The equality and human rights watchdog has forced 13 NHS primary care organisations to withdraw unlawful, discriminatory policies that could have seen service-users with complex healthcare needs forced into institutions.

The Equality and Human Rights Commission (EHRC) had written to the clinical commissioning groups (CCGs) as the first step in a potential judicial review of their policies on NHS continuing healthcare (NHS CHC).

But it announced this morning (Thursday) that all 13 CCGs had now agreed to revise their policies following the threat of legal action by the commission.

EHRC said the move “resolves nearly eight months of disagreements” over the “unlawful” policies.

In March 2018, EHRC threatened to judicially review the 13 CCGs* over concerns about their “blanket” NHS CHC policies which had “placed arbitrary caps on funding and failed to consider the specific needs of individual patients”.

The commission warned this was a serious breach of the Human Rights Act, their public sector equality duty and the Department of Health and Social Care’s own NHS CHC framework.

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Concerns about the NHS CHC policies of more than 40 CCGs were first raised in January 2017 by disabled campaigner Fleur Perry, herself a recipient of NHS continuing healthcare, which provides long-term NHS funding for care outside hospital.

Perry’s research, using freedom of information requests, showed how many CCGs had drawn up policies that suggested they would move disabled people eligible for NHS CHC out of their homes and into institutions against their wishes, even if the cost of a homecare package was only slightly more expensive than residential care.

These concerns were subsequently taken on by EHRC, which raised “significant concerns” about the policies last October when it asked 43 CCGs for more information.

Now all 13 policies are being revised, and EHRC will examine the new policies “to ensure they are lawful and adequately consider equality and human rights implications for their patients”.

Perry said this morning: “This is great news. I’m really glad to see that the importance of people being able to choose where and with who they live is being recognised.”

Rebecca Hilsenrath, EHRC’s chief executive, said: “Everyone has the right to live their lives to an adequate standard and to have access to good quality health care.

“Those who need help are individual human beings with individual circumstances which need to be taken into account.

“We said that it is unacceptable and de-humanising for CCGs to adopt a blanket approach in forcing people into residential care, especially when with the right support they would be able to live at home with the families who love them.

“We are really pleased with the result and we know that all those affected will be reassured to see CCGs putting the rights of patients at the heart of their decision-making processes.

“We will continue to work with CCGs to ensure that future policies do not make the same mistakes.”

Potential legal action still hangs over the head of one CCG.

Haringey CCG is the only one of the 43 organisations contacted by EHRC last October that has failed to share its policies with the watchdog.

It was not one of the 13 that faced judicial review, but EHRC said its lack of engagement now leaves it open to further action.

*EHRC threatened judicial reviews of the NHS CHC policies of the following CCGs: Brent, Coventry and Rugby, Dudley, East and North Hertfordshire, Eastern Cheshire, Harrow, Hillingdon, South Cheshire, Vale Royal, West Cheshire, Warwickshire North, Lincolnshire West, and Redditch and Bromsgrove


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  1. The Commission hardly forced the CCGs into anything. I am afraid nothing has changed. at least for some.
    I fought for my father care funding for many months before he died two weeks ago. It was a long ongoing battle, as they kept reviewing him and removing funding. Then they imposed an arbitrary cap on funding his care at home. And that was only back November 2018. In the process I have learned a lot about the ordeal sick people are put through. True, the Equality and Human Rights Commission has lifted the threat of legal action as they were “reassured” that the health authorities implicated were changing their policies, as explained in this article:
    Unfortunately, as said, as per November 2018 funding caps were still used, certainly they were to my father. And obviously I am not alone in continuing to be a victim of health authorities illegal practices, as seen in this article:
    These health authorities do not stop in front of anything.


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