Patients with muscular dystrophy travel to the Neuromuscular Centre (NMC) in Winsford, Cheshire, from all over the UK and occasionally abroad.
It’s the only centre of its kind in the UK that provides ongoing, highly-specialised physiotherapy to patients with the many forms of muscular dystrophy and associated neuromuscular disorders.
Gill Storey, head of physiotherapy at the centre, says general musculoskeletal physios or rehab teams can assess and treat patients with neuromuscular disorders, but that the progressive nature of these conditions means the patients need ongoing monitoring and overview.
‘It is difficult for a general musculoskeletal clinic because neuromuscular patients present in a very different way to most other conditions, and most physios don’t get to see an adult with muscular dystrophy.
Most GP practices may only have one or two patients with muscular dystrophy so that specialist knowledge is not something you could expect physios to have.
‘When they do see a patient the physio can explore the possibilities for treatment but because the patient’s muscles deteriorate in quite a random way they can use “trick” methods to keep themselves on their feet and do things that physios try to correct, which consequently, and unintentionally, can make things 10 times worse.’
Specialist physios can intervene before a problem becomes serious, and reassess and assign new interventions and exercises when they become necessary, but ensuring that clinicians, including physios, across the country are aware of what services should and can be provided can be difficult.
Tracey Willis, consultant paediatric neurologist with a specialty interest in neuromuscular disorders at the Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry, wrote to her clinical colleagues, informing them of the work that physios at the NMC carry out.
‘As these chronic conditions are at present mainly non-treatable, physiotherapy remains the mainstay of treatment and prevention of further progression of some of these conditions,’ she wrote.
‘The physiotherapist is able to monitor and maintain range of movement in joints, muscles and postural changes.
The specialist physiotherapist also can maintain and monitor functional activities, which are essential for daily living and also provide further management and training around the use of equipment.’
Links formed with patients’ physios
The NMC maintains links with neuromuscular clinics including Dr Willis’s in Oswestry, and others in Birmingham, Manchester, Liverpool, and Preston, and it accepts referrals from hospital consultants and GPs.
Ms Storey says that patients travelling to the NMC from far away will be assessed by the centre’s own physiotherapy team which liaises with local physio teams providing regular treatment.
This can work well once connections have been made, but gaps in specialist neuromuscular care and regional variations in services were identified in 2009.
The All Party Parliamentary Group for Muscular Dystrophy’s highly-critical ‘Walton report’ said many neuromuscular services ‘fell well below a minimum acceptable level’, and talked of ‘second rate care.’
And the Muscular Dystrophy Campaign’s National Patient Survey 2013, published in January, highlighted ‘significant gaps’ in specialist care and support.
It revealed that over the previous two years, two-thirds of patients had not received any physiotherapy. Moreover, around half the respondents not received any specialist treatment, such as specialist physiotherapy.
Campaigners hope that the publication of the NHS Commissioning Board’s proposed service specifications for specialised neurosciences at the end of last year will lead to a more consistent and co-ordinated approach to services for people with muscular dystrophy and related disorders.
The service specifications appear as part of the NHS National Specialised Commissioning Groups’ work plan for neuromuscular services.
This includes a review of access for patients to services; consideration of the provision of specialist equipment; and the provision of care in the community. It also intends to develop a directory of services for patients, carers and health professionals.
Training for physiotherapy students
The service specifications for specialist neuroscience services in general recommend a three-tier service.
Tier one will provide local community and primary care services, including physiotherapy, where skills can be developed with the help of staff at specialist ‘hubs’, to provide ‘basic maintenance’ for patients.
The second tier will consist of multidisciplinary outreach clinics in ‘main population centres’. These will be provided by teams, including neuromuscular physiotherapists, visiting from the hub centres.
Tier three will be specialist care at tertiary centres which will be equipped to carry out the full range of neuro-related procedures, investigations and treatments, and will provide early access to other neuromuscular specialist clinical services.
The consultation on the specifications closed in January.
Gita Ramdharry, chair of the CSP-recognised Association of Physiotherapists in Neurology (ACPIN), describes the proposed specifications as ‘heartening’.
She hopes the hub and spoke system will reduce regional inequalities by cascading specialist knowledge out from the proposed hubs.
A focus in the proposals on improving transitional care from paediatric to adult services for patients with neuromuscular disorders was also welcome, but there was a lack of detail on providing services for older patients with neuromuscular disorders, she says.
Ms Ramdharry, who works in a tertiary centre, says access to the specialist services provided by her centre can be ad hoc.
Clinicians can be unsure of patients’ conditions – in part at least because there are around 60 accepted different neuromuscular disorders – and unaware of what specialist services are available.
The NMC’s physio specialists are keen to make their expertise and advice available to physiotherapists around the country.
