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Guiding the way: a better continuing healthcare system for dementia
What is NHS continuing healthcare (CHC)?
NHS continuing healthcare (CHC) can be a lifeline for many people with long-term and complex health needs and their families, providing NHS funding to pay for care on a needs basis.
What are we campaigning for?
The system of applying and assessing eligibility for CHC is flawed. We are concerned that many people with dementia who may be eligible for CHC are not receiving it. The system needs to work for everyone.
Many families affected by dementia are struggling to navigate the system – if they are aware of CHC as an option at all. Families are left frustrated and disappointed over decisions that can lead to increased caring responsibilities and a worsening financial situation.
Our report, Guiding the way: a better continuing healthcare system for dementia, outlines the key challenges and obstacles faced by families affected by dementia when applying for CHC in England.
We are concerned that many people with dementia who may be eligible for CHC are not receiving it. The system needs to work for everyone.
It’s absolutely vital that the assessor understands the complexity of dementia and that just doesn’t happen. It’s totally dependent on tick-box paperwork and to me, that’s not sufficient – Maureen
We’ve been working to improve the awareness and quality of CHC.
- Our Helpline and clinics teams are supporting more families around CHC
- We published CHC information resources for families
- We published our dementia guide for CHC assessors to support a fair and robust assessment of people with dementia
- We achieved national media coverage highlighting the challenges families face accessing CHC
- We have worked with the Department of Health and Social Care (DHSC) and NHS England on updates to the CHC National Framework
We are committed to improving the CHC process and experience for all families affected by dementia. We’ll do this by:
- working with our supporters, Admiral Nurses and partners and engaging with local CHC leads, NHS England and the Department for Health and Social Care in England to make our recommendations a reality
- providing families affected by dementia with clear and accessible information about what CHC is, eligibility and how to apply for it. Find out about our new CHC information resources
- supporting Admiral Nurses to continually develop their knowledge and understanding of CHC, so they can better support families accessing the care they’re entitled to
- we’ve developed a guide on dementia for CHC assessors, which aims to support assessors in completing a robust assessment of a person with dementia. The guide also provides CHC assessors with an understanding of the complexity and variability of dementia and how the condition can affect individuals
We are focusing our campaigning efforts on the CHC system in England initially, but subject to capacity, we will expand our work to address similar issues in the comparable systems within Wales, Northern Ireland and Scotland.
We know many people feel strongly that improvements to the CHC process are needed.
- Let us know if you have any concerns about CHC in your area. This will help us build up a picture of how CHC works in local areas
- Share our information resources with families affected by dementia so they are better informed about CHC and how to access support
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- Sign up to our Campaigns Network emails where we’ll keep you updated with how we’re campaigning for better care and support and how you can get involved
Our Admiral Nurses can provide support and advocacy to families around the CHC process, both locally and via our Helpline and Clinics.
This can include:
- supporting family carers to make sense of CHC so they know what questions to ask, what language to use, how to talk about their role and the severity of the need
- encouraging family carers to write diaries to support the application, which would help provide continuous written evidence of need
- depending on the circumstances and environment, an Admiral Nurse may be able to attend the assessment with the family carer as an advocate
We offer information and advice to family carers directly though the Admiral Nurse Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December. You can also book an appointment with an Admiral Nurse through our Closer to Home clinics.
We will soon be starting work on the next phase of our campaign – and we need your help.
Please keep sharing your experiences of CHC so we can continue to build a picture of where the process works well, and where it needs to improve.
What is continuing healthcare?
Find out more about continuing healthcare and how our Admiral Nurses can support you with accessing itFind out more
Stories of continuing healthcare
Read more about families’ experiences of CHC in their own wordsRead more
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