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:
- ‘I received a timely and accurate diagnosis and was given the support I needed throughout the process.’
- ‘I feel informed about my treatment and care which is simple to arrange and enables me to live life as I choose.’
- ‘My treatment and care is excellent.’
- ‘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
- Neurology to be proportionately prioritised in national accountability and incentive frameworks in order to support greater engagement by commissioners at regional and local level.
- Better collection and availability of data in order to develop baselines and measure progress.
- All people with neurological conditions to be offered a care plan and named care coordinator.
- The National Neuro Advisory Group to be properly resourced in order to provide sustainable national leadership and deliver long term change.
- A comprehensive workforce plan to meet existing and future demand for neurological services.
- 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.