Society Survey Results
Spike Bromley and Stefano Cosentino, Trustees
A big thank-you to all who completed our recent survey. The survey was distributed in 2015 and results were first published in Spin issue 92 (2016) and 94 (2017). The trustees found the results very useful and informative and we hope to use the data to influence health professionals and policy setters. We wanted to get information on the symptoms and treatment that our members/users experience. In addition, we hoped to gain some understanding of your appreciation of the services we offer. In total 283 surveys were completed and readable.
Respondents were 61% female and 36% male (a few chose not to answer that question).
A considerable majority (77%) of respondents were age 50 or older, with 43% being between 65 and 79. This is in line with the average age of 59.4 found for Meniere's subjects included in the Biobank study .
The breakdown of the country of residence of the respondents is in line with the relative populations of England, Scotland, and Wales, and also reflects the place of residence of the membership of the Society (not shown). Other includes Ireland, Channel Islands, USA, France and unspecified.
How did you rate the Ménière’s Society?
It’s probably not surprising that, overall, respondents were members of the Society. Former members made up 3.5% of respondents. The remaining 6% were non-members, of which 2% were UK, 2% were non-UK and 2% didn’t provide this information.
A major reason for conducting the survey was to gain an appreciation of what you, our users and members, thought of the services we offer. It is very pleasing to report that nearly all users of any of the services rated them as either “Excellent” or “Good”. Not all respondents rated all services, as some are more familiar with some than others. We were pleased with the positive views of our Christmas cards and raffle but disappointed that few chose to rate these services as these are important fundraising activities for the Society.
It is probably not surprising that almost all our respondents reported ‘vertigo’, ‘tinnitus’, ‘hearing loss’, and ‘balance problems’. More than half reported ‘aural fullness’, but about a quarter had migraine, and a similar number reported ‘drop attacks’. The Society thus is fulfilling its objectives to support and assist sufferers from these conditions, and we appear successful in this so please ‘spread the word’.
Not surprisingly as we are the Ménière’s Society, almost all (85%) of respondents have been diagnosed with Ménière’s. Some respondents had also been diagnosed with other conditions but this was by no means universal. However, as we also endeavour to provide information and support to people with other vestibular conditions, we are looking at further ways of widening our membership.
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Some people received their diagnosis quickly, with one in 20 (5%) being diagnosed within a month of their symptoms appearing. Almost a quarter (23%) were diagnosed within six months of their symptoms, but some had to wait patiently for a diagnosis; almost half (48%) had to wait over a year to get a diagnosis. One in five (19%) were diagnosed by their GP whilst two thirds received their news from a NHS or Private ENT specialist. Some received diagnoses from both, or some other health care professional.
Survey respondents told us that they had been ‘putting up’ with their condition for a long time; almost nine in 10 have had the condition for over five years and for over two thirds it’s been 10 years or more. Almost half of respondents (44%) were referred to a specialist within three months of presenting to their GP with the symptoms, but sadly almost a third (36%) had to wait over six months and one in ten (11%) were waiting over two years for this to happen. We didn’t question whether this was because the GP tried various remedies or was due to waiting time to see specialists. But it would be good to be referred quickly when presenting with Ménière’s-type symptoms. Two in five respondents have had remission of the symptoms for over a year with one in seven being in remission for over five years, but an unfortunate quarter (28%) have had little or no respite.
How happy are you with your healthcare provider?
About two thirds of respondents (62%) reported being satisfied (excellent or good) with their GP, and their ENT specialist, whether NHS or private. Generally, very few rated their health care professionals as ‘poor’, ranging from 18% rating for other NHS specialists’ to 3% for audiologists. Worryingly, one in seven (15%) rated their GP service as ‘poor’.
Over two thirds of our respondents (69%) reported they have cut back on, or eliminated, caffeine from their diet whilst a slightly smaller number (63%) have reduced or eliminated alcohol. Even more respondents (81%) are controlling their salt intake. Interestingly, more than half of the respondents (58%) now include some form of exercise or physical activity in their lifestyle.
Almost all our respondents have taken betahistine and nearly two thirds still do. A recent review (2) suggested the tests used to prove its efficacy were not sufficiently robust to prove it works. However the number taking the drug does suggest many find comfort in taking it.
The next most ‘popular’ drug is prochlorperazine (Buccastem and Stemetil being brand names) for the control of dizziness and vertigo associated with Ménière’s attacks. Hearing aids, probably not surprisingly, are quite common with just under half using one. About a quarter of our respondents have had some form of surgical intervention and one in five have had either steroid or gentamicin injection.
Almost a quarter (24%) of our respondents are or were doing vestibular rehabilitation exercises led by a physiotherapist and 29% are or were guiding themselves in such exercises. Of course it may be that some who were exercising led by a physiotherapist are now continuing those exercises under their own control. 33%, almost one third, respondents described their treatment as ‘self management’. At a later stage we hope to explore exactly what this means.
 Tyrrell, Jessica S., et al. "Prevalence, associated factors, and comorbid conditions for Ménière’s disease." Ear and hearing 35.4 (2014): e162-e169.
2. Murdin, Louisa, et al. “Betahistine for symptoms of vertigo”. Cochrane ENT Group .