Sendac - Cumbria Parent Carer Forum

02/03/2026

🔴 SEASCALE - We have had 10 cancellations for our Seascale session tomorrow, so we now have 10 spaces available!

Sign up here: https://www.surveymonkey.com/r/9SSPLXL

26/02/2026

🔵 FURTHER UPDATE: AUTISM & ADHD ASSESSMENT PATHWAYS – LANCASHIRE & SOUTH CUMBRIA ICB 🔵

We are sharing a further update following new information received today.

📄 Screenshots of the full official statement are attached below.

📌 What is happening now:

- The Trust will continue to accept referrals for Autism & ADHD assessments until the end of March 2026

- This is a temporary extension while longer term arrangements are agreed

- There is no change to the mental health pathway for children/ young people who have a mental health need

👨‍👩‍👧 What this means for families right now:

✔️ Referrals can continue to be made during this period
✔️ There is short-term stability while longer-term plans are agreed

❗ This does not resolve the existing long waiting times families have told us about

❗ Full detail about the future model is still not yet available

We know waiting times remain the biggest concern for families and we are continuing to raise this at every meeting.

📌 Right to Choose (RTC) providers

We are aware some RTC providers are saying they are pausing referrals. We have raised this with the ICB.

They have been very open and are currently unclear why this has happened, and are urgently looking into it.

We will update as soon as we have confirmed information.

25/02/2026

SENDIASS offer FREE impartial information, advice and support on SEND including SEND laws and processes. Find out more below ⬇️

Cumberland SEND Information, Advice and Support Service website

22/02/2026

20/02/2026

‘86% of children with additional needs experience sleep problems. Yet families are still being offered approaches that don’t fit neurodivergent children’ ⬇️

Did you know that up to 86% of children with additional needs experience sleep problems?
Sleep disruption isn’t rare — it’s the norm.
Yet families are still being offered approaches that don’t fit neurodivergent children. Learn evidence-based sleep support that works with families, not against them.
https://buff.ly/vfxJTHC

18/02/2026

Welcome to our new and hello from SENDAC, your Parent Carer Forum for Cumberland (Cumbria)💙

Over the last few weeks many new parent carers have joined our page, so we wanted to take a moment to introduce who we are, what we do and let you know about you entitlement to become a member of ours!

👋 Who we are

SENDAC is the recognised Parent Carer Forum for Cumberland.

We are a volunteer led group and everyone running the forum is a parent carer to a child or young person with additional needs/ disabilities who lives in the Cumberland area.

We are not separate from you - we are you.

Most of us joined because we have been through the same systems, the same processes and faced the same challenges that many of you have/are experiencing. We know how worrying, confusing and sometimes heartbreaking those journeys can feel when you’re doing it alone.

We came together because we wanted things to be better, we wanted to make change so other families don’t have to fight the same battles we’ve been through.

✨ Why we exist

Parent Carer Forums don’t provide direct services, but we try and make sure the services that do exist work for your children and young people.

We:

- Bring your experiences and concerns directly to decision makers
- Challenge when things aren’t working
- Push for transparency and accountability
- Help shape new and developing services
- Make sure families are heard at every level.

Everything we do is driven by the lived experiences of parent carers in Cumberland. Your voices give us the evidence, the direction and the power to create change.

🤝 An equal strategic partner

Parent Carer Forums are Completely independent from the Local Authority and the NHS, being in the forum allow parents to bring change from the inside- we are recognised as an equal partner due to the children’s and families act 2014 and we are recognised in the SEND Code of practise 2015.

There is a formal agreement (MOU) between SENDAC, Cumberland Council and Contact which ensures we are invited to:

✔ Steering groups
✔ Workstreams
✔ Interview panels
✔ Co-production meetings
✔️ strategic decision making meetings.

So that Cumberland parent carer voices are always at the table.

We will:

✅ Challenge when things are not good enough
✅ Hold services to account
✅ Push for real, meaningful improvements

Because this is your forum and we are your voice.

Whether you are here for information, reassurance, to share your experiences or to help shape change, you are welcome.

