Contergannetzwerk Deutschland e.V. - Forum - Contergannetzwerk Deutschland e.V. https://contergannetzwerk.de/ Fri, 22 Feb 2019 13:51:20 +0100 Kunena 1.6 https://contergannetzwerk.de/components/com_kunena/template/default/images/icons/rss.png Contergannetzwerk Deutschland e.V. - Forum https://contergannetzwerk.de/ en-gb Thema: Nach 50 Jahren endlich ein Fonds für Opfer von Softenon - von : werner https://contergannetzwerk.de/index.php/forum/263-öffentliche-Mitteilungen/45684-Nach-50-Jahren-endlich-ein-Fonds-für-Opfer-von-Softenon.html#45684 https://contergannetzwerk.de/index.php/forum/263-öffentliche-Mitteilungen/45684-Nach-50-Jahren-endlich-ein-Fonds-für-Opfer-von-Softenon.html#45684 www.grenzecho.net/region/inland/nach-50-...r-opfer-von-softenon

Nach 50 Jahren endlich ein Fonds für Opfer von Softenon
Für die belgischen Opfer des Schlaf- und Beruhigungsmittels „Softenon“, das in anderen Ländern auch unter den Markennamen „Contergan“ oder „Thalidomid“ verkauft wurde, wird ein Entschädigungsfonds eingerichtet – 50 Jahre nach dem Verkaufsverbot.

Softenon“ war Ende der 1950er und Anfang der 1960er Jahre als Schlafmittel und Mittel gegen Morgenübelkeit bei Schwangeren verabreicht worden und hatte weltweit zu tausenden Missbildungen bei Neugeborenen geführt. In Belgien sind 37 Fälle bekannt.]]> öffentliche Mitteilungen Fri, 15 Feb 2019 19:48:46 +0100 Thema: nächste Stiftungsratssitzung der Conterganstiftung - von : admin https://contergannetzwerk.de/index.php/forum/362-Stiftungsrat---öffentlich/45660-nächste-Stiftungsratssitzung-der-Conterganstiftung.html#45660 https://contergannetzwerk.de/index.php/forum/362-Stiftungsrat---öffentlich/45660-nächste-Stiftungsratssitzung-der-Conterganstiftung.html#45660
Die Stiftungsratsmitglieder wurden in den vergangenen Tagen per E-Mail gefragt, ob ihnen als Termin für die kommende Stiftungsratssitzung der 15.5.2019 oder 5.6.2019 lieber sei. Beide Betroffenenvertreter haben begründet darum gebeten, den Mai -Termin zu nehmen. Da den Ministerialvertretern der Juni-Termin lieber war, findet die Stiftungsratssitzung nun am 5.6.2019 statt.

Hierzu und zu dem Diktat, dass wir grundsätzlich nach Berlin anzureisen haben, obwohl der Stiftungssitz in Köln ist, habe ich folgendes Schreiben verfasst:

Christian Stürmer
Ordentliches Mitglied im Stiftungsrat der Conterganstiftung für behinderte Menschen (Betroffenenvertreter)

73760 Ostfildern
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An den
Vorsitzenden des Stiftungsrates
der Conterganstiftung für behinderte Menschen


nachrichtlich: Mitglieder des Stiftungsrates und Geschäftsstelle des Vorstandes der Conterganstiftung





Sehr geehrter Herr Linzbach!
Sehr geehrte Damen und Herren!

Hinsichtlich der kommenden Stiftungsratssitzung wurde ein Termin im Mai und einer im Juni zur Auswahl gestellt. Während beide Betroffenenvertreter für den Mai-Termin votierten, sprachen sich die Ministerialvertreter für den Juni-Termin aus.

