The first full audit of specialist palliative care services in London, including specialist nursing, has revealed patchy provision for terminally ill patients across the capital.
Many hospitals and community services are failing when it comes to providing good quality 24-hour support for dying people and their families, the review found.
“We know poor provision of services can add to stress and confusion for patients and families”
Meanwhile, people with life-limiting conditions other than cancer were still less likely to access specialist care than cancer sufferers.
The report – compiled by the London Cancer Alliance, expert group PallE8 and Marie Curie – uncovered wide variation in access to specialist care.
It identified some examples of excellent provision, but it found variation both between different clinical commissioning group areas and within boroughs.
The report, published today, covers services in hospices, hospitals and the community with data gathered from all 50 adult specialist palliative care providers in the capital, as well as paediatric services in north central and north east London.
A key concern was the fact more than two thirds of hospitals and more than a third of community services were failing to comply with official recommendations and accepted best practice when it came to providing specialist telephone advice round-the-clock and access to face-to-face visits seven days a week.
“Out-of-hours specialist palliative care provision is vital for people living with a terminal illness and their families,” said Marie Curie chief executive Dr Jane Collins.
“We know poor provision of services can add to stress and confusion for patients and families,” she said. “We also know good provision can prevent unnecessary hospital and A&E admissions as well as helping to reduce the strain on already stretched NHS hospitals.”
The review found providers in south and west London had improved the availability of out-of-hours services since 2012.
However, in north east and north central London availability of round-the-clock advice and care had got worse.
Despite the fact that non-cancer deaths accounted for 71% of all deaths in London in 2014, the report found specialist palliative care services continued to see a “disproportionate” number of cancer patients.
However, the research found the proportion of people with non-malignant conditions accessing specialist services appeared to be increasing over time.
The report contains a series of recommendations for commissioners of services including the need to review staffing levels to ensure they match national guidelines.
It said hospitals and community teams needed more support to achieve standards set by the National Institute for Health and Care Excellence when it came to out-of-hours care.
Meanwhile, clinical commissioning groups should work with clinicians, such as specialist nurses, to understand the needs of local communities and ensure the right support for both cancer and non-cancer patients and their families and carers.
“We are working to ensure all patients receive the same high quality services regardless of where they live”
NHS England London
One issue, highlighted in the report, was the current lack of a nationally-agreed way of measuring the quality of specialist palliative care.
Public Health England is in process of developing outcome measures and a new national dataset to help assess and compare performance, which is expected to be in place by 2017.
An NHS England London spokeswoman said: “We want to ensure that people all across London with cancer, or other long term conditions, who require end of life care receive the best possible support and access to appropriate services.
“In London some areas are delivering excellent palliative care, as this report acknowledges, and we are working to ensure all patients receive the same high quality services regardless of where they live,” she said.
She noted that the London End of Life Clinical Network provided strategic leadership and expert clinical support to commissioners and providers around end of life care in the capital and was working hard to address any variations in care experienced by patients, their families and carers.
“We are also working with the 32 clinical commissioning groups, London Councils and the mayor through the Healthy London Partnerships on ways to further improve services for cancer patients,” she said.