Campaigners have warned more than 40 NHS primary care organisations across England that policies which could see service-users with complex healthcare needs forced into institutions are a breach of disabled people’s human rights.
Despite the warning, the Department of Health last night (Wednesday) refused to say if it had any concerns about the policies on NHS continuing healthcare (NHS CHC), or whether they complied with its own guidelines.
Research on the policies, published last week by disabled campaigner Fleur Perry, showed at least 44 clinical commissioning groups (CCGs) – and probably many more – would be willing to move disabled people with high-cost support packages into residential or nursing homes against their wishes.
Perry, who edits the website Disability United, is herself a recipient of NHS CHC.
Her research, using freedom of information requests, showed that the 44 CCGs had drawn up policies containing “concerning” phrases 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.
Most of the other CCGs that responded to her requests 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*.
Perry’s research has alarmed disabled activists and other campaigners for independent living.
Jenny Morris, a member of the Independent Living Strategy Group, which is chaired by the disabled crossbench peer Baroness [Jane] Campbell, said the group was “extremely concerned” by the research.
Morris (pictured), who helped write the Labour government’s Improving the Life Chances of Disabled People white paper, said: “This is taking us back to a time when disabled people were not considered to be equal citizens.
“It is also a denial of human rights to a private and family life, and a direct contravention of article 19 of the United Nations Convention on the Rights of Persons with Disabilities, which states that disabled people have the ‘right to live in the community with choices equal to others’.
“The UK government has signed up to and ratified this convention and CCGs as public bodies should not be taking decisions such as this.”
Rob Greig, chief executive of the National Development Team for inclusion (NDTi) – which works with charities and government departments, including the Department of Health, to promote inclusion and independent living – said the research was “seriously concerning”.
He said it was not a surprise that such policies existed but he was surprised at “the blatancy with which it was acknowledged [by CCGs] and the extent to which it was found”.
Greig, a former national director for learning difficulties and currently a member of the Equality and Human Rights Commission’s (EHRC) disability committee, said he would bring Perry’s research to the EHRC’s attention this week.
But he said that, because of the continuing reductions in EHRC’s budget and its expertise on disability, he was not sure if it had the “capacity to continue to raise and take up issues such as this”.
He said that NHS England needed to be “asking questions of those authorities that have responded in this way”, and added: “If they are breaching human rights then the human rights legislation needs to be brought into play.”
He said the culture within the health sector meant health professionals “don’t automatically think of the human and civic rights arguments when it comes to designing people’s services”.
He added: “Therefore it’s not right but perhaps not surprising that the healthcare system will not consider the impact on people’s rights and personal autonomy when deciding what sort of service they want to put someone in.”
In response to one NHS consultant who suggested on Twitter that the solution to the CCG policies was for people receiving NHS CHC to ask for a personal health budget (PHB) – giving them control over how their CCG funding was spent – Greig said this might be a solution for only a limited number of people.
He said: “I think it’s on record that the number of people receiving personal health budgets is pretty low at the moment.
“In the right circumstances it might be a solution for some people. It would not be accurate to say that it could be a widespread solution to this.”
Greig suggested that using a PHB might only work if someone receiving NHS CHC, with a support system in place, was able to use the flexibility provided by a PHB to spend their allocated budget “in a more cost-effective way”, but only if the CCG was not allocating resources to those receiving PHBs from a perspective of “we are doing this to save money”.
Sue Bott, deputy chief executive of Disability Rights UK, said: “PHBs are certainly the way to gain control over how your health needs are met, but we do need to challenge those CCGs who have a policy of limiting PHBs to the cost of residential care.
“CCGs need to understand the principles of independent living and how meeting support needs contributes to disabled people’s right to be full citizens in their communities.”
A Department of Health (DH) spokeswoman refused to say if DH was concerned about the 44 policies or if it believed they complied with its framework*.
But she said in a statement: “Every person with complex needs should be offered the right level of care for them, in the right environment.
“We expect all CCGs to follow the National Framework for NHS Continuing Healthcare*, and continued independence should be considered as part of the overall approach to care planning.”
She added: “As CCGs are statutory bodies in their own right, it does not fall to the Department of Health to approve an individual CCG’s approach.
“All CCGs are provided with national guidance which helps inform their policies.
“From 2015 to 2016, NHS Continuing Healthcare has been included in the quality assurance processes for CCGs.
“This will help make sure that all CHC assessments are consistent across the NHS, and that they comply with the CHC National Framework.”
NHS England had failed to comment by noon today (Thursday).
*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”.