Multiple Sclerosis Society
About the MS Society
1.1 The MS Society was established in 1953. It is a UK-wide charity dedicated to funding research into the cure, cause and care of MS, as well as supporting people who have MS, and providing help for their families, friends, and other carers. A significant number of our trustees, staff and volunteers either have MS or a personal connection with MS.
1.2 The Society provides care and support through services which include running a national helpline, publications on MS, supplying welfare grants for individuals, funding research and development, providing partnership funding for MS nurses and other specialists and delivering respite care. Our annual budget is £26m.
1.3 We are a democratic organisation of over 40,000 members. We aim to ensure that the perspective of people affected by MS informs all decisions relating to MS health services and social care.
1.4 MS is the most common disabling neurological disorder affecting young people. The UK has one of the highest prevalence in the world, with an estimated 85,000 affected by the disease.
1.5 It is a disease of the central nervous system where myelin, which provides electrical insulation and protection to nerves, is attacked and damaged. MS is unpredictable and can cause a wide variety of symptoms such as loss of mobility, pain, fatigue, vision problems, numbness, loss of balance, depression and mood swings. The disease may progress steadily or involve periods of active disease followed by periods of remission.
1.6 MS is both unpredictable and long term, and the wide variety of symptoms some people experience makes MS difficult to manage effectively. People more severely affected by MS often have complex physical and psychological care needs, and it is critically important that the services that support them have the appropriate skills and knowledge, and staff have the necessary training to be able to meet these needs.
1.7 People with the progressive forms of the disease are likely to develop severe disability. The Scottish Needs Assessment Programme (Office for Public Health in Scotland, 2000) reported that at any one time around 28% of people with MS will be experiencing severe impairment. This figure is based on consolidation of various measures of MS including, the Expanded Disease Severity Score (EDSS), natural history data (Weinshenker et al 1989), and the MS Society Symptom Management Survey. This would suggest that around 30,000 people with MS will be experiencing severe or very severe disability. It is this group for whom the range of palliative care services will be particularly relevant.
1.8 Furthermore, research also shows (Chesson, Robert Gordon University, November 2002) that at this end of the disease trajectory the impact of the disease is also felt acutely by carers, in particular the spouse. This research shows that as the carers’ responsibility increases, the levels of informal and (often) formal support decreases, leading to a spiral of social isolation for the carer and the person with MS.
1.9 In summary, the MS Society believes that people who are severely affected by MS, and their carers, can benefit from the specialism of palliative care, as defined by in the NHS Executive letter, EL (96)85. Little research has been done in this area and for that reason the MS Society itself has invested in a Research and Development project at King’s College Hospital in South London, which will evaluate the contribution that such services can make when working integrally with neurological services. In addition, the Society is funding and evaluating other models of support for those who are severely affected, but more research evidence about needs and effective health care delivery is vital.
1.10 The Society hopes that the National Service Framework for long term conditions due early next year, will specifically recognise the need for the range of palliative care services for people with neurological conditions, and trigger appropriate service and workforce development including education, in the NHS.
2.1 While it is recognised that people very severely affected by MS have care needs that are not currently being met, there is also a scarce amount of literature on this area. The recent NICE MS Clinical Guideline was unable to make recommendations in this area because of the lack of research. The needs and effective health care to respond to these needs would be an important area for further research.
2.2 The range of palliative care services are only available to people who are severely affected by MS on a limited basis, dependent on geography and to some extent chance. There is already limited evidence that people who are severely affected by MS have palliative care needs. More investment is needed to develop and evaluate effective services for people at this stage of the MS journey.
2.3 Education and training for specialist staff is key. We understand that palliative care staff consider they need further training in neurological problems and neurological staff consider they need to understand more about palliative care. This exchange of expertise should be facilitated as a matter of urgency. Primary care and other generic staff, including those in long term care settings, are a particularly important group for education and training.
2.4 Medical and specialist staff in nursing, therapies and psychosocial support will be vital in supporting people with MS, who have complex needs. Education and training too will be vital to exchange expertise across the relevant specialisms.
2.5 The MS Society welcomes this inquiry into palliative care. We are wholeheartedly committed to the domains identified by Cancerlink as being entirely relevant to the care of people with MS at the end of the disease trajectory. These are:
2.7 The palliative care approach aims to promote both physical and psychosocial well-being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by a knowledge and practice of palliative care principles and supported by specialist palliative care. The key principles underpinning palliative care which should be practised by all health professions in primary care, hospital, and other settings comprise:
2.8 Specialist palliative care services are those services with palliative care as their core specialty. Specialist palliative care services are needed by a significant minority of people whose deaths are anticipated, and may be provided directly through specialist services, or indirectly through advice to patient’s present professional advisers/carers. These services provide physical, psychological, social, and spiritual support, and will involve practitioners with a broad mix of skills, including medical and nursing, social work, pastoral/spiritual care, physiotherapy, occupational therapy, pharmacy, and related specialties.
