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Medical research >> Clinical Trials >> Mental health trials >> Anton - Interview 28 >> Researchers could do more to make it easy for people to volunteer. It’s off-putting when you ring to ask about a trial and you get an answerphone.

Anton has a long history of depression and has volunteered for several different trials in mental health, including trials of talking therapies as well as drug trials.

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil joined a trial of medication for high blood pressure mainly to see staff who specialised in his condition and had more time than his GP. Helping

Phil took part in a trial of medication for high blood pressure and cholesterol. He had some side effects early on, so the medication was changed. He has been very happy with the care provided as part of the trial.

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny’s husband learnt he had diabetes when he was being monitored during a previous trial. They both volunteered for another trial because it helps t

Danny joined a trial of high blood pressure medication, but stopped because of side effects. She has concerns about the way some staff communicated with her and a lack of rapport and respect for her as a volunteer interested in her own health.

Medical research >> Clinical Trials >> Trials involving surgery >> Alex - Interview 45 >> Alex wonders if he got faster access to diagnostic tests because he’d agreed to be in the trial, but he thinks the quality of care overall was no diff

Alex fractured his heel in 2007. He agreed to take part in a trial comparing surgery with letting the bones heal naturally. He was randomised to the group having surgery, and his heel is slowly recovering.

Medical research >> Clinical Trials >> Mental health trials >> Fenella - Interview 20 >> Looking back, Fenella feels one benefit of being in the trial was having access to staff who were expert and motivated to find the very best treatment

Fenella took part in a randomised trial of partial hospitalisation compared to standard community treatment for borderline personality disorder. Results showed the group she was in (partial hospitalisation) had better outcomes.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> She thought being in the trial would mean she would be really well looked after by experts. But after agreeing to take part she never saw the professo

Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> When she told the consultant her decision, he seemed angry, which made her feel vulnerable and upset. She worried that if she had dropped out after ra

Elizabeth was invited to join a trial of chemotherapy for ovarian cancer, but decided not to take part as she knew which treatment she would prefer and did not want to be randomised to another group. She felt the consultant was cross about her decision.

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Tom - Interview 14 >> Tom encourages other patients to think about taking part in a trial if it is offered. You can always withdraw if there are problems, and you will have

Tom took part in a phase 2 trial of a new chemotherapy drug for lung cancer in 1993. Without the trial, the only other option at the time would have been palliative radiotherapy.

Medical research >> Clinical Trials >> Not taking part in a trial >> Elizabeth - Interview 27 >> It’s important to remember you can pull out at any stage and it won’t affect your care. She worried that it might affect her own care but in fact it d

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> Julian describes the high quality of care and monitoring in his Phase 1 trial.

Julian has prostate cancer. He is in a Phase 1 trial of a drug (a PARP inhibitor) which may stop cancer cells regrowing in people like him who have the BRCA2 genetic mutation. This mutation increases the risk of prostate and other cancers.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> Rose wonders if she saw a doctor less often because she was in a trial. The nurse dealt with side effects. She felt some people assumed she didn’t nee

Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.

Medical research >> Clinical Trials >> Long term conditions >> Danny - Interview 26 >> Danny noticed there seemed to be a pattern that the side effect of coughing happened when she hadn’t eaten for a while. The researcher wasn’t interest

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil suggests it might be a good idea to have more formal liaison between GPs and trial staff so the GPs can learn from it and improve care.

Medical research >> Clinical Trials >> Long term conditions >> Sarah - Interview 38 >> The trial staff said they’d make sure Sarah’s GP was told that she had osteoporosis. Later she discovered he had no record of it, so she feels she mis

Sarah volunteered for a placebo-controlled trial of a drug intended to help women at risk of osteoporosis. It involved daily injections and eventually she dropped out of the trial. (You can see Sarah talking more about her experiences on the healthtalkonline site osteoporosis, Interview 27).

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> He has sometimes picked up mistakes in the letters sent to his GP from the trial. This is a good reason for patients to see copies of the letters.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> Caroline thinks women’s feelings about birth and postnatal care need more investigation, using research methods which gather information on emotions a

Caroline’s first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

Medical research >> Clinical Trials >> Not taking part in a trial >> Gill - Interview 10 >> Gill thinks people should not go into a trial expecting it will solve their immediate problems. Trials are about the future, and the bigger picture.

