Muscular Dystrophy UK’s new campaign and report ‘Overstretched’ is aiming to improve Physiotherapy provisions, they held an APPG (All Party Parliamentary Group) in Parliament on 19th July to take the fight to Governmental level.
There were 21 MPs in attendance and medical professionals, Mary Glindon MP (Vice Chair of the All Party Parliamentary Group), Dr Gina Radford (Deputy Chief Medical Officer), Dr Gita Ramdharry (Specialist Neuromuscular Physiotherapist & Associate Professor of Rehabilitation Sciences), Dr Anna Mayhew (Consultant Research Physiotherapist, Newcastle University) & Dr William Van’t Hoff (Clinical Director for NHS Engagement, National Institute for Health Research, Clinical Research Trust). I was in awe of following these talented speakers but I provided a patient’s perspective to connect the audience emotionally with the broader issue.
In the report there are various statistics complied from members of the MDUK Trailblazers network but the stat that unfortunately stood out for me was that 60% of people are unable to access appropriate physiotherapy.
The supposed aims of physiotherapy for muscle-wasting conditions are as follows:
- Optimize or maintain muscle function
- Anticipate, minimize or reduce risk of secondary physical complications
- Reduce risk of contractures and loss of movement
- Reduce likelihood of chest infections
- Reduce pain or discomfort
The main issue with physiotherapy is that it operates under the rehabilitation model in which any output has to either be a cure or visible improvement within a 6-week block. This model falls apart when faced with a progressive muscle-wasting disease with no chance of improving, however, appropriate physiotherapy is an important aspect of living with Muscular Dystrophy (MD).
In childhood, the developing body and the progression of the condition means that physiotherapy optimises function and minimises preventable complications like scoliosis, contractures or respiratory difficulties. Regular access to the right therapies will definitely help maintain independence for as long as possible.
This is all well and good but in reality many Community Physiotherapists have limited experience working with MD, resulting in aggressive exercises that are inappropriate or in fact damaging muscle tissue. Community Physiotherapy is often goal oriented or priority given to patients who are expected to show marked improvement. Goals for MD should be aimed at maintaining function and independence but this is not always recognised in referral criteria at community level.
With MD, it’s not like you can go to the gym and just get stronger. If you get too much exercise, the condition can go downhill. Due to my misdiagnosis I was given a vigorous physiotherapy regime and not allowed to use a wheelchair, this caused me to stop walking earlier then usual and left me with severe leg pains. It’s a balance act, so it’s important that you get the right kind of Physiotherapy in the right way.
Before I reached adult services the school Physiotherapist Sheila Hardy made sure I had a back operation to correct my scoliosis and an Achilles tendon release operation. With her expertise I can now reap the rewards of a straight back and correct posture. However my experience with adult services has been ad hoc, the first session of my 6-week block I discovered the physiotherapy department did not have a hoist or a comfortable couch for me to sit on. I then had a community physiotherapy visit my house but it was just to teach my Mum stretches to do regularly, with no follow-up appointments as the department were short staffed. Since then I have actively searched for physiotherapy so I was referred to NMC Coventry, it was brilliant to access a trained physiotherapist and osteopath that I could discuss specific issues I have like hand contractures. These exercises are still part of my current morning physiotherapy exercise regime, with tweaks when necessary.
Respiratory Physiotherapy (RP) is also vital for MD, being proactive by having access to a cough assist machine is essential to prevent unnecessary hospital admissions or loss of life however the NHS does not understand the importance. At 18 I was an emergency admission to hospital 3 times due to severe pneumonia – since found out to be due to aspiration of food – without the wonderful help of Glenfield hospital Respiratory Physiotherapists and a cough assist machine I would not be alive today. A cough assist machine saves lives along with specially trained RPs, my friend Tom Parker died as he went to a hospital with only generally trained RPs.
In conclusion, Physiotherapy provisions for rare neuromuscular conditions (NM) are severely lacking and drastic improvements are necessary, either by up skilling Physiotherapists to specialise in NM conditions or unlocking the necessary funds for equipment.
ONWARDS & UPWARDS