Five Years On, NHS Still Failing MS Patients

A survey of services for people with multiple sclerosis (MS) by the Royal College of Physicians' Clinical Effectiveness and Evaluation Unit (CEEu) and the MS Trust shows that the NHS is still failing to implement the 2003 NICE* guidelines on the management of MS patients. The audit, carried out in the first two months of 2008, asked people with MS, Hospital Trusts, Primary Care Trusts and the Strategic Health Authorities a series of questions based on the six key recommendations and one quality marker of the NICE guidelines.

The survey shows that access to neurological rehabilitation services remains wholly inadequate - only 36% of people with MS had access to such services. This is unacceptable. For people with MS, it is the inadequacy of symptom management which causes distress, and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced.

Although access to specialist neurological services has improved, there are still long delays from GP referral to diagnosis, with 50% of all patients waiting over 20 weeks.

The survey also reports that 6% of people surveyed had developed a skin pressure ulcer during the previous 12 months. Occurrence of pressure sores was NICE's identified "quality marker" for MS services - and for good reason. A grade 4 pressure ulcer costs the NHS an estimated £10,551, with total costs in the UK at £1.4-£2.1 billion - about 4% of the total NHS expenditure. Service quality is still low.

Professor Ian Gilmore, President of the Royal College of Physicians, said:

"It seems incredible that after five years we are no nearer to commissioning the full range of services that MS patients need and deserve".

Christine Jones, Chief Executive of the MS Trust, said:

"If you have MS and you have access to the services you need, you are in a fortunate position. Unfortunately it is still a matter of geographical accident. The postcode lottery is about basic services - continence, prevention of pressure sores, being assessed for the right wheelchair if you need it, pain relief. Quality services should not depend on the accident of finding a doctor or a nurse who really understands and responds to your needs. It should be built into the commissioning structure of the NHS - and it is not".

Professor Graham Venables, President of the Association of British Neurologists (ABN), said:

"The ABN is delighted to have been involved again with the Royal College and the MS Trust on this second audit of implementation of the NICE Guideline. It is evident from the data that where specialist services exist, people with MS fare better. MS is a complex condition and specialist support is crucial."

To improve the situation, the report made eight major recommendations directed at all levels of the Health Service and listed in the table below.

All NHS Organisations

- should have one specific person or role responsible for services for people with long-term neurological conditions including multiple sclerosis (MS)
- should involve people with MS in setting standards, in service development and in commissioning
- should have one specific person or role responsible for monitoring and reducing the rate of skin pressure ulceration

Commissioning Organisations

should commission specialist neurological rehabilitation services to enable every person with MS to have ready and rapid access to these services

Acute Trusts/ Provider Units

- should ensure that any person with MS in their care for whatever reason has timely access to an expert neurology service and an expert neurological rehabilitation service.
- should ensure that health professionals engage people with multiple sclerosis fully in all clinical decisions
- should give people with multiple sclerosis information about relevant local non-statutory services as well as national services

Department of Health

should review the organisational framework of the NHS so that one organisation becomes responsible for ensuring that the population of people with MS in a defined area has access to services that can meet all of their clinical needs in a timely way, across the whole range of problems they face, managed in a coordinated way, and with staff who have appropriate expertise.

Multiple Sclerosis

MS affects approximately 85,000 people in the UK and two thirds of these are women. MS is most often diagnosed when people are in their 20s and 30s and is the most common neurological condition affecting young people.

In MS, damage or scarring occurs to the myelin sheath - a layer of fatty protein that protects the nerves in the same way that insulating material protects an electric wire. This damage disrupts the way in which nerve impulses are carried to and from the brain and leads to a range of symptoms, including fatigue, bladder and bowel problems, difficulties with walking and pain or abnormal sensations. MS is a complex and unpredictable condition, which varies from person to person and does not follow a set pattern. Symptoms can come and go from day to day but there can also be relapses followed by periods of complete or partial remission.

The MS Trust

The MS Trust is a charity which works with and for the 85,000 people in the UK with MS. Our vision is to enable people with MS to live their lives to the full. We provide:

- information that is tailored to what people want to know
- education for health professionals about what people with MS need
- research into better management of MS
- support for anyone affected by MS

The Royal College of Physicians of London is responsible for postgraduate education and training for physicians. This includes delivering examinations, training courses, continuous professional development and conferences; undertaking clinical audits; publishing newsletters, guidelines and books through to maintaining the College's historical collections. We also lead medical debate, and lobby and advise government and other decision-makers on behalf of our members.

* The National Institute for Health and Clinical Excellence (NICE) is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. In 2003 it published NHS Guidelines for the management of multiple sclerosis making six key recommendations and identifying one sentinel quality marker.

Royal College of Physicians