Patient Experience Survey for people living with a neurological condition in England

The Neurological Alliance has launched a new patient experience survey for people living with a neurological condition in England. The survey opened on June 30 2016 and will remain open until September 30, and is open to anyone with a neurological condition living in England.

A good understanding of the issues and concerns of people living with neurological conditions is essential to delivering improved services. The survey aims to collect vital information about the experiences of people affected by neurological conditions, including the quality of the treatment, care and support that they receive.

Alongside the outputs of Public Health England’s Neurology Intelligence Network, which has published a range of data and analysis on neurological conditions, services and outcomes over the past three years, the patient survey data supports the objective of filling the gap that exists around reliable sources of neurology data at the national level. It will help us to understand how much progress has been made in improving neurological services, and which areas to focus on for improvement.

The survey questions address issues covering the whole pathway of neurology services, from initial diagnosis and referral to ongoing care, treatment and support, both in and out of hospital. In addition, the survey looks beyond health services to a range of other issues affecting neurology patients, including access to social services, welfare benefits, suitable housing, and assisted living technologies.

The results of our first patient experience survey, conducted in 2014, were published in 2015 as The Invisible Patients: Revealing the state of neurology services. The survey data we collected has been invaluable in providing evidence and examples to support a wide range of campaigning activity on behalf of people living with neurological conditions. We intend this year’s survey to produce an even richer source of data which will set out a comprehensive picture of your experience of neurological services and make recommendations about how care can be improved.

We welcome all support to publicise and raise awareness of the survey in order to generate as high a response rate as possible, which will in turn lead to a richer and more valuable source of evidence and information. A printable flyer with QR code is available to download along with an FAQ document about the survey process. You can also follow the Neurological Alliance on Twitter at @NeuroAlliance, where we regularly post tweets and updates about the survey’s progress.

The survey has already received almost 2,500 responses in less than a month, so we are well on the way to producing a valuable new source of data and intelligence on neurological conditions and those who live with them. The final survey data will feed into a written policy report by the Neurological Alliance, as well as being made publicly available for additional analysis. We hope that this survey will improve our understanding of the reality of living with a neurological condition, and ultimately enable the development of more effective and responsive services.

Alex Massey

Alex Massey is Senior policy and campaigns adviser at the Neurological Alliance. He has previously worked as a policy adviser at ACEVO, the charity leaders’ network, and as a Research Fellow for education at the think-tank Policy Exchange.

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  1. Anna says:

    I have epilepsy and for most of my life I have felt independent and able to cope with the medication and the dificult times.

    Now that I am 55 I am gradually realizing that in many very small ways I have become timid and afraid. I do not perceive myself as anything other than the daring child I was by nature when the epilepsy started aged 13.The reality is that experience of the changing nature of the condition and the lack of confidence which creeps on ever so slowly means that a set back terrifies me.

    I believe that if there had been more talking in the early days – if my parents had been educated about the condition and told to discuss it within our family, my ability to cope would be better because I would have had decades of discussion to draw on.

    This seems obvious to me as a mother with children in their thirties now. I would have discussed a medical condition like this with them.

    Perhaps advice is there now. I hope so.

  2. Mrs. Bowen says:

    There is a lack of support for patients with neurological conditions.
    Parents with disabled children with neurological conditions are badly under supported, cerebral palsy and MS being examples. Often patients with neurological illness are supported by family and friends. The needs of these families are not identified and acted upon. Parents/carers who support their children should in turn receive support to keep them stronger and more able.
    I believe your survey should include the views of the supporters of neurological patients. Many neurological conditions are “hidden”; that is the disability cannot be seen ( migraine and raised intracranial pressure are examples); this presents particular problems. Diagnosis is often difficult. The level of disability these conditions cause is often not appreciated. All of the above issues should be highlighted.

    • NHS England says:

      Dear Mrs Bowen,
      Thank you for your comment. Neurological alliance hope that their survey results and forthcoming report will help to highlight and provide more evidence on the issues you have mentioned. Carers and supporters of people with neurological conditions play a hugely important role and will be part of their survey analysis, and they will be looking to focus on this more strongly in future pieces of work.
      Kind regards,
      NHS England

  3. Keith Archer says:

    I’d be most happy to contribute to thisd Patient Experience Survey. I have had an idiopathic peripheral neuropathy for many years now.

  4. Liz Blows says:

    Why is Stiff Person Syndrome not on your list of neurological conditions?

    • Alex Massey says:

      Hi, we used the Neurology Intelligence Network’s disease classification codes which do not include SPS, but we will look at including it in future versions of the survey

  5. Margaret blackmore says:

    My husband has benign brain tumours and neurological damage following a brain abscess. Yearly checkup at southmead hospital and a weeks respite. Wheelchair user and has seizures. Have found one out of county brilliant day unit Paul’s Place but it is a tiring journey other support. Just trying royal British legion.

    • NHS England says:

      Dear Margaret,
      Sorry to hear about your issues around support its really important that you complete the patients survey so all experiences are captured.
      Kind regards,
      NHS England

  6. dr david sollis says:

    Hello Alex, have you seen our report around neurological diagnosis in Essex?
    I would be happy to discuss further. Also North East Essex CCG are under taking a short piece of work around the hospital services for Neuro patients.
    let us know if you need anything be good to see our work helping yours nationally.

    • NHS England says:

      Dear Dr Sollis,
      Thank you for your comment, your link and comment has been forwarded to Alex Massey.
      Kind regards,
      NHS England