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

27th February 2019

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 is taking place at King’s College Hospital in London.

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, 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 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, Director of the Cicely Saunders Institute at 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.