A big problem preventing quicker and further progress in neurological care services is a lack of data on the experiences of people with neurological conditions. If you or a loved one have experience of conditions such as multiple sclerosis, Huntington's disease, Parkinson's disease, brain injury or stroke - writes Policy and Public Affairs Manager (England) Duncan - please complete the Neurological Alliance Patient Experience Survey.
The health system and the government run on data. Without evidence on an issue, it becomes invisible – it becomes hard to understand what’s going on and even harder to work out how to make things better.
There’s not enough data on the experiences of people with neurological conditions and this is one of the big problems preventing quicker and further progress in this area. It’s a problem that the Neurological Alliance’s Patient Experience Survey is designed to address. The new version of the survey is out now, and needs as many people as possible to fill it out.
Why you should have your say
This survey is one of the most important sources of information about how people with neurological conditions are managing their conditions and navigating the health and care systems. It is open to people in England receiving support for their neurological conditions and it is the only survey of its kind in the country.
The survey is designed to gather information about the care and support people with neurological conditions experience, as well as to understand how they are engaging with social care and the benefits systems.
It’s also a really important source of information for charities working with specific neurological conditions, as the survey data can be analysed for particular conditions at the end of the process.
The more people complete the survey, the more powerful the results will be
In a world where there is very limited information about neurology, this survey is one of the few good sources of evidence that can be called on to explain what’s wrong at the moment, make the case for change, and to help shine a light on how things might be made better.
This will be the third Patient Experience Survey, and the previous surveys have been used and quoted extensively by people working in neurological policy, politicians and the NHS.
To take two examples, the figures from previous surveys have been used by the Public Accounts Committee in Parliament* and by The Neurological Alliance** in highlighting the importance of improving mental health outcomes for people with neurological conditions.
Often when you talk to people about the importance of data, their eyes start to glaze over, but it really matters here. The more people that fill in the survey, the more statistically powerful the results will be, and the stronger the case for change that can be made using it.
Share the survey
If you have a neurological condition, please take the survey if you can, and please do share it so that everyone who would like to is able to have their views and experiences reflected.
The survey runs until Thursday 17th January.
Complete the Patient Experience Survey
* Public Accounts Committee (2016). Services to people with neurological conditions: progress review.
** Neurological Alliance (2017). Parity of Esteem for People affected by Neurological Conditions: Meeting the emotional, cognitive and mental health needs of neurology patients.
Policy and Public Affairs Manager (England)