We recently launched an Urgent Appeal, asking for whatever support people can manage to help the Society through a really challenging time for our funding. 

In March the Neurological Alliance produced a report on the state of health and care services for neurological conditions across England. The ‘Falling Short’ report was based on a large-scale survey of more than 7,000 people with neurological conditions and found hugely variable levels of services for different conditions across the country.

Richie McCann has designed beautifully crafted wooden dog beds for our four-legged friends! His diagnoses of dystonia and his passion for creative furniture design led him to create something wonderful for raising funds and awareness for The Dystonia Society

The Neurological Alliance has recently published its 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.

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

More information, including a link to the report, can be found on the Neurological Alliance website


 Author and musician Lee Benson performs in memory of his brother Symon at The Jam House in Birmingham on the 24th of January.