💙 Become a member - the more members we have, the more powerful our voice and the more influence we have to make change! it’s completely free and there’s no commitment:

⭐ FREE Max Card (national SEND discount card)
⭐ FREE SEND training for parent carers
⭐ Regular updates on local SEND services
⭐ Opportunities to share your views and influence change

🔗 Become a member here:

https://www.surveymonkey.com/r/QM82XS6

Or scan the QR code below

If you’re not in Cumberland, you can find your local statutory Parent Carer Forum via the NNPCF website 🥰

17/02/2026

🔵 UPDATE: Autism & ADHD ASSESSMENTS – THE PAUSE HAS BEEN ‘UNPAUSED’ 🔵

As of today, there will no longer be any immediate changes to the autism and ADHD diagnosis pathways.

After our meeting with the ICB today, we can now share a clear and factual update.

✅ What is happening right now

The previous pause to the ADHD and autism pathways has been reversed.

This means:

• All Autism and ADHD Referrals are being accepted again
• Assessments are continuing as they were before the original announcement
• There is now no immediate change for children and young people.

This will remain in place until the end of February.

This position has been reached because the issue was escalated to the highest level across NHS leadership, including meetings between ourselves, other Parent Carer Forums and the ICB, and our public posts have generated a lot of media and political attention.

🔄 What happens by the end of February:

During this time, the ICB is working on putting a new plan in place for the ADHD and autism assessment process. The current model is not fit for purpose. They are looking at funding options, and which providers (organisations) can carry out the assessments, including continuing with LSCFT.

By the end of February, there are two possible outcomes:

A. Lancashire and South Cumbria NHS Foundation Trust will continue to deliver assessments as normal under a new agreement with the ICB.

Or

B. There will be another provider(s) carrying out the assessments instead, with children moving under their service from LSCFT. This will be commissioned and fully funded by the NHS.

We have been assured that:

• This will be a seamless transition, no matter which route happens
• Families will not be asked to do anything
• Children’s place in the process will not be affected
• In practice, this means your child will continue their pathway ‘journey’ and assessment with another organisation.

🏛️ Our next steps

We have formally requested a meeting with the Chief Executive of Lancashire and South Cumbria NHS Foundation Trust and the Director of Nursing in the ICB to take place before the end of February so we can be part of those next step discussions.

This is to ensure families’ experiences and concerns are heard and communication to families is clear and appropriate going forward.

We will update you following that meeting.

🗣️ About the Trust’s latest public statement

We are aware that an updated statement has been published on the Trust website detailing the ‘reversal of the pause’.

We received this information by letter this morning and, as with the previous communication, we are extremely disappointed with how this has been worded to families. We know this will have caused further confusion at an already very stressful time. We have raised this to the most senior people within the NHS.

💙 From us as parent carers

Everyone running Parent Carer Forums is a volunteer who is also raising children and young people with additional needs and disabilities.

A lot of us have been through this very pathway, and the very systems ourselves. We completely understand the worry, frustration and uncertainty this situation has caused.

Throughout half term, whilst caring for our own children, we have been attending urgent meetings, challenging decisions, pushing for clear answers and making sure the voices of families are heard at the highest level, and we will continue to do so.

You may sometimes notice a short delay between information appearing elsewhere online (the media and other organisations) and us posting.
This is because we take time to cross - check the details in meetings and in writing so that what we share with you is factual, accurate and reflects the full picture. We also must do this around meeting our own children’s needs during the half-term.

That can occasionally mean our updates follow a little later, but it ensures families receive confirmed and reliable information rather than speculation.

Because of the speed at which this situation has been moving, other organisations or the media may sometimes publish before we do and may not have the full or most up-to-date detail.

Please continue checking updates on our page to ensure you get the correct information. Our next planned meeting with the ICB is Tuesday 24th February, unless there are any other updates before then.

The ICB are still planning to complete an FAQ sheet for parent carers and families, answering any questions about what is happening with pathways in Lancashire and South Cumbria. If you have any questions, please either comment or email them to us and we will pass them on to the ICB.

Thank you for your patience and your support while this was escalated and challenged. 💙

14/02/2026

🔵 UPDATE : AUTISM AND ADHD ASSESSMENTS- INFORMATION FROM OUR MEETING WITH THE ICB – CHANGES THAT HAVE NOW HAPPENED 🔵


We know how worrying and unsettling the last few days have been following the announcement about Autism and ADHD pathways being paused in some areas covered by, Lancashire and South Cumbria Foundation Trust (LSCFT). Because of this we are sharing what we now understand following our meeting with the ICB and the changes we have been assured will now take place.


