Concern has been raised by disabled campaigners about new research revealing NHS primary care organisations have slowly started introducing policies that could potentially see disabled people with complex healthcare needs moved into residential/nursing homes without their consent.
This conclusion was stumbled upon by Disabled campaigner Fleur Perry, who edits the website Disability United, after she analyzed responses to freedom of information requests she had put in to every one of England’s 200-plus clinical commissioning groups (CCGs).
Perry 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”.
Linda Burnip, co-founder of Disabled People Against Cuts, whom 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”.
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).
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*.
It was found that 53 CCGs said they had drawn up their own policies, with 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.