“If I can give something back, I will!” - Vascular patients are shaping research

When Samantha Wyles first felt some niggling aches and pains in her foot, she put it down to getting older.

But when her daughter-in-law noticed that the underside of her toes appeared to be turning black, she went straight to the GP and a quick referral to hospital led to a diagnosis of Peripheral Arterial Disease (PAD) and the discovery that she had  blockages in an artery in her leg.

PAD is a common vascular condition that describes a narrowing or blockage in the arteries of the legs or arms, usually the legs. PAD affects approximately 20% of people over the age of 60 in the UK, although people younger than this may also be diagnosed. 

Despite undergoing several lower limb angioplasty procedures, which aimed to restore blood flow to her foot, Samantha was eventually forced to undergo lower leg amputation after also contracting sepsis (a severe infection).

Samantha, from Coalville started to adapt to her new reality, making use of a prosthetic leg to get about, but two years later the unthinkable happened.

She began to experience pain in her other foot. Further artery blockages were discovered and, despite the efforts of surgeons to prevent it, her other leg had to be amputated.  

The 57-year-old who used to care for young people with disabilities is now a double amputee herself and requires a wheelchair to get around. 

Samantha has recently joined a registry of people with different vascular conditions, in the hope that she may be able to shape future research into PAD.

The UK Vascular Research PPI Registry, or ‘The Registry’ as it is known by its members, was created in May 2023 by University of Leicester Research Assistant Imelda Black. It is a list of volunteers with personal experience of, or an interest in, vascular conditions such as PAD and Abdominal Aortic Aneurysm (AAA).  

PPI is a short term for Patient and Public Involvement. Members on the Registry are contacted when new vascular research studies are being discussed by health professionals, to ensure that patient and public opinions and experience are included within the design.

Samantha says life is a struggle and she hopes that being part of the Registry will enable her to help others in a similar situation. 

“If I can give something back I will,” she said.

“I think there needs to be greater support out there for people like me and this is one way of sharing that and hopefully doing something about it, whether through voicing my opinions or taking part in future research.” 

Mike Dawson, 82, is also a member of the PPI Registry. Diagnosed with PAD around three years ago, he has successfully been treated with lower limb angioplasties. 

“It started with aches and pains in my right calf but progressively got worse until my foot became bruised and black to look at,” he said.

“The nurse at my local surgery referred me to the Foot Clinic at the General Hospital in Leicester where they told me I could lose my foot. I was assessed at the Glenfield Hospital Vascular Limb Salvage Clinic and then operated on to fit stents in my right iliac artery so that the blood could flow properly to my foot. The functioning of my stents is checked every six months at Glenfield using ultrasound. I can’t thank enough the nurse who initially referred me and the surgeons who operated.  I’m very active and my life could really have changed or been taken from me but for the speed of my treatment.

“I’m glad to be part of the Registry. I’ve been consulted as a PAD patient and it means I can give a little something back and maybe help shape things for the future.”  

Judy Shore, age 68 from Weston-super-Mare, has been told that she is unsuitable for an angioplasty, due to the nature of the artery blockage in her leg alongside her other health conditions. She has been prescribed blood-thinning medication as an alternative.  

She has an early stage of PAD called claudication which means that she experiences extreme pain when walking short distances but, as walking is the best way for her to increase the blood flow to her foot, she takes her dog out every day and tries her best.  

Judy joined the PPI Registry in November 2023, and has given input to eight vascular research projects taking place in Leicester, Cardiff, Birmingham and London.

“Living with PAD and claudication is hell because, in my case, there is no respite from the pain,” she says matter-of-factly. 

“But if my situation can inform research design and be of help to other people like me in future then that’s something positive.”

There are currently over 60 individuals from around the UK who have volunteered to join the Registry and Imelda Black, who created the Registry and now leads it, is always looking for more people to sign up and have their say in vascular research design.

“The patients and members of the public who come forward to help us shape research are all amazing,” she said.

“PAD is often a life-changing and life-limiting condition. It’s a common diagnosis, but somehow flies under the radar when we talk about our health. Many people who receive a PAD diagnosis have never even heard of it. 

“Our PPI participants use their experience of this painful condition to help researchers understand how best to roll out their projects in a way that gives understandable information to patients, and their feedback will ultimately help to improve future treatments for PAD.”

“In October a study which investigated the causes behind amputations in the UK, led by University of Leicester Professor of Vascular Surgery Athanasios Saratzis, concluded that quicker diagnoses of conditions including PAD could save around four out of five patients from the life-changing surgery.  The study was supported by medical device company Abbott, who were not involved in the analyses of the data.

The report said that greater awareness of the early symptoms of Peripheral Artery Disease among patients and medical professionals was needed. 

To join the Registry or find out more please contact Imelda by emailing PPIVasc@leicester.ac.uk.