'Pushing the envelope' leads to renewed hope for Sue

A woman diagnosed with Multiple Sclerosis (MS) almost 40 years ago is on a life-improving drug for the first time ever in her illness and is part of a new world-leading clinical trial of another.

Sue Davies, 66, pictured above, said that she has the “feel-good factor” thanks to “amazing” research.

She is one of thousands of patients to benefit from Morriston Hospital’s MS Service, which is celebrating its 20^th anniversary.

Since its inception in 2004 with just three staff members to prescribe the first treatments for relapsing remitting MS, the most common form of the disease, the regional unit for patients in south west and mid Wales has been at the forefront of improving patients’ lives.

As the number of treatments available grew, so did the unit and its reputation.

Over the years the workforce quadrupled and the unit has developed a number of outreach clinics from Bridgend to Aberystwyth, while also becoming an early-adopter of virtual consultations for rural patients.

Morriston Hospital's MS Service team. Consultant Neurologist Owen Pearson, centre of front row. Credit: SBUHB

The team has progressed into clinical trials and the development of a holistic service, which educates, counsels and keeps patients active.

Nowadays patients have earlier access to multiple disease modifying treatments, which slow progression.

The most commonly used drug, ocrelizumab, was trialled in Morriston before being made available across the world.

Sue, who was diagnosed in 1987 after an episode where she found herself unable to walk up a hill at Oakwood Theme Park, 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 wide 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 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.”

Staff in Morriston Hospital's Clinical Research Unit Credit: SBUHB

Other trials are looking at new drugs, whether existing cholesterol-lowering 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 by Owen 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 just like a rollercoaster.”

It’s also the first clinical trial for Susan Lawrance, 62, from Ponthenri in Carmarthenshire.

She was diagnosed on her 21^st birthday.

“I don’t think I will lose anything by being on the trial,” she said.

Susan Lawrance, 62, with husband Brian. Susan has MS and is taking part in a clinical trial. Credit: SBUHB

Reflecting on how far MS treatment in general and the Morriston Hospital service has come Gillian Ingram, Consultant Neurologist with a specialist interest in MS, said: “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.

“We offer a newly-diagnosed day twice a year, one of which is in person and one virtual. And early follow up to offer disease-modifying treatment. The drugs are fundamentally better.”

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.”