NHS caps on continuing healthcare pose new threat to former ILF-users

Disabled people with complex health needs are at increasing risk of being forced into nursing homes by cash-strapped NHS commissioners unwilling to fund packages to support them to live independently in their own homes, campaigners fear.

At least two clinical commissioning groups (CCGs) – Mid Essex and Enfield – have already introduced rules that refuse to fund home-based packages of support for those eligible for NHS continuing healthcare if the cost is more than 10 per cent above the cost of a place in a nursing home.

Disability Rights UK (DR UK) has raised concerns that such moves to impose an artificial cap on home support packages could impact on former users of the Independent Living Fund (ILF), which closed at the end of June.

Faced with responsibility for an influx of service-users with high support needs, it is feared that local authorities will argue that many former ILF-users should instead be funded by the NHS.

If CCGs then cap the cost of support packages, it could force some ILF-users into nursing homes.

NHS continuing healthcare was introduced in 2007, and refers to packages of ongoing care for people with complex health needs that are arranged and funded solely by the NHS.

Earlier this month, the board of Mid Essex Clinical Commissioning Group approved new guidelines that allow new patients to receive NHS continuing healthcare at home only if that support costs a maximum of 10 per cent more than equivalent care in a nursing home.

A consultation on the plans saw only 22 per cent of 75 respondents backing one of two options to impose a cap.

Responding to the consultation, the user-led Spinal Injuries Association (SIA) warned that such a policy could breach both article eight – the right to a private and family life – of the European Convention on Human Rights (ECHR), and article 19 – on living independently – of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

SIA said the policy “strongly implies that the individual will be physically placed in a residential care home against their will”, which would be a “fundamental and material interference with their right to a private life”.

It pledged to support members who challenge the policy in the courts.

The SIA response added: “In summary, SIA wishes to make it clear that it rejects as unacceptable the proposals to restrict the cost of ‘care at home’ packages, and will support its members in opposing any attempts to coerce the CCG’s spinal cord injured patients into residential care.”

When asked if the policy would lead to fewer disabled people with high support needs living independently, a Mid Essex spokesman said: “This policy is intended to ensure that NHS continuing healthcare provision in mid Essex is an equitable process for all residents.”

He said Mid Essex had “sought legal advice prior to the consultation taking place to ensure we are meeting our legal obligations”.

Asked if the policy could impact on former ILF-users, he said: “The policy applies to all new patients.”

Enfield CCG has already introduced a similar policy for people assessed as eligible for NHS continuing healthcare, and will now “only consider the provision of ‘care at home’… where the total cost of providing care is within 10 per cent of the equivalent cost of a placement in an establishment”.

Enfield’s policy was introduced in October 2013 and is currently being reviewed.

A spokeswoman for Enfield CCG said that so far the policy had not been invoked, as colleagues had managed to “look at each individual’s needs and have worked the package around what is best for them”.

But she said the policy could still be invoked in the future, because Enfield CCG was a “financially-challenged organisation”.

She said Enfield does not “have any concerns” that its policy could breach the ECHR or the UNCRPD, and believes it is consistent with the government’s framework on NHS continuing healthcare.

But Sue Bott (pictured), deputy chief executive of DR UK, said she was “very concerned” that CCGs had begun to introduce such policies.

She said: “I think we will be looking to find out as soon as we can how many CCGs have got this policy.

“It is a direct threat to disabled people and there is a real worry that people could end up in a nursing home against all the principles of independent living.

“It is just not acceptable for people to be institutionalised, which is what it amounts to, in this way against their will.

“We will be campaigning and getting our allies to ask questions in parliament and we will be seeking some reassurance from ministers that disabled people are not going to face this threat.”

Bott said the new policies posed a threat to former ILF-users, as some local authorities were now referring them to CCGs for NHS continuing healthcare because of their own lack of resources.

Linda Burnip, a co-founder of Disabled People Against Cuts, said policies such as those in Enfield and Mid Essex were “very regressive” and were “taking disabled people’s rights to independent living backwards, basing it not on independent living but purely and simply on cost”.

But she said it was very difficult to know what impact these and other such policies would have on people’s care in the future, until the results of the chancellor’s spending review in the autumn.