Written evidence from the Muscular Dystrophy
Campaign (CFI 34)
EXECUTIVE SUMMARY
— We
welcome the Committee's follow-up inquiry into commissioning,
particularly the review of proposals for integrating the full
range of clinical expertise into the commissioning process. We
are encouraged by the Committee's focus on commissioning but remain
concerned about proposed structures for specialised commissioning
for people with rare and very rare conditions.
— As
our evidence had shown, patients with neuromuscular conditions
face a "postcode lottery" in accessing the specialist
multidisciplinary care they require. This has had devastating
consequences, with young men with Duchenne muscular dystrophy
dying on average 10 years earlier in some parts of the country
compared with others, due to a lack of specialist care.
— We
therefore strongly believe that specialist neuromuscular services
must be commissioned by the National Commissioning Board and robust
sub-national structures must be set up to enable continued commissioning
at a regional level.
— Putting
in place structures to commission specialist services as part
of the proposed restructure of the NHS would not only help to
reduce the "postcode lottery" that people with neuromuscular
conditions find when they attempt to access vital services, but
would also lead to a significant reduction in the estimated £68
million currently spent on unplanned hospital admissions in England.
— Neuromuscular
conditions are complex multisystem disorders, requiring care through
tertiary and sometimes quaternary services, as well as primary
and secondary care. Clinical evidence is clear that such multidisciplinary
care at all of these levels can not only can dramatically extend
life-expectancy and transform quality of life for patients with
these conditions but also save vital funds by preventing unplanned
emergency admissions and through reducing the length of hospital
stays.
— We
urgently seek clarification as to how the National Commissioning
Board will interface with the rest of the system commissioned
by GPs to provide the essential elements of this multidisciplinary
care. We recommend that GP consortia be required to work closely
with sub-national commissioning structures to overcome the gaps
in their knowledge of rare and very rare conditions.
INTRODUCTION
1. The Muscular Dystrophy Campaign represents
the 71,000 people in the UK with muscular dystrophy or a related
neuromuscular condition. There are more than 60 different types
of muscular dystrophy and related neuromuscular conditions, many
of which are low incidence, orphan conditions and indeed some
are very rare and are regarded as ultra orphan. Neuromuscular
conditions can be genetic or acquired and, with the exception
of a couple of acquired conditions, there are no known effective
treatments or cures.
2. As these are rare and very rare conditions,
they are currently the responsibility of the 10 regional Specialised
Commissioning Groups in England, and are listed in the Specialised
Services National Definition Set (SSNDS).[79]
The ultra-rare conditions (affecting less than 400 patients each)
are the responsibility of AGNSS (Advisory Group for National Specialised
Services).[80]
3. We welcome the Committee's follow-up inquiry
and particularly the intention to review the arrangements proposed
for integrating the full range of clinical expertise into the
commissioning process. Whilst we welcome the decision to set up
the National Commissioning Board for regional and national specialised
services, it is vital that neuromuscular conditions continue to
be recognised on the Board's list of specialised services and
that specialised services are commissioned regionally and nationally
for the rarest conditions.
4. People with neuromuscular conditions will
also need to access vital non-specialised services such as physiotherapy,
hydrotherapy and psychological support. It is essential that GP
consortia have access to the expertise they need to commission
non-specialised services for people with neuromuscular conditions.
THE IMPORTANCE
OF SPECIALISED
COMMISSIONING FOR
NEUROMUSCULAR CONDITIONS
5. Neuromuscular conditions are complex, progressive
multi-system conditions which require multidisciplinary pathways
of care. These pathways are recommended by the leading clinicians
in this field as drastically improving the quality of life and
need for emergency care: "Specialist multi-disciplinary
care has been developed by leading clinicians as the best model
for delivering effective care for such complex, multi-system diseases.
The provision of expert physiotherapy, orthotics, early cardiac
monitoring and intervention and corticosteroids has been shown
to improve muscle function and maintain independent mobility.
The judicious use of spinal surgery and expert respiratory services
(including non invasive positive pressure ventilation) helps to
improve quality of life, delay the onset of respiratory failure
and prolong the life of these patients."[81]
6. In addition to improving life expectancy and
quality of life for neuromuscular patients, specialist neuromuscular
care has been shown by clinical audit data to reduce the likelihood
of patients with neuromuscular conditions being admitted to hospital
as an emergency. Dr R. Quinlivan, Specialist Neuromuscular Consultant
at the Centre of Inherited Neuromuscular Disorders at the Robert
Jones and Agnes Hunt Orthopaedic and District Hospital, Shropshire
(until November 2010) has shown that of her 700 patients only
eight were admitted to hospital as unplanned admissions during
the 2009—2010 financial year. Of these eight admissions,
half were unrelated to the patient's neuromuscular condition.
7. Analysis of unplanned emergency admissions
data provided by a number of Specialised Commissioning Groups
suggests that £68 million was spent last year in England
on such admissions by people with neuromuscular conditions. We
estimate that this figure could be substantially reduced through
investment in specialised multidisciplinary care.
8. Taken together, the factors above strongly
set out the case for specialist neuromuscular care to be commissioned
at a regional level. We welcome the decision to set up the National
Commissioning Board for regional and national specialised services.