Hierbei ist wiederum bezeichnend, dass nicht nur als Tagungsort wieder Berlin bestimmt wurde, damit es die Ministerialvertreter einfacher haben (wie ausdrücklich in der letzten Stiftungsratssitzung erklärt!), sondern wieder einmal die terminlichen Wünsche der Betroffenenvertreter hinter die der Ministerialvertreter gestellt werden. Es ist den Ministerialvertretern nicht nur schlicht völlig egal, dass die schwerstbehinderten Betroffenenvertreter nach Berlin reisen müssen, obwohl der Sitz der Conterganstiftung Köln ist. Alle müssen reisen - vielzählige Geschäftsstellenvertreter, Vorstand und die Betroffenenvertreter - nur die drei Ministerialvertreter machen es sich bequem!

Wie bei der Pro-Forma-Abfrage im Kreis der Stiftungsratsmitglieder durch mich mitgeteilt, wäre auch mir den Mai-Termin lieber gewesen, da ich Anfang Juni wegen einer familiären Feier zeitlich sehr eingeschränkt sein werde.

Die Mühen, den Stiftungsratstermin einzuschieben, werde ich nun aber auf mich nehmen und zur Sitzung am Mittwoch, 05.06.2019 (11.00 Uhr bis 17.00 Uhr) im BMFSFJ kommen.

Für die Zukunft wäre es vielleicht einfacher für das BMFSFJ, die Betroffenenvertreter überhaupt nicht mehr zu konsultieren, wenn deren Wünsche ohnehin nicht berücksichtigt werden. Warum tagen die Ministerialvertreter nicht einfach alleine? Mit deren Stimmenmehrheit wird doch ohnehin durchgesetzt, was von ihnen gewollt wird.



Beste Grüße

Christian Stürmer]]> Stiftungsrat - öffentlich Thu, 07 Feb 2019 12:06:05 +0100 Thema: Australien - von : Brigitte1959 https://contergannetzwerk.de/index.php/forum/263-öffentliche-Mitteilungen/45654-Australien.html#45654 https://contergannetzwerk.de/index.php/forum/263-öffentliche-Mitteilungen/45654-Australien.html#45654
McCREDIE, Professor Janet, Private capacity

NEWBRONNER, Ms Elizabeth, Private capacity

VARGESSON, Professor Neil, Private capacity

Evidence from Ms Newbronner and Professor Vargesson was taken via teleconference—

Committee met at 08:33

CHAIR ( Senator Siewert ): I declare open this second public hearing for the committee's inquiry into support for Australia's thalidomide» survivors. We acknowledge the traditional owners of the land on which we meet and pay our respects to elders past, present and emerging. On behalf of the committee, I welcome everybody here today. I thank everyone who has made a submission to the inquiry. In particular, the committee recognises the «thalidomide» survivors and their family and friends who have provided personal accounts of their experiences to the committee. This is a public hearing, and a Hansard transcript of the proceedings is being made. The audio of this public hearing is also being broadcast via the interweb.

Before the committee starts taking evidence, I remind all present here today that, in giving evidence to the committee, witnesses are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to the committee, and such action may be treated as a contempt of the Senate. It's also a contempt to give false or misleading evidence to the committee. Under the Senate's resolutions, witnesses have the right to request to be heard in private session. It is important that witnesses give the committee notice if they intend to ask to give evidence in private. If you are a witness today and you haven't already spoken to the secretariat about it, but you do wish to give evidence in private, could you please let us know. That's because you're probably aware we're already reshuffled the agenda so that we can keep those wishing to appear in private separate, so we just need to make additional arrangements if you do wish to give evidence in private but haven't let us know.

People will be aware, I have no doubt, that the committee has received a request for the media to film today's proceedings. The committee has also received requests from some witnesses not to be filmed, and we've identified those witnesses as much as possible. If, again, you haven't let us know, please let us know. Also, there won't be filming of the audience; it will be of the proceedings. If you're in the audience and one of those people who don't want to be filmed, the crew won't be filming the audience. Media representatives are reminded that they are unable to take images of the senators' and witnesses' documents or of the audience. Activity may not occur in the hearing room during the suspensions or after the adjournment of proceedings. That's normal for Senate inquires. Media representatives are also reminded that permission to film may be revoked at any time and that the media must follow the direction of the secretariat staff. We are organising for a separate room, so those wishing to talk to the media won't be denied the opportunity; it will just be in a different room to this room. If you're a witness today who objects to being filmed or photographed, please let us know.

