A 2016 survey by the Neurological Alliance has found that people’s experience of neurological services has worsened since 2014. The Neurological Alliance is a group of 80 organisations in England, including Epilepsy Action. The alliance works to improve the lives of people with neurological conditions, such as epilepsy.
The 2016 survey was taken between June and September 2016 and included over 7,000 people with a neurological condition.
Compared with a similar survey from 2014, the results of last year’s research showed that respondents said time taken to receive a diagnosis was longer. The results also showed that people felt they had less access to specialist care, and less ongoing care and support. The Neurological Alliance called this a “troubling finding”, with an estimated 12.5 million neurological cases in England in 2013-14.
One of the findings of the 2016 survey showed that just under half of people with epilepsy (44%) reported one of more unplanned admissions to hospital in the last 2 years. The Neurological Alliance report called this “one of the highest rates across conditions”. The report added that with the right care, people with epilepsy should not need regular hospital admissions.
Between 2014 and 2016, fewer people felt satisfied that their diagnosis was communicated well and fewer described their care for this as ‘good’ or ‘excellent’. Also, fewer people said they thought their health professionals worked well together and fewer said they felt involved in making choices about their health services.
The Neurological Alliance said it is calling for neurology to be prioritised within the NHS. It is also stressing the need for the NHS to take any opportunity it has to improve the system.
Based on the survey findings, the Neurological Alliance has recommended that the NHS addresses the delays in diagnosis and improves access to information and care planning. It is also recommending more coordination of care, more local engagement and prioritisation of care, and long-term commitment to improvement.
Louise Cousins, campaigns manager at Epilepsy Action, said: “For too long neurological conditions, such as epilepsy, have been at the bottom of the priority list when it comes to consistent and fair healthcare services. This needs to change. Epilepsy is a life-changing condition, which casts its shadow far wider than simply ‘having seizures’. Epilepsy can impact on a person’s social life, relationships and work and education opportunities, and leave many people feeling lonely and isolated. With timely diagnosis, effective care planning and more epilepsy specialists, the negative impacts of living with the condition could be vastly reduced.”
There is more information about the patient experience survey at the Neurological Alliance website.
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