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Carers speak about helping to shape research and education

Posted on June 16th 2017

Carers have spoken about the value of sharing their experiences with students and researchers at the University of Exeter Medical School, to increase awareness and help support other carers in the community.

Volunteer Heather Boult, from Countess Wear in Exeter, said:

“As part of Carers week, it's about saying you are not alone in how you feel. Speak up and get involved in research, as it's the most rewarding, challenging and best way to change and improve the future for all patients. Don't be your illness or your NHS number or' just a patient', you are a person with a voice and have a right to be heard!”

Heather volunteers with PenPIG (Peninsula Public Involvement Group), PenCLAHRCs service user involvement group, which supports high-quality, applied health research focusing on the needs of patients.

“I became a Carer after my daughter’s liver transplant and son's heart surgery. I didn't realise I was a Carer and not just a Mum, but my life changed and what was important in my life took different priorities. To have your say, share experiences and ideas and improve the way children are treated and spoken to in hospital was what motivated me to join the Medical School and PenPIG.

 

I saw volunteering as being an essential and beneficial part of the students training in becoming medical staff. For them to be able to talk to patients, listen effectively, value patient's input and lived experience, greatly enhances their learning in a way a textbook can't teach.”

From her own health experience, Heather saw opportunities where she could be involved in research. One example of this was to improve research into diabetes, where she took part in a drug and food trial, and had a biopsy to see if there was a link between fat and diabetes.

“For me, being involved in research is sharing your ideas and hearing someone say 'I understand', 'that's what happened to me', 'I so know what you're saying!', 'tell me more about your experience'.

 

In addition to meeting wonderful, inspiring people, the most rewarding part of being involved in the Medical School’s research was when a VIP said 'I’m so glad you said all the things I dare not say because I might lose my job; It's being going on for years.’ It takes a patient to tell it like it really is'.”

Alex Alyward, from Exeter, shared his experience of caring for his 98 year old mother. He commutes from Southampton to Exeter, every Friday, to provide cover until Tuesday, when his sister provides care for the other half of the week. He said:

“I really enjoy my PenPIG role. My mental wellbeing is respected, as my voice is heard. I have found companionship with other carers and gained a positive feeling of contributing and a purposefulness in help others, as well as intellectual stimulation from learning from other carers and researchers.

 

My involvement with PenCLAHRC and the University of Exeter Medical School provides insight and gives a carers’ perspective into relevant research projects. Examples of this are; giving feedback for researchers lay summaries of projects; being a member of a research project team; or as a participant in a study.

 

It is important to be involved to help improve carers and their patients’ lives through research, by answering important questions on how we could do things better. The stress and physical and emotional needs of carers are not sufficiently considered. Carers need more support and not to be forgotten as they make sacrifices and provide cheap labour to prop up the health and care system, especially as the population ages and reduced public resources bites.”

Dr Kristin Liabo, PenCLAHRC Senior Research Fellow and member of the Patient and Public Involvement (PPI) team explains the value working with carers can bring to research:

“Only carers know what challenges and opportunities inhabit their roles, and we cannot do meaningful research about carers without involving people with caring experience in setting the agenda and working up research questions. As researchers we are grateful as well as humbled by carers who take time to meet with us in the midst of their busy lives, to help influence our work so that we do research that is relevant, and that addresses the most pressing aspects of being a carer.”

To find out more about PenPIG and how PenCLAHRC embeds patient voices into its research, visit our Patient and Public involvement pages.

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