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17 March 2017

Survey shows patient experience of neurology services - including epilepsy - has deteriorated

A survey of thousands of neurology patients, including more than 500 people with epilepsy, has shown that services to diagnose, treat and provide care are worsening across the spectrum of neurological conditions.

And Epilepsy Society's chief executive Clare Pelham has stressed the need to tackle the issue with a common sense approach that directs money at patients, not bureaucracy.

Data shows that patient experience in every area – time taken to receive a diagnosis, access to specialists, on-going care – has significantly deteriorated in the last two years.

Survey results

The survey, carried out by the Neurological Alliance - an umbrella body for 80 organisations including Epilepsy Society -shows:

  • 42 per cent of patients saw their GP five or more times before seeing a neurological specialist - this is an increase from 31.5% in 2014
  • the number of patients who feel involved in making choices about health services to at least some extent dropped to 63 per cent in 2016 from 71% in 2014
  • only 56 per cent of patients feel their health and care professionals work well together at least some of the time, against 67 per cent in 2014

Graphic illustrating the number of times a patient sees GP before referral to neurologist

Graphic illustrating the number of patients who feel involved in making choices about health services to at least some extend


Graphic illustrating the number of patients who feel their health and care professionals work well together at least some of the time

With the number of neurological cases in England estimated to be 12.5 million, the Neurological Alliance is now calling for neurology to be prioritised within the NHS and for opportunities to be seized to improve the system.

Recommendations for improvement

The Alliance’s recommendations in the survey report cover four key areas:

  • Addressing delays in diagnosis
  • Improving access to information, care planning and coordination
  • Local engagement and prioritisation
  • A long term commitment to improvement.

Addressing delays in diagnosis would include developing better training programmes and resources for GPs to support the forthcoming NICE clinical guidelines for suspected neurological conditions, due to be published in 2018.

In the short term it recommends that patient organisations should work with Health Education England and the Royal College of GPs to better  promote existing resources to support GPs.

Epilepsy Society's response

Our Chief Executive, Clare Pelham with brown hair, smiling
Clare Pelham, chief executive Epilepsy Society 

Clare Pelham, chief executive at Epilepsy Society, said: "English science led the world in making available  ground-breaking approaches to neurological conditions. In this century and in this country we should not let that first class service to patients with conditions such as epilepsy, slip back to a third or fourth class service.

"Straightforward improvements to reduce delays in diagnosis, for example, will relieve understandable stress and anxiety in patients.

"We are not asking for more money, we are asking for better spent money. Money that is focused on the patient, not a bureaucracy."

Sarah Vibert, Neurological Alliance chief executive, said: “The NHS crisis hitting the headlines this year has been happening in neurology for years. We want to use what we’re learning from the survey to improve the experience of neurology patients. I hope that by 2018 we can report a turnaround in patient experience.”

Neurological Alliance chief executive Sarah Vibert with red hair, smiling

Sarah Vibert, Neurological Alliance chief executive

Mental health and neurological conditions

A fifth recommendation, addresses the mental health needs of those with a neurological condition. With such a high proportion of neurology patients also experiencing mental health conditions such as anxiety and depression, the Neurological Alliance sees this as an area to be given more consideration. The organisation will undertake further research and publish a separate report on mental health and neurology later this year.

Signs of hope

The report also stresses that there are some encouraging signs of hope for neurology:

  • the establishment of a National Neuro Advisory Group
  • redevelopment of the specialised neurology service specification
  • the dissemination of RightCare Neurology Focus Packs to Clinical Commissioning Groups
  • and development of a new NICE guideline for suspected neurological conditions in primary care.

The report emphasised: "These opportunities for neurology must be seized and implemented, with commitment from both the Department of Health and NHS England."

The Patient Experience Survey first ran in 2014 and was repeated in 2016. The survey had 7.048 responses. It will be repeated again in 2018.

Read the full patient experience report - Falling Short - How has neurology patient experience changed since 2014.

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