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Woman couldn't even visit supermarket, but medical trial has changed her life

PUBLISHED: 12:49 03 January 2020 | UPDATED: 13:38 03 January 2020

Jane Macaulay, 55, who is an NHS coder from Thurston near Bury St Edmunds, has suffered from Ménière's disease for four years Picture: SUPPLIED

Jane Macaulay, 55, who is an NHS coder from Thurston near Bury St Edmunds, has suffered from Ménière's disease for four years Picture: SUPPLIED

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A Suffolk woman who suffers with crippling attacks of vertigo and sensitivity to noise is enjoying better health following a medical trial.

Jane Macaulay, 55, from Thurston, near Bury St Edmunds, has Ménière's disease, a debilitating condition that affects hearing and balance.

She says has seen a huge improvement in symptoms since she took part in a life-changing clinical trial at Cambridge University Hospitals NHS Foundation Trust (CUH) last summer and is now urging others to take part in health research.

Ms Macaulay, who has suffered with the condition for four years, said: "The vertigo just suddenly comes on and it's as if the whole room is spinning and you can't stand up. You have to find somewhere to lie down, although everything is still spinning."

Often happening without warning, the attacks meant she was forced to give up driving and work from home.

The extreme sensitivity to noise that accompanies the condition stopped her going out with friends and even visiting the supermarket.

She said: "It's like I'm wearing a tin helmet and somebody is hitting something hard against it. I would walk around thinking, shush, why are you banging those shelves?!"

Ménière's disease is a rare disorder affecting the inner ear which can often cause crippling vertigo (loss of balance), tinnitus, and hearing loss. Attacks can last for several hours and current treatments are only partially effective.

Before taking part in the study Ms Macauley, an NHS coder, was experiencing two to three of these attacks a week.

She had been taking standard medication to treat the disorder but was still experiencing regular attacks when she was told about the OTO-104 trial at Cambridge University Hospitals NHS Foundation Trust (CUH) and decided to sign up.

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The study involves injecting a new gel treatment into the inner ear of the patient, with the aim of reducing the regularity of attacks.

For Ms Macauley the trial appears to have been a success with only two attacks suffered since having the injection about six months ago.

As a result, she wants to encourage others to take part in studies, stressing that it can benefit both the patients and the wider public.

"How can new treatments and medications be developed without research? Whether it benefits you or not, it is a great opportunity to develop such an important field," she said.

Ms Macauley also praised the research team at CUH, led by consultant neurologist and skull base surgeon Mr Neil Donnelly, for their understanding and flexibility in making appointments.

She said as well as keeping her well informed, each stage was clearly explained and the nurses and consultants were "so approachable".

The OTO-104 trial is funded by biopharmaceutical company Otonomy and is supported by the National Institute for Health Research (NIHR), which provides additional funding for staff and facilities.

Helen Macdonald, chief operating officer for the NIHR's Clinical Research Network in the eastern region, said: "It's wonderful to see someone benefit from research as it demonstrates the impact NIHR studies can have on people's lives.

"Volunteers are vital to the success of NHS clinical studies happening in the region and beyond, so we cannot thank them enough for their participation."

-For more information on taking part in this study email Sophie Newton, senior otology research nurse at CUH, here.

-People can also find out about more research taking place across the NHS on the NIHR's Be Part of Research website here.

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