The 2024-25 research participant survey, completed by 89 participants, showed the following:
· 84% felt fully informed about the study prior to taking part
· 82% felt valued for taking part in the research study
· 92% felt they were always treated with courtesy and respect
· 73% would consider taking part in research again
Patient 1
(We have protected the names of the patients involved as they wish to remain anonymous)
The following is feedback from a participant taking part in a multi-centre observation trial in psoriatic arthritis (a long-term condition that causes joint pain, swelling and stiffness), October 2024)
“I have pain in my feet, ankles, lower back, hands and wrists which has increased over the past 10 years or so, along with occasional psoriasis.
“I saw my Doctor just over a year ago at Cannock Chase Hospital when I was diagnosed with psoriatic arthritis.
“I was informed that I could take part in a clinical trial. It was only one morning every three months with blood tests in between.
“I signed up to the trial on my second visit to see the Doctor. I believe the results of tests and my overall experience of being on methotrexate for my arthritis may go towards furthering the research and treatment of the condition.
“My visits to clinical trials and the Doctor are four times a year.
“During my visit I complete a series of questions about how I have coped with my arthritis over the three months, how I have been feeling and the levels of pain I am experiencing.
“I have my blood pressure and weight taken and my Doctor will check me over to see what the levels of pain or discomfort are in my joints.
“I have only positive things to say about being a patient on a trial. The appointments only take a small amount of time and the experience is informative.
“The staff are extremely pleasant. I also find peace of mind that I am being well cared for.
“The only advice I would give someone considering taking part in a research study is DO IT. There’s nothing to it and it may well benefit you and possibly others too.”
The patient added: “I have had the best care at Cannock Chase Hospital on this trial.
“Everyone I have come into contact with – the Doctor, the trials team, even the Pharmacy and the staff who take the blood tests, are all so welcoming and friendly. Nothing is too much trouble.
“During the trial, my overall feeling was I was receiving excellent care and advice. If I ever needed to contact the team it was really straightforward and they always helped.
“As a lady of 59, I have an 86-year-old mother who has been in pain with arthritis for the past 40 years and is now bed-bound and crippled.
“I have a daughter of 28 who is starting to show early signs, of having joint pain – as I did – so I would urge anyone to give just a snippet of their time to take part in a trial to try to aid the advancement in treating conditions like arthritis.”
Patient 2
“’It’s Gleason scale 9 – so not ideal, and not operable’ was the blunt assessment of my prostate biopsy.
“’But don’t worry, it’s not the end of the world – there is much that can be done to improve things.’
“My wife and I sat quietly, trying to take in what we had just been told.
“Our introduction to cancer was brief and overwhelming. However, five minutes later, with a cup of tea in hand, a Nurse explained treatment would begin immediately and with every chance of a successful outcome. How true this turned out to be.
“We were given a large amount of written information showing where support could be found and that I would be referred to the Oncology clinic.
“I cannot emphasise how important this first step was. In 30 minutes I went from feeling very low to feeling that somehow it might turn out alright.
“Our first appointment with the trial team reinforced what I had experienced in Urology, that the future was not all gloomy.
“The meeting with Dr Sayers and his team was comprehensive and it ensured we both understood the situation and what could be done about it.
“I was offered a place on a trial, which I accepted. Again we left the appointment feeling good.
“At subsequent appointments we were kept fully up to date with treatment progress, had all our questions answered and became gradually drawn into the trial team ‘family’.
“The comprehensive care I have experienced took away all the negative feelings.
“Increasingly with each visit we became part of the team rather than an object of study.
“My wife was encouraged to play her part in assessing my wellbeing and at no time did we feel were not in good hands but confident of a successful outcome.
“The team was always available for any queries I might have had and we always experienced a friendly professionalism, which has been confidence building in itself.
“What would I say about embarking on a trial? Have it fully explained, ask every question you can think of, read the small print and don’t expect miracles.
“I am now in the seventh year of the trial having been see every 12 weeks, which in itself is a great comfort.
“During the trial and after I have never considered other than a successful outcome and supreme confidence in the team treating me. I have never felt alone.
“I feel privileged to be part of research and hoper my experience will be of help to future patients. The involvement of family is key. Thank you all.”
