Volunteer Heather Boult

Carers speak about helping to shape research and education

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 a right to be heard!”

Heather volunteers with PenPIG (Peninsula Public Involvement Group) for high-quality applied health research focused on the needs of patients. This is part of PenCLAHRC, who support the translation of research evidence into practice in the NHS in the South West Peninsula.

“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.”

In her own health experience she saw opportunities for research where she could be involved. 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 as a patient 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 Tuesday, to provide cover until Friday when his sister provides care for the other half of the week.

He said: “I really enjoy my PenPIG role. It helps with my mental wellbeing as my voice is heard, and I have found companionship with other carers. I gain a positive feeling of contributing and purposefulness to help others, and enjoy the intellectual stimulation of learning both from other carers and researchers.”

“My involvement with PenCLAHRC and the University of Exeter Medical School provides insight and gives a carers’ perspective in relevant research projects along with other patients and carers as a member of PenPIG. 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, physical, and emotional needs of carers are not sufficiently considered. Carers need more support and not to be forgotten, some of us have a choice to care and some of us don’t, and the changes in our lives can be challenging and affect our health. I am concerned that we are the cheap labour that is expected to prop up the health and care system, especially as the population ages with reduced public resources.”

Dr Kristin Liabo, who leads the PenCLAHRC Patient and Public Involvement team said: “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 research so that we do research that is relevant, and research that addresses the most pressing aspects of being a carer."

To learn more about PenPIG and public and patient involvement in PenCLAHRC research, please visit the PPI webpage.

Date: 16 June 2017