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How research can give patients a voice

by Guest Author on 4 Apr 2018

Eilean MacDonald

Eilean MacDonald was diagnosed with childhood arthritis when she was only a baby. 18 years on, as well as dealing with normal teenage life and managing her condition, she’s helping MRC researchers on a stratified medicine study to pick the right treatment, first time, for future patients.   

It all started when I was 18 months old and I bumped my knee. My parents noticed that the swelling wouldn’t go down, and took me to our local hospital. They ran tests but the doctors couldn’t figure out what was wrong, so I was referred to the rheumatology department at Alder Hey children’s hospital, where I was diagnosed with Juvenile Idiopathic Arthritis (JIA).

At first I was lucky. An ibuprofen derivative helped reduce the swelling, and shortly after I didn’t need any medication at all. But in ­­in my late primary school years things changed. The swelling in my knee returned. New oral steroid-based drugs caused painful side effects, including mouth ulcers that made it difficult to eat and even talk – I didn’t last long on that medication. I also needed regular steroid injections into my joints under anaesthesia, for seven years.

Finding the right treatment

Eilean MacDonald

During my secondary school years, the arthritis moved to my other knee, both of my ankles, and my left thumb. I was prescribed an immunosuppressant medication called methotrexate which I took for two years. I hated it so much, and dreaded taking my weekly tablets as they made me feel so nauseous as a side effect. But for me to try other, newer medications, I had to try methotrexate first – for at least a year. For some people methotrexate works great, but unfortunately it didn’t for me and I was finally taken off it when it made me sick. After that I was put on an amazing drug called adalimumab, which works brilliantly for me.

Despite the effectiveness of adalimumab, one day in year 11 I had an awful pain in my ankle that didn’t go away. After a lot of hospital trips and scans, doctors discovered that I had no cartilage in my ankle joint and my bones had been grating together, resulting in a series of painful surgical interventions. After the surgeries didn’t work as hoped, my ankle joint fused itself together in an inadequate position, leaving me unable to walk properly.

I’ve now been on crutches for 2 years and am waiting on a full ankle replacement.

Eilean MacDonald

It’s been difficult. I have had to give up things I love and sit out of things that I desperately want to do. I miss dance so much and plan to go back when my ankle is sorted, hopefully. Having to deal with this level of pain 24/7 and the fatigue is hard, especially in my A-level years and when I’m trying to be a normal teenager.

But although there are a lot of negatives, I’ve also experienced some positive things due to JIA. It has allowed me to meet some amazing people and take part in some things other people can’t – the CLUSTER study and Your Rheum group. Your Rheum is an advisory group for young people with a rheumatology condition to have their say, and help  shape current adolescent and young adult rheumatology research in the UK.

Being more than a patient

I have the honour of being patient lead on the CLUSTER study, which is funded by the MRC. CLUSTER is a five-year project following the health trajectories of 5,000 children with JIA. The aim is to create a simple biomarker test that will lead to personalised treatment. Being patient lead has allowed me to talk to people at the frontier of research and get involved in the team as a patient representative, giving opinions and ideas. The experience and everyone I’ve met have been amazing; it’s been a wonderful opportunity.

Eilean MacDonald

For patients to have such a big involvement in projects like this is so important. You get to be a part of the future and the bigger picture. You feel like you’re not just a patient, you’re not just providing samples, you have a voice, you’re part of something much, much bigger.

How research can change lives

For the next generation of kids with childhood arthritis this research could mean they won’t have to go through what I did. They could have the right therapy handpicked for them, reducing the impact it has on their lives. If this feature was available when I was diagnosed, I could have been on the best medication for me from the beginning. I may not have had all the issues I described and could be living a different life right now. That’s not the case for me. But it could be for a kid like me. This study is changing the treatments for kids with JIA and changing their lives simultaneously.

More about CLUSTER and the MRC Stratified Medicine Initiative

CLUSTER, led by scientist at UCL and GOS Institute of Child Health, is one of four stratified medicine projects being funded by the MRC. Stratified medicine, also referred to as personalised medicine or precision medicine, is an emerging approach for disease diagnosis and treatment that considers patients’ genes, environment and lifestyle to create tailored therapies instead of a one-size-fits-all approach.



What nonsense patients don’t have a voice anywhere in health care!

author avatar by K woodward on 04-Apr-2018 16:55:56

Replying to K woodward

Hi K Woodward
As the author of this article I’d just like to say that I kindly disagree with you. Although it may seem like we do not have a voice in some ways, there are plenty of ways to get involved in research projects if you seek them out. Although we may not dictate the exact topic of research, this does not mean our opinions are not paramount within them. An increase in patient involvement comes with time and willingness from both studies and patients. Studies are increasingly seeking out patient opinions, and this is most definitely true for the CLUSTER study I am a part of, which prides itself in patient involvement. I hope patient involvement continues to grow across all studies. A step forward is progression that should not be overlooked. I hope you can understand my opinion. 🙂

author avatar by Eilean MacDonald on 05-Apr-2018 14:25:53

I agree with Eilean, and feel that I have personally had a voice in health-care delivery and research for 20 years, starting with membership of my local Community Health Council in 1998 and since then representing public and patients with NICE, NIHR, CQC, British Heart Foundation, local and national NHS, MRC (yes!), university departments, Pharma, etc, etc. And opportunities are increasing, as “patient-centredness” catches on. A good place to start is with your own GP or local hospital, where there will probably be a patients involvement group you could join.

author avatar by John Walsh on 05-Jun-2018 10:27:16

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