End of life: Up to 65 per cent of terminally-ill patients say they would like to die at home but currently only 20 per cent do (model photo)
Nearly 100,000 people are not having their end-of-life care needs met, a funding review for the Government has found.
It also found huge inequalities in the provision of palliative treatment, with one primary care trust spending £186 per patient compared to £6,213 in spent in another.
The postcode lottery also extends to access to services such as round-the-clock nursing care.
Far more people die in hospital than wish to and experts estimate that more than 90,000 people are not having their needs met.
The Palliative Care Funding Review was ordered by Health Secretary Andrew Lansley last summer.
It has proposed a new ‘fair and transparent’ funding system where the money is linked to the individual patient.
It is hope this would cut variation around the country in what the state pays for and what it does not, and support far more people to be cared for in their own homes.
Under the scheme, people would receive an initial assessment of their needs, which would then be combined with other factors such as their age and capabilities.
This ‘needs classification system’ would have 25 separate classes (13 for adults and 12 for children), each with its own pot of funding.
The funding would take account of personal care needs – including help with washing and eating, the provision of 24/7 nursing care to support people at home and a co-ordinator to help patients work out their state entitlements as well as access to local charitable services.
At present, some end-of-life care providers are paid regardless of how much work they do, offering poor value for money across the service, the review said.
The review has recommended a new palliative care tariff.
IT WILL COVER
* A regular assessment of the patient’s needs* All clinically assessed palliative care needs, wherever they are based*A patient coordinator who will guide them through the process* Social care needs at the end of life
IT WON’T COVER
* Care not assessed as clinical need such as complementary therapies* Support for families and carers such as respite* Bereavement care
The review says: ‘These services can continue to be supported by either the state or society as they are now.’
Meanwhile, 97 per cent of hospices do not receive all the funding they need for the NHS services they provide, and some patients are victims of ‘rationing’ towards the end of the NHS financial year.
These latest proposals would guarantee funding regardless of where patients live and whether they are in a care home, hospital or in their own home.
Experts behind the report say the move could reduce deaths in hospital by up to 60,000 a year by 2021, translating into savings of £180m a year.
Thomas Hughes-Hallett, chair of the review and chief executive of Marie Curie Cancer Care, said: ‘No other country in the world has introduced such a system for both adults and children, so the step is both a bold and necessary one.’
Professor Sir Alan Craft, adviser to the review, said: ‘The Government must act on the recommendations contained in the review because evidence shows us that incentivising the provision of palliative care leads to better outcomes for patients, supports choice and is the most cost effective way of using NHS resources.
‘We need to remove the barriers within the current system to enable this to happen.’
Up to 65 per cent of adults would like to die at home but only one in five do so, with 55 per cent dying in hospital.
The ageing population and the increased complexity of needs towards the end of life mean 90,000 more people than at present could be dying in institutions by 2030, the review said.
Ciaran Devane, chief executive of Macmillan Cancer Support, said people wanted a choice over where to die.
‘Twenty-four hour community nursing services are crucial to the delivery of choice and to the realisation of these ambitious recommendations.
‘It will be up to the Government to ensure that these services are standard across the country.
‘We need to see a massive improvement on the 56 per cent of PCTs who currently provide 24-hour community nursing.’
Simon Chapman, director of policy and parliamentary affairs at the National Council for Palliative Care, said: ‘It is vital that the Government acts on the review’s recommendations and creates a fair funding mechanism that will ensure people get high quality end of life care where and when they need it.
‘We only get one chance to get it right for dying people, which is why it must be a priority to ensure everyone who needs it can access palliative care round the clock.’
Susan Munroe, Marie Curie Cancer Care’s director of nursing and patient services, said: ‘Far too many people at the end of their lives are still not getting the care and support they need nor do they know what they are entitled to.
‘We welcome the recommendations of the review as the next big step.
‘We now want to see these recommendations implemented by the Government as a matter of urgency.’