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Fourth national deafness sector summit

FOURTH NATIONAL DEAFNESS SECTOR SUMMIT
SATURDAY, 20 MAY 2006
PACIFIC INTERNATIONAL HOTEL, PERTH

NICOLE LAWDER
: I will now hand over to Barry MacKinnon, chair of the Hearing Services
Consultative Committee, the Chair of the Deafness Council of WA and Disability Services
WA, who will chair the next session.
BARRY MacKINNON: Thank you very much. It is my pleasure at the outset to introduce our
first speaker, Lynn Polson, secretary of the Meniere’s support group in Victoria. She was
diagnosed with Meniere’s in her early 30s and comes from Victoria. She lives in Mt Eliza, has
her third hearing dog called Ollie. Who picked the name?
She was awarded the Order of Australia for her work in the field and probably, more
importantly than anything I have said, she is a mad, keen, enthusiastic, crazy St Kilda’s
supporter.
LYNN POLSON: Thank you very much. It is an honour to be here today. I am here to talk
about the personal costs of Meniere’s. I received an interesting e-mail from the Deafness
Forum, “What can you talk about with this?” As it happens, the Meniere’s support group had
been conducting a membership survey on Meniere’s. Part of it was to get quantitative data
as well as qualitative data to try to get funding for the services we provide. I will talk a little
about what Meniere’s is. If you want further information, there are brochures at the back on
the display table. Meniere’s is brutal. Without warning, a person can be hit by dizziness,
vertigo, nausea, vomiting, tinnitus, fullness in the ear, anxiety, and pain from loud sounds.
The first attack comes right out of the blue. No-one can tell who is at risk of being inflicted by
the disease, why the attacks come or how long they will last.
Morbus Meniere is a chronic illness with large individual variations. It is not dangerous. You
do not die from it; you die with it. The patient experiences the first attack so dramatically that
there is no doubt about consulting a doctor. The classic attack takes the form of sudden
dizziness that lasts for two to six hours. There is a feeling of pressure and fullness. It is
often unbearable. The tinnitus is screaming like a jumbo jet inside your head and hearing
loss fluctuating all over the place, particularly affecting the low frequencies. The first attack
can be perceived as very serious for both the patient and people around them. Many think
the attack is due to some sort of dangerous acute brain disease. This often means an
ambulance ride to the hospital. However, medical examination shows everything is fine, the
patient is clear, blood pressure and heart functions are normal. However, the patient feels
awful due to the nausea and dizziness. Actually lying still is the best you can do. The
smallest movement will lead to increased dizziness and nausea. The tinnitus is intense, as is
the feeling of fullness in the ear. In most cases, the worst is over in a few hours.
Meniere’s can turn the life of a patient upside down. There is radical change in life situations.
New attacks come. However, they can vary gravely for the individual as well as from person
to person both in frequency, strength and duration; a loss of hearing over time in between
attacks. The tinnitus and feeling of pressure in the ear can be tormenting, often to the point
of making the patient an invalid. The majority of sufferers have depression and problems
sleeping. Many wind up on incapacity benefits. That is not me saying that, although I agree
with it. That is a quote from Sten Harris, head doctor from the Health Department and the ET
department. It was a study funded by the Norwegian Minister for Health and Social Care in
2002. The study was a follow-up to a preliminary investigation that found two key issues that
are a major concern for people with Meniere’s. Number one - many of the Norwegian ENT
doctors were not up to date with Meniere’s. Number two - the information given to the patients about the disease is worse than it should be in the preliminary results. It has not all been collated. Results of the 2006 Meniere’s survey conducted by the support group in Victoria indicate that the Australian situation is similar. My name is Lynn Polson, and as you heard, I am the secretary, and I have bilateral Meniere’s – 87 per cent in the first ear and 91 per cent in the second ear. I have moderate hearing loss bilaterally. For those who would like a more precise medical overview, please gather one of these brochures from up the back. As I said, I will concentrate on the personal cost of living with Meniere’s. Ten years ago I was at the Better Hearing National Conference in Canberra. I shared this story of my personal journey with Meniere’s at that conference and raised some of the issues that I thought should be addressed. Copies of that paper are available at the back of the room. It was interesting to reflect on those 10 years when preparing for this presentation today. We have come some way but, as we all know, we still have a fair way to. The survey aimed to quantify the impact of Meniere’s disease on individuals and identify the coping mechanism employed by people to reduce the impact on their lifestyle and quality of life. It was interesting listening to Harvey’s presentation earlier about how well we manage conditions. We wanted to identify future directions