NHS palliative care delays mean thousands of terminally ill patients risk dying in hospital rather than at home
Less than a third of NHS areas providing timely funding so terminally ill patients can be cared for at home
Thousands of terminally ill patients risk dying in hospital when they could be at home because of 'unacceptable' delays accessing urgent care support and funding, according to a study.
The report by end-of-life nursing charity Marie Curie estimates 57,000 patients who are terminally ill, or progressing to a terminal stage of their illness, are not receiving timely home terminal-care support.
The charity found fewer than a third (28 per cent) of NHS clinical commissioning groups (CCGs) hit national targets on providing fast-track Continuing Healthcare (CHC) support within 48 hours.
Of the two thirds missing the target, a third (32 per cent) of CCGs reported patients waited more than a week, with some areas even reporting two week waits for this support.
The report received responses from around half of CCGs for the year 2015/16 and calculated that across England this amounts to 57,000 people waiting beyond the recommended 48 hours.
Twenty-five thousand patients waited longer than a week and the report warns there are “no second chances” for patients who are not granted their wish to die at home.
The report says: “Delays to this process ultimately can mean people dying in hospital before a package of care is put in place, causing significant distress for those at the end of their lives and their families.
“There is no second chance to get it right. Delays which lead to people waiting more than 48 hours to get the care package they need in place are unacceptable, yet it is something that our research shows is happening far too often."
Reasons given by CCGs for the delays include a lack of local social care capacity and the fact that CHC service was not available at weekends, as well as patients deteriorating faster than expected.
Julie Coombes’ father, Paul, passed away in October 2015 after applying for CHC funding.
Ms Coombes said: “All my dad wanted was to die at home where he felt comfortable and could be with the people he loved but it was a real struggle to get him out of the hospital. He just felt so isolated and alone there with no support at all."
There are also concerns the scale of the problem is being under-represented. Many areas said they couldn’t provide the information and did not appear to be monitoring their delivery of the 48-hour target.
“CCGs have told us that people are dying in hospital while waiting for fast-track CHC,” Simon Jones, director of policy and public affairs at Marie Curie told The Independent. “Marie Curie is concerned that this number runs into many hundreds per year, if not thousands.
“Without knowing the full picture it is impossible to know the true impact this is having on dying people and their families across the country. That’s why we’re calling on all NHS organisations to be held to the national guidance and report how many patients are dying in hospital when they don’t need to.”
Julie Wood, chief executive of NHS Clinical Commissioners — a membership organisation for CCGs — said their members "strive" to meet the 48 hour target and they were working with NHS England to streamline processes around awarding CHC funds.
"However, the needs being assessed are in many cases very complex," Ms Wood said. "And it is important that the care put in place is right for the individuals, rather than hastily pulled together before their needs are properly considered."
Labour's shadow minister for community care, Julie Cooper MP, said: “The truth is many Continuing Healthcare schemes are at risk of further cuts and this problem is only going to get worse as the Government squeeze on health and care spending goes on.
“The Government must step in and make sure that the NHS has the resources it needs to deliver appropriate end of life care. These heart-breaking failures affecting so many families just can’t be allowed to continue."