Patient stories


Inspirational stories from patients, carers and members of the public

The NIHR Clinical Research Network actively promotes the positive impact clinical research can have from the perspective of patients, carers and members of the public.

We’re gathering some fantastic stories from people across England, that range from feeling better in day to day life, and knowing more about their condition, to an improvement in health.

Click on the links below to watch or read their full stories.

If you want to tell us about your story, please sign up via the online form.

You can also join the conversation on Twitter. Share your experiences with @NIHRCRN using #crnpatientstories.

To help promote the campaign please print the patient stories poster (temporarily unavailable). You can also order up to 50 promotional flyers for free at the NIHR Clinical research Network online shop here (temporarily unavailable).


BozenaBozena

Bozena Bajer feels that taking part in a clinical research study has given her a much better understanding of her operation and her condition…

Read more about Bozena’s story

Find out more about Obesity and Brain Imaging research

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Ann and Jan

Ann Grimes and Jan Cashmore took part in the ACUTE (Diabetes) study, the results of which have changed the way they live aspects of their day-to-day lives…

Read about Ann and Jans story

Watch Ann and Jan’s video

You can click on Ann and Jan’s picture to watch their interview about their experience in the ACUTE study or click here

Find out more about Obesity and Diabetes Research

David obesity


David

David Shiers is a retired GP who developed a keen interest in obesity and mental health when his daughter was diagnosed with schizophrenia aged 16. His experiences as a carer have played an important role in shaping the STEPWISE study…

Read more about David’s story

Watch David’s video

You can click on David’s picture to watch an interiew of him telling his research story, or click here

Find out more about Obesity and Mental Health Research

Diane obesity


Diane

Diane Chadband is a mother of three who has recently undergone a gastric band operation as part of this study. When her GP recommended she go on a weight management programme, surgery was the last thing on her mind…

Click on Diane’s picture to watch her interview

Watch Diane’s video

You can click on Diane’s picture to watch an interview of her telling her research story, or click here

Find out more about Obesity Research 

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Rory

Once a research participant in a mental health study, Rory now leads the PRODIGY Advisory Team, a group of young people aged between 17-24 years who have helped to shape the PRODIGY study…

Read more about Rory’s story

Watch Rory’s video

You can click on Rory’s picture to view an interview of Rory telling his story, or click here

Find out more about Children and Young People’s Mental Health Research

Lucy


Lucy

Lucy’s story was picked up by the Oxford Times. She was diagnosed with Parkinson’s aged 38 and is taking part in a five-year study at Oxford’s John Radcliffe Hospital, which is looking at a test to speed up diagnosis. She is now a volunteer with charity Parkinson’s UK and is involved in village life, from being co chairwoman of the village hall management committee, to helping run the monthly market.  

Read more about Lucy’s story.

Watch Lucy’s video

You can also view a video of Lucy’s story here.

Find out more about Parkinsons research

Dave


David 

David from Middleton-on-sea, Bognor Regis, was featured in the West Sussex Gazette. He was diagnosed with oesophageal cancer and had surgery in 2006 at the Royal County Hospital in Guildford – but everything changed when he was introduced to the Kent, Surrey and Sussex Cancer Partnership Research Group (KSS CPRG). Now, David is Chair of this Group, his life has changed dramatically, and he is a real ambassador for research.

Read more about David’s story.

Find out more about Cancer research

SR


Stephen

Stephen Roberts, 62 was picked up by Blackheath Mercury. He was diagnosed with Parkinsons four years ago. A member of a ceilidh band, Stephen first saw signs of the condition when he began to have problems playing his flute. In 2012 he was referred to the Speech and Language department at Lewisham Hospital where he took part in his first clinical research study – he’s never looked back.

Read more about Stephen’s story.

Watch Stephen’s video

You can also view a video of Stephen’s story here.

Find out more about Parkinsons research

Simon


Simon

Twenty-year-old Simon Stones suffers with juvenile idiopathic arthritis (JIA) and was featured in The Bolton News. He teamed up with researchers at the NIHR Manchester Musculoskeletal Biomedical Research Unit to work on a new mobile phone app for children diagnosed with JIA and now sits on a panel for the NIHR Clinical Research Network.


Read more about Simon’s story.

Find out more about Musculoskeletal research

WANDA


Wanda

Wanda, 66, was diagnosed with Type 1 diabetes 40 years ago during her first pregnancy and was first introduced to research about 10 years ago at Derriford Hospital (Plymouth Hospitals NHS Trust). Since then Wanda has taken part in several research studies looking into the complications of diabetes including PLEDGE and DARE and her story was picked up by the Plymouth Herald.

Read more about Wanda’s story.

Find out more about Diabetes research

DEREK


Derek

Derek Bell, aged 80, from Southampton suffered a mini-stroke three years ago. Doctors told Derek that the mini-stroke he suffered was a “warning sign”. He became involved in research and is now part of a patient, participation and involvement (PPI) group. His involvement has given him hope and a welcome opportunity to give something back to the NHS , and his inspriring story has been featured in the Southern Daily Echo.

Read more about Derek’s story.