📄 The original Trust Communication

The original communication from Lancashire and South Cumbria Foundation Trust was:

✋The listed pathways have been stopped completely

✋Those on the waiting lists will not be seen

✋Referrals would be paused. There is no alternative in place.

This triggered an urgent escalation, so things are changing quickly and being managed at the highest level across NHS leadership. 🚨⤴️

This escalation resulted in, the ICB and Lancashire and South Cumbria Foundation Trust being in urgent crisis level meetings this week. A crisis meeting was also held yesterday between the ICB and Parent Carer Forums from across the area, including SENDAC PCF, LPCF and Blackburn with Darwen PCF.

Below is the most accurate information we have right now ⬇️

As things are changing quickly, this may prompt more questions, but this is all the information we have right now...

❓Who made the decision to make these changes to the assessment service?

➡️ The decision was made by Lancashire and South Cumbria NHS Foundation Trust (LSCFT). This was not an ICB decision.

• Trusts = provide the service.
• ICB = decides who provides the service.

➡️ This was due to capacity pressures and risk management within the trust

➡️ This decision has triggered crisis level meetings between LSCFT and ICB Chief Executives.


🔄 📌 CHANGES that have been made due to the crisis level meetings (what we know so far):

🧠 Mental Health Support

• Children and young people with mental health difficulties or other comorbidities will continue to be supported by CAMHS / ELCAS.

📅 If Your Child Already Has an Appointment

• If your child has been given a date for their first assessment appointment, that assessment will now still go ahead with LSCFT - There are no changes for you or your child.

• If your child has already had their first appointment and is part way through the process, they will now continue their assessment with LSCFT- There are no changes for you or your child.

🕒 If Your Child Is on the Waiting List

• Children already accepted onto the waiting list following their first initial appointment will remain on the list -

• HOWEVER, they will be transferred to a new provider ONCE this has been commissioned by the ICB – they will not continue with LSCFT.

• Waiting times overall are still unknown, but prioritisation will follow how long each child has already waited.

• We have not been given confirmed timescales for the commissioning of a new provider. We did push for estimates and were told this is expected to be weeks rather than months.

• No child will be completely discharged and be made to start again.

🔀 New referrals

• New referrals are being paused. We have not been given any timeframe on this.


⚖️ Right to Choose

• Right to Choose will not be affected. This is your legal right under NHS patient choice law.


🔄 Is this part of the new ND pathway?

•No, the long term neurodevelopmental pathway redesign is still ongoing.
•What is happening now is an emergency response to current waiting list pressures.


🏗️ What the ICB are doing now:

• ICB and LSCFT Chief Executives are meeting urgently to establish next steps. We will be informed of these next steps as soon as the decisions are made.

• They have committed that no child will be removed from a waiting list. All children will transfer to a newly commissioned provider once this is in place.

• They are urgently exploring investment options, shifting NHS resources and commissioning alternative providers to ensure children are placed with a new provider as soon as possible.


🛡️ Assurances that the ICB are giving parent carers right now:

🧭 As your Parent Carer Forum, we will hold them to account for the following assurances:

• No child is being dropped from the waiting list. Waiting lists will be transferred.

• The time your child has already waited will be protected, although we do not yet know how this may affect overall waiting times.

• Assessments already booked in will still go ahead

🟦 PCF Position

• The original communication from Lancashire and South Cumbria NHS Foundation Trust about the changes to ADHD and ASD assessment pathways was unclear for parent carers and added to worries and concerns about what would happen to children and young people who are already waiting or seeking referral.

• Behind every waiting list number is a child who needs support and a family who has already been waiting far too long. That is what we are keeping at the centre of every conversation.

• No child or family should be left without access to the care or support they need, including assessments. The loss of a clear assessment route must be resolved urgently.


What we are doing as your Parent Carer Forum:

☑️ Parent Carer Forums are now directly involved in crisis level meetings and will continue pushing for clarity, accountability and timely solutions.

