Update on Vivek: Taking the fight to the top

On Tuesday 18th October, I attended Muscular Dystrophy UK’s (MDUK) All Party Parliamentary Group (APPG) about improving access to specialist neuromuscular care.

Mary Glindon MP chaired it; in attendance were 4 professionals from NHS England. It was a pity that representatives from local CCGs (Clinical Commissioning Groups) were absent as they are central in how we access & fund specialist care.

Nationally NHS England likes obvious improvements from physiotherapy, the difficulty arises when faced with deteriorating conditions like Muscular Dystrophy. Regular physiotherapy for MD is vital for muscle function maintenance, contracture prevention and to enhance quality-of-life.

Since joining Adult services I met a physiotherapist without specialist neuromuscular training. The therapy room was unsuitable; there was no hoist and the couch was too hard. I’ve never been back since. Luckily I discovered the NMC Midlands in Coventry (a fair distance from Leicester) with a specialist neuromuscular physiotherapist on staff, the first session was wonderful there plus exercises were tailored for my specific issues.

Respiratory physiotherapy is also an essential part of managing your Duchenne Muscular Dystrophy (DMD); I could not live a full life without medical interventions like a Lung Volume Recruitment bag, Continuous Positive Airway Pressure ventilation and cough assist machine.

Community physiotherapy is absent in Leicester (and lacking nationally); it is an important support service for DMD patients. For example, during a chest infection it’s a life-or-death situation. GPs usually have limited knowledge of rare Neuromuscular conditions so always advise an unnecessary emergency hospital admission. A few visits from community respiratory physiotherapy would prevent deterioration of the chest infection so, 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 questions of accountability we still face with CCGs and NHS executives. We had a similar APPG 2 years ago, with similar rhetoric from NHS England about their hands being tied because major changes can only come from CCGs. This being said, I’ve never seen a representative of a CCG; the issues Neuromuscular patients face does not seem highly important.

During this confusion over accountability or funding, NHS England and CCGs do not realise that innocent lives are in the balance; specialist care services are not a luxury but a necessity for disabled people. People living with MD are not statistics or £ signs but real people with real lives.