“Never backwards, always forward. Always.” – from the Marvel series Luke Cage
On Tuesday 18th October I attended MDUK’s All Party Parliamentary Group (APPG) calling for improvements accessing specialist neuromuscular care.
APPG’s are an important aspect of MDUK’s role to make changes for people living with muscular dystrophy, giving us the right platform to voice our concerns to the people in power and educate them on what is important from the patients’ perspective.
Mary Glindon MP chaired the APPG; in attendance were professionals from NHS England:
- Jacqui Kemp – National Programme Of Care Senior Manager.
- Anthony Prudhoe – National Programme of Care Manager for Women & Children’s Specialised Commissioning
- Prof Adrian Williams – Consultant Neurologist & Chair of the Neuroscience CRG
- Carolyn Young – Programme of Care Lead for NHS England (Midlands + East)
However, it was a pity that representatives from CCG’s were absent because they are an integral part of how we can access specialist care. In essence CCG’s hold the purse strings meaning NHS England buy services off them.
Nationally NHS England follows the rehabilitation model of physiotherapy so needs to show positive outputs or cures, the difficulty arises when faced with deteriorating conditions like Duchenne with no chance for improvement. However, regular physiotherapy is vital for muscle function maintenance and contracture prevention. The benefits of physiotherapy for people with MD should be measured by quality-of-life rather then using illogical positive outputs.
Personally, since joining Adult services I’ve only had one physiotherapy session with a physiotherapist without specialist neuromuscular training. The therapy room was unsuitable; there was no hoist present so I had to wait for it to arrive from another department and then the couch I had to lay on was too hard. I’ve never been back since. Luckily I discovered the NMC Midlands with a specialist neuromuscular physiotherapist, the first session was wonderful and the exercises were tailored for my specific issues. Since then I make sure that my hand, arm & leg exercises are done every morning.
Respiratory physiotherapy is also an essential part of managing your DMD, I could not live a full life without medical interventions like a LVR bag, CPAP ventilation & cough assist machine. Understanding how my lungs function or feel, how increased CO2 levels negatively affected my body, how my speech or swallowing is impacted was a way for me to take full responsibility of balancing both Duchenne and the life I want to lead. Leicester has an excellent respiratory Department with a dedicated consultant Prof Morgan and physiotherapists. However, our senior respiratory physiotherapist Jo Smith has left recently, her job post has been replaced but it’s a worrying change.
Finally, community physiotherapy is absent in Leicester (and lacking nationally); it is an important support service for DMD patients. For example, during a chest infection I’m severely ill so unable to move or breathe myself, it’s a life-and-death situation. GPs usually have limited knowledge of rare neuromuscular conditions so always advise an unnecessary emergency hospital admission. If a respiratory physiotherapist could visit home at that time it would really help, the environment at home is more accessible than A&E or Respiratory ward. Furthermore, community physiotherapy can help to teach patients/carers how to use ventilators or cough assist machines in their natural environment to fit into your lifestyle. Few visits from community respiratory physiotherapy would prevent deterioration of the chest infection alongside antibiotics I could recover fully at home. It’s a logical idea for NHS England to adopt in order to save money and even prevent the deaths of people with Duchenne or other conditions.The APPG meeting highlighted the question of accountability we still face when dealing with CCG’s and NHS executives. We had a similar APPG 2 years ago with similar rhetoric from NHS England saying their hands are tied because major changes can only come from CCG’s. For the life of me I’ve never seen a representative of a CCG, the issues NM patients face does not seem highly important.
During this confusion over accountability or funding NHS England & CCG’s do not realise that innocent lives are in the balance, these sorts of care services are not a luxury but a necessity to have a quality of life. People living with muscular dystrophy are not statistics or £ signs but real people who want to contribute to society.
I would like to end on a positive note and thank Muscular Dystrophy UK & Mary Glindon MP for providing neuromuscular patients the right platform to express vital issues constructively to the government.