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World first clinical trial could improve lives of people living with long-term neurological conditions

A world-first study to find out whether patients with serious neurological conditions would see an improvement in their symptoms as a result of earlier intervention by palliative care teams has just opened in King’s College Hospital.

The national study, funded by the National Institute for Health Research (NIHR), and led by a team from the Cicely Saunders Institute at King’s College London, recruited its first patient in April from King’s College Hospital. The study will assess the effectiveness of palliative care interventions in patients with long-term neurological conditions, which affects more than 10 million people in the UK.

This is the first time in the world that the effectiveness of palliative care for patients with long-term neurological conditions has been properly trialled. It is hoped that, if care of this kind proves effective, that it could radically transform the way in which patients with these conditions are treated.

In addition, the research will discover much more about the needs and concerns of people affected by long term neurological conditions such as Parkinson’s disease, Multiple Sclerosis and Motor Neurone Disease.

Palliative care provides an additional layer of support for people living with advanced illness. At present, patients with neurological conditions are offered palliative care only when their illness is at a very advanced stage or at the end of life. This often means their symptoms, emotional, social and spiritual needs are not properly addressed, leading to suffering for them and their families.

The aim of the OPTCARE Neuro study is to find better and improved ways of providing care. It will find out whether patients and their families would benefit from a short-term integrated palliative care service– in particular, whether the service will help people to live as well as possible, despite their illness. People taking part in the study will have three visits from a specialist palliative care team over a period of 12 weeks.

The study involves five centres across the UK. King’s is leading the research together with centres in Nottingham, Liverpool, Cardiff and Brighton/Sussex.

Professor Irene Higginson, Chief Investigator of the study, who holds positions at King’s College Hospital and King’s College London, said it had the potential to change the way we treat patients living with neurological conditions: ‘The quality of life for patients with long term neurological conditions is vital, and yet we don’t do enough to improve it. We want to test whether by providing earlier palliative care we can improve the quality of life for patients and reduce the stress on them and their families.  We are excited about the potential benefits this study may have for our patients, and those around the world.’

David Charlton has Parkinson’s disease. He said: ‘Most people think of Parkinson’s Disease as a movement disorder and are unaware of the many potential non-motor symptoms such as loss of sense of smell, constipation, sleep problems, depression, anxiety and cognitive impairment. As each patient will display a unique combination of motor and non-motor symptoms there will be an increasing need as the disease progresses, to treat these collectively to maintain the best quality of life possible.

As a Parkinson’s patient, I welcome the OPTCARE Neuro study as it will promote the taking of a holistic approach to treating the range of symptoms suffered by people with PD or other neurological diseases. I also believe that the study will help to identify how these treatments can be integrated to maximise their benefits.

I believe that it is vital that patients with progressive and incurable neurological conditions, fight the progression of their disease. Taking part in research studies such as OPTCARE Neuro is one way of doing this. Furthermore, most of the medications used to treat my PD have only been approved after research and trials on other patients. I think it only fair, therefore, that I also participate in research projects.’

For further information about the study, you can visit the King’s College London website. 

Notes to editors:

1. King's College London is one of the top 20 universities in the world (2014/15QS World University Rankings) and among the oldest in England. King's has more than 26,500 students (of whom nearly 10,400 are graduate students) from some 150 countries worldwide, and nearly 6,900 staff. The university is in the second phase of a £1 billion redevelopment programme which is transforming its estate.

King's has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF) King’s was ranked 6th nationally in the ‘power’ ranking, which takes into account both the quality and quantity of research activity, and 7th for quality according to Times Higher Education rankings. Eighty-four per cent of research at King’s was deemed ‘world-leading’ or ‘internationally excellent’ (3* and 4*). The university is in the top seven UK universities for research earnings and has an overall annual income of more than £600 million.

King's has a particularly distinguished reputation in the humanities, law, the sciences (including a wide range of health areas such as psychiatry, medicine, nursing and dentistry) and social sciences including international affairs. It has played a major role in many of the advances that have shaped modern life, such as the discovery of the structure of DNA and research that led to the development of radio, television, mobile phones and radar.

2. King’s College Hospital NHS Foundation Trust is one of the UK’s largest and busiest teaching hospitals, training over 900 dentists, 750 doctors and 300 nurses every year. The Trust is recognized internationally for its work in liver disease and transplantation, neurosciences, cardiac, haemato-oncology, stroke and major trauma.  On 1 October 2013, King’s took over the running of the Princess Royal University Hospital in Bromley and Orpington Hospital, as well as some services at Beckenham Beacon and Queen Mary’s Hospital, Sidcup. The new enlarged organisation has over 10,500 staff and provides over 1 million patient contacts a year. 9,000 babies are delivered by our hospitals each year, and over 750 patients come to our Emergency Departments every day.  For more information, please visit the website -         

3. The National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) Programme was established to fund a broad range of research. It builds on the strengths and contributions of two NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which merged in January 2012. The programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services, including costs and outcomes. The programme will enhance the strategic focus on research that matters to the NHS. The HS&DR Programme is funded by the NIHR with specific contributions from the CSO in Scotland, NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland. 

The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website.

4.  The Cicely Saunders Institute is the first purpose built institute for research into palliative care. We offer palliative care courses and other resources relevant to palliative care. Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Palliative care provides an extra level of support for patients and their families whatever their diagnosis.  The goal is the best possible quality of life for patients and their families, and includes control of pain and other symptoms, as well as attention to psychological, social and spiritual problems.

The Institute brings together academics, healthcare professionals, community organisations, patients and carers in one centre and acts as the hub for a network of international research. It offers high quality palliative care solutions to patients, as well as providing education, patient information and support. For more information, please visit our webpages.