for future work that we will be doing and how we can improve and evaluate or quantify our work. We wanted to determine how members view the current levels of support offered by Meniere’s. How do I go backwards? We also wanted to provide information on the personal and financial costs attributed to living with Meniere’s disease. Meniere’s is a condition that poses problems for the medical profession. Stage one of the condition attacks occur with the debilitating vertigo and all the other symptoms I talked about earlier but you cannot move when that attack is happening. Some people will collapse to the ground, the vertigo is so severe and vomiting and diarrhoea. They have lost control of all their bodily functions. They are usually unable to move, let alone get to doctors. Days later when you get there, the symptoms have subsided and test results are negative, the ear has settled down, no hearing loss is measurable. You look and feel perfectly healthy. It is a frightening time when your world is spinning out of control and no-one seems to understand or believe you. The doctor is looking at a healthy person. Patient history is vital but many GPs, who are the first port of call, don’t have a clear understanding of Meniere’s symptoms. I will read out some of the quotes from the survey. This is an 85-year-old male - “I am amazed at how little the average GP knows about Meniere’s. “I kept being told I was having anxiety attacks and had one Zoloft tablet. The nurses would not help. I signed myself out after six days of hell. It took me another four years of hell before a GP sent me to an ENT specialist.” That is a long time. The Norwegian study found that many with Meniere’s disease suffer from five to 50 years - from when the symptoms first appeared - so up to five years before you get a diagnosis. It concluded the uncertainty that the patients must have felt with the dizziness, nausea and vomiting without being able to name that condition would have placed a great deal of stress and psychological impact on that patient. One of the recommendations to the Norwegian health authorities was that a coordinated diagnosis treatment rehabilitation option for mastering both the primary and secondary effects of the disease be implemented. A similar question was included in the MSGV - Meniere’s support group - survey. People asked when the symptoms first appeared and when they were diagnosed by a medical practitioner. Results are being analysed. From the anecdotal data, it seems to be the luck of the draw as to how early diagnosis is happening in Australia. Again some quotes: A 59-year-old female - “I visited my GP and that was not a helpful process. I have had many visits changing blood pressure medication, syringing ears, a scan etc, all to no avail and, at my insistence, eventually referral to ENT. It was a relief because I felt I had been dismissed as overreacting because I felt there was nothing wrong with me. It had an impact on my self-esteem and I felt depressed.” Sometimes the information given to patients is laughable. This is a 28-year-old female - “Neither my GP here or in the UK could diagnose the problem. Both said they could not find anything wrong. Finally referred by a GP here to an ENT specialist who diagnosed Meniere’s. He was not helpful after the diagnosis. He gave me a photograph of the information and advised me to come back in six months. No helpful advice, only, ‘Move to Sydney; it is louder and you will not notice the tinnitus as much’.” Who comes from Sydney? To my knowledge there has not been any major research in Australia with regard to Meniere’s incidence, diagnosis and treatment. Thus, there is no systematic approach to dealing with the patients who experience Meniere’s. If anyone knows of anything being carried out in Australia, I would love to hear about it. As would be expected, usually the Meniere’s diagnosis pathway starts with the doctor - your GP - the first port of call. Usually they would refer you to an ENT specialist or sometimes a neurologist. The MSGV results reflect this with 73 per cent of patients diagnosed by ENT, although 20 per cent were diagnosed by GP and not referred on. At this point you are sick, you want to know how to deal with this condition impacting on every aspect of your life. Living with Meniere’s out of control robs you of your identity and so many facets of life that we take for granted. Knowledge gives us power and the MSGV survey highlighted that people are keen to learn about their condition. However, more than 69 per cent found it difficult or very difficult to get the information and resources at the time of diagnosis. We can fix that. This is the point at which referrals to health professionals - especially ENTs, and GPs - should be made to the various organisations that can provide the information, peer support and help, organisations like the Meniere’s Support Group, Tinnitus Association, Better Hearing Organisation. Those organisations make up the members of the Deafness Forum, people who provide the assistive devices and programs to manage hearing loss, tinnitus and vertigo. We asked the question: how helpful was the information when they finally got it and where did they get that from? This table shows you how people rated the information. ENTs and GPs were very high. They had 362, the total number of people who went to those organisations. Look at