Commissioning of quality end of life care for long-term neurological conditions (LTNCs) has been supported by a number of different national strategies:
The Long Term Conditions National Service Framework (LTC NSF) [ 1 ] was published in March 2005 after more than 2 years of preparation. It was produced with a high level of engagement with people with LTNCs, their carers, and the vol- untary sector in addition to the typical involvement of a reference group of experts.
can be called upon when needed. The team holds clinics at the two hospices based in the north and south of the county as well as making frequent visits to people in their own homes or nursing homes.
The service supports about 50 patients with neurological conditions such as MND from diagnosis and MSA, PSP, prions disease, and CBD from the time they reach a more palliative stage through to end of life care. The initial assessment aims to be holistic and is followed up on a regular basis.
The service came into being because patients with MND were receiving no specialist support and conventional statutory services were simply too slow.
Dr. Fiona Wiseman, Consultant in Palliative Medicine states, “They just couldn’t respond quickly enough to people’s changing needs. For instance, they would be waiting weeks and weeks for equipment by which point it was often too late.”
The current service places the emphasis on being proactive and therefore avoiding the crises that so often lead to hospital admissions and unnecessary cost and distress. “We try to get things in place before they become a prob- lem,” says Fiona. “And what we have been able to demonstrate is that this has enabled people to stay in their preferred place of care and to die where they want to die.”
As a result, it is rare for anyone in the county with a progressive neurologi- cal condition to be hospitalized. The service has also proved popular with patients and carers. A recent survey indicated people felt reassured by the sup- port and expertise that is on hand and reported they were getting things like specialist equipment in a timely manner. Carers also appreciated the support they received.
Fiona Wiseman states: “They are living with conditions that are fl uctuating and changing rapidly and they really appreciate that there is a specialist team on hand who will have seen this before and can say, ‘here’s a different approach that might help.’” She feels that the team’s presence also enables patients to begin the process of advance care planning at an earlier stage. “ACP is rarely done at one sitting but whenever the occasion arises,” explains Fiona. “But because we’ve developed a rapport we can gently explore what information they want and when is the best time to talk this through.”
As a new style of NSF, it did not set national standards with national targets for implementation but instead de fi ned 11 quality requirements (QRs) with evidence- based markers of good practice for local implementation within a 10-year delivery period.
The Long Term Conditions Model [ 2 ] described a tiered approach to the delivery of health and social care support to people with chronic conditions. This had been published shortly before the NSF and reinforced some of the key principles in the NSF, including:
Patient empowerment through information to self-manage their condition
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Making informed choices about their care
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The need for an adequately equipped generic workforce to meet the nonspecialist
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needs of people with LTCs with access to a more specialist workforce Services for those with more complex needs
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It also emphasized the importance of avoiding admission to hospital through improved management of the LTC, as did the NSF.
This model applied equally to the management of end of life care (EoLC) in LTNCs as it did to earlier stages of the condition. This highlighted the need for the specialist workforce – in this case, palliative care – to work collaboratively with the neurological and rehabilitation workforce and to skill up the generalist primary health care and social care workforce delivering day-to-day care and support.
Quality Requirements of the NSF : Within the LTC NSF, Quality Requirement nine addressed palliative care, stating that
People with long-term neurological conditions nearing the end of their life are to have access to a range of palliative care services as and when they need them, to control symp- toms and offer pain relief, and to meet any personal needs they may have [ 1 ] .
This statement was made in 2003 and predates the National End of Life Care Strategy but did coincide with the document “Building on the Best” [ 3 ] . The aim had been to improve quality of care at the end of life for cancer and noncancer patients and enable more patients to live and die in the place of their choice, but most specialist palliative care services were dedicated to people with cancer. The only LTNC likely to be accepted by hospices and other specialist palliative care services was motor neuron disease, mainly because it was a rare rapidly progressing condition and so unlikely to make signi fi cant demands on resources.
