‘Taking part in research has given me an active role in my multiple sclerosis’ MS Awareness Week
Helen Rees Leahy was diagnosed with progressive multiple sclerosis (MS) in 1997. Over the last 30 years, Helen has worked hard to manage her condition and live as full a life as possible with her symptoms, which affect her mobility, and her physical and mental fatigue.
MS is a condition that affects the brain and spinal cord. There is currently no cure, but there are treatments that can slow progression and help ease symptoms.
When moving to North Wales from Manchester in 2020, Helen's care was transferred to The Walton Centre, as she had moved into the specialist Trust's catchment area.
She said: “I remember early on in my diagnosis that there was little they thought they could do to tackle MS other than watch and wait. Nowadays the consensus is that early intervention works better, but that wasn't the case 30 years ago. Over the years I've never qualified for medication or research trials, so I've always tried my best to look after myself.”
During Helen's care at The Walton Centre, Helen became involved in a trial called CHARIOT, which looked at the effectiveness of a drug aiming to slow MS symptoms in the arms and hands.
Helen continued: “It was the first time since my diagnosis where I felt like I was able to gain a bit of agency over my care. Even now, so little is known about MS, and I was delighted that I could take part in a trial to further knowledge and, potentially, treatment.
“It was amazing to be part of the trial, the team at The Walton Centre really made me feel like I was a part of something. Taking part in research has allowed me to feel like an equal part of the team, rather than a recipient, and I couldn't be more grateful for that.”
Phased over years, the trial involved half of the patient cohort receiving the drug Cladribine, and the other half receiving a placebo. The trial has now moved on to investigate the drug's effectiveness on lower limbs.
The Walton Centre's Neuroscience Research Centre has approximately 60 open studies with 700-1000 patients per year taking part. Studies can cover a wide range of areas. They may involve testing new treatments, collecting data to help us understand conditions better, or exploring ways to improve quality of life for people with certain conditions.
Helen said: “I don't know which I had: the drug or the placebo. But, what mattered to me more was the contribution I was making to the research. It's important that, even if I can't, future patients may benefit from my getting involved, which is a hugely rewarding feeling. I would encourage anyone who can take part in a trial or study to do so, the support and sense of purpose is not to be overstated.
“The Walton Centre has been excellent in supporting me and delivering the care I need over the years. They are only a phone call away, should I feel my condition change or worsen. I'm also incredibly appreciative that they are on the forefront of MS research, and able to recommend involvement in groundbreaking research.”
If you would like to know more about research at The Walton Centre, click here.
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Notes to editors
Further information, or to arrange an interview, please contact the Communications Team at The Walton Centre on 0151 556 3397 or wcft.communications@nhs.net
The Walton Centre NHS Foundation Trust is the only hospital trust in the UK specialising in neurology, neurosurgery and pain services. Although the majority of patients come from Merseyside, Cheshire, North Wales, Lancashire and the Isle of Man, for some specialist treatments of complex disorders we see patients from all parts of the country, referred by their GPs or other neurologists, neurosurgeons and pain clinicians.
The Walton Centre NHS Foundation Trust was rated as 'Outstanding' by the Care Quality Commission. The independent regulator of all health and social care services in England published its rating on Friday 21 October 2016, following announced and unannounced inspection visits to the Trust in April 2016.
For more information please visit: www.thewaltoncentre.nhs.uk or follow the Trust on Twitter, Facebook or Instagram.
The Walton Centre NHS Foundation Trust, Lower Lane, Fazakerley, Liverpool L9 7LJ
0151 525 3611