Postcode lottery on free social care at the end of life, finds report

People who should get free social care at the end of life are not always being referred for it, a report has found.

The NHS continuing healthcare (CHC) fast-track pathway designed to enable people whose conditions are entering a terminal phase to gain rapid access to fully-funded care, was open to local interpretation based on local resources when it should not be, found the study.

The report, by consultancy OPM, said there need said there needed to be better guidance around the CHC fast-track funding which was “less open to interpretation at a local level”. Professionals referring clients for the fast-track pathway and case co-ordinators also needed training about entitlement, how to access support and funding and how to challenge a local commissioner if they were not following the guidelines.

The study, commissioned by charities Macmillan Cancer Support, the Motor Neurone Disease Association and Sue Ryder, was designed to examine how free social care at the end of life could work in practice.

All three charities are campaigning for free end-of-life social care, which was backed by the government’s palliative care funding review in 2011 and is being tested by ministers through eight pilots before they commit to the policy.

The report looked at exiting models for free end-of-life social care, including the CHC fast-track scheme and the Stars Care Liverpool service commissioned by Liverpool Clinical Commissioning Group.

It said the access to care could be made more consistent through a simpler referral application and process, a common end-of-life outcomes framework and common triggers for free end-of-life social care. Options for a trigger include the Electronic Palliative Care Coordination System, which seeks to co-ordinate the care of people in their last year of life, or the DS1500 form, which is a medical report on a terminally-ill person submitted with a benefits claim.

It said the current models of free end of life social care could be seen as a “sticking plaster”, bridging the gap between free NHS care and means-tested social care. “True integration”, through a single, ring-fenced budget for health and social care with a single commissioning body, would remove many of the barriers to free end of life social care. It said local authority social care funding was “generally absent” from most of the models considered in the report which were funded jointly or solely by the NHS or charities.

However, the report said “true integration” was some time off, so in the meantime existing approaches to free end-of-life social care, such as the CHC fast track or Stars Care Liverpool, should be improved.

The report said even some innovative services, like Stars, were not reaching effectively people with a diagnosis other than cancer, homeless people, prisoners allowed home to die, and people from black and ethnic minority communities.

Mike Hobday, director of policy and research at Macmillan Cancer Support, said: “This report shows that access to free social care at the end of life, which gives people a real say in where they are cared for, is only available in small pockets across the country. We know the majority of cancer patients who are dying in hospital, at great expense to the NHS, want to be able to die in the comfort of their own home surrounded by their loved ones. We want to see more examples of the innovative services highlighted in the report and universal access to free social care at the end of life.”

Chris James, director of external affairs at Motor Neurone Disease Association, said: “The Motor Neurone Disease (MND) Association welcomes this timely report. The researchers have highlighted the unacceptable inequity that currently exists across England in dying people’s access to social care that is free at point of use. Innovative models like Stars in Liverpool should be commended and replicated across the country, but this requires a catalyst from decision makers at the top as well as those personally committed to the agenda at the local level.

“It is particularly important that we get end of life care right for people dying with conditions other than cancer. This group is still to benefit fully from end of life care initiatives. The social impact of rapidly progressing, terminal conditions such as MND is devastating on families, and the non-medical needs of people with MND are significant. The government has sent welcoming signals about the introduction of free social care in recent months and years – this report adds more weight to the argument that the time to make this a reality has arrived.”

In January, care minister Norman Lamb said he was determined to introduce free end of life social care, but was not yet able to commit the government to the measure before the eight pilot had been evaluated.