2.9 There is some evidence that people with MS have palliative care needs (Addington-Hall, 1998 and O’Brien 2001). However, the contrast between the availability of palliative care for patients with cancer and for those with non-malignant conditions such as MS has been stark:
“My husband was told he was ‘not dying enough’ [to be eligible] for the hospice at home team…..”
Therefore, in 2002 the Society commissioned an R and D project to bring together palliative care academic and clinical staff based at King’s College, London and their neurology counterparts to establish a research project to develop a flagship neurology and palliative care service. The research approach in this study fits with the modelling and exploratory trial phases of evaluation advised by the MRC.
2.10 This project will evaluate the new service and also develop educational resources on specialist palliative care for MS for professionals, patients and carers. The service will aim to serve people profoundly affected by MS with an EDSS score of 8 or above. It is estimated that of the approximately 500 people living with MS in southeast London, around 10% would be expected to have an EDSS score of more than 8.0.
2.11 This response to the Health Committee Inquiry into Palliative Care draws mainly on findings from the data collected for the service design phase for this new flag ship service at King’s. It highlights the views of people more severely affected by MS, carers and professionals who took part in that study.
2.12 Although the condition is very unpredictable and symptoms vary, people with more severe MS commonly experience pain, spasticity, fatigue, depression, tissue problems, continence problems and cognitive impairment. Living with severe MS also has a profound effect on families and loved ones. People more severely affected have difficult accessing hospital based clinics and many people are cared for in their own homes or in nursing homes by family members and staff who don’t have the specialist knowledge or expertise to cope with these specific and often complex needs.
“with cancer you have the steps more or less mapped out for you” - FG5
“supporting a family and patient through multiple losses will be particularly challenging with MS” - HP4 Health professional
There is currently little literature available to describe the needs of people more severely affected by MS or specialist information and resources on how to manage these needs effectively.
2.13 Health professionals questioned for the King’s neurology and palliative care service design phase considered that palliative care could play an important role in managing MS, specifically in the areas of controlling and managing specific MS symptoms, offering psychosocial support both to the person affected, their carers and families and in offering help with end of life planning.
3. Issues of choice in the provision, location and timeliness of palliative care services, including support to people in their own homes.
3.1 Systematic literature reviews and original research have provided evidence that multi-professional palliative care teams working in a range of settings are effective in alleviating symptoms, promoting choice and increasing patient and family satisfaction (Higginson et al, The Role of Palliative Care Teams: a Systematic Review of Their Effectiveness and Cost Effectiveness, 2002).
3.2 Currently, however, palliative care in any setting is available primarily for people affected by cancer and it is very difficult for people with MS and other neurological conditions to access specialist palliative care services, as the following quotes from the King’s focus groups illustrate:
“Patients [with MS] seem to become a very low priority because they can’t do anything for them, I spend a lot of time trying to access services for these people” - health professional FG12
“Looking at the symptoms common to malignant and non-malignant, it’s all the same, but that much earlier on with dealing with MS; it’s [palliative care] very, very relevant” - Health professional FG11
The reality for many people living with severe MS is they have very little choice in service provision.
3.3 While someone living with cancer will be able to access NHS continuing care to support them at home with tasks like washing, toileting and general care, people with MS find their personal care is often not recognised as a health need. They are more likely to use social services of informal care. In many cases this means people with more advanced MS do not get access to appropriate support. It can also mean that they may have to pay for their care.
3.4 People severely affected by MS are often heavily reliant on informal care and find that there is no other alternative provision. The following case offers an example of the current lack of provision.
3.5 A caller to the Society caring for someone very severely affected by MS in the South East of England had great difficulty when he was admitted to hospital in an emergency. The man’s wife was dependent on him for all aspects of daily living. When he was rushed into hospital she had to be admitted to hospital with him because a lack of local provision meant she could not be offered support or services to enable her to remain in her own home.
3.6 The Society itself is currently pump-priming a number of developments for people who are very severely affected by MS in different settings – longterm care, primary care, hospice outreach, community care and in hospital based multi-disciplinary teams.
4. Equity in the distribution of provision, both geographical and between different age groups.
4.1 There does not appear to be a clear rationale for who gets access to specialist palliative care or continuing care services.
“Some people seem to get everything and others nothing, often those with no one to speak for them.” - Health professional FG7
4.2 Often people severely affected by MS describe the process of trying to access appropriate support and services as a ‘battle’. “Communication between clinicians and patients; the balance between people’s wishes and those of carers, families and friends; the extent to which service provision meets the needs of different cultures and beliefs”
4.3 Specialist palliative care services for MS are so scant that it is difficult to find models of care that meet the needs of minority groups. Our investment in the project at King’s will offer further insight on appropriate models as this is an area with a highly diverse population.
4.4 Focus groups at King’s flagged up that when a service has very little expertise of managing MS, staff may struggle to offer an appropriate service to people severely affected by the condition.
