Better services for people with muscular dystrophy and related conditions are in the offing, as Chris Mahony reports.
While the government’s healthcare reforms in England were navigating their turbulent passage through parliament, a successful lobbying campaign persuaded ministers of the risk that relatively rare conditions could slip off the radar.
Among the measures announced by the Department of Health in response was a three-year project in which the Muscular Dystrophy Campaign (MDC) was given £583,000. The money is funding a three-year project, Bridging the gap. Launched last year, it aims to secure quality services for people in England with neuromuscular conditions.
Training physio teams is a key part of the upskilling work taken on by the project Nic Bungay, MDC’s director of campaigns, care and information, says: ‘There are about 60 types of muscular dystrophy and related types of neuromuscular conditions. Physiotherapists might go through their whole career without encountering one but given their regular contact and involvement in management of the conditions we know physios are really important.’
As well as regional training sessions for physios, the project has a physio working group that is acting as a sounding board and helping to shape ongoing work and training. Next year will see the launch of an online training resource for physios.
Meanwhile work is very much underway on the ground, although in truth, for the likes of specialist paediatric neuromuscular physio Beverly Toms, the campaign so far has provided welcome funding for specialist physio meetings and other local initiatives rather than directly funded her own education work.
‘They have made it clear they are willing to fund projects around upskilling community physios so I am sure I will be tapping in to this,’ she says.
While based at the Bristol Royal Hospital for Children, her role is half clinical and half education and training. She has counterparts working with adults with neuromuscular conditions.
Good communication is vital
As a former community physiotherapist, Ms Toms has a particular insight into the challenges her former colleagues face both generally and in ensuring they can access the latest information and support around patients with rare conditions.
‘Training comes in various guises – not just through formal training days. There are lots of ways of upskilling and increasing knowledge and skills. The Bridging the gap project recently outlined the form of training and upskilling around neuromuscular conditions that could be useful for physios. I was glad to see it was the sort of thing I had been doing. If you are going to do training you really need good communications with your community physios and we try to engage with them in many ways.’ This includes ‘hands-on’ training in clinics and discussing individual cases involving conditions the community physio had not encountered before.
Families can become experts
Ms Toms is a source of advice on possible symptoms and, following diagnosis, the possible progression of a disease the physiotherapist might not have previously encountered.
‘I invite the community physiotherapists to come to my specialist clinic as a way of improving knowledge and to do assessments together. That way I can give advice about interpreting symptoms and it is good that parents and the child can see the community physio and specialist physiotherapist working together.’
There are other less obvious and clinical advantages, Ms Toms says: ‘Community physiotherapists often get to know their families really well. Because they have been seeing them regularly for years, they can give an overall picture of how things are going and any non-medical issues.
‘With rare conditions training is important because often families become experts – not least because they sometimes have to repeatedly explain the condition to professionals. It is important that health professionals have the skills and knowledge to be confident in working with the family so they have confidence in you.’
Best practice guidelines
Ms Toms is part of the South West Neuromuscular Operational Delivery Network. The network is a specialist clinical and support service for children and adults living with a neuromuscular condition in south west England. Among other educational and support initiatives the network provides is a bi-annual conference on neuromuscular conditions which is well attended by community physiotherapists.
Ms Toms also helps develop core competencies in this area for physios.
She regularly sends the latest best practice guidelines or research to the community teams, often to a specific individual who has developed a special interest in neuromuscular conditions and can act as a first point of contact with a community team.
One such specialist community children’s physiotherapist is Philippa Hilton. She is a community paediatric physiotherapist with North Bristol NHS trust. Ms Hilton, who has four children with neuromuscular conditions on her caseload, says: ‘With our jobs we have so many conditions across our caseloads and you never know what is going to be happening with the next child coming through the door for an assessment. Beverly has given us two talks so far – one around her work and neuromuscular conditions and one around spinal muscular atrophy. The most important thing is she knows how we work and is so approachable if we need advice over the telephone or email. She will often suggest joint visits to see a child.’
Staying ‘one step ahead’
Ms Toms’ practice of inviting a child’s community physiotherapist to the specialist clinic also goes down well with Ms Hilton.
‘We always try to attend those appointments or at least send Beverly a detailed report because we know the nitty-gritty stuff on the ground like any problems at school. That fits well with the really in-depth functional assessment that Beverly and her colleagues do.’
Ms Toms continues: ‘This is a very upsetting disease. Sometimes a family will put on a brave face in the (specialist) clinic but that is not always how they feel. It is often a shock because the child can be several years old before getting a diagnosis. It is important that we are one step ahead of those parents on the internet and the information Beverly supplies on the latest best practice really helps with that.’ fl
For more information see Bridging the gap.
What is muscular dystrophy?
Muscular dystrophy is a group of genetic conditions which compromise the body’s ability to build or repair muscle, causing muscles to weaken and waste over time and 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.
More than 70,000 children and adults in the UK live with a form of muscular dystrophy, or a related neuromuscular condition.
Jane Mellor’s story
Jane Mellor is the mother of a 20-year-old daughter with congenital muscular dystrophy. As a community physiotherapist, she knew the importance correct condition management to maintain the ability to function quality of life.
‘While my daughter was in a residential school and college for eight years, accessing key professional support was relatively easy. On leaving, services were fragmented but eventually, with great determination from both of us, we did find them.
Physiotherapy, my own profession, is the least supported service.
Hydrotherapy is the most beneficial form of physiotherapy in managing scoliosis and contractures as well as great for stamina building. Our local NHS pool assessed my daughter and offered hydrotherapy sessions. However, the pool was not set up with the correct hoisting equipment for the complex neuromuscular patient.
During the transition period there was no clear referral system onto the adult services.
My daughter has never seen a community physiotherapist. Possibly GPs are unaware of how physiotherapists work.
Community physiotherapists can support the long-term management of neuromuscular conditions: exercise provision, carer advice and support, tissue maintenance, postural correction and support, respiratory problems, equipment, wheelchairs and more.
Specialists training community and neurological physiotherapists will improve the knowledge and understanding of these often complex conditions.’
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