Robin Miller and Helen Dickinson review research on the quality of local integrated services for people with long-term neurological conditions
KEY WORDS: Long-term conditions ❙ chronic illness ❙ integrated support ❙ Parkinson’s
Authors: Sylvia Bernard, Fiona Aspinal, Kate Gridely and Gillian Parker
Aim: To identify best models and practice in providing integrated support for people with long-term neurological conditions and their families, and to develop a national benchmarking system to assess the impact of the National Service Framework.
Methodology: The processes of integration and experiences of people with long-term neurological conditions were studied in six case studies through interviews, observation and analysis of local literature such as strategy documents. A national survey was completed of the lead commissioners for long-term neurological conditions within each primary care trust in England to find the type, quality and impact of integrated services.
Conclusion: Best practice was not available in all areas and people with long-term neurological conditions often struggled to get access to appropriate services. Three models of best practice were identified: nurse specialists, community interdisciplinary neurological rehabilitation teams and day opportunities. Important contributory factors in people experiencing continuity of care were care co-ordination, specialist expertise, voluntary sector involvement, and timely access.
About 10 million people in the UK have a neurological condition of some sort, including 350,000 people who need daily help with living as a result, according to the Department of Health. Yet support in this area is often fragmented.
Support for people with such conditions has had a higher profile in recent years, both in terms of improving quality of life and reducing costs to the health and social care system.
Currently, people with long-term neurological conditions (LTNCs) account for 20% of acute admissions to hospital and are the third most common reason for people to see their GP.
The National Service Framework for Long Term Neurological Conditions was published by the DH in 2005 and set out 11 quality requirements that local areas should work towards by 2015 to improve support for individuals and their families.
The requirements were underpinned by a need to deliver a person-centred service that encourages the individuals and their families to be full partners in their care through providing access to information, advice, guidance and support.
Integrated care planning and review was also seen as vital to ensure that the various services and disciplines worked together flexibly and responded to changes in individuals’ needs and circumstances.
The research aimed to explore continuity of care provided to people with long-term neurological conditions and their families. This was defined in the research as the “experience of a co-ordinated and smooth progression of care” and involves several components including: care being provided by as few professionals as are required to meet people’s needs; a smooth transition between providers and the levels of service; and, people sustaining their personal relationships and community involvement.
The researchers wanted to understand what promoted or prevented integrated working, and to identify which models of best practice led to a more positive experience of continuity of care for the individuals and their families.
They also wanted to develop a national benchmarking system to assess the impact of the National Service Framework.
The research found that three models of support stood out as promoting continuity of care:
● Nurse specialists. These were employed by the NHS and could be hospital or community based and work either as a lone specialist or as part of a team. They were especially valued when they acted as key-workers and advocated for people to access wider support services.
● Community interdisciplinary neurological rehabilitation teams. These brought together various health disciplines to provide joint assessments and interventions. The disciplines commonly included occupational therapists, physiotherapists, speech and language therapists, dieticians, nurses and medics. They could provide support within a particular site (such as a community hospital) and within people’s own homes. When social workers were based or linked with the team this enabled a more holistic approach. For example, an interdisciplinary team following this model is established in Nottingham, involving NHS Nottingham City and Nottingham Council.
● Day opportunities. These were provided by local authorities (which tended to be for people with a range of conditions) and voluntary organisations (often providing support for people with a particular condition). They were generally building-based but some supported people to also access community facilities.
They were valued for peer support, social and leisure opportunities and access to learning and employment.
The researchers argue that care co-ordination in service provision is crucial to the experience of continuity of care and specialist knowledge in long-term neurological conditions is valued highly by service users.
Voluntary sector organisations are often central to the delivery of continuity of care. Timely access to services is vital, but this is often not in place due to lack of local services, insufficient capacity and unclear pathways of care.
The main recommendations are that one or more of the models of best practice needs to be available in all local areas, and that local partnerships and joint-working are maintained during the current wave of health service reorganisations.
They also recommended further research regarding the experiences of people from minority ethnic communities, and comparison with service delivery and approaches in other countries.
This research is thorough and looks at the issues both in depth (through the case study sites) and breadth (through the national survey). It adds to the evidence about what supports or prevents integrated working and how different models can lead to a more positive experience for people with long-term health and social care needs. It is a comprehensive, but useful, read for anyone who works directly with individuals with LTNCs or is responsible for commissioning these services.
For care managers:
● To recognise the importance of ‘continuity’ of care to people with LTNCs and evidence on how this can be achieved through sharing information and working positively with other disciplines and agencies.
● To provide people with LTNCs and their families information about their conditions and local service options and for them to be at the centre of any decisions about their care.
For care management team managers
To maintain links with operational colleagues from health during local reorganisations and ensure that a commitment to integrated care pathways continues.
● To recognise the importance of care co-ordination and support social workers to take on this role where appropriate.
● To ensure that teams have a degree of knowledge of common LTNCs and know who to access for more specialist advice (eg, voluntary organisations with a interest in LTNC conditions).
For social care commissioners
● To work with health colleagues in ensuring that at least one of the models of best practice are commissioned locally and that they have sufficient capacity to respond to local need.
● To recognise the important role that voluntary organisations can play in supporting people with LTNCs and involve them on local implementation teams.
What are long-term neurological conditions?
The National Service Framework categorises long-term neurological conditions (LTNCs) as follows –
• Sudden onset conditions, for example acquired brain injury or spinal cord injury, followed by a partial recovery.
• Intermittent and unpredictable conditions, for example epilepsy, certain types of headache or early multiple sclerosis, where relapses and remissions lead to marked variation in the care needed;
• Progressive conditions, for example motor neurone disease, Parkinson’s disease or later stages of multiple sclerosis, where progressive deterioration in neurological function leads to increasing dependence on help and care from others.
• Stable neurological conditions, but with changing needs due to development or ageing, for example post-polio syndrome or cerebral palsy in adults.
There is a wide variety of long-term neurological conditions and people have very different experiences. Conditions may be present at birth (such as cerebral palsy) and some of these may be associated with varying degrees of learning disability. Other conditions appear in childhood (such as muscular dystrophy) or develop during adulthood (for example, Parkinson’s disease).
About the author: Robin Miller is a senior fellow and Helen Dickinson is a lecturer at the University of Birmingham’s Health Services Management Centre
● Atkinson, Jones and Lamont (2007), Multi-agency working and its implications for practice, CfBT Education Trust
● DoH (2005), The National Service Framework for Long Term Conditions, Department of Health
● Glasby and Dickinson (2008), Partnership Working in Health & Social Care, Policy Press.
● Nolte and McKee (2008, Caring for People with Chronic Conditions: a health systems perspective, Open University Press
National organisations supporting people with long-term conditions:
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