Better services now
The case for investment in neuromuscular
services in Wales
“I want to ensure they are not at the bottom of
the NHS pile, simply because they have a rare
condition and there are no services for them."
Michelle Goldthrite and her two daughters have
facioscapulohumeral muscular dystrophy
Muscular Dystrophy UK, July 2015
Contents
Introduction
3
Calls to action
4
Muscular Dystrophy UK Snapshot Survey
6
 Specialist physiotherapy and hydrotherapy
6
 Access to a specialist consultant
7
 Psychological and emotional support
7
 Family Care Advisors
8
 Coordination of services
8
About Muscular Dystrophy and Neuromuscular Conditions
9
About Muscular Dystrophy UK
9
Introduction
I had my daughters and when they were born and through their childhood nothing
was wrong. It is only since puberty this has come to light. I suppose you hit the
grieving process too. It is basically life changing, sad, upsetting. You struggle to understand
why this happened. There are no answers and no one to talk to.”
Mother of a young woman with rigid spine syndrome
Those affected by muscular dystrophy or a related neuromuscular condition (muscle-wasting
conditions) need access to specialist, multi-disciplinary care, including physiotherapy,
regular appointments with specialist consultants and in some cases monitoring from
respiratory or cardiac experts.
People may also require emotional or psychological support to help deal with the challenges
of living with one of these rare and often extremely severe conditions.
However, despite huge strides forward in other parts of the UK, NHS services for people with
muscle-wasting conditions in Wales are falling a long way short of what is required.
Individuals and families currently go without specialist adult physiotherapy, leading to
avoidable deterioration in their condition; are having to wait years between appointments
with their specialist consultant; and in many cases are unable to access emotional or
psychological support on the NHS, leaving them with no one to turn to.
Based on an audit of hospital admissions, Muscular Dystrophy UK report Invest to Save
estimates that the NHS in Wales is spending nearly £4million a year on unplanned
emergency admissions.
40% of this huge sum of money could be saved with
the right investment in specialist services, including
specialist physiotherapy and Family Care Advisor
support.
Families and Muscular Dystrophy UK have been
taking the fight for better NHS services to the Welsh
Assembly for years. The Cross Party Group for
Muscular Dystrophy has published the 2010 Thomas
Report pushing for urgent improvements in care, and
the Welsh Neuromuscular Network recommended
£650,000 of investment in neuromuscular services in
Wales in November 2013.
Jeanette George’s son, Alex, from
Cardiff, has Duchenne muscular
dystrophy
But progress remains slow, with many parts of the neuromuscular service in Wales at
breaking point.
Muscular Dystrophy UK is now calling on the Welsh Government and NHS Wales to
act without further delay so that people affected by muscle-wasting conditions can
have the support they need, when they need it, available on the NHS in Wales.
Calls to action
On-going hydrotherapy is a must as far as I am concerned but it’s not available i.e.
weekly hydrotherapy sessions. No specialist neuromuscular physiotherapist for adults.
No full time FCA. No specialist adult neurologist. Not frequent enough clinics. No on-going
physiotherapy. No access to specialist clinics and neurologists in England and other parts of
Wales.”
A lady from South West Wales with facioscapulohumeral muscular dystrophy
Muscular Dystrophy UK calls on the Welsh Government and Health Boards to implement the
following calls to action:
1. Wales currently has no specialist
neuromuscular physiotherapists
for adult patients. Such roles are
important in surveillance, early
intervention and avoidance of
hospital admissions. In north
Wales there are no specialist
neuromuscular physiotherapists in
either child or adult clinics, a
situation which needs to be
addressed in order to ensure
equity of service access and
service quality. Muscular
Dystrophy UK is calling for three
Families are taking the fight for better NHS
specialist physiotherapists: one
services to the Welsh Assembly
in south-east Wales, one in
south-west Wales and another in north Wales.
2. Family Care Advisors support people affected by neuromuscular conditions
throughout the progression of their condition. Currently there are only three Care
Advisors in Wales, supporting 3,400 patients with a neuromuscular condition. This is
unsustainable, and is placing massive strain on the service the three Family Care
Advisors are able to offer. Muscular Dystrophy UK is calling for these vital roles
to be made full time. We also strongly believe that as a next step additional
roles should be considered to address existing caseload burden.
