Kripen Dhrona, Chief Executive Officer at The British Polio Fellowship has signed an open letter to the Secretary of State, calling for neurological conditions to be included as part of the proposed Major Conditions Strategy.
The letter, written and coordinated by the Neurological Alliance, has been signed by around 40 charities, all focused on improving care and support for those affected by neurological conditions.
The letter reads as follows:
Major Conditions Strategy – Improving treatment, care and support for people affected by
neurological conditions
Dear Secretary of State,
At least one in six of us live with a neurological condition such as epilepsy, multiple sclerosis (MS), dystonia, functional neurological disorder (FND), motor neurone disease (MND), headache or stroke. Yet too many cannot access the right care and treatment at the right time – there is significant unwarranted variation in service provision throughout England. We are writing to you to ask for a meeting to discuss how neurological conditions will be addressed in the new ‘Major Conditions Strategy’.
As a coalition of over 90 organisations and professional bodies working to improve services for people affected by neurological conditions, we welcome commitments to publish the long-term workforce strategy shortly and actions set out in the England Rare Disease Action Plan to improve support for people with rare conditions, including rare neurological conditions. However, we are concerned that, at present, the proposed ‘Major Conditions Strategy’ omits many neurological conditions. This is a significant omission as these conditions affect millions of people in England and have a significant impact on quality of life, personal independence and our economy.
In your statement to the House of Commons regarding the proposed strategy you said, “Our approach will be rooted in the best understanding of the evidence to tackle the major conditions which contribute to the burden of disease in England, namely: cancers; cardiovascular diseases, including stroke and diabetes; chronic respiratory diseases; dementia; mental ill health; and musculoskeletal disorders.” Neurological conditions intersect across these themes.
Research shows that:
- The likelihood of having a co-morbid mental health condition is high for people living with a neurological condition, and mental, emotional and cognitive health problems are often
caused by physical damage to the brain or atypical biological characteristics within the
brain.
- Brain tumours are the biggest cancer killer of children and adults under 40
- Women with the neurological condition neurofibromatosis type 1 have an increased risk of
breast cancer.
- Around three in 10 people with Parkinson's have Parkinson's-related dementia at any one
time.
In addition:
- Neurological conditions are a leading cause of disability and mortality: Neurological
conditions are the leading cause of disability worldwide and the second leading cause of
death globally, accounting for approximately 9 million deaths per year. The global toll of neurological conditions now exceeds that of all other diseases, such as cardiovascular diseases. As global populations continue to grow and age, the impact is set to increase.
- They have a significant economic impact: In 2020, the total cost of neurological
disorders in Europe was $1.06 trillion, equivalent to the cost of heart diseases, cancer and
diabetes combined. The World Health Organization estimates that half of the worldwide
economic impact of disability will be due specifically to brain-related conditions by 2030 if we do not change this trajectory.
- There are opportunities to improve treatment, care and support: In 2020/21, 6 out of 10
neurological admissions in England were an emergency, many of which could have been
avoided through appropriate specialist support at the right time. In parallel, huge strides
have been made in our understanding of neurological conditions and how best to treat them. With exciting treatments so close, we must ensure that we have the right services and
workforce in place to deliver them and change lives.
Neurological conditions, including neuromuscular and neurodevelopmental conditions, affect millions of people in the UK at a cost of billions of pounds. For too long, neurosciences have been at the back of the queue of Government priorities in health and social care. There is a clear alignment between neurological conditions and the stated aims of the proposed Major Conditions Strategy, offering a vital and long overdue opportunity to transform treatment, care and support for the one in six of us with a neurological condition.
We would welcome the opportunity to meet with you and your team to ensure the Major Conditions Strategy helps to meet this aim.
We would welcome the opportunity to meet with you and your team to ensure the Major Conditions Strategy helps to meet this aim.
Yours faithfully,
Georgina Carr
Chief Executive
The Neurological Alliance (England)