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Tories oversee 272% rise in removing essential home care funding for Parkinson’s and Alzheimer’s sufferers

An investigation has revealed that thousands of chronically ill and disabled people are having NHS funding for their care removed, leaving their families to pick up enormous bills. And proposed ‘efficiency savings’ are likely to make the situation much worse.

The problem is with people who have been granted NHS Continuing Healthcare (CHC) funding, which pays for care outside hospital for people who are found to have a ‘primary health need’. If their need is considered ‘social’ rather than medical, they get no help with paying for care costs or nursing home fees – a criteria which is seemingly becoming harder and harder to meet, even for people with the most serious conditions. With nursing home fees averaging over £40,000 a year, whether or not someone is deemed eligible for the payment is obviously a crucial issue.

The investigation for This is Money found that between 2013 and 2016, the number of people having their CHC payment removed rose by a staggering 272%, from 593 to 2,211 people. These include people with long-term, deteriorating conditions such as Alzheimer’s and Parkinson’s disease, who have suddenly been told they are no longer eligible despite their condition being unchanged or worsening.

And whilst these numbers may sound relatively small, NHS England is demanding ‘efficiency’ savings from CHC of £855m by 2020/21, leading to concerns that many more people are going to have their funding cut off.

Making decisions about who is eligible for CHC is the responsibility of Clinical Commissioning Groups (CCGs), defined as ‘clinically-led statutory NHS bodies responsible for the planning and commissioning of health care services for their local area’. The vast number of CCGs – 207 in England – and their differing interpretations of CHC criteria mean that whether you are granted funding may depend as much on where you live, as what your health needs are.

A January 2018 report for the Public Accounts Committee noted that there is a huge variation in the numbers of people granted CHC funding across CCGs, ranging from 28 up to 356 people per 50,000 population.

The report also found that there are huge variations in how much CCGs are willing to pay for care, and that:

The stakeholders representing patients raised concerns that CCGs are increasingly placing arbitrary financial caps on the cost of care packages and may be forcing people to accept lower cost packages that do not meet their care needs.

But speaking to the Public Accounts Committee, Simon Stevens, Chief Executive of NHS England, was adamant that people granted the payment would not see their care affected by the cuts. MP Nigel Mills asked him:

So there is absolutely no pressure on CCGs from you or the Department to find ways of rationing this care or reducing its quality? We want people to get the right care for their needs in the right setting; is that what we are aiming for?

To which Simon Stevens replied: “We are aiming for that.”

But there’s already evidence of rationing. One of the witnesses at the PAC hearing was Brian O’Shea, the Continuing Healthcare Adviser at the Spinal Injuries Association. He talked about a 53 year old man with a spinal injury, with four young children, who has been in hospital for six months. He has been told that he’ll have to go into a nursing home, as the care costs of supporting him in his family home are too great. O’Shea said:

What they are doing is using it [CHC] as a tool to blackmail people into accepting unsafe levels of care and of funding to live in their own home or their preferred setting of care and relying on informal support to pick up the rest of the care.

So despite what Simon Stevens says, it’s hard to see how £855m in ‘efficiency savings’ can be made without refusing the payment to many people who should be eligible, or reducing the package of care people are granted.

It’s clear the problem is already there, and these cuts can only make it worse. As ever with the Tories’ entirely discredited regime of systematic cuts to vital public services, it’s the most vulnerable who will suffer.

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