More than 40 NHS primary care organisations – and possibly many more – have quietly introduced policies that could see disabled people with complex healthcare needs shunted into residential or nursing homes against their wishes, new research has revealed.
Disabled campaigner Fleur Perry (pictured), who edits the website Disability United, reached the conclusion after analysing responses to freedom of information requests she had put in to every one of England’s 200-plus clinical commissioning groups (CCGs).
She decided to carry out the research after it emerged in October that Southampton City CCG had introduced a policy that disabled people who needed more than eight hours of long-term healthcare a day should be pushed into residential or nursing care rather than being allowed to continue living at home.
The Southampton policy made clear that it had been developed because of the need to make “effective use of finite resources” and for care packages to be “cost effective”.
Disabled activists say lawyers are now hoping to take a case that will show that some of the policies being introduced by CCGs are unlawful.
The CCG policies apply to people who have complex health needs and have been assessed as eligible for care arranged and funded solely by the NHS, known as NHS continuing healthcare (NHS CHC).
Perry herself receives support funded by NHS CHC, which enables her to live independently in her own home.
Of the 212 freedom of information requests Perry submitted – asking for their policies on how they make NHS CHC decisions – she received replies from 122 CCGs.
A majority of those that responded said they relied on the Department of Health’s National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care, and the NHS England Operating Model for NHS Continuing Health Care*.
But 53 CCGs said they had drawn up their own policies, and Perry found that 44 of them contained “concerning” phrases that suggested the CCGs would move disabled people eligible for continuing NHS healthcare into institutions against their wishes, even if the cost of the homecare package was only slightly more expensive than residential care.
Perry, whose own CCG did not respond to her FoI request, said: “This research shows that in many areas of the country, I’d have been forced into a care home against my will long ago. I find that a very disturbing thought.
“Each of those policies would have to have been signed off by a board of perhaps a dozen people.
“This means that there are likely more than 500 people working for our NHS who would not object to me, or someone like me, being moved [into an institution]against their will.”
One of the CCGs says in its policy document: “Unless there are exceptional circumstances the CCG will fund either the most cost effective option or any other option which is no more than 10 per cent more expensive than the most cost effective option.”
Another says: “Home care packages in excess of eight hours per day would indicate a high level of need which would be more appropriately met within a residential placement.”
Perry said she would be “very shocked” if the number of CCGs with worrying NHS CHC policies was not much higher than 44, because of the number of CCGS that failed to respond to her freedom of information request.
She says, in a blog on Disability United: “Somebody who has never met the person in question can sign a bit of paper and change everything about a person’s way of life.
“They could read a summary of a person’s medical needs, look at the cost, decide where they’re going, send a letter, have a taxi arranged and that would be the end of the matter.
“It wouldn’t make a difference whether the person was happy to be moved or not, or whether their health needs were well provided for in their own home.”
Perry now plans to write about her concerns to the 44 CCGs and the NHS continuing healthcare policy team.
Linda Burnip, co-founder of Disabled People Against Cuts, which has supported Perry’s research, said: “The potential limiting of CHC funding along with restrictions on local authority funding for independent living and the ever-increasing charges for social care which many local authorities are introducing are extremely worrying and mark a very real regression of disabled people’s rights to not only choose where and with whom they live but to take part in any significant way in civil society.”
*The NHS England operating model stresses that “personalisation should be at the heart of all NHS Continuing Healthcare assessments and the provision of care and support”, and calls for “innovative, personalised packages of care”.
The Department of Health national framework says CCGs “should commission services using models that maximise personalisation and individual control and that reflect the individual’s preferences, as far as possible”, and that although cost can be taken into account, it “has to be balanced against other factors in the individual case, such as an individual’s desire to continue to live in a family environment”.
The framework points to a 2005 human rights legal case in which the high court found that forcing a woman who needed constant nursing care into an institution would infringe her right to a family life under article eight of the European Convention on Human Rights, and that article eight should be given “considerable” weight in such cases, although the cost of a package “is a factor which can properly be taken into account”.