New East of England public involvement group set up for people with hearing loss

People with hearing conditions from across East Anglia are being invited to join a new group to help run research and change clinical service development at Cambridge University Hospitals (CUH).

The Hearing Services research team at CUH has launched the Hearing Loss Patient and Public Involvement (PPI) Group to help patients give their views on how research is carried out and how hearing services could be improved for patients. The Group is open to people from across the region who have hearing loss and related conditions.

People with tinnitus and balance problems, and those who wear hearing devices such as cochlear implants are also invited to join the group, alongside carers for people with hearing conditions.

Members of the Group will take part in a number of ways, including giving feedback on how research is designed and carried out, and discussing ways to improve the experience of people taking part in studies. They will also help staff find ways to make positive changes to the department itself, such as improvements to services and facilities.

The Hearing Loss PPI Group will meet twice a year online, via Zoom, with monthly email updates sent by the team. No experience is necessary to join the group, but members need to be willing to share their views.

Sophie McKenny, Senior Research Nurse at the Centre, who has set up the group, said: 

“We carry out research here to improve treatments and care for patients with hearing loss, and we feel it’s really important for the people we’re trying to help to have a voice in deciding how our research is carried out and services can be improved. We also want to help people with hearing conditions to meet others like them so they can share experiences and give support to each other, so we hope as many people will join as possible.”

The Hearing Services Department at CUH carries out many studies funded and supported by the National Institute for Health Research (NIHR). Prof Carl Philpott, Ear, Nose and Throat (ENT) Lead for the NIHR in the Eastern region, said: 

“The views of this group will provide vital perspectives to help us improve how research is carried out across the region and beyond. We are incredibly grateful to everyone who volunteers to be involved in research at all stages, from helping to design a study through to helping us test new treatments and ways to care for patients.”

Ruth Meyer, 68, a qualified Tour Guide from Cambridge, was the first person to sign up to the group. Ruth has had hearing loss in one ear since 2016 due to a non-cancerous brain tumour.  She said:

“I’ve received an immense amount from the NHS over the years, and the NHS care I received when I was being treated for the tumour was outstanding. I feel that I should be prepared to make a contribution in recognition of this, so it’s not really that I needed to think hard about whether to join, it was more a case of thinking ‘why wouldn’t I?!’”

If you are interested in joining the Group or would like more information, please contact Sophie McKenny, PPI Group Coordinator, at [email protected] or 01223 586625.

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