It is estimated that up to 300,000 people with diseases other than cancer are not receiving the palliative care they need. In particular, there has been very little progress for those with neurological disorders.
Palliative Initiatives in Neurological Care (PINC) was developed by Sue Ryder Care to adapt end-of-life best-practice tools to its residents with neurological conditions such as multiple sclerosis and Huntington’s disease.
One of the challenges for its pilot in six neurological care centres was adapting these tools for residents within a broader age range (aged 18 and above) whose deaths are far more unpredictable.
Mary Trumble is education lead at Stagenhoe neurological centre in Hertfordshire, which cares for 44 residents and is part of the pilot. A former sister at a Huntington’s unit, she explains: ‘Because this is a neurological centre where people eventually die, part of the challenge is knowing when to put someone on the end-of-life pathway. In the last year, we have had 12 deaths, and six of those were on the pathway.
‘It’s much more difficult to know when someone with a neurological illness is at the end stages, because the disease trajectory is entirely different from that of cancer.
‘While most cancer patients can communicate well into the disease process what their wishes are and what will happen, quite a lot of our residents haven’t been able to communicate verbally for years. So we have to find other ways of working out their needs, which is quite a specialist challenge.’
The one-year pilot began in 2006 using the Gold Standard Framework in Care Homes, the Preferred Priorities of Care programme and the Liverpool Care Pathway. Its innovation was highlighted in the Department of Health’s End of Life Care Strategy as a beacon for care providers and it is now integrated into all Sue Ryder Care centres.
The benefits of using PINC include an easier paperwork process that improves staff communication and fosters closer working relationships with outside agencies, including local hospices and community liaison specialists.
Ms Trumble says: ‘Now we have a good relationship with the local nurse specialist who supports us on symptom control and related matters. We have adapted the paperwork to make it more user-friendly for staff, and the criteria to go on to the pathway was adjusted for our client group.’
Training and development for specialist-centre staff through to community services is key to PINC’s success. This ranges from the Macmillan Foundation in Palliative Care course, to a verification of expected death programme to help nurses adapt to the new paperwork.
‘Staff are now more confident in delivering end-of-life care,’ says Ms Trumble. ‘An ongoing area of work is for staff to gain more confidence on symptom management. We plan to develop this with community specialists, with whom we have developed excellent working relationships through PINC.’
Judi Byrne, PINC programme lead and facilitator across Sue Ryder Care’s UK centres, says: ‘A key outcome of the programme has been residents being able to remain at their care centre if that is their choice.’