Tens of thousands of disabled people who receive “continuing care” from the NHS could benefit from new government rules that should allow them more control over how their needs are met.
Those receiving NHS continuing healthcare – free care outside hospital for those with complex health and social care needs – will have the right to ask for a personal health budget by April 2014.
Health secretary Andrew Lansley told the Conservative party conference that personal health budgets – a pot of money that can be spent by an individual on any support that meets their agreed health and wellbeing needs – would allow people “to choose support and services that suit them and their families”.
But the Department of Health (DH) stressed that personal health budgets would only be rolled out across the country “subject to evaluation” of a series of 20 pilot projects, which are due to end in October 2012.
And NHS managers will still be able to turn down a request for a personal health budget, if it is not felt to be “appropriate” or “suitable” for that person.
One of those who welcomed Lansley’s announcement was Valerie Garnham, who last year lost a legal battle for the right to use direct payments to manage her long-term condition.
She said: “It is not for everybody, but you should have that choice, you should have the option if you have enough energy and are well enough to do it.
“I have said all along that it should be a human right to choose how and where and by whom you want your help delivered.”
She said it made “no economic sense” to use expensive specialist agencies to deliver continuing care, rather than offering people direct payments. She has been told it would cost three times more to deliver her care through an agency than it does for her to organise it herself.
She and another disabled person, Steven Harrison, were forced to drop their appeal when the DH introduced new laws that only allowed direct payments for healthcare through official pilot schemes.
Garnham’s primary care trust, Islington, in north London, was one of the trusts selected to run a pilot scheme, so she has been able to continue managing her own healthcare.
But it is believed that Harrison, from Yorkshire, has not been able to continue using direct payments because of the court ruling.
Garnham’s solicitor, Frances Lipman, from Disability Law Service (DLS), welcomed the government announcement, which she said was “inevitable”, due to the rise in the use of direct payments and personal budgets by social services, although she said that 2014 was “a long time away” for many people with long-term conditions.
She said she had just given advice to a couple who called DLS’s advice line, and wanted their daughter to continue to provide support, through direct payments, after the husband moved from council-funded support to NHS continuing care.
But they have been told their daughter will have to join the local care agency used by their NHS trust if she wants to continue supporting her father.
The 20 pilot projects are testing the use of personal health budgets for people with long-term conditions, mental health conditions, and end-of-life care needs, as well as those receiving continuing healthcare.
Lansley said personal health budgets would be part of a “cultural shift for doctors, healthcare professionals, providers and patients, which sees the patient as an equal partner in decisions about their care” and would “provide more integrated high quality care across health and social care”.
6 October 2011
UN debate will be reminder of true inclusive education