The key to implementing QR9 was rolling out the use of three end of life tools that had been developed for cancer patients but that are applicable to other condi- tions. The tools are:
Preferred Priorities of Care, which is an example of an advance statement as a
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patient-held document. It is used to facilitate and record patient choice in relation to end of life issues [ 4 ]
The Gold Standard Framework, which was initially developed for use in pri-
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mary care settings so that people approaching the end of life can be identi fi ed, their care needs be assessed and a plan of care with relevant agencies put into place [ 5 ]
The Liverpool Care Pathway, which is an evidence-based framework to support
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those delivering care to the dying patient and their relatives in the last days and hours of life, in a variety of settings [ 6 ]
The evidence-based markers of good practice for QR9 focused on the delivery of improved end of life care through the collaboration of specialist and generalized services and workforce development via on the job and more formal education.
These are the following:
Marker 1: Specialized neurology, rehabilitation, and palliative care multidisci-
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plinary teams and providers work together to provide care for people with advanced LTNCs.
Marker 2: People with advanced LTNCs have access to specialized and general-
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ized palliative care services which support them in their home or in specialized setting according to their choice and needs and in line with national best practice guidelines and specialized neurological and community rehabilitation services provide support, advice, and training for all staff delivering palliative care in the community.
Marker 3: Staff providing care and support in the later stages of a LTNC have
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appropriate training. This should ensure that neurologists and neurorehabilita- tion teams are trained in palliative care skills. It should also mean that all staff providing care for people in the advanced stages of neurological illness are trained in both the management of LTNCs and palliative care.
A policy research program, funded by the Department of Health, accompanied the NSF and aimed to expand the evidence base and support implementation. The LTNC NSF research initiative [ 7 ] was launched in late 2005. A total of ten studies were commissioned with one focusing speci fi cally on end of life care. This study found that in these conditions the problems and needs are similar in nature and severity to those experienced by people with cancer and that better management of these symptoms is likely to improve their quality of life and reduce the carer burden [ 8 ] .
The End of Life Care Strategy [ 9 ] , published in July 2008, aimed to improve access to high-quality care for adults approaching the end of life. This care was to be available wherever the person is, whether that is home, care home, hospital, hos- pice, or somewhere else.
The strategy addressed a number of key areas, including:
Raising the pro fi le of end of life care and changing the attitudes to death and
• dying
Strategic commissioning to provide an integrated approach to planning
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Care planning to assess the needs and wishes of the individual and agree a care
• plan
Coordination of care
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Rapid access to care and support 24/7
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Delivery of high-quality services in all locations
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Using an integrated care pathway in the last days of life
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Involving and supporting carers
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Education and training and continuing professional development
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Measurement and research to monitor the care given and develop further services
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Later reports emphasized the involvement of palliative care in LTC:
Long-term conditions and end of life care remained high on the agenda as part of
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the NHS Next Steps Review [ 10 ] led by Lord Darzi where end of life care was a core component and every regional health authority had work streams addressing these agreed priorities. In some cases this included neurological conditions. The NHS Operating Framework which lays out the important priorities for the NHS 2009–11 [ 11 ] continued to incentivize good quality EoLC, reinforcing the use of recognized tools such as PPC.
• High Quality Care for All (2008) [ 12 ] reinforced the content of the NSF. It emphasized the importance of EoLC for all, regardless of underlying condi- tion, and the need for collaborative teamwork to ensure that individuals’
speci fi c needs were met. To this end a series of good practice documents have been produced to highlight condition-speci fi c issues and management. The EoLC in advanced neurological disease good practice guidance was published in 2010 [ 13 ] .
Commissioning policy has also changed markedly over this period. When the NSF was launched, primary care trusts were charged with its implementation with an exhortation to engage with social services in order to achieve the desired improve- ments in longer-term care and support. Individual controls of certain aspects of the social care budget for personal care through direct payments were at the pilot stage.
However, the current landscape is very different as there is now even greater empha- sis on personalization of social care budgets with people with a LTC holding their own real or virtual individual budget which enables them to commission their social care.
It has been suggested this could be extended to aspects of health care funding.
At an organizational level, PCTs are being phased out and the vision of Liberating the NHS [ 14 ] is giving GPs greater local control as clinical commissioning groups with local authorities identi fi ed as key decision makers. An NHS Commissioning Board will oversee the process and have responsibility for commissioning more specialist national/regional services. This policy is still evolving, and its impact is unclear, but there remains an ongoing commitment to supporting people with LTCs and providing high-quality EoLC.