‘There are people who know we exist, but they are only pockets and so from a physio point of view they may be struggling along on their own not really knowing we are here,’ says Ms Storey.
The centre is also introducing training for physio students at Keele, Manchester Metropolitan and Liverpool universities.
Physiotherapy for patients with muscular dystrophy and associated neuromuscular disorders is generally not covered in the undergraduate curriculum.
It is a rare condition, and it has only been over the last decade or so that improvements in treatment have meant that young people with a severe form of the disease survive into adulthood.
Night-time ventilation, cardiac monitoring and medication means that many now live into their thirties.
Adult services never saw these patients until very recently. Now they do treat these patients but their needs are very complex.
The centre employs six physiotherapists, and one assistant.
Its clinical specialist, Lynne Groves, is involved in research trials, national policy and care pathway development for muscular dystrophy. The other physios specialise in various fields, such as respiratory care.
New centre to open in Coventry
The range of treatments provided by the centre includes: hydrotherapy; muscle stretching techniques; assisted standing with tilt tables and specialist standing frames; acupuncture; and respiratory treatment and preventive care.
‘We now realise that for years people with muscular dystrophy were told not to exercise because it would wear the muscles out and be detrimental,’ says Ms Storey.
‘But we now know that exercise, and particularly assisted exercise, such as hand and stationary cycles, can be very helpful.
Contrary to a popular belief that their condition will not improve we have quite a few patients who have improved since they have been coming to us, but our main focus is to slow down the deterioration and to enable them to function better.’
Patients need not come with NHS funding, and there is no requirement for NHS funding before they are seen at the NMC, which is a charity.
But the service it provides is expensive so NHS funding is always sought, and the NMC applies to a patient’s primary care trust or clinical commissioning group for funding if a direct referral has not been made.
A research paper on physiotherapy at the NMC, written by Sandra Hartley and Rachel Stockley from the department of health professions at Manchester Metropolitan University in 2012 concluded that there was a need to ensure that treatment planning for patients with neuromuscular disorders must be ‘realistic, economically viable and empowering for the individual’.
The challenge for the future, the authors said, would be finding a balance between providing access to specialist physiotherapy without facilitating dependency.
A second NMC is being planned in Coventry, but many patients will still not be able to travel for regular physiotherapy. Links with physiotherapists around the country will remain vital if the NMC’s physios’ expertise is to benefit as many patients as possible around the country.
‘Whatever we can do to pass on our specialist knowledge we are keen to try’ says Ms Storey.
‘We want physios to know we’re here and to get in touch if they think we could help.’ fl
Hartley S, Stockley R It’s more than just physical therapy: reported utilization of physiotherapy services for adults with neuromuscular disorders attending a specialist centre. Disability and Rehabilitation 2013; 35: 4, doi:10.3109/ 09638288.2012.691940
The Neuromuscular Centre (NMC) was set up 23 years ago by a group of families, a special school teacher and a physio.
They were concerned about the care that children with neuromuscular conditions would receive once they left school.
While they wanted to provide treatment for those with muscular dystrophy, they also looked to provide advice, support, and training that would help patients lead as full a life as possible.
A key element is the fully-fledged graphic design business and training schedule that has grown with the NMC and is now run by a social enterprise set up by the NMC.
Design on computers is hugely accessible and empowering for those with physical disability, and during the last year NMC Design and Print provided 25 training places for IT and graphic design students, and 12 jobs for people with muscular dystrophy.
The design studio produces internal marketing materials and it has more than 150 external customers across the public, voluntary and private sectors.
The NMC surveys its patients for its annual social accounts.
The most recent analysis, for 2011 to 2012, shows that
- 100 per cent of patients believe their physiotherapy at the NMC has kept them out of hospital;
- 93 per cent say the treatment has reduced their number of falls;
- 87 per cent say the treatment helps them manage their pain; and
- 72 per cent say their NMC physiotherapist is the primary person in the management of their condition.
- Almost all respondents (96 per cent) say they have been taught to exercise safely by the NMC; and 79 per cent say the NMC enables them to understand and manage their own condition confidently.
For the first time, the NMC also sought the views of physiotherapists and clinicians working across the country’s five leading neuromuscular teams.
All five specialist consultants questioned said the NMC provided ‘maximum value’ for patients.
They were asked to propose ways that the centre could improve its treatment still further and suggestions included:
- increased liaison with tertiary neuromuscular clinics; training and liaison with local community therapy teams and potential shared care;
- and training of paediatric teams and schools to inform them of NMC services.
- For more information Visit: www.nmcentre.com
- For details of ACPIN, visit: www.acpin.org
- To download copies of the ‘Walton report’,visit: www.muscular-dystrophy.org/assets/0000/9943/Walton_report.pdf