Concerns over delays in fast-track care for thousands of dying patients

A report by Marie Curie has raised major concerns about a fast-track system of care that is meant to allow seriously ill or dying patients in England to leave hospital quickly when they no longer need to be there.

The findings have revealed that a significant number of people around the country are being delayed in hospital, and potentially dying there, as they wait for urgently needed ‘Continuing Healthcare’ (CHC) to be put in place.

The free packages of care, arranged and funded by the NHS, should be provided to people who are terminally ill and those whose conditions are considered to be rapidly deteriorating, if their health needs can be provided outside of hospital.

But while national guidance says that fast-track CHC should be delivered within 48 hours of being applied for[i], the report shows that in many cases this time-limit is being exceeded.  We estimate that in 2015/16 as many as 57,000 people waited longer than two days for a package of care, of which just over 25,000 were waiting longer than a week.[ii]

Of the Clinical Commissioning Groups (CCGs) that provided the relevant data in response to Freedom of Information (FOI) requests by the charity (46% of all CCGs in England), less than a third (28%) were found to be meeting the 48-hour guideline, while for a further third (32%), the average waiting time exceeded a week.  Some CCGs even reported patients waiting more than two weeks to leave hospital.

Simon Jones, Director of Policy and Public Affairs for Marie Curie, said:

“Fast-track CHC is crucial to seriously ill and dying people. It supports them with the care they need to get out of hospital and will often mean they are able to die where they want to.

“Delays which lead to people waiting beyond 48 hours to get the care package they need will inevitably lead to some people dying in hospital before arrangements can be put in place, causing significant distress to them and their loved ones. This is totally unacceptable.”

The report also raises concerns that the data represents the tip of the iceberg, given the number of CCGs who appear to not be collecting the information needed to assess how well their Fast Track CHC is being delivered.[iii]

Marie Curie is calling for NHS organisations to be held to the guidance laid out in the National Framework for CHC, both in terms of meeting the 48-hour timeframe and in conducting audits on their use of Fast-Track CHC.

Simon Jones said:

“The fact that some areas are operating within the recommended timeframe demonstrates that 48 hours is an achievable performance measure.  If a CCG in one part of the country is able to get it right, then all CCGs across the whole of England should be expected to. We need to understand why some are managing better than others and identify ways of sharing best practice. But this cannot happen if they don’t know what is working and what is not working.

“With as many as a third of seriously and terminally ill people experiencing average delays of over a week, the Government and NHS England must take action to ensure that CCGs and Trusts are held to the National Framework guidance which is clear and specific. The time to put this right is now as every day counts when your time left is limited.”

Julie Coombes, 35, whose father Paul died in October 2015, said:

“Dad had already been in hospital for two months before he was told that his stomach pains where actually terminal cancer, and another month afterwards.

“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. He went into depression which I wouldn’t wish on anyone but especially a person having to deal with being terminally ill.”

Where CCGs did offer explanation for the waiting times people were experiencing, they identified a number of contributing factors, including: CHC being a Monday to Friday service, creating delays over weekends; delays in finding suitable care homes for patient discharge; and delays due to market capacity and local provider issues.

Marie Curie’s report follows a National Audit Office investigation into CHC funding earlier in the year. Their report highlighted that people were waiting longer than they should for standard, non-fast-track CHC but did not look specifically at delays in provision of Fast-Track CHC. The report did however reveal that 79,000 people had had a Fast-Track CHC package of care approved in 2015/16.[iv]