NEURO NEWS

The latest UK MS prevalence figure, which estimates the number of people living with MS at any one time, is now estimated to be over 150,000. The previous figure, based on data from 2019, was more than 130,000. The sharp rise is thought to be due to a combination of factors, including better diagnosis and people with MS living longer, rather than an increase in the risk of developing MS.

The new data also shows:

• All four UK nations have seen a rise in the number of people living with MS

• There’s been a 15% increase in England, 10% in Scotland, 9% in Northern Ireland and 8% in Wales

• More than 7,100 people are diagnosed with MS each year

• Around 135 people are told they have MS every week

• 71% of people with MS are women, meaning women are 2.5 times more likely than men to be diagnosed with MS

• People are most likely to be diagnosed in their 30s and 40s

Experts say the new figure raises further concerns over how under resourced NHS neurology services are. The UK currently ranks 44 out of 45 European nations for the number of neurologists for each person with a neurological condition. The MS Society is calling for shortages in neurologists and MS nurses to be addressed by the Government.

Jane Hawkes, 48, from Gloucester, is better known as consumer affairs expert and media personality ‘Lady Janey’. Jane was diagnosed with relapsing MS at 24 whilst working a busy role as airline cabin crew. Her condition is unpredictable, but her main symptoms include fatigue, bladder issues and cognitive problems.

Jane says: “As the number of people living with MS in the UK increases, services need to increase. Right now, the NHS is under so much pressure and I want to be considerate by not bothering my MS team. That means I’m inclined to leave my symptoms for longer before seeking help, which can sometimes make problems worse. Facilities should be there to raise concerns earlier.

“My MS team as I knew it is not there anymore, and my consultant can only see me every two years. The MS nurse left almost a year ago and I’ve only just managed to speak to my new one about my MS symptoms and medication because demand is so high. Not getting the right help can cause undue stress, anxiety and upset, which in turn can aggravate MS. It’s really important that neurology services are prioritised.”

Emma Tallantyre, Consultant Neurologist at the University Hospital of Wales, says: “As neurologists, it’s vital that we have up-to-date figures on the incidence and prevalence of MS to inform our service planning and our clinical research.

“This new data gives credence to a feeling we’ve all had: that MS is becoming more rather than less prevalent in the UK. And it indicates that our services need to grow in order to adequately serve the needs of our patients. So this is a good step forward, and in the future we would welcome even more data to help us understand who is living with MS. For example, we would benefit from more data on the ethnic diversity of people living with MS.”

Sarah Rawlings, Executive Director for Research and External Affairs at the MS Society, said: “These new figures show the number of people living with multiple sclerosis is higher than previously estimated. Worryingly, we also know the support people rely on is decreasing and we’re hugely concerned about what that means for the MS community.

“We now know over 150,000 people are living with MS. Most are diagnosed in their 30s or 40s, but it can affect people of all ages, and all ethnic backgrounds and genders. Symptoms are different for everybody and often invisible. We’re calling on local NHS leaders and political parties to take urgent action to commit to improving health and care services for people with MS. Services must meet the needs of people both where they live and across the UK, too many are struggling to access the treatment and care they desperately need.”

Together with the MS Society, Neurological Alliance and other MS and neurological organisations, we are calling for:

• A Neurological Taskforce to be set up to push forward plans to build a sustainable health and care neurology workforce.

• Everyone with MS to be able to access timely and effective diagnosis, treatment and support to manage their symptoms.

The figures were published by the MS Society and established using data from The Health Improvement Network (THIN) Database (a Cegedim Property Database). This work uses data provided by patients and collected by the NHS as part of their care and support.