A sensitive area for the NHS, there are no second chances with end of life care, and the result impacts, not only on the patient, but on those around them.
Very often GPs and other frontline clinicians know where the gaps in service provision are. Drawing on their experience has helped a clinical commissioning group in Norfolk design and commission a new hospice at home service, improve the skills of existing staff and develop a service suited to the area’s geography.
Chief officer of West Norfolk CCG Sue Crossman says that GP input has been instrumental: “This is a good example where GPs have been able to say why things have fallen down. Sometimes it is just difficulty getting a piece of equipment,” she adds.
“Where we have had people commissioning services who are not directly linked to patient care it is hard for them to have an awareness of where the actual clinical needs and gaps are.”
The impetus for change started with a review of palliative care in 2010 which highlighted areas of concern. West Norfolk has a very rural population with no hospice beds and limited support for the terminally ill at home. Services for the CCG’s 164,000 patient population were fragmented - Ms Crossman describes them as a “hotchpotch.”
The first thing was to get all the stakeholders in a room together and overcome any suspicions they had about change. An analysis of what services were available was drawn up,
GPs’ views on gaps in the service were sought and a strategy for what the group wanted to deliver drawn up. This was based around partnership and an integrated approach, but building on the good work already being done in some areas. One significant gap was in information about what was available - for example, the voluntary sector might not know what help was available through the care sector.
The first stage in implementation was to fund a community consultant. This linked a community-based service into the local acute provider, Queen Elizabeth, King’s Lynn, Hospital. The CCG has worked closely with clinicians at the hospital. “They outreach and we inreach,” says Ms Crossman.
The second stage has been the development of a hospice at home approach which is currently being put into place.
This will involve the Norfolk Community Health and Care Trust playing a key role in providing and co-ordinating services, but drawing on the expertise and skills to the voluntary sector. The trust’s community teams will lead on the day-to-day provision of nursing, therapy and support for patients, with community matrons closely involved.
Its seven day a week coordination team will organise care for each patient and ensure that the help they need is in place.
But care home and healthcare staff will get additional education and training in end-of-life care from two new palliative care nurses recruited by Norfolk Hospice Tapping House, based in King’s Lynn which provides outreach and day therapy. This will help provide “best practice” care to patients and spread awareness of the different sorts of support available.
These nurses will also have a frontline role in helping care for patients but three healthcare assistants are also being appointed to carry out simple tasks which don’t need a trained nurse’s skills.
Marie Curie Cancer Care is also appointing two senior healthcare assistants who will offer an overnight sitting service and offer carers a break.
Finally, the CCG will go out to tender for the provision of five beds in a community setting which will be supported by the hospice at home team. This will further increase patients’ options.
Ms Crossman says that as the CCG has worked on the strategy other sources of support and funding have come forward - a Macmillan GP will support healthcare colleagues and the East of England deanery has offered a facilitator.
‘We have a fantastic community nursing service who are the backbone of this service, but they need support,’ she says.
And she points out sharing information is key in good end-of-life care, both to inform patients, carers and healthcare workers about what is available and to ensure that patients’ wishes are respected - for example, that ambulance staff are aware if a patient does not want to be resuscitated.
Dr Peter Tasker, a recently retired GP, has been advising West Norfolk CCG on the end of life project. He said: “This is very much a true collaboration between many parties and links perfectly with the national end-of-life care intelligence network which was established in May 2010.”