☑️ We have formally raised our concerns with the ICB highlighting the significant impact these changes have on families.

☑️ We formally highlighted the poor communication with families and our significant concerns relating to replacing of diagnoses with a ‘needs-lead approach’ - this will not take place.

☑️ We have asked them to arrange a meeting with ADHD North West to discuss support for families during this time – they have assured us one will take place.

☑️ We have told the ICB to check their website links to ensure families can still access signposted support, some of which we found were unusable.


Questions we are pushing for clear answers to: ❓

• When will a full mitigation plan be in place?
• When will families receive direct communication?
• What will the alternative provision look like?
• Who will be carrying out future assessments?
• How will individual circumstances be handled?
• What is the impact assessment of this decsion?
• Will this be a like for like pathway?


️🗣🛡️ Assurances we are pushing for:

- Protection of the time children have already waited
- Clear and direct communication to families
- Assessments to restart as quickly as possible
- Transparency around next steps and decision making


📅 Next steps:

We will be meeting again with the ICB on Tuesday (during half term) for further updates.
Please bear with us as we gather verified information before sharing it.

📢 We will update you with facts as we receive them. We won’t be vague or silent.

📨 We are also creating an FAQ list, so please put any further questions you have on this post.

We understand how distressing and unacceptable this situation is.

We are pushing for answers, transparency and urgent action, and we will continue to update you as soon as more information is confirmed.

13/02/2026

FIRST NEW UPDATE FOLLOWING MEETING WITH ICB CAN BE FOUND HERE - https://www.facebook.com/share/p/18MDS8LpaL/?mibextid=wwXIfr
————————————————————————-

IMPORTANT UPDATE – AUTISM AND ADHD ASSESSMENT PATHWAYS 🚫 (Cumberland
Families - This ONLY affects those covered by the Lancashire and South Cumbria ICB - please see map in comments)

We have today received formal notification that Lancashire and South Cumbria NHS foundation trust (LSCFT) have announced from 2nd February 2026 they will be stopping all new referrals for Autism and ADHD assessments for children and young people in affected areas (detailed below).

They have also stated that Children and young people who are already on those waiting lists will NOT currently be seen for assessment.

This is not a routine update. It is a major and unexpected change and we know it will rightly so be significantly worrying for many families. As a parent carer forum, we share those concerns.

We want to be absolutely clear:

- The strength of feeling from families is justified
- The impact of this decision is significant
- Your concerns are valid and necessary

If your child is waiting for assessment, this news will matter deeply to you. It matters to us too, not only in our strategic role, but as parent carers ourselves.

Here is what we currently understand:

🛑 No new referrals are being accepted in the following areas & age ranges:

ADHD:

- Blackburn with Darwen and East Lancashire area between the ages of 11-18.

- Central and West Lancashire, Fylde Coast and Morecambe Bay and South Cumbria between the ages of 5-18.

Autism:

• Lancaster between the ages of 5-17.


⭕️ Children and young people already on waiting lists will not be seen at this time.

⭕️ The NHS says this pause is due to unprecedented demand and forms part of a wider three-year plan to redesign neurodevelopmental pathways.

⭕️ Families currently on waiting lists should receive a letter explaining next steps.


Our position as your Parent Carer Forum ⬇️

What we have done immediately after finding this information out:

✅ We have written a formal email highlighting our serious concerns and profound disappointment to the ICB directly.

✅ We have highlighted that this decision fundamentally changes access to recognition, support and entitlement for a generation of neurodivergent children and young people and that this is not okay.


families have told us, diagnosis is not simply a ‘label’ it is:

- Access to external and national sources of support and funding that are diagnosis specific.

- Critical supporting evidence when navigating systems such as DLA, PIP, Blue Badge and family fund applications, which, while technically needs led, are unfortunately widely recognised as significantly more difficult to access without a formal diagnosis

- The route into national diagnosis specific support networks and communities

- fundamental to a child or young person’s ability to understand their identity, their needs and to develop self-advocacy and a sense of belonging within those communities.

- Recognition of their needs when these children move onto higher education and employment.

- The validation that so many families, children and young people need.

This list is far from exhaustive.

