Earlier this year, Carents submitted two reports to the Casey Commission into Adult Social Care and wrote to the Secretary of State for Health and Social Care with specific questions about the support available to families helping parents with frailty and/or dementia.
Stephen Kinnock MP, Minister of State for Care, has responded on behalf of the Department of Health and Social Care.
Here is what the letter says, and what it does not.
The reports we submitted
The reports come directly from this community. They are built from your experiences, your concerns, and the reality of what carenting actually involves. You can read them at this link and you can also send them on to your own MP - full instructions are in each report.
What the Government said
The response confirmed that the Government intends to introduce the first ever Modern Service Framework for Frailty and Dementia. This framework will set national standards for dementia care across the country (rather than frailty without dementia it seems). An interim version is expected by September 2026, with the full framework by the end of the year. It will be informed by the Casey Commission into Adult Social Care, phase 1 of which is also due this year.
National standards for dementia care, applied consistently, can make a real difference for families. The variation in care quality depending on where a family happens to live is a genuine problem. A framework that sets a consistent floor matters.
What the Government did not say
It is not yet clear whether the framework will only focus on improving care for people living with dementia or whether it will also improve support for the growing number of adults depending on carents because they are living with frailty as a consequence of other conditions.
And - most importantly - it does not, as the response stands, address the experience of the people doing the carenting at all.
This is the gap Carents has always worked to close. Carenting is not a side effect of dementia. It is a distinct experience, with its own pressures, its own costs, and its own need for support. Families do not become invisible simply because the condition is the focus of the policy.
We submitted our reports because your voices deserve to be part of this conversation, and we will keep making that case.
What you can do
If you would like to help us push for carents to be seen in national policy:
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Share your story with us at hello@carents.co.uk
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Donate to Carents Room
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Become a Carents Champion by emailing hello@carents.co.uk
Read the letter in full
Dear Dr Gray,
Thank you for your correspondence of 7 May about care for older adults with frailty and/or dementia.
I would like to take this opportunity to thank everyone who works or volunteers at Carents for the invaluable support they provide to families caring for older relatives.
The Government wants a society where every person with dementia receives high-quality, compassionate care from diagnosis through to the end of life.
Our health system has struggled to support those with complex needs, including those with dementia. Under the ten-year health plan, those living with dementia will benefit from improved care planning and better services.
We will deliver the first ever Modern Service Framework (MSF) for Frailty and Dementia to make rapid and significant improvements to the quality of care and productivity. This will be informed by phase 1 of the independent commission into adult social care, which is expected later this year. The MSF for Frailty and Dementia will seek to reduce unwarranted variation and narrow inequalities for those living with dementia. It will set national standards for dementia care and redirect NHS priorities to provide the best possible care and support.
We intend to engage with a range of partners over the coming months to develop a framework that is both ambitious and practical, so that we can improve system performance for people with dementia both now and in the future. We are working to develop the content as soon as possible and we will keep partners updated on progress and timelines as this work unfolds.
The MSF for Frailty and Dementia is co-chaired by:
• Dr Jeremy Isaacs, Consultant Neurologist at St George’s and Kingston Hospitals and National Clinical Director for Dementia and Older People’s Mental Health at NHS
England;
• Sarah McClinton, Chief Social Worker for Adults and Mental Health Social Work lead in the Department of Health and Social Care; and
• Professor Jugdeep Dhesi, Consultant Geriatrician at Guy’s and St Thomas’ NHS Foundation Trust, Professor of Geriatric Medicine at Kings College London and President of the British Geriatrics Society.
We are committed to publishing an interim product in September to inform NHS and local government planning cycles, and we aim to publish the full MSF by the end of the calendar year, as recommended by Baroness Casey.
The Frailty and Dementia MSF Task and Finish Group is an advisory body that offers insight and guidance to help shape the MSF by drawing on expertise from across the health and care system. The first meeting took place on 25 March, and the group will meet monthly.
The Government is empowering local leaders with the autonomy they need to provide the best services to their local community, including people living with dementia. That is why we have published the D100: Pathway Assessment Tool programme, which brings together multiple resources into a single, consolidated tool. This will help simplify best practice for system leaders and support the development of communities and services to provide the best possible care and support to those with dementia.
Further information on the D100: Pathway Assessment Tool, which was launched in April, is available at www.rcpsych.ac.uk/improving-care/nccmh/service-design-and-development/dementia-100-pathway-assessment-tool.