3. Regular access to a consultant specialising in neuromuscular disease is a
major difficulty, particularly in adult services. Due to increasing pressure on
consultant time, a majority of people are being forced to wait well over the
recommended year between appointments. Muscular Dystrophy UK is calling for
the appointment of 1.5 WTE Consultant posts specialising in adult
neuromuscular conditions.
4. There are no dedicated specialist psychology
services in Wales for people with musclewasting conditions. This is a vital and often
overlooked service: specialist psychology can
help people come to terms with their diagnosis,
help them deal with the challenges of living with
their condition, and can mean people are able to
better engage with available support on the NHS.
Muscular Dystrophy UK is calling for the
appointment of clinical psychologists in
Wales specialising in muscle-wasting
conditions.
5. In order to access support, patients in Wales are
frequently having to travel long distances, as
each service is in a different location. This is
Anola Hiles from middisruptive to their daily lives, with time needed off
Glamorgan has central core
work or school, and only adds to the challenges
disease
of living with a long term disabling condition. This
could be addressed if different appointments
could be held in the same location on the same day: the ‘one-stop shop’ model of
care. Muscular Dystrophy UK is calling for coordinated or joint appointments
where possible, to reduce travelling time and the strain and stress placed on
families.
6. Access to hydrotherapy in Wales is patchy, despite benefits reported by patients in
areas where there are facilities open to people with neuromuscular conditions.
Others are desperate to access hydrotherapy, but are unable to do so in their area.
Muscular Dystrophy UK is calling for for Health Boards to ensure that children
and adults with muscle-wasting conditions have access to hydrotherapy pools
in their local area.
Muscular Dystrophy UK snapshot
survey
In June 2015, Muscular Dystrophy UK carried out a snapshot survey of nearly 250
people affected by muscle-wasting conditions in Wales, to ask them about them about
their experiences of accessing specialist care. Our findings confirm a complete lack of
specialist physiotherapy, long waiting times to see a specialist consultant and lift a lid on the
emotional challenges encountered by families across Wales living with a muscle-wasting
condition.
Specialist physiotherapy and hydrotherapy sessions
Of those surveyed, 85% were not accessing specialist physiotherapy regularly,
pointing to a complete lack of services across much of Wales.
Individuals’ comments pointed to their
frustration that an essential service
which would help in the management of
their condition is simply unavailable to
them.
Comments included:
“There is a desperate need for specially
trained physio therapists.”
“I would like physiotherapy but I can not
spend the day travelling to and from the
NMC. Local physiotherapists aren't able
to give me any help.”
Henry Langen from Dyfed has
facioscapulohumeral muscular dystrophy
“I would really benefit from regular
physiotherapy from a specialist physiotherapist, who understands my condition and how it
affects me — not only to help me keep more mobile, but to stop my condition progressing so
quickly.”
Access to hydrotherapy is similarly limited, with 85% of people reporting that there were
no facilities they could access in their local area.
Hydrotherapy allows for greater resistance and buoyancy and can help maintain or even
improve cardiorespiratory function and muscle strength. It is deeply concerning that so few
people with muscle-wasting conditions in Wales can access these facilities.
Muscular Dystrophy UK is calling for three specialist physiotherapists: one in South
East Wales, one in South West Wales and another in north Wales.
Muscular Dystrophy UK is calling for Health Boards to ensure that children and adults
with muscle-wasting conditions have access to hydrotherapy pools in their local area.
Access to a specialist consultant
Responses to our survey reveal that nearly 50% of those questioned were waiting
between one and two years, with a further 10% were waiting for more than two years,
for appointments with their specialist consultant. It is recommended that people see
their specialist consultant at least once every year.
These figures point to the service being overstretched, and this is backed up by data from
the Muscle Management Clinic in Cardiff, which show an average wait of 18 months
between appointments, with some patients waiting even longer. An increase in waiting times
has also coincided with the retirement of two specialist consultants: one in 2004 and one in
2010. This has contributed to a major shortage in capacity, and points to a lack of
succession planning for when experienced specialist health professionals eventually retire.
80
70
Average number of Weeks between Muscle
Management Clinic appointments by Year
2001-2014
60
52
50
Wee
40
30
20
10
0
2001-2002
2003-2005
2006-2008
2009-2011
2012-2014
Muscular Dystrophy UK is calling for the appointment of 1.5 WTE Consultant posts
specialising in adult neuromuscular conditions.
