Talking to people about Parkinson's

Continuing Healthcare Alliance

The Continuing Healthcare Alliance is a group of 17 charities and organisations who believe that NHS continuing healthcare needs to improve.

We aim to make continuing healthcare fairer and easier to access for those who need it most.

What do we do?

We work together to investigate what's wrong with the current continuing healthcare system.

We work with local decision makers to recognise the importance of improving continuing healthcare.

And we don't want anyone left without the support they so desperately need.

What is continuing healthcare?

NHS continuing healthcare – also known as NHS continuing care or NHS CHC – is free healthcare provided outside of hospital that is arranged and funded by the NHS.

It may include paying for care costs typically funded by a local authority under the banner of social care, such as fees for a care home, but where these arise due to a specific health need.

When delivered effectively, it can enable people to go on living as full a life as possible. It can also have the benefit of reducing anxiety and minimising pressure on family and friends.

Who are our members?

Ann and Bill's story

Ann's husband Bill was diagnosed with Parkinson's in 1997.

In this animation, she explains the struggles she had in accessing continuing healthcare.

Read our report

In 2016 we launched a report into the current state of NHS continuing healthcare. We found 9 major issues with the system, from lack of consistency to unacceptable delays.

It's failing those who need it most.

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Continuing to Care report (PDF, 3MB)

You can also download our:

Share the report

We need your help to improve continuing healthcare - send our report to your local decision maker to prove that the system needs to change.

Share now
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What did the report find?

There's a lack of information and advice

Since its introduction, the application and assessment process for NHS continuing healthcare has been incredibly complex.

Many people told us they had to become overnight experts in a daunting and complicated system.

Download this chapter

In the dark: the provision of information and advice (pdf, 260KB)

People are kept waiting for weeks or months

Despite there being clear guidelines in place about how long this process should take, people are often left waiting long periods with little communication on the progress of their application.

Download this chapter

Why are we waiting? The delays experienced by people applying (pdf, 550KB)

Not enough data is collected

To improve something, we need to know what's wrong.

But it's hard to prove what's wrong with NHS continuing healthcare as so little data is collected.

Download this chapter

Filling in the blanks: improving the data that is gathered (pdf, 32KB)

Multidisciplinary teams aren't used effectively

It's essential that knowledgeable teams of qualified health and social care professionals lead the assessments on continuing healthcare.

They know the person, and in-depth information on their condition, and can involve the patient, their friends and family in the process.

Download this chapter

Leave it to the experts: how professionals conduct the assessments (pdf, 180KB)

The decision support tool doesn't work

The decision support tool is used by professionals to help decide whether someone qualifies for NHS continuing healthcare.

We do not believe it is fit for purpose.

Download this chapter

Dysfunctional decisions: how the Decision Support Tool is used (pdf, 130KB)

There's a lack of consistency and consequences

As so many decisions regarding NHS continuing healthcare are made at a local level, people across the country have very different experiences and outcomes.

Download this chapter

Never the same: the lack of consistency and consequences (pdf, 270KB)

Reassessments and stressful and often unnecessary

It's unacceptable that people are continually reassessed despite many people assessed for continuing healthcare having long-term, progressive conditions.

Download this chapter

Say that again: the impact of regular reassessments (pdf, 460KB)

Unsuitable care is being provided

Once someone has been awarded NHS continuing healthcare, the Clinical Commissioning Group is required to commission a package of care.

An area of concern is the lack of suitable care packages put in place once eligibility for NHS Continuing Healthcare has been granted.

Download this chapter

Who cares and how much? The provision of care (pdf, 230KB)

Appeals are complex and distressing

Appealing a decision about NHS continuing healthcare can be time consuming, complex and distressing.

Often people can wait months and even years.

During that time, it is likely that individuals are paying for care unnecessarily and also engaging solicitors to support them through the process.

Download this chapter

Righting the wrongs: the appeal process (pdf, 140KB)

Leanne and her husband

Share your story

Share your experiences of the current continuing healthcare system - both positive and negative - to help us make improvements where they're needed most.

Share your story

Do you need support to get continuing healthcare?

Beacon can help you access the support you're entitled to.

Visit Beacon's website
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