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What volunteers say

A carer’s perspective on taking part in research

Twickenham resident Barbara cares for her husband Michael, who was diagnosed with Dementia with Lewy bodies (DLB) in 2008. For Michael and Barbara, taking part in research made the first few years after he was diagnosed with dementia easier to live with.

Why did you and your husband choose to take part in a clinical trial?

“Being part of the research programme made us feel that we were part of a research family, which was comforting and supportive.

“We both felt strongly that participating in dementia research would be a helpful and positive thing to do. That way he could benefit if there were positive outcomes from the projects he participated in, and other patients and carers would also benefit from the longer term results of all the research.”

What has your experience been like so far?

“The team at the clinical trials facility at West London Mental Health Trust exceeded all of our expectations. We were always warmly welcomed, treated with respect and consideration. All the members of the team consistently made sure that we were comfortable with and understood the procedures.

“My husband and I were invited to join the monthly clinical trials meeting, where we were able to comment on the effect of policies and trial protocols and how they might affect patients and carers, which is very important.”

Celebrating Mick’s life

Together with the charity My Life Films, Barbara and Mick created a touching video biography to help Mick remember his life, and allow clinicians understand the person he was before his illness. The 30 minute film, which included interviews with Mick and his family, has been condensed into a five-minute snapshot biography which is free to view, though the company gladly accept donations.

Barbara said: “The filmmaker was thrilled to be able to tell the story of someone who had such an interesting life. For me, as Mick’s wife and carer, being involved was an emotional experience – both joyful and sad – but I am so pleased to have this film.”


Mrs Billimoria’s story

Mrs Billimoria, the wife of a patient taking part in the Abbott M10-985 trial, gives her perspective on taking part in research and being part of the DemReg database.

What made you and your husband want to join the research registry?

“We chose to sign up to DemReg as you do everything you can to help the patient and their family and in doing so it may help others at the same time.”

Why did you and your husband choose to take part in a clinical trial?

“We decided, after discussing the trial amongst ourselves and with our family, that we wanted to try something different. We always like to try new things and from reading up on Alzheimer’s disease and the existing medication that is available we felt this was the right choice – to go for something new.”

What has your experience been like so far?

“Very good – everybody has been very helpful and friendly. We are taking each day as it comes but being part of the trial makes us feel my husband is being well looked after and gives us hope, as we are not just sitting and waiting for deterioration to happen.”

Do you have any advice for other families who are considering taking part in clinical trials?

“I would advise that being part of a trial is progress, and even if it does not work you can always try again and maybe the next one will. Although it may feel like there are a lot of visits by coming every two weeks to start off, you can always find the time as health is the most important thing. My husband is happy taking part in the trial and I feel it has developed his confidence.”

Contact us to get involved

To find out more about taking part in research, call us on 020 8483 1833 or email wlm-tr.researchteam@nhs.net, including your name and contact details.