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Can you help research into a range of Neurological Conditions? We need help with a survey on Motor Neurone Disease, Parkinson's Disease, Huntington's Disease, Multiple Sclerosis and Epliepsy

3 November 2017

A research team based at University Hospitals Southampton NHS Foundation Trust is working on how care and treatment for people with a long term Neurological condition can be improved.

The team are looking particularly at Parkinson's Disease, Huntington's Disease, Motor Neurone Disease, Multiple Sclerosis and Epilepsy.

Dr Christopher Kipps is a consultant Neurologist and is leading the research team. He says: "Many neurological conditions have a long-term impact on quality of life with varying requirements for care and treatment over time. This means a gap or mismatch can develop between what a patient needs at particular stages in their illness and the care that they receive. The basic factors and critical events that help to predict the care needed for people living with a long term neurological condition are poorly understood."

The research aims to survey people with one of the five conditions, alongside anyone who cares for them or may have cared for someone with the condition in the past.

There are two parts to the survey which each take around 20 minutes to complete online or over the phone. The first part examines what experiences people have around care, and the second looks at the issue of fatigue.

The idea is to build up a better picture of the way people and carers of people with one of the five neurological conditions experience care and fatigue.

Previous work by Dr Kipps and his team has provided an invaluable insight into the progression and trigger events leading to hospital care for people with neurological conditions, and it is hoped can lead to earlier interventions to prevent hospital admissions and improve quality of life.

If you or someone you know has experience of Parkinson's Disease, Huntington's Disease, Motor Neurone Disease, Multiple Sclerosis and Epilepsy, then please consider taking time to take part in the survey as it can help care for people in the future. The team would like to talk to you if you live in Hampshire, Isle of Wight, Sussex, Dorset, Somerset, Devon, Berkshire or Surrey.

You can take part by going to the survey link at http://bit.do/NeuroLTC

Or you can click on the QR code on this article

Overloaded A&Es – Have we got this all wrong? Dr Brad Keogh

Why do we need evidence? At a time when the NHS has limited resources and increases in demand for its services, it seems prudent to only make changes to the service once you are reasonably certain that what you might do may be in the interest of the patients and staff in the system. By enforcing top-down changes to services with little or no evidence of benefit to patients or staff we are using more of this precious resource for no clear benefit. As an engineer coming into the healthcare sector several years ago to do data analytics, it has always surprised me how few decisions in the management of NHS services are made with robust quantitative analysis. It is also a contrast to the evidence based decision making and protocols within medicine. My thought for you: “why can’t we have evidence based service management as well as evidence based medicine?“ read blog >

Patient and public involvement is vital to the success of the CLAHRC.

We would be pleased to hear from you if you are interested in becoming involved in our research and implementation.

How can I get involved?