Psychological and emotional support
Living with a muscle-wasting condition can mean people encounter emotional and
psychological difficulties and may need support from trained professionals with experience in
neuromuscular disease.
Over 75% of patients and families who responded to our survey had never accessed
psychological support in relation to their muscle-wasting condition. Of these, 50% had not
done so because there were no suitable services in their area.
Comments reflect the huge challenges that families face in dealing with diagnosis and the
progression of their condition, reflecting the need for greater psychological and emotional
support. These included:
“No available psychological support. No carer support. What about psychology support for
my children who are watching me deteriorate?”
“It is basically life changing, sad, upsetting. You struggle to understand why this happened.
There are no answers and no one to talk to.”
“On diagnosis there should be psychologists on hand”.
Muscular Dystrophy UK is calling for the appointment of clinical psychologists in
Wales specialising in muscle-wasting conditions .
Family Care Advisors
Family Care Advisors support people
affected by muscle-wasting conditions
throughout the progression of their
condition.
Currently there are only three Care
Advisors in Wales, supporting 3,400
patients with a muscle-wasting condition.
The pressure on their time is
considerable, especially as both the
Ray Thomas from Neath had two sons,
posts in South Wales are currently only
Robert and Leighton, affected by Becker
part time. This is leaving Care Advisors
muscular dystrophy
without sufficient time to meet the huge
demands on their caseload, which can
affect the quality of an intervention with a patient. Care Advisors were also given responsible
for securing equipment, due to a one-off grant for equipment for patients affected by
muscle-wasting conditions. They had to swiftly learn about procurement, price negotiation,
service maintenance and testing. Fighting for equipment is vital, but this put huge demands
on their time at the expense of supporting patients on other important issues.
Moreover, lack of capacity elsewhere in the service is having a knock on effect on Care
Advisors’ time. For example, a complete lack of specialist adult physiotherapy is meaning
Care Advisors are spending time sourcing services elsewhere or supporting patients in this
area themselves, such as training in self management physiotherapy techniques.
Muscular Dystrophy UK is calling for these vital roles to be made full time. We also
strongly believe that as a next step additional roles should be considered to address
existing caseload burden.
Coordination of services
Many families responding to our survey reported frequent disruption to their daily lives due to
frequent appointments with specialists based at different locations across Wales:
“Currently we travel between four hospital locations to access services and as my son's
condition worsens this will become increasingly more difficult. Additionally, we have to miss
school time sporadically to accommodate various appointments - a true one stop clinic would
limit missed school/work.”
“Attending several different clinics is very time consuming eg neuromuscular clinic, OT,
orthotist, endocrine, DEXA scan, heart scans. This causes loss of time at school and often
there are delays with one clinic reporting to the other.”
Muscular Dystrophy UK believes this issue could be relatively easily addressed if different
appointments could be held in the same location on the same day: the ‘one-stop shop’
model of care.
Muscular Dystrophy UK is calling for coordinated or joint appointments where
possible, to reduce travelling time and the strain and stress placed on families.
What is muscular dystrophy?
There are about 60 forms of muscular dystrophy and related neuromuscular conditions.
These conditions cause muscles to weaken and waste over time, leading to increasing
disability. The conditions may affect not only the muscles in the limbs, but also those of the
heart and lungs, sometimes significantly shortening life-expectancy.
Many of the conditions are low incidence, rare conditions, with some regarded as very rare
or ultra-orphan. Muscular dystrophy and related neuromuscular conditions can be genetic or
acquired and, with few exceptions, there are currently no effective treatments or cures
available.
Clinical trials in some forms of muscular dystrophy and related neuromuscular condition are
now underway and it is hoped that these may lead to the introduction of new treatments that
can slow or arrest the progression of these often devastating conditions.
About Muscular Dystrophy UK
Muscular Dystrophy UK is the charity bringing individuals, families and professionals
together to beat muscle-wasting conditions.

We are supporting high-quality research to find effective treatments and cures, and
leading the drive to get faster access to emerging treatments for UK families.

We are ensuring everyone has the specialist NHS care and support they need, with the
right help at the right time, wherever they live.

We are providing a range of services and opportunities to help individuals and their
families live as independently as possible.
For more information on access to specialist neuromuscular care in Wales, please
contact Peter Sutton on p.sutton@musculardystrophyuk.org or call 020 7803 4838.