these figures. That is a pretty high percentage - 21 per cent and 26 per cent found them not helpful at all. Overwhelmingly, the information from the Meniere’s support group of Victoria was rated highly. Ninety-eight per cent who were contacted found the information helpful or very helpful, but what about the people who do not know about the Meniere’s support group that had not been referred? Again, finding a support group is hit and miss. It is clear that there is a strong need for understanding the personal aspects of Meniere’s as it affects all facets of life. A common comment was lack of personal understanding by doctors. ENT doctors appeared not to know or care how a patient was feeling. “Live with it” they say “and get on with it”. A 59-year-old year old female - “The Meniere’s Support Group was very helpful.” “The counselling service of the MSGV got me through an incredibly difficult time. I am forever thankful.” So what are the intangible, unforeseen impacts of Meniere’s? Dr Alex, from Washington University in the United States, says - “Vertigo must be one of the worst chronic applications to affect the body. With many other disabilities, some portion of normal life can be continued. Vertigo disrupts almost every aspect of life, since the patient loses the ability to do anything normally, especially when movement is involved.” Feedback from the people who completed the impact of Meniere’s section identified that. The major ones were hearing loss, vertigo, and tinnitus and then came the secondary impacts. Meniere’s had a major or significant impact on 75 per cent of the respondents’ lives. Vertigo, hearing loss, nausea and vomiting have clear implications for lifestyle, placing limitations on employment people can undertake, distance and means of travel and leisure activities people can access. Whilst fewer people experience diarrhoea, drop attacks and agoraphobia - fear of leaving the house in case of an attack - the impact on the lives of those would have been frightening and very debilitating. Hearing loss for 320 of the 468 patients who completed this was the second. The type of changes varied but many found their hearing loss in crowds and large social gatherings very difficult and tiring. Even family get-togethers or evenings at restaurants were avoided; they were less enjoyable. Avoidance often led to feelings of isolation. A total of 173 respondents found that even with immediate family members. There were reports of feeling isolated and cut off from the various household goings on. I hate it when people just give up and say that it doesn’t matter, and you feel dismissed when you have not understood what is being said. The fear of having an attack of vertigo was experienced by three people. The feelings of isolation and panic attack are the secondary conditions. The psychological repercussions occur because of the physical symptoms but also in part because there is little community understanding of Meniere’s disease. I wobble around and fall over in the street out there walking past all of these hotels. People think I’m drunk or on drugs. They do not understand that something is going wrong with the inner ear. All of these secondary conditions can increase the level of debilitation of people with Meniere’s. Again, some quotes: a 52-year-old female - “The very worst thing about having this is wondering when the next attack will occur.” On the screen are some of the areas of life that people living with Meniere’s report are affected by. Let us look at that - a substantial to major change; home duties - substantial to major change; personal care - 18 per cent, relationship with partner, 19 per cent; relationship with children, 14 per cent; relationship with others, 25 per cent. A quarter of the people found that significant. Also, hobbies and interests, a major to substantial change, 40 per cent; travel, 28 per cent; independence, 17 per cent; extended absence from home, 26 per cent; to be able to eat the foods freely that you enjoy, 49 per cent. That is because a low salt diet is vital in Meniere’s management. I will not get into the medical side of that. It is all about fluid retention. Australian dietary guidelines recommend all Australians eat a healthy diet, including low salt, which is 120 milligrams per 100 grams of food. It is really difficult, particularly in a situation like this. This is the unseen and seemingly ignored aspect of living with an invisible, debilitating condition that involves major life implications. It is vital that it is recognised not as a minor condition of the ear but that the emotional or psychological or mental impacts be recognised and addressed by our health professionals and government services. People ask: how many people have Meniere’s? I cannot answer that because we have not done the research. The Australian government census does not know. In the Norwegian study, they thought it was isolated to about 1 000 of the population. It turned out to be 40 000. What is it here in Australia? We don’t know. The Meniere’s Support Group of Victoria, a voluntary organisation, is providing a much-needed service with minimal funding. We receive $57 000 from the Victorian Department of Human Services self-help, non-recurrent funding; yet, according to the survey results, the Meniere’s support group is out-performing all other providers and organisations, if you leave out