Today, 12 May 2026, LOUD wrote to the Secretary of State for Health and Social Care, Wes Streeting MP, to raise urgent concern about the continued inaction to confront the loss of the RNLD skill set from the workforce in the South East of England.

LOUD is an Expert by Experience group at Canterbury Christ Church University, made up of people with learning disabilities who work alongside health professionals and academics to improve education and research. Many of you in this community will recognise the issue immediately. No universities situated in our region are currently training new learning disability nurses. There is no workforce commissioning in place to rebuild the pipeline. The consequences are already being felt.

LeDeR data tells part of the story — women with a learning disability still dying 23 years earlier than the general population, with around half of all deaths deemed avoidable. But our letter puts member voices at the centre:-

• People being refused access to a learning disability nurse during hospital admissions.
• People falling between services with no clinical ownership.
• People unable to raise complaints through inaccessible routes. 

Our three asks of the Secretary of State are a workforce review focused on the South East, a dedicated workforce strategy with Kent and Medway as a named priority, and reinstatement of the expectation that every NHS hospital and GP surgery has access to a qualified learning disability nurse — not a social prescriber.

The letter is copied to all 18 Kent and Medway MPs. Both a full letter and an Easy Read version can be found below.

We have asked for a response ahead of Learning Disability Week, 15–21 June. We will share any reply we receive.

Daniel Marsden, Senior Lecturer, Canterbury Christ Church University Vanessa Cowley, Co-Chair, LOUD

Health Secretary Open Letter Final LOUD Easy to Read Letter

Update from the co-chairs of the Timms Review outlining the next stages of the review and opportunities for disabled people, organisations and others to take part. The ‘Call for Evidence’ is open to responses until midnight on 28 May, and is available in a number of accessible formats. Please check out – Timms Review of Personal Independence Payment: call for evidence – GOV.UK if this is important to you, a family member or someone you support.

A Pilot Community of Practice is being arranged by Ruth Germaine (Knowledge Mobilisation Fellow). This is being set up for anyone across Kent and Medway who directly support or run services for people with learning disabilities and/or autistic people. The Pilot Community of Practice will be co-led by a small group including experts by experience. 

The aims of the pilot:

• Understand what matters to people with learning disabilities and autistic people
• Learn together to build shared understanding and stronger relationships
• Improve everyday practice by listening to voices that are often unheard or misunderstood.

Sessions are online, the first being Wednesday 6 May 12-1.30pm – please liaise with r.germaine@nhs.net for more information

(PS – This is not connected to the Kent, Surrey & Sussex Learning Disability Community of Practice)

KM LDA CoP flyer

On 17 February 2026, more than thirty-five learning disability nursing professionals from across Kent and Medway gathered for a day of honest, structured conversation about who they are, what their work does, and what needs to change. Over 500 combined years of experience were in the room.

The result is We Are Still Here. We Are Still Vital. — a new report that is ready to read and share.

What it found

Participants were clear. LD nurses see the whole person, identify what others miss, prevent diagnostic overshadowing, and change how entire teams behave. When asked what would be lost without Learning Disability nursing, answers included over-medication, people lost without a voice, earlier deaths, and — from one experienced practitioner — simply: Catastrophic.

Three collective actions

1. Formalise a Kent and Medway Learning Disability Nursing Network — quarterly, with lived experience representation, linked to the KSS Community of Practice.
2. Take LD nursing into schools and colleges — outreach into at least five settings within twelve months, co-delivered with lived experience partners.
3. Build the evidence base — a working group to develop outcome frameworks that capture the preventative impact of Learning Disability nursing.

Read it. Share it. Use it.

The report is written to be placed in front of commissioners, Chief Nurses, and workforce planners. If you’d like to get involved in any of the three collective actions, we’d love to hear from you.

KaM RNLD CPD Report LDNursing April 26

Ruth Germaine is launching Co-creation Learning Sessions, and she wants you to know about them.

Whether you have lived experience of learning disabilities or autism, whether you are a family member, or whether you work in services, this is for you.

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What Are Co-creation Learning Sessions?

These are sessions where staff learn with and from people with lived experience.

In these sessions:

• Everyone’s voice matters — not just the professionals
• We work together to make services better
• People with learning disabilities, autistic people, families, and staff are all part of the learning

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Why Is Ruth Doing This?

Ruth wants to understand what good co-creation really looks like in practice.

Co-creation means working with people — not doing things to people.

It means listening. It means learning. It means sharing ideas together.

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When Does It Start?

The sessions will begin in May.

This is a pilot — which means Ruth is trying it out first, to see what works well and what needs to change before making it bigger.

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Would You Like to Get Involved?

Ruth is looking for people who might want to:

✅ Join the sessions

✅ Support the sessions

✅ Watch and listen — just to see what it is like

This could be you, or someone you know.

To get involved, contact Ruth directly:

📧 Ruth Germaine ruth.germaine@reflectiveruthconsultancy.com

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What Happens After the First Sessions?

After the first few sessions, Ruth will bring people back together to talk about:

• What we learned
• What people need next
• How we can keep improving

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A Message From Ruth

“We hope these sessions will be a welcoming space where everyone can learn together — whatever your background or experience. I would love to hear from you.”

💙 Ruth Germaine | ruth.germaine@reflectiveruthconsultancy.com