New study highlights growing number of people living with multiple sclerosis in the UK

The number of people being diagnosed with multiple sclerosis in the UK is falling but the population of those living with the disease is growing as patients are living longer, a new study at the University of Dundee has found.

Researchers say the findings have significant implications for resource allocation for MS in the UK.

Over two decades between 1990 and 2010 the number of people living with MS increased by about 2.4% a year, despite a fall in the number of people being newly diagnosed with MS over this period.

This was because people with MS are living longer – mortality rates fell by about 3% per year over the same twenty year study period.

Dr Isla Mackenzie, Clinical Senior Lecturer at the Medicines Monitoring Unit (MEMO) at the University of Dundee, led the study. She said, “Our research covers four million patients from a representative sample of GP practices spread throughout the UK. This study provides an up to date national picture of the epidemiology of MS in the UK.

“It is important to have this information on the prevalence of MS in order to understand the impact of this disease and to ensure that adequate resources are provided both nationally and regionally for people affected by MS.”

The researchers estimate that, in the UK, just over 6,000 people were diagnosed with multiple sclerosis (MS) during 2010 and there were nearly 127,000 people living with the condition.

The peak age at which MS was diagnosed was between 40 and 50 years. MS is much more common in women than in men – 72% of people living with MS in 2010 were women. MS is also more common in Scotland than in other regions of the UK.

Dr Jonathan O’Riordan, Consultant Neurologist at Ninewells Hospital, Dundee, said, “There are probably genetic and environmental factors at play to explain why it is more common in Scotland.

“The vast majority of newly diagnosed patients will have the relapsing remitting form of the disease and will be eligible for consideration of disease modifying therapies. These can cost anywhere from £5,500 to nearly £20,000 per year. This has ongoing cost implications for health care providers.”

The study used data from the General Practice Research Database (GPRD) which contains patient records from 8% of GP practices in the UK.

The study was funded by the Multiple Sclerosis National Therapy Centres (MSNTC), a registered charity. Neil Kemsley, Chairman of MSNTC, said, “As more people in the UK are living longer with MS, the help and support provided by the network of Therapy Centres throughout the country will become even more valuable and important in helping them to achieve the best possible quality of life.”

Mr David Pullar, who was diagnosed with MS when he was 20 years old, is a member of the MS Therapy Centre Tayside in Dundee. His diagnosis coincided with the opening of the Tayside Centre and in fact Mr Pullar was the first person to use the Centre in 1982. He has been attending there at least once a week ever since.

“I would be lost without the Centre,” said Mr Pullar. “I use oxygen treatment and physiotherapy and feel that both benefit me enormously. I find that if I go away on holiday and don’t go to the Centre for a week or more I begin to feel lethargic, but once I have oxygen treatment I pick up. I also can’t speak too highly of the benefits of physiotherapy. Not only does it help me physically but it also has mood enhancing effects.”

Mr Pullar also emphasised the importance of the social side of the Centre and being able to meet other people living with MS. “I used to visit the Centre twice a week but for the last six months I have only been able to go once a week because of the costs of transport. I would love to be able to go twice a week if I could,” he added.

Notes to editors

Incidence and prevalence of multiple sclerosis in the United Kingdom 1990-2010: A descriptive study in the General Practice Research Database. I S Mackenzie, S V Morant, G A Bloomfield, T M MacDonald, J O’Riordan, Journal of Neurology, Neurosurgery and Psychiatry

About multiple sclerosis

Multiple sclerosis (MS) is neurological disease in which the myelin coating the nerve fibres is damaged, causing a range of symptoms. It is an important health problem which can lead to high levels of disability and impaired quality of life. Interventions to help patients manage their symptoms include drugs, exercise and physiotherapy, diet and alternative therapies but at present there is no cure for MS.

About MS Therapy Centres

There are more than 60 independent Therapy Centres spread across England, Wales, Scotland and Ireland which provide a range of non-drug services for people affected by MS. Each MS Therapy Centre is an individual charity which relies on dedicated volunteers and donors who give freely of their time and money to help people with MS. A high proportion of Centre directors/trustees are people affected by MS, reflecting their motto: “self-help is our way of action”.

At present, all Centres are reliant on donations and fundraising activities to finance their operations, although changes in the approach to service delivery within the NHS may change this.

The majority of Centres are members of the national umbrella body, MS National Therapy Centres (MSNTC), a registered charity in England & Wales and Scotland ( MSNTC is a membership organisation which exists solely to support the continuing development of member Centres using the power of collective action. It was created by the member Centres and is directed and partially funded by them.

More than 15,000 people use the MS Therapy Centres each week. This new study indicates that many more people affected by MS in the UK could benefit from the services the Centres provide to help them manage their symptoms.

For more information about MSNTC or individual Therapy Centres please contact:

MS National Therapy Centres

PO Box 2199, Buckingham, MK18 8AR

Tel: 0845 367 0977 – Email: [email protected]