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New Neurological Alliance report: how has neurology patient experience changed since 2014?

Posted on 14 March 2017 by Helen Robbins

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A survey of thousands of neurology patients reveals that services to diagnose, treat and provide on-going care are failing patients across the spectrum of neurological disorders.

The following information is a Press Release from the Neurological Alliance The Neurological Alliance is now calling for neurology to be prioritised within the NHS and for new opportunities to improve the system to be seized and implemented.

Analysis of the new survey data shows that patient experience in every area – the time taken to receive a diagnosis, access to specialists, on-going care and support – has significantly deteriorated in the last two years. With the number of neurological cases in England estimated to be 12.5 million and NHS expenditure on neurology amounting to £4.4 billion in 2012/131, this is a troubling finding, which potentially impacts millions of people.

Sarah Vibert, Chief Executive of the Neurological Alliance, said: “The NHS crisis hitting the headlines this year has been happening in neurology for years. We want to use what we are learning from the survey to improve the experience of neurology patients and we are challenging the whole system to work together – along with the Neurological Alliance and its members – to ensure that by 2018 we are reporting a turnaround in patient experience.”

“The Alliance’s work has consistently found that patients want the same things – a timely and accurate diagnosis, support throughout the process and to be informed about treatment and care. This research reveals that not only are neurology patient expectations of care not being met, but that experience of care is worse across all key measures since our inaugural patient experience survey”, said Neurological Alliance Chair and Chief Executive of Tourette’s Action, Suzanne Dobson.

The Neurological Alliance, the collective voice for 80 organisations working to make life better for those with a neurological condition, carried out the survey over a three-month period last year as a follow-up to their first patient experience survey in 2014.

Examples of poor patient experience high-lighted by the data include:
• 42% of patients saw their GP five or more times before seeing a neurological specialist - an increase from 31.5% in 2014
• Patients who feel involved in making choices about health services to at least some extent dropped to 63% in 2016 from 71% in 2014
• Only 56% of patients feel their health and care professionals work well together at least some of the time, against 67% in 2014

However, there is hope on the horizon with the emergence of encouraging signs 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. These opportunities for neurology must be seized and implemented, with commitment from both the Department of Health and NHS England.

More specifically, the Neurological Alliance’s recommendations in the survey results report cover four key areas:
• Addressing delays in diagnosis
• Improving access to information, care planning and coordination of care
• Local engagement and prioritisation
• A long term commitment to improvement

The report can be downloaded for free here

A fifth recommendation addressing the mental health needs of those with a neurological condition is included in the report. With such a high proportion of neurology patients having a co-morbid mental health condition, the Neurological Alliance sees this as an area to be given more consideration. The organisation has committed to undertaking further research and will publish a separate report on mental health and neurology later this year.

The Neurological Alliance will be running the patient experience survey again in 2018. Their hope is that services for those with neurological conditions – those currently living with a condition and those yet to be diagnosed – will be improved and lives transformed with better understanding of and support for these conditions.


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New Neurological Alliance report: how has neurology patient experience changed since 2014?

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