Health CommitteeWritten evidence from the Multiple Sclerosis Trust (LTC 62)

Introduction

The MS Trust is a national charity representing the interests of 100,000 people with MS in the UK. We provide information for anyone affected by MS, education for MS specialist nurses and therapists, and funding for research into managing the symptoms of MS.

MS is the most common long-term neurological condition diagnosed in young adults of working age (20–40). There is no known cure although there are treatments for relapsing/remitting MS which can delay the onset of the progressive stage of the condition; these apply to around half of the MS population.

MS is uncommon: prevalence in England is around 140 cases per 100,000 people.

People with MS benefit most from ready access to MS specialist services. The key person in this relationship is the MS specialist nurse, who acts as a care co-ordinator, offering holistic symptom management, making appropriate referrals, and often negotiating the boundary between health and social care.

Specialist MS care is only available patchily in community settings. Most MS specialist care is available in hospitals via the hub-and-spoke model, with the hub being a teaching hospital and the spoke a local District General Hospital.

The hub-and-spoke model works well so long as people with MS are able and willing to travel. Experience indicates that older people with MS or people with progressive forms of MS become dependent on primary care.

Two main problems result from dependency on primary care: poor management of MS symptoms resulting from a lack of understanding about the condition; and a tendency to attribute all symptoms to MS when they may indicate a comorbidity.

The MS Trust’s preferred solution would be greater outreach of MS specialist nurses into community settings, where they could act as care co-ordinators.

The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service re-design for costs and effectiveness

The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community

1. We wish to consider both these questions together.

2. People with multiple sclerosis depend on a combination of health professionals and skills for competent management of their condition. Very often, the single most important health professional is the MS specialist nurse, who can advise on a range of symptom management.

3. Multiple sclerosis is a fluctuating condition but at some point most people with MS will enter a stage where they become progressively more disabled, with both physical and cognitive symptoms.

4. The majority of MS specialist nurses are employed by neuroscience services based in teaching hospitals. Only some have a community outreach role.

5. People with MS need significant intervention from specialist health professionals at times of major change in their condition, such as around diagnosis, around pregnancy (for women), and around the time someone with relapsing/remitting disease enters the progressive phase of the condition.

6. Anecdotal evidence from people with MS and from hospital-based MS specialist nurses and neurologists indicates that many people with MS reach a stage where they stop attending hospital for clinic appointments. Travel becomes too significant a barrier.

7. At this point, they depend on their GP and community nurses, who do not have the specialist skills and expertise to deliver MS-specific care. In these settings, we often hear of people with symptoms that are not well managed, and experiencing symptoms that are attributed to their MS, when there may be other causes which are not properly investigated. This leads to a risk of unnecessary hospital admission

8. Based on caseload alone, employing MS specialist nurses only in hospitals is more financially attractive. A typical hospital-based MS specialist nurse may have a caseload of 700 patients, while community-based MS specialist nurses may have a caseload of as few as 150 patients. In a hospital setting, the majority of patients will come back for an annual review. Patients based in the community are more likely to have complex disability and be more expensive to the NHS. Here the specialist nurse will engage in more complex case management, symptom management and care co-ordination.

9. There is some evidence that hospital based and community MS nurses save money over the costs of their post, by reducing planned and emergency hospital admissions, reducing the number of neurologist consultations and improving adherence to expensive disease modifying drug treatments [MS Trust. Defining the value of MS specialist nurses. Letchworth: MS Trust; 2012. http://www.mstrust.org.uk/research/mstrustprojects/projects/defining-the-value-of-ms-specialist-nurses-detailed-summary-3.jsp].

10. Access to some services is still extremely poor. It’s difficult to be sure whether this is wholly due to a lack of provision or to inadequate referrals. Still, in a 2011 audit of MS services, only 43% of people with MS reported access to neurorehabilitation, most reported no access to specialist vocational rehabilitation and only 44% of people with MS had been given all the mobility equipment they were assessed as needing [Royal College of Physician & Multiple Sclerosis Trust. The national audit of services for people with multiple sclerosis. RCP & MS Trust: London & Letchworth; 2011. http://www.mstrust.org.uk/research/mstrustprojects/projects/rcp2011–2.jsp].

11. Mobility equipment, such as frames, walkers, sticks and wheelchairs, grab rails and stairlifts may be provided by the NHS or by social services, depending on the type of equipment needed and the environment in which it’s provided. The poor provision found by the Audit suggests that at the very least, social care and health are not integrating well.

The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions

The interaction between mental health conditions and long-term physical health conditions

12. We have taken these two questions together as many of the comorbidities in MS relate to mental ill-health rather than physical comorbidities.

13. A host of symptoms develop as a result of having MS. Not everyone with MS will develop all these symptoms, but they include: fatigue, sleep disorders, spasticity, tremor, balance problems and ataxia, neuropathic pain, urinary and faecal incontinence, loss of mobility, visual problems, speech and swallowing disorders; also mental health symptoms, such as anxiety and depression, and sometimes more severe mental health disorders.

14. All these symptoms are treatable but there is a tendency for GPs and community health professionals to attribute any symptoms someone with MS experiences to their MS, rather than to investigate. For example, faecal incontinence, a known symptom of MS, is rarely investigated. Therefore, possible other causes such as an underlying bowel condition or drug side effects are not considered.