Gill discovered she had breast cancer in 2007. She would have liked to take part in a trial to help other women with breast cancer in future, but none was available.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Leslie - Interview 43 >> During the trial, Leslie became more and more ill, but the trial staff didn’t seem to connect his symptoms with an effect of the trial drug estimated

Leslie took part in a placebo-controlled drug trial of rofecoxib (Vioxx) for prostate cancer prevention. He became extremely ill, but doctors monitoring his progress did not pick up his symptoms. He took the drug company to court, and won compensation.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Joanna - Interview 04 >> Joanna found the internal scans quite uncomfortable, and the way she was called back for further tests made her anxious. But she didn’t feel the resea

Joanna took part in a six-year trial of screening for ovarian cancer. She feels some aspects of the trial were not well managed. Her husband, who had leukaemia and died recently, also took part in trials.

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Pam - Interview 21 >> Pam finds her regular scans reassuring. Talking to fellow patients helps keep her spirits up, and the nurses are very encouraging. Hospital feels like

Pam has breast cancer which spread to her bones and liver. She joined an open-label expanded access study of lapatinib and capecitabine, before lapatinib was licensed for general use. She left the study after lapatinib stopped working. (Wife of Tony, Interview 36)

Medical research >> Clinical Trials >> Long term conditions >> Harry - Interview 07 >> Harry had regular monitoring tests. Most staff were excellent, but one nurse started a debate with him and made him cross. That didn’t seem a good way

Harry took part in a trial of medication for high blood pressure. He had some side effects early on, but otherwise has been very happy with his care and how well he feels.

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil felt a bid sad at the end of the trial – he missed seeing the team, and the feeling that he was in expert hands.

Medical research >> Clinical Trials >> Screening, prevention other medical interventions >> Caroline - Interview 08 >> After the birth, Caroline took part in an audit of the information she’d been given. She was made to feel she’d failed a test. It raised wider questio

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> It’s difficult to advise others, but Julian recommends taking part in a trial, both because it helps others and because you get close monitoring and a

Medical research >> Clinical Trials >> Long term conditions >> Phil - Interview 11 >> Phil encourages others to think about taking part in a trial unless they have real fears. You’ll be safe and well looked after, and can always pull ou

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Jayne - Interview 03 >> Unless you have strong feelings about which trial group you would want to be in, Jayne advises people to take part. She is confident in the system of

Jayne had breast cancer aged 33. She wanted to join a clinical trial but her consultant was not interested, so she transferred to another hospital and took part in a trial comparing tamoxifen with tamoxifen plus goserelin (Zoladex).

Medical research >> Clinical Trials >> Long term conditions >> Angela - Interview 23 >> Angela felt well supported and informed by her clinical team. Being asked to take part in a trial helped her to gain something positive out of her ill

Angela was diagnosed with Parkinson’s disease after taking part in a trial on nerve conduction. She has since been in a randomised trial of different drugs for Parkinson’s and would happily take part in another trial, despite having had side effects.(Angela is also on our Parkinson’s disease site, Interview 10).

Medical research >> Clinical Trials >> Cancer - Non-randomised studies >> Julian - Interview 33 >> He can see that often a placebo might be safer than the trial drug. But in his case, he feels the evidence is already so strong he would not be happy

Medical research >> Clinical Trials >> Long term conditions >> David - Interview 34 >> David had expected to feel like a guinea pig, but actually felt it had been interesting and worthwhile. He was pleased to have a personal debrief with

David volunteered for a placebo-controlled trial of a new treatment derived from mouse DNA to improve asthma symptoms. He later discovered he was in the group taking a lower dose of the treatment, but he would not have minded being in the placebo group.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Rose - Interview 17 >> Patients may look calm and unemotional on the surface, but they may not be feeling that way underneath.

Medical research >> Clinical Trials >> Cancer drugs and radiotherapy - randomised trials >> Wendy - Interview 02 >> Wendy would like to have been told in advance that she wouldn’t see the professor every time. There was little continuity of care and staff always see

Medical research >> Clinical Trials >> Long term conditions >> Kate - Interview 13 >> Kate liked the fact that the research nurse tailored the information he gave to each individual participant during the trial.

Kate and her husband took part in a trial comparing injections of grass pollen antigen against a placebo as a way to reduce hay fever. Kate was in the experimental group and her husband in the placebo group.

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