Memorandum by 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 £26 million.
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
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
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
Being treated as a human being
Meeting psychological needs
Meeting spiritual needs
2.6 We also welcome the World Health Organisation
definition of palliative care, but also consider the definitions
of palliative care as set out in the NHS Executive letter, EL
(96)85 as entirely appropriate when applied to the needs of people
affected by MS.
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
Focus on quality of life, including
good symptom control;
Whole person approach taking into
account the person's past life experience and current situation;
Care which encompasses both the person
with the life-threatening disease and those individuals who matter
to that person;
Respect for patient autonomy and
choice (eg over place of care, treatment options, access to specialist
Emphasis on open and sensitive communication,
extending this to patients, informal carers, and professional
2.8 Palliative interventions are non-curative
treatments given by specialist in disciplines other the specialist
palliative care aimed at controlling symptoms and improving a
patient's quality of life, for example through the use of palliative
radiotherapy, chemotherapy, surgical procedures and anaesthetic
techniques for pain relief.
2.9 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.
2.10 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.
2.11 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.
2.12 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 flagship
service at King's. It highlights the views of people more severely
affected by MS, carers and professionals who took part in that
2.13 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
"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
2.14 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
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,
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
3.6 The Society itself is currently pump-priming
a number of developments for people who are very severely affected
by MS in different settingslong-term care, primary care,
hospice outreach, community care and in hospital based multi-disciplinary
4. EQUITY IN
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
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
6. QUALITY OF
6.1 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
6.2 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
7.1 The Society is aware that there is scant
provision of appropriate careparticularly 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
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.
8.1 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
"Patients go for an appointment and never
see the same person twice and have to go through everything again
from the beginning". FG4
NHS AND CHARITABLE
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
Additional support in the home.
Respite care in the home.
Respite care in another age appropriate
Moving into a residential or nursing
Recommendation 126.96.36.199 Management of Multiple
Sclerosis in Primary and Secondary care, NICE, Clinical Guideline
8, November 2003
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.