It is imperative that specialised services for patients with rare
and very rare neuromuscular conditions are not left to be commissioned
by GP consortia, which will not have the patient numbers, knowledge
or expertise to commission these complex and costly services.
However, the Health and Social Care Bill gives no guidance on
any sub-national structures of the National Commissioning Board,
which will be vital in ensuring that the Board is able to carry
out its direct commissioning functions effectively. Without this
sub-national co-ordination, patients with neuromuscular conditions
are at risk of facing a worsening 'postcode lottery'.
Life expectancy for those with Duchenne muscular
dystrophy (DMD) varies significantly between regions in the UK.
The most recent study by Eagle et al[82],
found a mean age of death of almost 30 years in patients with
DMD receiving specialist multidisciplinary care, as reported by
the Newcastle group. This compares to an audit of 40 sequential
DMD deaths over ten years in the South West region which showed
a median age of death of 18 years.
9. The National Commissioning Board must therefore
take a leading role in commissioning specialised services for
neuromuscular conditions, supported by a robust sub-national structure
with responsibility for regional commissioning. This is vital
to ensure that patients with neuromuscular conditions do not experience
worsening outcomes and, in some cases, reduced life expectancy.
10. We also seek reassurance that sufficient
funding will be provided to ensure that the National Commissioning
Board is able to commission all 35 definitions in the current
SSNDS. We seek further clarification as to how the funding will
be delivered for the National Commissioning Board. Currently the
funding for specialised services is top-sliced from Primary Care
Trust budgets, leading to severe difficulties for the commissioning
of these services. We would recommend that funding is delivered
at a national level to the National Commissioning Board, and not
delivered via GP consortia.
11. We urge the Government to set a firm timescale
for the migration of specialised services to the National Commissioning
Board. There is continued confusion as to the future role of regional
Specialised Commissioning Groups and that this is having a negative
and delaying impact on the commissioning of specialised neuromuscular
services. It is crucial that patients are not subjected to planning
paralysis in the commissioning and delivery of these services
during this period. The urgent and continuing needs of patients
with life-limiting conditions cannot be placed on hold due to
the NHS reorganisation.
THE ROLE
OF GP CONSORTIA
IN COMMISSIONING
SERVICES FOR
PEOPLE WITH
NEUROMUSCULAR CONDITIONS
12. Whilst the majority of services for people
with neuromuscular conditions will need to be commissioned by
the National Commissioning Board, as outlined above, people with
these conditions will also require essential non-specialised neuromuscular
primary care, which will be commissioned by GP consortia.
13. Already patients and their families can experience
severe and substantial difficulties accessing diagnosis and subsequent
specialist care through their GP. In 2010 we surveyed 2,000 people
living with muscular dystrophy or related neuromuscular conditions
to uncover their experiences of accessing the appropriate medical
services for their conditions. Our survey revealed that over half
of people with muscle disease feel their GP has a poor understanding
of their condition and many of those surveyed said they felt they
knew more than the GP. Furthermore, many patients who responded
told shocking stories of some GPs' ignorance of the condition,
which included being labelled a "lazy hypochondriac"
and patients having to teach doctors about muscle disease.
14. This lack of understanding can lead to a
delay in appropriate referrals and diagnosis which is correlated
to life quality and in some circumstances impacts on life expectancy.
Our survey revealed that 50 per cent of people with neuromuscular
conditions did not receive a correct and prompt diagnosis. Our
patient survey further reported a severe difficulty in accessing
non-specialised services, such as physiotherapy, hydrotherapy
and psychological support. Primary Care Trusts have been extremely
unwilling to fund these vital services on an ongoing basis - instead
only allowing patients access for a six week or six session basis.
This fails to recognise both the long-term and progressive nature
of neuromuscular conditions. Further, such short-term thinking
regarding costs leads to much higher costs in the medium-term,
through not only unplanned emergency admissions, but greater need
of wheelchairs and mobility equipment, community nursing following
falls, and social care costs.
15. A sub-national specialised commissioning
structure, as described above, would enable the engagement and
input of GP consortia in the commissioning process, alongside
the effective provision of those primary care services best commissioned
at a local level for people with rare and very rare neuromuscular
conditions. We would also recommend that consideration be given
to requiring each GP consortium to appoint an expert in rare conditions
to ensure that they had the necessary expertise to commission
primary care services and co-ordinate these with the necessary
specialised services for this patient group.
February 2011
79 National Specialised Commissioning Group Specialised
Services National Definition Set http://www.specialisedservices.nhs.uk/info/specialised-services-national-definitions Back
80
AGNSS: http://www.specialisedservices.nhs.uk/info/agnss Back
81
Professor Michael G Hanna, Consultant Neurologist, Institute of
Neurology, London; et al. (2007) Building on the Foundations:
The Need for a Specialist Neuromuscular Service Across England
Back
82
Eagle M et al (2007) Managing Duchenne muscular dystrophy - The
additive effect of spinal surgery and home nocturnal ventilation
in improving survival. Neuromuscular Disorders, Volume 17, Issue
6 pp.470 - 475 Back
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