Services that people with multiple sclerosis depend upon from the NHS have shown little or no improvement in the last 5 years, and guidelines issued by NICE for the management of patients with MS are no closer to being met today than when they were first launched in 2003.
Services that people with multiple sclerosis depend upon from the NHS have shown little or no improvement in the last five years, and guidelines issued by NICE for the management of patients with MS are no closer to being met today than when they were first launched in 2003.
These disappointing results come from The national audit of services for people with multiple sclerosis 2011, conducted by the Royal College of Physicians and the MS Trust. It is the third audit of MS services provided by the NHS since 2003.
The audit, published today, found that at this time of huge changes in the NHS, one third of trusts have no plans to improve neurological services in the next year and most are giving insufficient management attention to joining up services across the NHS or with social care.
The audit of services, which involved people with multiple sclerosis, GPs, hospitals, NHS trusts and strategic health authorities, showed that basic symptoms such as pain, fatigue and problems with cognition are not well treated. It also highlighted that despite people with MS losing on average 18 years of their working lives, most people do not have access to specialist vocational rehabilitation in most areas.
Pam Macfarlane, chief executive of the MS Trust said:
People with MS have complex needs that rely on well co-ordinated health and social care services. Despite a culture of targets and increases in spending in the past ten years there has been little progress in this area. With huge changes in commissioning and squeezed budgets there is no evidence that things are going to improve and we are extremely worried about the future for the services that people with MS depend upon.
Professor Derick Wade, MS audit associate director and professor in neurological rehabilitation, said:
The future changes to the way health services are commissioned give us a unique opportunity to improve the planning, commissioning and provision of services for MS patients, but we must not repeat the mistakes and inertia of the past 8 years – we must move forward, identifying where services are deficient and making them better. In particular, we believe that there is an opportunity for increased collaboration between different healthcare organisations and between health and social services. MS patients deserve a better future.
More key results from the audit
No improvement overall
- 73% of people with MS report that they can see a neurologist, and 36% report they can see neurology rehabilitation services. This figure is unchanged against previous audits.
No improvement plans for neurology services
- One third of trusts have no documented plans to improve neurological services in the next year
Joining up services
- 64% of people with MS report sharing of information between health organisations made transfer of care easy, and 29% report sharing of information between health organisations and social services made transfer of care easy. Both figures have declined since the previous audit from 67% and 41% respectively.
Pain, fatigue and cognition
69% of people with MS report assessment of ‘hidden’ symptoms like fatigue, depression, cognitive or sexual impairment, and bladder control are both sensitive and thorough. This figure is largely unchanged from the previous audit when it was 67%.
Audit participants:
- People with multiple sclerosis – 704 service users.
- Acute NHS hospital trusts – 105 of 151 service providers (secondary care).
- Community-based services – 32 of 62 community service providers (primary-secondary care interface).
- General practice – 49 service providers (primary care).
- Primary care trusts and local health boards – 51 of 151 service commissioners.
- Strategic health authorities – 4 of 10 service performance managers.
Facts about multiple sclerosis:
- MS is the most common neurological condition in young adults in the UK, affecting around 100,000 people. Multiple sclerosis (MS) is an incurable, unpredictable, life-long, challenging condition that affects every part of a person’s life. It can have huge impact on family and social life, and lead to loss of work and independence. MS has an uncertain prognosis which can encompass anything from a relatively normal lifespan to severe disability.
- The disease onset usually occurs in young adults aged between 20-40, though there is often a prolonged period of symptoms but no diagnosis. The range of clinical and functional problems it generates is vast and may involve almost any part of a healthcare service. Investigating how the NHS responds to the many and varied needs of people with MS at all stages of their illness should therefore allow a judgment of how well the NHS responds to patients with other long-term conditions.
Vocational Rehabilitation
- Only 1 in 7 people with MS report getting support to stay in work, and only 1 in 9 report getting support to return to work.
MS Trust
The MS Trust is a UK charity, providing information for anyone affected by multiple sclerosis, education programmes for health professionals, funding for practical research and campaigning for specialist multiple sclerosis services. Our vision is to enable people with MS to live their lives to the full.
Royal College of Physicians
The Royal College of Physicians (RCP) plays a leading role in the delivery of high-quality patient care by setting standards of medical practice and promoting clinical excellence. It provides physicians in the United Kingdom and overseas with education, training and support throughout their careers. As an independent body representing over 26,000 fellows and members worldwide, it advises and works with government, the public, patients and other professions to improve health and healthcare.