Find out more about Stroke research

LYNDSAY AND ROBERT MUDGE


Robert and Lindsay

Robert Mudge, 71, was diagnosed with early on-set Alzheimer’s disease in January 2013. This was a life-changing moment for Robert and his wife Lindsay. So they decided to face this head on and are are even planning to donate their brains after they die. They are hoping that it will help to find answers to the causes of dementia, new treatments or even a cure for the degenerative disease. Their innovative story was picked up by Leicester Mercury.

Read more about Robert and Lyndsay’s story.

Find out more about Dementias and neurodegeneration (DeNDRoN) research

WARREN


Warren and Irene Branton

Warren Branton, 68, cares full time for his wife Irene, now 71, and they have taken part in various research projects to benefit the lives of patients and their carers. Warren has also recently been appointed a research champion for Join dementia research a new service which allows people to register their interest in participating in dementia research and be matched to suitable studies. Their story was featured in the Hull Daily Mail on 23 December.

Read more about Warren and Irene’s story.

Find out more about Dementias and neurodegeneration (DeNDRoN) research

BRENDA


Brenda Riley

Brenda is a retired 67 year old and lives in Sheffield. She was diagnosed with type 1 Diabetes in 2005. She joined the Diabetes UK Sheffield Group, which aims to provide support, help, companionship, education and information for people living with diabetes, and is part of Diabetes Voices, where volunteers take part in local campaigns to help to change lives of patients. Her story was featured in the Sheffield Star on 17 January. 

Read more about Brenda’s story.

Find out more about Diabetes research

LYNNE


Lynne Dawson

Diabetes patient and Sheffield resident Lynne Dawson says it is essential people put themselves forwards for clinical research to help towards providing better treatments for conditions such as her own.

The 47-year-old, from Ecclesfield, is one of Sheffield’s research ambassadors who not only sits on a panel to advise on the recruitment of trial patients and identifies research priorities, but also takes part in studies herself. Her story was featured in the Sheffield Star on 17 January

Read more about Lynne’s story.

Find out more about Diabetes research

Katie


Katie

Katie is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. It has given her an outlet to turn any negative experiences into positives by guiding researchers looking into mental health.

Read more about Katie’s story.

Find out more about Mental health research

Susan


Susan

Susan is 61 and was diagnosed with type 2 Diabetes 10 years ago. When she turned 60 last year she started thinking more about her health – not just for herself but for her daughter who was diagnosed with Moyamoya disease at 18 years old and now needs full time care. She tells us about her daughter’s condition and how taking part in research has led to a brighter future for the whole family.

Find out more about Diabetes research

 

GEMMA


Gemma

Gemma is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. She has been in recovery from anorexia for over two years and the group has helped her to further understand mental health problems and to do something proactive in response to her illness.

Read more about Gemma’s story.

Find out more about Mental health research

SUSANNAH


Susannah

Susannah has both personal and family experience of mental health services and is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. She got involved in research as a way to further understand mental health problems and to do something proactive in response to her own diagnosis and lack of available treatment and support. her story has been featured in both the Loughborough Echo and Nottingham Post. She was also recently broadcast on BBC radio Leicester.

Read more about Susannah’s story.

Find out more about Mental health research

SARAH


Sarah

Sarah is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. In 2012 she was diagnosed with depression. She got involved in research as a way to further understand mental health problems and to do something proactive in response to her condition. She also got involved to proactively contribute to promoting better services and treatments for the mental health sector.

Read more about Sarah’s story.

Find out more about Mental health research

 

EMMA


Emma

Emma was diagnosed with bipolar disorder type 2 following several years of depression and is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. In 2014 she got involved in research as a way to further understand mental health problems, break down misconception surrounding her illness, and to do something proactive in response to the need for more research. Emma was featured in the West Sussex County Times on 19 February.

Read more about Emma’s story.

Find out more about Mental health research

WILL


Will

Will  is training to be a mental health nurse and is an active member of the Clinical Research Network’s Mental health Young Person’s Advisory Group. He has never been diagnosed with a condition, but has personal experience of helping some family members with their mental health issues.  He got involved in research as a way to further understand mental health problems, to see how others have been affected by poor mental health services and to help find ways to improve them. He was featured in the Warrington Guardian on 20 February.

Read more about Will’s story.

Find out more about Mental health research

                                  

BETHAN


Bethan and Alicia 

Tyneside mum Bethan Davies and her baby daughter Alicia have been taking part in the SIFT trial that aims to help premature children, often unable to tolerate normal volumes of milk from their mothers, feeding at a rate that will provide them with the nutrition needed to get healthier, faster.  Bethan got involved in research not only for Alicia but to help babies of the future. Her story was featured in the Chronicle on 10 March.

Read more about Bethan’s story.

Find out more about Children research

SHEILA


Sheila 

Sheila has bravely taken part in clinical research to help manage the voices in her head. Her disturbing illness, caused by Obsessive Compulsive Disorder (OCD), had got her to the point where she was struggling to get out of bed in the morning. She decided to get involved in research because she was interested in “giving something back”. She found her involvement to be life-changing. Her story was featured in the Eastbourne Herald on 16 March.

Read more about Sheila’s story.

Find out more about Mental health research