The removal or pausing of the access without a fully established and clear alternative pathway will have a significant impact and far-reaching consequences including:

- Increased levels of family and mental health crisis for both children and parent carers

- Escalation in the demand for already stretched services such as CAMHS, paediatrics, education, social care and crisis prevention.

- Creates a two-tier system approach in relation to private diagnosis vs none. Resulting in a disproportionate impact on; low-income families; rural communities; minoritised groups; looked after CIN / CP children. This could result in widening the already existing health inequalities and creating a system in which only families with financial means can access timely assessment.

- A cohort of children and young people whose needs remain unidentified and unmet for a prolonged period.

- Increased safeguarding risk as families reach crisis without access to appropriate pathways.

- Delayed identification and intervention for our children and young people in the area.

This decision will create distress, worry and uncertainty for families in relation to what this means for their children's future.

✅ We are currently carrying out urgent system – wide fact finding.

In order to provide meaningful, accurate and accountable information we are having an urgent meeting with the ICB, we will keep you updated. we have asked for full transparency from the NHS and partner organisations and we hope to have this information available soon.

As your forum, our role is not to minimise your response - it is to represent it.

We will continue to challenge where challenge is needed and will share further information as soon as we receive clear and accountable answers.


If you need support during this time, you may find the following services helpful:

SENDIASS can offer independent information, advice and support around SEND.

https://sendiass.cumberland.gov.uk/cumberland-send-information-advice-and-support-service-send-iass

You can find information out and updates on the ICB website: https://www.lancashireandsouthcumbria.icb.nhs.uk/our-work/special-educational-needs-and-disabilities-send/neurodevelopmental-pathway/nd-pathway-update-12-february-2026

We know today’s news will leave many families feeling uncertain and upset.

We hear you. We see you. We will continue to stand alongside you and advocate for your children and your lived experiences.

30/01/2026

SEND support in Cumbria - explained 💬

We’re aware that there’s been some understandable confusion recently about SEND services across Cumbria, Particularly around Parent carer forums and SENDIASS.

Parent carer forums and SENDIAS services are two very different services.

They work closely with each other but are separate organisations with different roles.
🦸🏽‍♀️🦹🏼‍♀️

In 2023, Cumbria became two separate local authority areas:

- Cumberland (Carlisle, Allerdale and Copeland) 🟢

- Westmorland & Furness (Eden, South Lakeland, Barrow) 🔵

Because of this, SENDIASS and Parent Carer Forums are now organised by where you live.📍

Both are independent from the local authority, and are standalone organisations, but they are organised by where services are delivered to align with the support and priorities needed in that area. 🫱🏼‍🫲🏻

We’ve shared the images below to help clearly explain:

- The difference between SENDIASS and Parent Carer Forums
- Which services support which areas
- Where to go if you’re unsure

The SEND system can feel complicated, particularly during periods of change, so if you’re feeling unsure, you’re definitely not alone.

🟢 👉 If you live in Cumberland and want to join your parent carer forum (SENDAC is your parent carer forum) you can become a member for free and receive free SEND training, a free max card, and help influence change to services you and your children access.

Become a member here- https://www.surveymonkey.com/r/QM82XS6

🔵 👉 if you live in Westmorland and Furness and want to find out more about the parent carer forum development in your area please call 07808 774233 or email laura.burling@contact.org.uk

👉 If you need individual advice or support on your rights and about SEND processes, your local SENDIASS is always the best place to start:

🟢 Cumberland SENDIASS - https://sendiass.cumberland.gov.uk/cumberland-send-information-advice-and-support-service-send-iass

🔵 Westmorland and Furness SENDIASS - https://sendiass.westmorlandandfurness.gov.uk/westmorland-and-furness-send-ias-service

👉📄 for information about why SENDAC no longer cover Westmorland and Furness please see the joint public statement here: https://www.westmorlandandfurness.gov.uk/family-help-news/2025/changes-parent-carer-representation-sendac-contact

We hope this helps bring a bit of clarity 💙

Cumberland Sendias ServiceWestmorland and Furness Sendiass

27/01/2026

26/01/2026

Our next meeting in West Cumbria

Open to anyone with questions regarding ARFID or the crossover with ARFID and autism.

Please come along, it’s free of charge, we’re qualified and we’re very friendly 😀

See you soon