Much of our work in this strand is focused on long-term neurological conditions. These are progressive disorders which affect approximately 10 million people in the UK. In early stages of disease treatments seek to reverse the disease process, and for many conditions people can live well and with a normal life expectancy. But unfortunately for many the disease becomes progressive. In these instances and in late stage disease people often experience profound symptoms, deterioration in their quality of life and emotional, social and spiritual concerns. There is often a need for lifelong support from health and social care services. Caregivers often bear the brunt of providing support.
For this reason we have developed a joint programme of work, bringing together neurological, rehabilitation and palliative care to tackle the many problems experienced by people with long-term neurological conditions. In this programme of work we have studied the symptoms and problems experienced by people with neurological conditions. These have been studied specifically over time. For example, a longitudinal study of symptoms and quality of life in late-stage Parkinson’s syndromes (Higginson et al, PloS One 2012; 7(11): e46327). In addition we have been developing and trialling new models of care to better meet the needs of people with neurological conditions- see for example our trial of short-term palliative care for people with multiple sclerosis. After this Phase II trial of short-term care in multiple sclerosis we are now planning a multicentre Phase III trial which will test a new model of short-term integrated palliative care, for people with Parkinson’s disease, multiple-sclerosis and motor neurone disease.
Linked to our programme of work on better meeting preferences of choice and home care we have studied place of death and its relationship to underlying cause of death in Parkinson’s disease, motor neurone disease and multiple sclerosis (Sleeman et al, Palliative Medicine 2013 June 4th).