‘Cerebral palsy made me battle my body until I wore this bodysuit but I can’t keep it without NHS funding’ – Telegraph.co.uk

It is a strange feeling to one day awaken from your slumber to discover that you are in an entirely different body, so far removed from the one which you had been fiercely battling for the past 24 years. This is the situation I found myself in a few weeks after I had started a three-month trial of an innovative medical intervention called the Mollii suit.

The Mollii suit is a soft two-piece skin-tight garment that is worn for an hour a day and delivers electrical stimulation, not too dissimilar from a common TENS machine, via the 58 electrodes sewn within it.

The suit, which is not currently funded on the NHS, is used for reducing spasticity and improving motor function. It works by stimulating underactive muscles to counteract the amount of tension, referred to medically as tone, in the opposing muscles (a principle known as reciprocal innervation). According to Richard Welch, director of UK distribution of the Mollii, "the suit is effective for users with a wide variety of primary diagnoses such as cerebral palsy, brain or spinal cord injury, multiple sclerosis, stroke and other neurological conditions."

Having been born with complex quadriplegic cerebral palsy, my physiotherapist first mentioned this new and relatively obscure stimulation suit to me in February last year. Arriving at the initial assessment for the Mollii, I had little hope, not because I was inclined to pessimism but rather because experience had taught me that optimism in relation to medical treatments was dangerous. When a new drug, equipment or walking aid fails to have a positive effect, the result can be heart-breaking disappointment.

The assessment, a crucial step for anyone wishing to explore this treatment, was thorough. Specially trained physiotherapists examined all of my movements, identifying the muscles which would benefit from a reduction in spastic tone and programmed the control unit of the Mollii to target these. These muscles included (but were not limited to) my quadriceps, calves, gluteus maximus and biceps.

With each electrode needing to be exactly situated at the end of each muscle group and in direct contact with skin, it took the help of three people, grappling with the suit for 15 minutes, to zip me into the Lycra-esque garment.

Once the suit had been correctly fitted, the control unit was attached, and my first hour of treatment began. The phrase 'electrical stimulation' can be daunting, invoking images of the executioners electric chair. Thankfully, the sensation you feel when wearing the Mollii is far less dramatic, more akin to a tingling or stinging sensation.

While you are undergoing treatment in the suit, you are not confined to one position. Instead, you can continue to go about your daily business. However, as the garment is not the height of fashion, it is often worn when at home.

After the hour had elapsed, I was surprised to see that the suit had worked. My usual high muscular tone, which renders my legs rigid, had all but gone. I was able to completely straighten my right arm, which had previously refused to extend at the elbow beyond 80. And when standing, I could feel my heels were in contact with the floor, a sensation which had hitherto eluded me as I had stood on tippy toes rather like an ungraceful ballerina.

I felt like I was in a different body. While I was weak and fatigued from the treatment, I was also unrestricted by spasticity for the first time in years. The effects lasted for 48 hours, after which my high tone and pain came back with a vengeance. Thankfully, the Mollii suit is designed to be worn every other day.

Less happily, the suit is not available currently on the NHS. The National Institute for Health and Care Excellence (NICE) says that "the current evidence base for this technology is low in quality and quantity". You can buy the technology privately, but at 500 a month to rent or 4400 to buy, it's beyond my means as a recent graduate who's incapable of work due to ill-health.

I had to proactively petition the NHS for funding to trial the suit and when it came through last year, I was only the second person in the UK to have secured funding from the NHS for the Mollii trial.

To me, the suits effects are nothing short of remarkable, compared to traditional medical treatments of my condition. A removable garment, it carries minimal risks whereas the treatment options approved by the NHS that I've explored are often invasive. I've visited multiple consultants and heard various proposals about how they would cut into my body. One neurologist talked me through his desire to open my skull and embed metal rods deep into my brain.

Another registrar seemed unable to grasp my reluctance for such invasive surgeries, concluding the sales pitch of his particular neurosurgery with the phrase its free. Those words were not only inappropriate but ludicrously inaccurate, as the treatment under discussion costs the NHS the same if not more than the price of the Mollii suit.

While the trial has transformed my life, it has also taught me that there are both perks and pitfalls to being one of the first patients to receive a new medical treatment. When trailing a treatment which is in its infancy, you are breaking new ground, and therefore the concrete answers to the questions that arise during a trial don't necessarily exist. Twice during the trial, the suit appeared to become less effective. While the Mollii professionals experimented with the settings until the suit was working once again, there was limited literature to consult and my questions were met with conjecture.

That being said, it was a privilege not only to have access to the Mollii but to be able to contribute to the ongoing research studies into this technology. Working closely with the manufacturers of the Mollii, I copiously documented my experience, in the hope that it would provide a greater understanding of the treatment to others. In the future, I would like to see this electronic stimulation suit viewed as a viable alternative to conventional treatments by the medical community.

The last three months have been emotionally draining. The obvious positives of the trial a reduction in my pain levels, medication and stiffness were initially accompanied by an unexpected pang of grief for the years I had lost, immobilised by pain and prevented from looking to the future by large doses of drugs which clouded my thoughts. Throughout the trial I reduced my reliance on medication, eradicating my need to use particular muscle relaxants entirely. At the beginning of the trial I was taking approximately 140 tablets a week. By the end of the three months this number was reduced to just 56. I felt pressure to use this gift of a clear mind to immediately catch up with my peers and have both a career and social life

With time, this feeling passed and I began to appreciate every milestone I reached with the help of the Mollii suit. For instance, I vividly remember the day when I balanced unassisted for 30 seconds an easy task for most but one I had never before achieved.

As I write these words, at my desk in The Telegraphs London office, on work experience, it strikes me as poignant that without the Mollii I would not be here. Life before the Mollii is hard to remember, as if my mind has repressed all recollection of the agonising pain that was my constant companion. On an average day pre-Mollii, I was confined to bed, watching mindless television, intoxicated by strong painkillers. Yet over the last few months the Mollii has given me hope, afforded me the opportunity to venture into the world of work and plan my future.

Unfortunately, my three-month Mollii trial ended in December and uncertainty looms. I await the NHS decision as to whether they will agree to purchase this suit, which has enhanced my life so much.

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'Cerebral palsy made me battle my body until I wore this bodysuit but I can't keep it without NHS funding' - Telegraph.co.uk