Improving Access to Specialist Neuromuscular Care

“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.

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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.accountability2The 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.

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The Build: LEGO Millennium Falcon

As a child LEGO was one of my favourite toys alongside my animal figures and cars. I had a box full of assorted LEGO bricks and a separate box for LEGO heads + accessories. I think LEGO has encouraged me to acquire important life skills such as how to be imaginative, mentally practical, logical & organized.

I spent hours designing cars or spaceships, but with a peculiar rule that each side had to be symmetrical. The plastic that the LEGO bricks are made out of is so durable that I’ve never broken any piece even though I’ve bitten a few and amazingly every piece has always fitted together perfectly.

I have always looked for a LEGO model with thousands of pieces even as a 12 year old, which meant the sets usually, had a 16+ difficulty. Ever since I bought the Rebel Blockade Runner (look at the list below) set I’ve always stuck to buying Star Wars models, I think it’s due to them being the most difficult builds. Since then I’ve been obsessed with Star Wars, reading the Expanded Universe books, comics and watching all the TV series.

Due to DMD my building method has constantly evolved over the years, from needing no support to needing full support so now I (the brains) direct my helpers (the brawn).

There were a few depressing years for me when I couldn’t physically press the bricks together or reach over to grab pieces that for 3years I decided to stop building LEGO. I didn’t want to have to ask anybody for help or an intrusion of my personal space. I never realized how important my arms were until I faced physical barriers to my enjoyment. However, now that I’ve worked through my psychological issues I can now enjoy building LEGO with assistance, to discover the fun and the satisfaction at the end.

The latest LEGO set the Millennium Falcon has been a joy to build with my cousin Keshan, we found a couple of rare mistakes in the instructions, different coloured pieces & the funny monotonous instructions to build 12 similar wings and walls.

During the build I point to pieces or places to attach bricks with a chopstick, like a conductor. The mentality I have to create solutions to the problems I face due to my physical limitations has encouraged me to focus on the abilities I have. Quality of life is very important for me and I’m sure other disabled people feel the same.

Over time when I wanted a Gameboy Advance or PS2 I decided to sell some LEGO sets via the Leicester Mercury newspaper. I met a guy called Lee who bought a LEGO for his collection featured in his garage, since then I always sell straight to him. He kindly offered to create a number plate for the back of my wheelchair from his work place.

LEGO sets I’ve owned over the years:                                            [Legend: Blue = I Still Own]

  • 3724-1: Dragon
  • 8070-1: LEGO Technic Supercar
  • 8081-1: LEGO Technic Extreme Cruiser

Star Wars LEGO Sets

  • Various Minisets
  • 75054: AT-AT Walker
  • 75096: Darth Maul’s Sith Infiltrator
  • 7191-1: (Ultimate Collectors Edition) X-wing Fighter
  • 10019-1: (Ultimate Collectors Edition) Rebel Blockade Runner
  • 10026-1: (Ultimate Collectors Edition) Naboo Starfighter
  • 10129-1: (Ultimate Collectors Edition) Rebel Snowspeeder
  • 10134-1: (Ultimate Collectors Edition) Y-wing Attack Starfighter
  • 10215-1: (Ultimate Collectors Edition) Obi-Wan’s Jedi Starfighter
  • 10018-1: (Ultimate Collectors Edition) Darth Maul Bust
  • 10225-1: (Ultimate Collectors Edition) R2-D2
  • 75105: Millennium Falcon

Thank you for reading about my history with the wonderful world of LEGO!

The Uncanny Road Trip

Adult life does come with more responsibilities, independence and future planning regardless of ability. Finding employment or career opportunities does involve some travelling. Having a disability like Duchenne which requires complex care does make travelling more complicated but not impossible. Able-bodied people do not have as many issues to consider when travelling in comparison to disabled people who face barriers before they can even enjoy themselves.

September was a month where I was regularly on the road. On 20th September, I travelled to the Olympic Park in London to attend Channel 4’s ‘No Go Britain’ discussion & then on the 23rd I visited Birmingham to meet colleagues from the wonderful Limitless Travel. They aim to make travel/holidays as simple as possible for disabled people without all the barriers. I’m glad to start my journey with the CEO Angus Drummond & Editor Claudia Knight from Limitless Travel.

img_4193-2I always travel in my adapted VW Caddy from my Motability benefit. It has a manual ramp, two sliding side doors and a wheelchair lock-in system designed for my wheelchair. In the past my PA or Mum would have to manually clamp/unclamp me using 4 straps, it was such a hassle to do especially in the rain. The car has 4 seats + me but the left seat has been removed for space.

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My mentality is to optimise my actions to create energy efficient or effortless outputs.

The care that I require throughout the day is not optional but essential for me to function 100% so I need to incorporate it during the journey. As a disabled person I feel it’s important to be organised because managing DMD is a huge commitment.

The List of equipment or care that I require on a day-to-day basis or whilst travelling on a long-distance journey:

Pain Medication – on a 4 hourly basis and administered via my gastrostomy (stomach tube) due to having weak swallowing muscles meaning I can easily choke.

Dedicated Medicine Bag – usually prepared the night before with pre-mixed doses of medication, 2 syringes and tissues to prevent my clothes from getting dirty.

Feed + Bag – I have a feed that provides me with all my required nutrients through my gastrostomy. It usually lasts for about 10+ hours. The feed pump is quite loud so when I leave the house I hide it in the bag attached to the back of my wheelchair.

CPAP Ventilator + Mask – I need to use my ventilator in the car because the chest strap I need to wear restricts my breathing. The added benefit is the ability to store energy for networking, speaking or enjoyment. It is a very heavy machine so I carry it around at the back of my wheelchair.

Inverter – allows the car to charge my ventilator which has a 4 hour battery life.

Conveen – a urine bag which is strapped to my leg underneath my trousers which holds 1000ml. The convene is a really important gadget for ease of travel, giving me control of when to use or empty it even in the vehicle.

Assistive Technology for my iPhone 5 + Arm – in the car I use a Jelly Bean Switch (the red button on my lap) to control my iPhone through a Hook+ switch Interface. The charity ReMap built the arm gadget that allows my mobile to be positioned at eye-level.

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When I arrive at my destination in London I have to go through the nightmare of finding disabled parking spaces but I have found a few spots, the good news is parking for 4 hours (opposed to the usual 3hours) which is enough time for Parliamentary meetings.

However, there are some problems that I have to contend with after travelling long distances. I am always exhausted the next day, neck/back pain due to the bumps on the journey & needing a quiet day with limited talking. This is one of the reasons that I don’t attend every Muscular Dystrophy UK event, regional meeting or my other interests with Limitless Travel or the Muscle Owl.

It is a balancing act between energy versus impact? Majority of the time I have organized my day into chunks that incorporate rest as well as using my experiences to help improve accessibility and promote disability awareness.

My next wish would be to book an overseas holiday through Limitless Travel, it has been 11 years since my last holiday in Portugal.

Finally, thank you goes out to my Mum who always encourages and supports the dreams & goals I have in life.