Terminally-ill patients in England are often being denied the chance to fulfil their wishes to die at home, due to failings in the Fast-Track system of care that allows them to leave hospital quickly, according to a report by the charity Marie Curie.
The charity has estimated that there could be as many as 10,000 patients dying in hospital each year while they wait for a package of urgent care which would mean that they can be cared for at home.
Under the National Framework for Fast-Track Continuing Healthcare (CHC) patients that are considered to be close to death are entitled to an NHS package of home care within 48 hours of an application being made.
For the report, Marie Curie obtained data from 149 CCGs via freedom of information (FoI) requests on Fast-Track CHC requests in the 2017-2018 financial year.
The investigation found that there is a wide degree of variation across England in how long a patient will have to wait for the package of care, with some patients having to wait up to 19 days in certain areas.
Of the CCGs who provided data, Marie Curie reported that the majority were missing the two-day implementation period for Fast Track CHC. Only 23 CCGs (22%) reported implementing packages of care within an average of 48 hours of an application being made.
Among the poorest performing CCGs, there are a number who are only able to provide care to half, or even less, of the dying patients who are entitled to fast track care. While 17% of the CCGs reported that more than a third of their patients did not get the care they needed.
Most of the CCGs could provide the care package within 2-7 days, but 28% of the CCGs reported an average delay of a week or more, of which eight had delays of more than 12 days, with two CCGs having delays of up to 19 days (Cannock Chase CCG and Camden CCG).
Matthew Reed, Chief Executive of Marie Curie, said: “The report paints a bleak picture….Any delays will inevitably lead to people dying in hospital before arrangements can be put in place. When time really matters, it’s important that no-one is left in limbo and denied their wish to spend their last remaining days at home surrounded by loved ones.”
When the number of delivered care packages is considered, the investigation found that there are some areas of England where more than half of the applications being made for Fast-Track CHC are not resulting in delivered packages of care.
This is the second year that the charity has carried out the survey and a comparison of this data with 2016/17 data found that the waiting time is getting worse, with fewer CCGs meeting the 48 hours guidance and substantially more falling into a delay of 2-7 days.
The reasons given by the CCGs for delays to care packages were various, including problems with the bureaucracy, such as poor paperwork, inadequate training in the system and CHC approval services only functioning monday to friday in office hours, however there is also a problem with availability of care in the community, with a lack of care home places and lack of suitable community care.
This lack of sufficient community care was highlighted by Marie Curie in research published in March 2018. This looked at the significant effect on A&E departments of inadequate community care for terminally ill patients. The charity’s data showed that there were over 1.6 million emergency admissions for people in the last year of their life in Britain in 2016, costing the NHS £2.5 billion and amounting to around 11 million days in hospital.
If community care is adequate, it is often possible to avoid emergency admissions to hospital for people in the last year of life. The charity warned that the cost of emergency admissions will rise significantly if nothing is done to improve community care.
To make matters worse, reports over the past few years have highlighted how underfunding and lack of staff have made it difficult for nurses in hospitals to care for patients as well as they want to. A February 2017 survey by Marie Curie found that more than two-thirds (67%) of nurses surveyed said they did not have sufficient time to provide high quality care to those dying patients. And a September 2017, report from the Royal College of Nursing found that patients are dying alone on wards due to nurses not having enough time to care properly.
This was followed by a RCN report in May 2018 – Nursing on the Brink – which highlighted how staff shortages are affecting safe patient care. As the shortages of nursing staff gets worse, with the King’s Fund, Nuffield Trust and Health Foundation predicting 250,000 vacancies by 2020 and 350,000 vacancies by 2030, then it’s inevitable that the treatment of terminally-ill patients in hospitals will suffer and it becomes more important that adequate care is provided in the community.
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