Core PPI Group

I was diagnosed with ankylosing spondylitis in my late twenties which I largely managed to ignore, despite the recurring pain, by continuing with a normal and reasonably active lifestyle, including activities such as walking, skiing, cycling, and swimming. Unfortunately, I am now also suffering with rheumatoid arthritis which has curtailed things a bit, but that could also be down to age getting in the way.

An engineer by background, having worked on various technology developments and commercialisation, I like to know why “things” happen. I hope these experiences, combined with participation in previous NHS research initiatives, will allow me to assist in the refinement of future studies.

I am a media communications professional. I started my career as a journalist, working for various business magazines in London before moving in to PR, joining a large agency in the city. I turned freelance some years later.

My interest in PPI began during COVID. I had been diagnosed with bilateral hip dysplasia and osteoarthritis in 2016, but it was during lockdown that I started to struggle with arthritis symptoms. The experience led to a keen interest in musculoskeletal disease progression and research involvement.

I am a member of several PPI groups and find the work incredibly rewarding. In my spare time I like to write my blog and lift weights down the gym.

I was diagnosed with Psoriatic Arthritis (PsA) five years ago. I accept now it started many years before, but I had chosen to ignore it despite obvious damage to my finger and hand joints.

When diagnosed I decided, despite good advice, to follow numerous alternative treatments, which turned out to be my mistake as the PsA was not controlled. Now I have a damaged ankle, am on a combination of drugs, including a biologic, and when the arthritis is under control will explore surgery.

I worked in Marketing, Research and Advertising for 40 years, initially in Birmingham and Newcastle and then moved to London.

My interest in PPI first started in 2019 when I attended a day conference in Aberdeen on research into PsA .I came to realize that patients and public could play a valuable role in the focus and design of research studies.

I am a longterm volunteer with a homeless shelter in London. I do Pilates and Yoga (badly) and keep meaning to swim regularly.

Michelle has suffered with Psoriatic arthritis for 37 years. She is a patient representative and founding member of the Friends of the Highland Rheumatology Unit (HRU) in Dingwall and was involved in the redesign of Rheumatology services. She sits as a Public Independent Member on the NHS Highland Health & Social Care Committee and is part of a short working group looking at community engagement.

In 2019 through work with the HRU she became involved with the Epidemiology RHEUMAPS Study as a patient partner.

Away from her busy volunteering work Michelle is secretary in her husband's Fabrication business, a DJ on a small radio station and “relaxes” by reading or making cakes.

Michelle relishes the challenges that her volunteering work has brought her, and tries hard not to let her arthritis dictate her lifestyle. The introduction of biologics has given her back a life she thought she had lost in her late teens.

Of her involvement with the Epidemiology Group at the University of Aberdeen, Michelle says “I feel that patient involvement helps researchers see things differently through the eyes of the patient. It educates from a “lived experience” perspective and you feel valued by the team, who listen and really take your contributions seriously. I feel incredibly grateful to be involved with the Epidemiology team and find the research fascinating. Being involved as a patient partner is very important to me as I feel like I'm making a difference for the quality of life for other patients.”

I was diagnosed with Psoriatic Arthritis about 18 years ago now and at times have struggled to get the right medical care. I now have significant joint damage, particularly in my right wrist which is a real pain, literally, as I'm retired and a very keen gardener (and yes I am right handed). My disease became more active in 2021 and I'm now using a biologic medication, but have had trouble with bad side effects which has meant chopping and changing the medication.

In the dim distant past I was a medical physics researcher and I'm still a scientist at heart, so I am keen to do everything that I can to increase the understanding of the disease, and related diseases, in the hopes that others do not struggle to get the right care and get better outcomes. I'm also keen to help researchers understand what is important to patients, as that might not be what they initially think.

I also put myself forward for any relevant research projects that I learn of and am currently a participant in two research projects.

What one message would you have for researchers?

Make sure your survey questions are clear and unambiguous, as its very frustrating to be completing a survey and be unsure if your time is being well spent, or even to be worrying about whether you will be messing up the results.

What message would you have for others considering getting involved in PPI?

Do it - it's interesting and rewarding and I'm really glad that I've got involved.