Guiding the way: a better continuing healthcare system for dementia 

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.

However, the system of applying and assessing eligibility for CHC is flawed. 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 new 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

Our recommendations  

We’ve highlighted the challenges facing families; now we want to talk about solutions. Families’ experience of the CHC process must improve.  

Our key recommendations include: 

  1. raising awareness of the CHC funding option among families and professionals
  2. improving the quality and consistency of the system
  3. offering support for families throughout the process

You can read more about our recommendations in our Guiding the way report. 

What we're doing

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 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.

How you can help 

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
How our Admiral Nurses can support you

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.

What is continuing healthcare?

Find out more about continuing healthcare and how our Admiral Nurses can support you with accessing it

Find out more

Experiences of continuing healthcare

Read more about families’ experiences of CHC in their own words

Read more

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Sign up to our Campaigns Network for regular email updates on our campaigning work and how you can get involved

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