Our priorities

What people with neurological conditions want

Our research shows there are four issues that are most important to people with neurological conditions.  These can be summarised as follows:

  1. ‘I received a timely and accurate diagnosis and was given the support I needed throughout the process.’
  2. ‘I feel informed about my treatment and care which is simple to arrange and enables me to live life as I choose.’
  3. ‘My treatment and care is excellent.’
  4. ‘I see scientific innovations benefitting me and my family.’

What people with neurological conditions experience

Yet evidence shows that these statements are a long way from being a reality for most neurology patients. Our 2016 patient experience survey found:

There are significant delays in referral to specialists and diagnosis of a neurological condition: 42% of patients report seeing their GP five or more times before seeing a neurological specialist. Almost 20% of patients waited more than 12 months to see a neurological specialist after first seeing a GP

Communication between people with neurological conditions and the people providing care is poor: just 52% of patients felt their diagnosis was communicated appropriately.

Care for people with neurological conditions is not joined up: 82% of patients have not been offered a care plan. Only 56% of patients feel the people providing their care work well together at least some of the time.

Information is not routinely provided to people with neurological conditions: 45% were unsatisfied with information they have received about their condition.

There are geographical variations in access to services and quality of services: 13% reported health services to meet the needs of a neurological condition as ‘excellent’.

What we are calling for

  1. Neurology to be proportionately prioritised in national accountability and incentive frameworks in order to support greater engagement by commissioners at regional and local level.
  2. Better collection and availability of data in order to develop baselines and measure progress.
  3. All people with neurological conditions to be offered a care plan and named care coordinator.
  4. The National Neuro Advisory Group to be properly resourced in order to provide sustainable national leadership and deliver long term change.
  5. A comprehensive workforce plan to meet existing and future demand for neurological services.
  6. The needs of neurological patients to be taken into account when planning mental health services.

Our strategic priorities to 2020

  • Inform and lead the national policy agenda to drive neurology service improvement.
  • Empower and support members to drive collective action that raises the profile of neurology and the issues facing people with neurological conditions.
  • Improve the collection, analysis and use of data to provide a robust evidence base to inform improvement of neurology services.
  • Influence the development of local and regional commissioning strategies to ensure neurology is included and proportionately prioritised.

See also:

CURRENT WORK
OUR IMPACT