diagnosis and the medication as we are not qualified to do that. But every other aspect of living with Meniere’s we are able to provide the information. Where do they find out the information? Let us look at this. How Meniere’s affects ears and can disturb balance, how it can progress over time; the importance of diagnostic tests. What diagnostic tests are available? Managing vertigo, managing tinnitus, managing hearing loss, medication, surgery - some of the alternative strategies. How to manage a low-salt diet, the importance of making lifestyle changes, balance rehabilitation, keeping up-to-date information. With the medical conditions, the ENT performed very well. Diagnostic tests - ENT specialists, 41 per cent. That was the highest figure. What diagnostic tests were available - again 41 per cent. But when it got down to the others, the figures were incredibly switched over. It was interesting to see that the audiologists out-performed the doctors to do with hearing loss component. Community health services - even medical conditions like low salt diets, Meniere’s support group is providing the information. The Meniere’s Support Group of Victoria was fantastic when I first contacted it because I was very distressed and the help I got was something I will never forget. The ENT explains the medical problems but does not help with the emotional problems. Without the help and information provided by the support group, I would have basic knowledge of the condition and honestly doubt that I would have had the strength to continue my battle with life during those years when life was so tough. A 52-year-old female - “This is a very professionally run organisation. Information is always current and relevant.” We are also responsible for our own health ultimately. Access to MSGV enables Meniere’s sufferers to become more independent and confident. Although I don’t attend meetings, I look forward to the information through the newsletter. How does MSGV do it? It works hard to meet the needs of Victorians and people throughout Australia and, increasingly, with the net worldwide. We do that by listening, providing information via newsletters and resources. With more than 1,500 calls a year, the Meniere’s information and resource centre, which in reality is a tin shed, cannot maintain this service unless it is funded. Again, another quote: “Overall, very poor support from most doctors and specialist agencies. When not working, I applied for the pension. Very distressing interview with government bodies. I try to work part time to support myself rather than go for a pension.” A big education program is required for all agencies as you need their help when you are not up to it, at your lowest and feeling very ill. Up to now, members of Deafness Forum and organisations in this sector have provided the funds for us to provide information and support to people with Meniere’s. What we are doing is an education program. I hope most of you know about the book “Understanding Meniere’s”. We receive funding. So far we have covered Victoria, and this year Western Australia. Deafness Foundation Victoria funds our web site. It provided part of the funds to conduct the survey, the results of which are about to come out. There are so many things we can be doing but the sector is providing the funds. It would be great if we could get MSGV pamphlets into every GP’s waiting room. We are doing that to educate the medical profession to inform the patient that there is a support group out there. That goes for all our organisations. That referral point is at the doctors’. Members of Deafness Forum can be proud of the advances made in the last 10 years but there is still much work to be done. Ten years ago I noted that it was a sad reflection on government funding and policy makers that many of the voluntary organisations were filling a crucial role in the health care of Australians but are operating with very limited resources and funding. A lot has not changed in that area. A coordinated diagnosis treatment rehabilitation option for mastering the primary and secondary effects of Meniere’s disease which covers hearing loss and utilising existing special interest groups that are available, would be a cost-
effective strategy. We need to be putting this on the list to get prioritised. We need to know
the number of people with hearing loss. We need to know how many people actually have
Meniere’s in our Australian community. We need to be providing these services. We need to
continue to push, to nag, to use Deafness Forum, our peak body, to talk to the government
services and the others. I would like to ask you all to consider what are the questions we
need to be asking. Thank you.

MARGARET ROBERTSON
: Thank you very much. Lynn gave us a very good oversight of
the personal situation. There is lack of understanding of the disease, clearly not just in the
public but among the professions according to Lynn. Very importantly, she highlighted the
fact that once diagnosed - I know this has happened in our family - when your children are
diagnosed with any problem, your thirst for information is ravenous and the importance of it
being timely and accurate is crucial in both this area and many others.

Source: http://www.deafnessforum.org.au/pdf/Summit%202006/4th%20NDSS%20speech%20-%20Lyn%20Polson.pdf

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