15. MS does not protect an individual against developing another long-term condition, such as diabetes or asthma or cancer or heart disease etc; conversely, someone with a pre-existing long term condition may develop MS.

16. There has been little research into managing comorbidities in MS, so we are dependent on individual case histories and experience. Our experience suggests that care is far from joined up for individuals with comorbid long-term conditions. For example, one of our supporters has MS and has been profoundly deaf since birth; her audiologist is based at one hospital while her neurologist is based at another hospital in a different city some thirty miles distant. Both consultants attribute the problems she experiences with balance to the other condition. Neither consultant communicates well or in a timely fashion with the other.

17. We have heard similar stories from the families of people with MS who have developed significant mental health symptoms. Occasionally in MS, cognitive symptoms can degenerate into florid psychosis or dementia, or both. We have experienced more than one case where an individual with MS has been admitted to inpatient psychiatric care but the acute mental health unit has not been able to deal with the patient’s physical needs. The individuals involved were wheelchair users, with complex disability.

18. One noted high risk among people with MS is a greater risk of bone fracture caused by falls, caused themselves by poor balance and coordination, plus a greater risk of osteopenia/osteoporosis that results from lack of weight-bearing mobility, particularly in wheelchair users. Treatment of the bone fracture is normally good but our supporters report very little access to preventive care, such as falls prevention programmes, or bone density scanning and follow-up treatment.

19. The commonest comorbidities in MS are depression and anxiety. Primary care treatment is normally successful. However, in practice it depends on the GP whether an individual is managed in primary care or whether they are referred back to a neurologist, with attendant waiting times.

The implications of an ageing population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand

20. Epidemiological studies for the incidence and prevalence of MS in the UK are sparse, and there is no official MS register, but in recent years, localised research indicates that incidence and prevalence of MS is rising significantly. [eg Hirst C, et al. Increasing prevalence and incidence of multiple sclerosis in south east Wales. J Neurol Neurosurg Psychiatry 2009; 80(4): 386–90; Visser E, et al. A new prevalence study of multiple sclerosis in Orkney, Shetland and Aberdeen city. J Neurol Neurosurg Psychiatry 2012; 83(7): 719–24].

21. A large number of people with MS are diagnosed with relapsing/remitting forms, which can be treated with disease modifying therapy. The aim of disease modifying therapy is to delay the transition to a progressive form of the condition, so to enable individuals to live fully able lives for as long as possible. However, even with current therapies, many people with MS will start to develop significant disability in around 15–20 years from diagnosis.[Tedeholm H, et al. Time to secondary progression in patients with multiple sclerosis who were treated with first generation immunomodulating drugs. Multiple Sclerosis 2012; Nov 1. Epub ahead of print]

22. Average age at diagnosis is at about 30 years of age. Around 10% of people will be diagnosed with a progressive condition from onset.

23. MS reduces life expectancy only slightly, by around five years from the average. The effect of disease modifying drug therapy on average life expectancy is not yet known.

24. Given points 20–23 above, we anticipate that the total MS population will continue to grow, partly because incidence is rising, and partly as people live longer with the condition. Our expectation is that people with MS will, like the rest of the UK population, continue to live longer. However, many people with MS will grow old with significant disability and their greater life expectancy may involve living with complex physical and cognitive symptoms.

25. Like the rest of the population, the indications are that older people with MS are likely to develop more comorbid conditions, eg arthritis, Type 2 diabetes. Very little systematic research in this area makes it difficult to specify which conditions are most common.

26. At the moment, there is very little evidence that the health and social care system has enough capacity to cope with this increased pressure. The UK has fewer neurologists per head of population than any other country in Europe, of around 1 neurologist per 140,000 population; this compares adversely to Europe and North America where there is an average of 1 neurologist to 40,000 population [Royal College of Physicians and Association of British Neurologists. Local adult neurology services for the next decade. London: RCP 2011. http://bookshop.rcplondon.ac.uk/details.aspx?e=354

27. Currently there are around 235 whole-time equivalent MS specialist nurses in post. It is clear that some areas are very well served for MS nurses whereas others have very poor coverage. [MS Trust. Defining the value of MS specialist nurses. Letchworth: MS Trust; 2012 http://www.mstrust.org.uk/research/mstrustprojects/projects/defining-the-value-of-ms-specialist-nurses-detailed-summary-3.jsp].

28. In the past 10 years, neurology has been granted a great deal more funding but this has not translated into significant improvements in care [House of Commons Public Accounts Committee: Seventy-second report. Services for people with neurological conditions. 2012; http://www.parliament.uk/business/committees/committees-a-z/commons-select/public-accounts-committee/news/neuro-report-/] We would suggest that this is taken into consideration when recommendations are made for improving services.

29. Adequate social care is a major problem for less able people with MS. As increasing pressures on the system mean that social care is provided only to individuals with significant care needs, there is a very high risk that people with MS who need small amounts of help will develop unnecessary symptoms or fall, thus requiring acute admissions for fracture.

30. To combat these issues, the MS Trust would like to see greater funding for social care and for equipment services, and far more specialised care delivered in the community, by increased outreach from MS specialist nurses and therapists into community settings, and joint assessments with GPs, community nurses and social workers. We believe that this would significant improve holistic preventive care for individuals with MS, especially as their life expectancy increases.

9 May 2013