‘It’s not perfect. We don’t have a cure for MS, but we can offer a lot’
A WOMAN who has been living with Multiple Sclerosis (MS) for nearly four decades is experiencing lifeenhancing benefits from a drug for the first time, and is also participating in a groundbreaking new clinical trial.
Sue Davies, 66, expressed her newfound optimism, saying she feels the “feel-good factor” due to “amazing” research efforts.
She is among the many patients reaping the rewards of the MS Service at Morriston Hospital, which is marking its 20th year of operation.
Established in 2004 with a modest team of three, tasked with administering the initial treatments for relapsing remitting MS – the most prevalent type of the condition – the service has become a leader in enhancing patient care throughout south west and mid Wales.
With an expanding array of treatment options, the unit’s size and prestige have similarly increased.
The staff has quadrupled since its early days, and the service has extended its reach by setting up satellite clinics from Bridgend to Aberystwyth, as well as pioneering virtual consultations to serve remote patients. The team has ventured into clinical trials and crafted a comprehensive service that focuses on education, counselling, and maintaining patient activity levels.
Presently, patients benefit from swifter access to a variety of disease modifying treatments that decelerate the progression of MS.
The most commonly used drug, ocrelizumab, was trialled in the UK – and specifically in Morriston Hospital – before being made available across the world.
Sue, who was diagnosed with multiple
sclerosis (MS) in 1987, praised consultant neurologist Owen Pearson for “fighting for change”.
“When you think we are in Wales, not in London, it’s incredible what they have managed to achieve,” she said.
MS is a lifelong condition caused by the immune system attacking the myelin, the protective layer around nerve fibres. This stops the electrical signals from the brain running along the nerves to parts of the body. Patients, who are usually diagnosed between the ages of 20 and 40, experience a variety of symptoms including problems with walking, memory and vision, fatigue and pain.
Sue from Narberth has secondary progressive MS, which can develop later in the disease and for which, until very recently, there was no treatment.
Now she is taking a drug called fampridine, which was used in clinical trials at Morriston Hospital. These trials led to Wales becoming the first UK nation to approve the drug, which helps the nerves carry the electrical signals from the brain to the limbs.
It can improve a patient’s walking speed as a result. Along with other patients with advanced disease, she has also been recruited to a trial which is the first in the world to include patients in wheelchairs.
It’s testing whether disease-modifying drugs given to patients in the earlier stages can also help those who have already suffered disability. The results will not be known for some time.
“There’s no treatment available for people who can’t walk,” said Dr Pearson.
“NICE (National Institute for Health and Care Excellence) says there’s no evidence that treatments work (with these patients), so currently we have to withdraw treatment when they get to that stage. But because no clinical trial has recruited people in wheelchairs before now, we couldn’t get that evidence.”
Other trials are looking at new drugs, whether existing cholesterollowering drugs can be repurposed to slow disability progression in secondary progressive MS and potentially revolutionary treatments to reverse disability.
But Dr Pearson is keen not to get carried away. The final hurdle of trials is aiming for repair (remyelination), reversal or improvement of disability,” he said.
“We have been involved in one trial but it failed. One of the things is trying to manage expectations.
“It is with progressive MS where we are pushing the envelope.”
This envelope pushing has led to renewed hope for Sue, who was once told that there was nothing more they could do.
She said: “I can’t believe the change. Every year you see an MS nurse for a review and I have always said, ‘If there’s anything out there, let me know’. But I never got the call and then out of the blue I got a call at Christmas. It’s like a rollercoaster.”
Consultant neurologist Gillian Ingram, who specialises in MS, commented on the progress of MS treatment and the Morriston Hospital service: “It never stops. It never stands still.
“It’s not perfect now. We don’t have a cure, but we can offer a lot.”
“Now we see people having their first ever event and having their first treatment within weeks and months, whereas previously it could be years, which means that we can prevent people experiencing disability.
“Once they are diagnosed with MS they are offered an early follow-up with an MS nurse for support.”
Lead MS nurse specialist Helen Owen, who has been with the service since it was started by consultant Chris Rickards, added: “Previously, patients could feel abandoned after diagnosis. But we have seen a vast improvement in people’s care and can now offer much more support and treatment which can keep them well and out of hospital.”