4.5 Services which lack specialist expertise and knowledge of managing MS may end up setting inappropriate goals for people affected by the condition,
“Rehabilitation centres don’t necessarily have the vision of what can be achieved for people, if you haven’t worked with people who are severely disabled with MS you tend to see a rather limited scenario.” - FG8
4.6 The King’s project will develop educational resources of professionals, patients, and carers which will be a valuable resource for professionals working with people with MS with these complex needs.
5. Support services including domiciliary support and personal care.
5.1 We are aware of a number of relevant community support services providing personal care on a domiciliary basis. A key issue that has been identified among such services is the lack of appropriate skills and expertise in MS when it reaches a more advanced stage. At this point, there are likely to be physical, psychological and spiritual needs which most generic support services will be unable to address comprehensively.
5.2 It is vital that MS specialist expertise combined with that of palliative care are available to educate and support generic domiciliary or other personal care and support services.
6. Quality of services and quality assurance.
The National Institute for Clinical Excellence has published evidence based guidance on Service Configuration for Supportive and Palliative care in the context of cancer services. Clearly, this will be useful in also guiding quality of services for non-cancer patients at the most complex end of other diseases. In addition, NICE has recently published a clinical guideline for MS, (November 2003) which again will be vital in guiding the development of quality services, as well as clinical treatment. While these are both valuable tools to support quality of care, it will also be very important that hard pressed professionals are facilitated to implement the guidelines, which may remain shelved if there is no other imperative to drive forward their implementation.
6.1 Whilst the Society has plans for supporting professionals there must also be a performance management dimension if implementation is to be successful.
7. Extent to which services meet the needs of different age groups and different service users.
7.1 The Society is aware that there is scant provision of appropriate care – particularly for younger people affected by MS. In the area of long-term care we are very concerned about the numbers of young people, with the progressive forms of the disease, who require long-term care and are placed in non-specialist settings, which by and large are for elderly people. This is a topic upon which we receive many calls from distraught families. We are planning to do further work in this area, including launching MS educational resources for generic staff in these homes, but also campaigning for more appropriate provision. The expertise of palliative care could also be vital to those in long term care settings.
7.2 Furthermore, the range of services at this end of the spectrum is already limited, and therefore the specific needs of people for example from black and minority ethnic groups cannot be addressed adequately.
7.3 Our network of regional committees and local branches have to deal with cases where people affected by MS are left in inappropriate care settings against their wishes, and these people are often left without any independent advocacy support to enable them to secure better service provision.
7.4 For example, a man in his mid thirties in Sussex was left in a home for older people in South London against his will and a man of a similar age in South Wales had to fight for the option to be cared for at home towards the end of his life.
7.5 A further example is of a man in Kent who is seriously affected by contractures which have not been attended to. He is now bed bound, only able to speak, and in receipt of physiotherapy three times a year. He has not been reassessed for years by either neurology services or rehabilitation services and is frightened of requesting a reassessment lest he be taken into residential care, and lose his home.
8. Workforce issues including the supply and retention of staff and the quality and adequacy of training programmes.
8.1 Health professionals questioned during the King’s service design stage had a number of specific concerns around lack of properly resourced specialist teams to help people with very severe MS. These included lack of therapists particularly physiotherapists, concern about limited social services provision for people severely affected by MS and issues around constantly changing social care staff, and the very short period when a person with complex needs would benefit from a care manager. They were told that cases are closed as quickly as possible leaving the carer and the person affected by MS to battle with a bureaucratic system when they needed further care.
8.2 Lack of continuity of care is a widely held concern held by people with MS, carers and health and social care professionals:
“ Patients go for an appointment and never see the same person twice and have to go through everything again from the beginning” - FG4
9. Financing, including the adequacy of NHS and charitable funding and their respective contributions and boundaries.
9.1 It is very clear that there is a need for more funding for NHS, social services and voluntary sector services to meet the very special needs of people with MS who are severely affected by the disease. Whilst we are hopeful of the impact that the forthcoming National Service Framework for long-term conditions will make, we have already been advised that this is a “new style NSF” which means it carries no funding and will not specify targets, unlike the earlier Frameworks. This is clearly a serious worry to the MS Society.
9.2 The NICE guideline on the management of MS in primary and secondary care recommend that:
9.3 Individuals who are severely impaired and markedly dependent should have their support needs reviewed at least yearly, and they should have these needs met as necessary and in accordance with their wishes, through one or more of the following:
9.4 The Society has concerns about how these broad recommendations will be implemented without investment in Research and Development, infrastructure and training specifically for palliative care.
9.5 Given the NICE MS guidelines do not make specific mention of specialist
palliative care for MS the Society recommends that the National Service
Framework for long term conditions needs to cover palliative care services
for people with neurological conditions in greater detail.
Copyright © 2004, Multiple Sclerosis Society