Hyperactivity Disorder (ADHD) for 6–18-year-olds
• Community Eating Disorder Services for 0–18-year-olds.

https://www.mpft.nhs.uk/services/camhs/beeu

Easy read information for patients at Hospital

We are sharing some information here about easy read guides.  As part of our our involvement with hospital programmes we are currently reviewing information that will be displayed in the A&E departments. 

https://www.sath.nhs.uk/patients-visitors/easy-read-patient-information/

SENSITIVE TOPIC… Trigger Warning Suicide

Over 40% of parent carers have thought about suicide. Action is needed to support disabled children and their families.

Extract below shared from University of Birmingham

A quick email to let you know that a new short film on parent carers was recently launched. Made by award-winning filmmaker Bhulla Beghal, it is inspired by our research on suicide risk in parent carers. It is beautiful and unflinching, and calls on the government to fix the systems that shape the lives of disabled children and their families. You can watch it here: More Than A Parent  (Please note that it may be distressing for those of you who are parent carers – please only watch it if you feel able and reach out to the Samaritans on 116 123 if you need support)

We launched the film at last week’s Liberal Democrats Party Conference, where – together with Katy Styles from the We Care Campaign, Andy McGowan from Carers Trust, and a parent carer – I hosted an event called ‘Beyond Burnout’. It was standing room only, with not only representatives from the Lib Dems, but also a wide range of advocay organisations, think tanks, and other professionals. You could hear a pin drop when the film screened and this was followed by a rigorous discussion about what carers need from their political representatives. Alison Bennet, MP for Mid Sussex and Lib Dems Spokesperson for Care and Carers, was the respondent and provided an overview of the Lib Dems perspective on carers, including plans to advocate for a National Carers Strategy. You can read more about our event in this article from The Big Issue Throw The Damn Lifeboat

Alongside the film, the University of Birmingham also launched a campaign website – More than a parent - University of Birmingham – where there is an option for people to send a letter to their MP, highlighting the research and calling for change.

For those of you interested in our research on homicide and the broader carers population, I also wrote an article for The House magazine last week. The online version is available for the public here (When Caring Becomes Too Much, Death Can Seem Like The Only Way Out), while the print version goes to every MP and Lord. Again, go gently with this one if you are a carer and reach out to Samaritans for help if you need it.

 A huge thank-you to everyone who supported or participated in the parent carer research and an equally huge thank-you to those of you who are supporting & advocating for unpaid carers in your work everyday. We are starting to see real traction on the issue of suicide and homicide, with local authorities starting to include carers in their suicide prevention strategies, multi-agency teams starting to develop training and resources for frontline staff, and policy makers starting to engage with our calls for improved support.

We will be continuing to share the research with policy makers & professionals over the coming months (and years!) and I will update this list at regular intervals, but if you have any questions or concerns in the meantime, please give me a shout. And all the links I’ve shared are publicly available, so please feel free to share them across your networks.

Please note the above material is subject to copyright, please contact PODS before sharing any of the information in this PODS Ebulletin.

Thank you for reading our latest Ebulletin, please stay safe & well. 

Kerrie Seagrave, Member Support Co-ordinator

on behalf of PODS Parent Carer Forum.

We hope you enjoyed reading our latest e-bulletin - we hope you continue to find it useful. If you have any suggestions to make it better feel free to let me know.