14th March 2017

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

Today the Neurological Alliance releases its new report: Falling Short – How has neurology patient experience changed since 2014? This shares the findings of a survey carried out by the Alliance last year, with responses from thousands of neurology patients. The report reveals that services to diagnose, treat and provide on-going care are failing patients across the spectrum of neurological disorders.

The Neurological Alliance is now calling for neurology to be prioritised within the NHS and for new opportunities to improve the system to be 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 2012/13, 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’e 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 report reveals that not only is neurology patient experience of care consistently falling short, 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.

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 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 full report is available for free: Falling Short – How has neurology patient experience changed since 2014?

Further information can be found in the press release

About the 2016 survey

This is the second time we have run this survey, the first being in 2014, resulting in the publication of The Invisible Patients: Revealing the state of neurology services in January 2015.

The survey was launched at the end of June 2016 and remained open until 30 September 2016.

The survey had 7,048 responses.

The survey covered England only.

A full list of the survey questions is available here: Patient experience survey questions 2016

Condition-specific data has been shared with many Neurological Alliance member organisations for further, more detailed analysis of the experiences of patients living with particular conditions.

Making the data available

The 2016 neurological patient experience survey produced a wealth of data which we are committed to sharing with the neurological community, in order to support better understanding of neurological services in England.

In order that we were able to ensure the data captured during the report was made publicly available, we made extensive efforts to ensure the data we collated was entirely anonymised. First, we removed identifiable fields from the patient experience survey, such as demographic data and free text boxes.

Second, we removed conditions where no prevalence figure was available and redacted responses for these conditions. Even where incidence figures are known for a condition, we felt it important that people could only access information where it is stated with certainty that there is a large enough patient population within each area to avoid identification.

The removal of free text boxes and of data for certain conditions, replaced with a statement, ensures that specific clinicians, providers or timeframes are not mentioned, which could otherwise lead to the identification of a particular respondent.

These steps led to the removal of 1010 responses from the database, which means the vast majority of information is publicly available. For those conditions where information has been redacted we will discuss with the relevant associations how they may have access to the data, if they wish to, and will make arrangement for appropriate guarantees of confidentiality.

Neurological conditions affect people regardless of age, gender, ethnicity or geographical location. Broadly indiscriminate and often long-term and irreversible in their impact, the demographic for a neurological patient is often hard to pinpoint and define with clarity and consistency. This document puts a face on the population responding to our survey and provides a simple list of the number of responses by condition.

Neurological patient experience survey dataset from 2016

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