The voices of patients and unpaid carers are being called upon to help shape the future of the UK’s health and social care landscape in partnership with Edge Hill University.
People who have experience as a patient in hospital or have cared for someone at home are being encouraged to join the University’s Service User and Carer Group to help train the next generation of health and social care professionals.
The Service User and Carer Group is a UK-wide paid opportunity that provides members with flexibility to choose whether they would like to attend meetings online or in-person at the University’s campus in Ormskirk, Lancashire.
One member of the group, Jenny Allen, is hoping to raise awareness of her postpartum condition in a bid to inspire other mums to take control of their healthcare journey.
Jenny, a teacher from Manchester, was advised by doctors to put her sleepless nights down to being a new mum after giving birth to her daughter in 2017.
At first, she placed her trust in the hands of the professionals, but what would soon follow would be the ultimate battle in self-belief.
Through her own research, Jenny learned out about postpartum thyroiditis, which is when a person’s thyroid becomes overactive and underactive in the space of a few months and typically returns to normal by 12 months postpartum.
In March 2021 her hard work paid off and, with some help from The Thyroid Trust, Jenny finally got a diagnosis and is now on the path to recovery.
Having shared her own story in a bid to improve training for the next generation of health and social care professionals, Jenny is now encouraging others to step forward and share their experiences.
Jenny said: “Their commitment to service users is incredible and the impact of the group is that professionals from all areas of healthcare are trained to deliver patient-centred care. From personal experience, I know how important this is and the reason I finally got a diagnosis was because I was listened to as a patient.”
The Service User and Carer Group partners with academics, health and social care professionals, families and service users to develop, strengthen, and advance the highest quality NHS patient healthcare and standards.
Service users and carers will be invited to attend programme and faculty board meetings, programme validations, student interviews and assessments and to take part in research.
Jodie Turner, who has severe physical disabilities, wants her experiences as a patient to inspire other people to share their healthcare stories and help shape the future of the NHS. Jodie, 30, lives with her parents George and Ann near Preston.
Jodie, who uses a machine to talk, said: “When I was six to 10 weeks old, I contracted meningitis and septicaemia and the illness caused brain damage, which left me with severe physical disabilities and no speech. So, I guess I became well-known to the NHS with input from many health professionals.”
It was when one of Jodie’s carers was studying to become a learning disability nurse at Edge Hill University, that the family first learned about the University’s Service Users and Carers Group.
Jodie said: “My carer told me about the talks she had received from disabled people about their lived experiences. I thought that I could do this with my mum and dad, and so we found ourselves part of the group.”
Like Jodie and her family, the voices of patients and unpaid carers are being called upon by Edge Hill University to help shape the future of the UK’s health and social care landscape.
Toni Bewley is a Senior Learning & Teaching Fellow Lead at Edge Hill and leads the Service User and Carer Group. She said: “We want to hear the personal accounts of patients and their carers who have recent experience of health and social care in the UK. Their valuable perspectives will be used to inform our teaching and research development which, ultimately, will help us to improve training and enhance the quality of patient-centred services.
“We recognise that service users and carers are the true ‘expert’ in their own care delivery and providing their first-hand experiences will benefit the future of health and social care delivery we can provide to NHS patients and their families.”
Are you a service user or carer interested in helping to train the health and social care professionals of the future? If so, the Service User and Carer Group would like to hear from you. Please contact Toni Bewley at [email protected] or Susan Waterson at [email protected] for more information.
Edge Hill’s Faculty of Health, Social Care and Medicine is one of the largest providers of health and social care education in the North West of England. The University offers a wide range of undergraduate courses, from nursing and operating department practice to nutrition, child health and counselling.