What people with neurological conditions want
Our research shows there are three issues that are most important to people with neurological conditions. These can be summarised as follows:
- Accessible: “The speed of access to specialists must not vary depending on where I live.”
- Personalised: “Care must be tailored to my individual needs.”
- Holistic: “Care and support should be available to meet my mental and physical health needs, social care needs and my financial security.”
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 2019 patient experience survey found:
There are significant delays in referral to specialists and diagnosis of a neurological condition: 39% of respondents who saw a GP before being told they needed to see a neurological specialist saw their GP five or more times. 29% of respondents who needed to see a neurologist waited more than 12 months.
Communication between people with neurological conditions and the people providing care is poor: 23% of respondents were not given an explanation of their diagnosis, that they understood, when they were first told they had a neurological condition.
Care for people with neurological conditions is not joined up: Just 10% of respondents have been offered a care plan to help manage their neurological condition.
Information is not routinely provided to people with neurological conditions: 43% of respondents were not given written information when they were told they had a neurological condition.
The areas where people’s needs are least well met are in relation to mental health, social care and financial security: 40% of respondents report their mental health needs are not being met, 38% state their social care needs are not being met, and 43% say their financial needs are not being met.
There are geographical variations in access to services and quality of services: our STP level patient experience survey data shows wide regional variation.
Data from Public Health England also demonstrates that neurology is adversely affected by health inequalities. Deaths of people with epilepsy increased by 70% between 2001 and 2014, but mortality in the most deprived areas was nearly three times that in the least deprived. This data also shows that deaths associated with neurological conditions are 35% more likely to be premature.
What we are calling for
- A national neurology plan for England should be urgently developed
- Sustainability and Transformation Partnerships/Integrated Care Systems should include neurology as a priority area for improvement in their plans
- Person-centred care should be provided to all people with neurological conditions
- People with neurological conditions should be afforded the opportunity to live dignified, fulfilled lives, maximising their wellbeing through:
a. Resolution of the social care crisis including a long-term funding settlement
b. Redoubling efforts to tackle structural and institutional barriers to employment
c. Reform to the welfare system in line with the Disability Benefits Consortium’s calls
- Neurology should be included as a priority for mental health improvement initiatives aimed at people with long term conditions