White text on a purple background: news @NeuroAlliance

Our response to the Major Conditions Strategy call for evidence

27/06/2023

Today, The Neurological Alliance is submitting a response to the government’s call for evidence for the Major Conditions Strategy. The scope of the strategy as currently stated neglects to include hundreds of neurological conditions. Our response to the call for evidence addresses this.

All members of the Alliance were invited to input into our response directly and through an urgent meeting held in May 2023. Thank you to everyone who responded.

What our response says

Neuro conditions are major conditions

At least one in six of us live with a neurological condition. In England, over 8 million people live with headache and migraine, 580,000 people live with autism, over 600,000 people live with epilepsy, over 120,000 people live with Parkinson’s and at least 100,000 live with multiple sclerosis.

More than 150,000 people across the country live with a rare neurological condition. Millions more are impacted as family, friends and carers of people affected by neurological conditions. Numbers are growing as we age and our ability to detect neurological conditions improves.

From our latest survey of the experiences of people affected by neurological conditions, My Neuro Survey, we know:

  • Many people simply aren’t accessing the support they need.
  • 6 out of 10 adults who responded to My Neuro Survey weren’t asked about their mental wellbeing by a healthcare professional in the last year.
  • 8 out of 10 children and young people don’t have the support they need to transition from paediatric to adult care.
  • Over half of all respondents had experienced delays of over a year in accessing specialist support.

Action on neuro conditions would mean action in line with the aims of the strategy

The Secretary of State for Health and Care, Stephen Barclay, has stated that the strategy will aim to increase health life expectancy, ease pressure on the health system and reduce the number of people out of work due to ill health.

If action were taken to reduce emergency admissions across progressive neurological conditions, such as epilepsy, migraine and headache, NHS Rightcare estimates that £33.6million could be saved in healthcare costs. Importantly, thousands of children, young people and adults with a neurological condition could avoid admissions to emergency care.

People with traumatic brain injuries who receive rehabilitation once they have left an acute hospital ward cost the NHS and social care £27,800 less a year than those who don’t.

Finally, there are many links between the conditions that are identified in the strategy (cancers, cardiovascular disease, including stroke and diabetes, chronic respiratory diseases, dementia mental ill health and musculoskeletal disorders) and neurological conditions. Around three in 10 people with Parkinson’s have Parkinson’s-related dementia at any one time. Neurological conditions, including autism, Down’s Syndrome, migraine, Parkinson’s, COVID-19 and Long COVID and epilepsy are associated with an increased incidence of cardiovascular problems.

What next?

The Department of Health and Social Care will be publishing an interim report over the summer, which we will respond to. We will continue to work with the department to highlight the need for action to address the need for prompt access to the right treatment, care and support at the right time for people affected by neurological conditions, with a view to securing recommendations within the strategy that would benefit people affected by neurological conditions.