26th November 2017

Neurological Alliance speaks out about poor patient experience

A survey undertaken earlier this year by the Neurological Alliance reveals that patient experience has significantly deteriorated in the last two years. Today the Neurological Alliance speaks to BBC Radio 5 about our findings and the changes we want to see in response. This is the second time the Neurological Alliance has run this survey, the first being in 2014.

Listen again to Neurological Alliance Chair, Suzanne Dobson speaking to Adrian Goldberg on BBC Radio 5 Live

Read more on the BBC website including the story of Katie, a 17 year old with epilepsy struggling to access specialist services.

The findings of the survey show that there are significant delays in referrals of patients to specialist care with 42% of patients reporting seeing their GP five or more times before seeing a neurological specialist, up from 31.5% in 2014. We also found one in five patients are waiting 12 months or more to see a neurological specialist after being referred. This is leading to delays in diagnosis of neurological conditions. Early diagnosis is critical to reduce neurological damage, slow down the rate of disease progression, increase survival rates and improve a person’s quality of life.

We also found that communication with patients is poor. 41% believe their diagnosis should have been communicated more appropriately or was not at all appropriate. Patients also reported poor experience in terms of information provided to them, with 45% of patients saying they were unsatisfied with the information they received about their condition.

Fragmented pathways of care characterise the ongoing experience of neurology patients, with just 56% of patients reporting that their health care professionals work well together at least some of the time, down from 67% in 2014. It is now well understood that effective care planning and coordination is an essential aspect of care for people living with a long-term health condition. The impact of a neurological condition can vary widely; the same condition is experienced differently from one individual to the next, and a condition may impact differently on the same individual over time. It is therefore disappointing that 82% of patients have not been offered a care plan, up from 72% in 2014.

The report also found that the poorest patient experience is reported by those living with a co-morbid mental health condition. Prevalence data from a range of studies shows that for many neurological conditions around 50% patients are also affected by a mental health condition, often more. 13% reported health services to meet the needs of a neurological condition as ‘excellent’, yet this figure was only 5% for services to meet mental health needs. 63% of patients reported they were unsatisfied with information on sources of emotional support

In response to our survey results, the Neurological Alliance is calling for:
1. Neurology to be prioritised throughout the NHS:
a. Better inclusion of neurology in national accountability and incentive frameworks (such as the NHS Mandate)
b. Better collection and availability of data with which to understand variation and measure progress
c. Greater commissioner engagement at regional and local level
d. Better training and support for non-neurological specialists

2. The new opportunities to improve the system to be seized and implemented:
a. the new National Neuro Advisory Group must be properly resourced, a commitment made to it in the long term and its expertise must feed into key decisions affecting people with neurological conditions.
b. The new draft NICE guideline on suspected neurological conditions in primary care must be significantly revised to ensure it will bring about the changes required to ensure patients receive timely referral and diagnosis.

For media enquiries please contact:
Sarah Vibert

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