Researchers in Southampton are leading a study into the needs of patients with long-term neurological conditions to address a “mismatch” with the clinical and social care services they require at different stages of their illness.
Led by Dr Christopher Kipps, a consultant neurologist at University Hospital Southampton NHS Foundation Trust, it will gather information on multiple sclerosis, epilepsy, Huntington’s disease, motor neurone disease and Parkinson’s disease from patients and carers.
Neurological conditions result from damage to the brain or spine and the nerves connecting them due to illness or injury, with more than 10 million people in the UK estimated to be living with a long-term form and 350,000 in need of help with daily activities.
The effects can be wide-ranging, affecting movement, speech and swallowing, as well as memory, learning and mood.
More than £3 billion is spent annually on neurological services – more than 3.5% of the annual NHS spend – along with 14% of the social care budget, yet individuals with neurological long-term conditions are reported to have the lowest health-related quality of life of any long-term condition.
“At the moment, £750 million is spent on urgent and emergency care for patients with neurological conditions. including admission to hospital, with 3.6% growth in emergency admissions year on year,” explained Dr Kipps.
“Many conditions involving the nervous system have a long-term impact on quality of life and needs for treatment and care vary over time depending on individuals and their form of disease.
“People with neurological conditions need a wide range of services, including health, social services, employment, benefits, transport, housing and education, but what they need can change, particularly if their health rapidly deteriorates or fluctuates.
“As a result, there is often a mismatch between the needs of patients and their caregivers at different stages in their illness and the clinical and social care support services needed to help them properly.”
Dr Kipps and his team will use surveys and focus groups with patients and carers to find out more about the factors and events that predict care needs and the various problems that might lead to an increase in support.
“By identifying the baseline factors predicting care need and events that increase this need we aim to improve efforts to work out who needs higher levels of support and how best to match this need to service delivery,” he said.
“We are particularly interested in identifying the effect of fatigue on the need for support and the effect it has on the ability to self-manage long-term neurological conditions.”
The study, which is sponsored by the University Hospital Southampton NHS Foundation Trust, is being supported by the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC).
For more information, please contact the research team at NeuroLTC@soton.ac.uk or on 07393762105 or visit www.clahrc-wessex.nihr.ac.uk/theme/project/71.
Posted on Monday 5 February 2018