News broke yesterday that the work and pensions secretary, Amber Rudd, is scrapping repeat assessments of disabled pensioners who receive personal independence payments (PIPs).

In her speech, Ms Rudd said “Disabled pensioners have paid into our system for their whole lives and deserve the full support of the state when they need it most.”

The news led us to reflect on a similar situation in the Continuing Healthcare (CHC) system.

Once eligibility for CHC is agreed, the care needs of the individual are reviewed after three months and then annually through the course of their eligibility.

This review process is supposed to be a check on whether the CHC care package is working well. A re-assessment should be triggered only when the person’s needs have clearly changed.

Unnecessary and unfair re-assessments

Too often re-assessments have been taking place even when the person’s care needs appear unchanged. Our clients and callers frequently feel that their Clinical Commissioning Group (CCG) has used the review process as the perfect opportunity to find a reason to stop their funding.

The process is often combative, stressful and poor quality, as these testimonials from Beacon clients suggest:

“I was shocked when Mum lost her funding in 2018. Her needs have barely changed. But the panel seemed to have made up their mind before the meeting. The assessor was very aggressive and demeaning. She completely ignored what I had to say, and the evidence I submitted.”

“What shocked me was the quality of the re-assessment. The decision support tool (DST) was awful – full of inaccuracies and a complete lack of understanding of my condition. None of the professionals on my panel knew me, they weren’t involved in my care, they hadn’t got a clue about me. But when I wrote an eight-page response to the DST it seemed to be completely disregarded.”

Losing eligibility

While we accept that eligibility for CHC is not a life-long promise, it’s clear to us that re-assessments are often carried out unnecessarily. The process is frequently unfair and flawed. And we hear far too many stories of eligibility being withdrawn when it shouldn’t be.

Even when the system is working as it should, losing funding at review stage can be a cruel blow. Take the example we give in our blog about Five things you need to know about eligibility:

…if someone with dementia who is mobile and presents with challenging behaviour, is then immobilised by a fall or stroke. Although the diagnosis of dementia has not changed – and in fact the person’s health has worsened – the management of their needs has become less intense because they are no longer mobile, and the person is assessed as no longer having a primary health need.

Losing eligibility for no valid reason is also a highly stressful situation, made worse by the prospect of a long fight ahead if you choose to appeal.

Is the system improving?

The National Framework for CHC was updated in October 2018, and one of the changes that we welcomed most was to the review process.

The new wording made it explicit that reviews should focus on checking the care package is working well, rather than reviewing eligibility. This was a significant step that we hoped would reduce the stress on individuals and families who are already often having a hard time coping with a loved one’s ill health.

Sadly however, we haven’t yet noticed a shift. We still get just as many calls about reviews and inappropriate re-assessments. But perhaps we should remain optimistic – we’re only a few months into the new Framework being operational.

There is pressure on the NHS from charities and patient groups that people with degenerative conditions should not be made to have their eligibility status reviewed. However, since eligibility cannot be based on a diagnosis, we think it’s very unlikely that this principle will be changed along the lines of the announced changes to PIP.

We’ll be keeping our eyes and ears peeled to see if the improvements to the Framework do start to filter down to better reviews. If not, we’ll press for improvements, and – as the leading independent experts in Continuing Healthcare – we’ll provide education and training to Clinical Commissioning Groups to support them to follow the rules.

How can we help?

If you know you have a re-assessment for Continuing Healthcare coming up, we can help you prepare to give you the best chance of a fair and accurate process. Take a look at our Assessment Support Services.

If you’ve had a re-assessment and eligibility for Continuing Healthcare is being withdrawn from you or your loved one, you should request a thorough explanation of the change in writing from your Clinical Commissioning Group. If you disagree with their explanation, you can challenge that decision. Our free Toolkit will help to show you how, read our blog on the subject, or contact us for an Expert Analysis of the decision.

Alternatively, call our free Information and Advice Service for any questions you’ve got about reviews and re-assessments.