The government has taken a small step towards addressing the discrimination faced by service-users with complex healthcare needs who risk being forced into institutions.
Last month, the Equality and Human Rights Commission (EHRC) wrote to 13 clinical commissioning groups (CCGs) as the first step in a potential judicial review of their policies on long-term NHS funding for care outside hospital, known as NHS continuing healthcare (NHS CHC).
But the Department of Health and Social Care (DHSC) now appears to have quietly altered key guidance on NHS CHC, making it harder for CCGs to continue to discriminate against disabled people receiving such funding.
Concerns about the policies of more than 40 CCGs were first raised in January 2017 by Fleur Perry (pictured), herself a recipient of NHS continuing healthcare.
Her research showed that many CCGs had drawn up policies suggesting 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 believes that “blanket” policies that have imposed “arbitrary” caps on funding and fail to consider the specific needs of individual patients are “a serious breach” of the Human Rights Act, the CCGs’ public sector equality duty and DHSC’s own NHS CHC framework.
But Perry has now spotted that DHSC has made a minor, but significant, change to its framework document, which is due to come into effect in October and is the first new version for six years.
In the new version, DHSC warns CCGs that while they can “take comparative costs and value for money into account, they must not set arbitrary limits on care at home packages based purely on the notional costs of caring for an individual in a home, if this does not represent a personalised approach or an accurate appraisal of the cost of meeting the assessed needs of the individual concerned”.
There was no mention of arbitrary limits in the 2012 edition of the guidance.
Imposing such “arbitrary limits” is “incompatible” with the principle of personal health budgets, which were “developed to enable people to live independently, work or participate in society”, says DHSC in the new version of the guidance.
Perry said the change to the framework represented progress although it fails to address all her concerns and is “not a solution”.
She said: “It’s great that arbitrary cost-caps are not supported by the new national framework.
“However, this does not prevent care at home costs being effectively capped at the cost of a local care home by some CCGs.
“It does not prevent a person being moved away from their home on the sole basis of small differences in cost. This is a step forward, but not a solution.”
An EHRC spokeswoman said: “It is encouraging to see that the Department of Health and Social Care recognise the importance of an individual’s circumstances when arranging care packages.
“We hope that CCGs take note and amend their NHS Continuing Healthcare policies accordingly.
“Removing arbitrary caps on funding for NHS CHC will go a long way to improving many disabled people’s ability to live independently.”
A DHSC spokeswoman said: “We have updated the national framework to ensure the process for accessing funding is clearer so people with the highest and most complex health and care needs get the care they deserve.”
The department believes the change makes it clear that the starting point for agreeing a NHS Continuing Healthcare care package and the setting where services are to be provided should be the individual’s preferences.
But it believes this is not a major departure from the 2012 guidance, which also highlights the importance of an individual’s preferences.