Now, having done all that, we can get going. I'd like to welcome our first witnesses. Do you have any comments to make on the capacity in which you appear?

Prof. Vargesson : I am a professor in developmental biology at the University of Aberdeen. I'm a research scientist looking at the action of «thalidomide» upon embryos.

Ms Newbronner : I'm a research fellow in the Department of Health Sciences at the University of York, and I'm also a final-year PhD student studying the health and independence of UK «thalidomide» survivors as they age.

Prof. McCredie : I'm retired, but I was Professor of Radiology at the University of Sydney.

Dr Kennedy : I'm a paediatrician and clinical geneticist, and I run a teratogen information service called MotherSafe in New South Wales.

CHAIR: Welcome, everybody. Can I remind senators and witnesses appearing from overseas that parliamentary privilege does not apply to countries or persons outside Australia. That's particularly for our witnesses from overseas, of course. Can I double-check that everyone's been given—you two, particularly, Professor McCredie and Dr Kennedy, because it applies to you—information on parliamentary privilege and the protection of witnesses and evidence?

Ms Newbronner : Yes, I have.

CHAIR: Thank you for your submissions. I'd now like to invite each of you to make an opening statement, and then we will ask you some questions. Dr Kennedy, do you want to kick-off?

Dr Kennedy : Yes. Thank you for inviting me to address this inquiry. From a very personal perspective, I feel very close to this issue. I was born in the week that the article in The Lancet was published in 1961—I'm telling everyone my age!—and in fact I went to school with someone who was affected by «thalidomide» . I've spent my working career as a paediatrician and clinical geneticist and running a service to address issues about exposures in pregnancies.

We know that «thalidomide» was introduced in 1957 and it's led to a drug disaster that's had really devastating and ongoing consequences, and we're still dealing with them. Individuals are now in their 50s and are therefore facing all the usual issues of advancing middle age, as well as the additional challenges of people with significant physical disabilities. While many individuals have done remarkably well in achieving their potential, particularly in terms of education and career, despite huge physical difficulties and societal and practical barriers, it's apparent that many still face significant challenges and have to deal with chronic physical and psychological problems, often without specialist assistance from healthcare professionals who have expertise and experience in dealing with their specific needs. So there is increasing awareness to demonstrate how important it is that they're fully supported as they age, and that their very specific medical and psychosocial needs are appropriately met and adequately funded.

They require a multidisciplinary approach to deliver comprehensive and specialist medical assessment, treatment programs and access to a range of skilled health professionals, which include, but are not limited to, physiotherapists, occupational therapists, exercise physiologists, orthopaedic surgeons, rheumatologists, endocrinologists, dietitians, ENT and audiologists, optometrists, ophthalmologists, pain specialists, dentists, dental hygienists, psychologists and psychiatrists. I think of particular importance is psychosocial support, as demonstrated in several studies by increased rates of mental health disorders in this population, and this is likely to increase as this group ages and faces new challenges.

Prof. McCredie : Excuse my voice; I've got laryngitis. I thought I'd begin by thanking the committee very much for asking me to give evidence here, and also by trying to crystallise what's actually happening right now with these thalidomiders. «Thalidomide» embryopathy could be defined as a lifelong disease of the sensory nervous system. It doesn't stop with the birth of a malformed baby; it has a second phase later in life, and I think I can explain that for you. «Thalidomide» is a sensory nerve poison—that we know. It attacks the sensory nerves of the embryo and it can cause either major or minor damage. Major damage will kill the developing nerve cells in the embryo and, if enough nerves are killed, growth is going to stop in the area supplied by that nerve and that's going to leave a gap in the anatomy of that area. So the baby is going to be born with longitudinal reduction deformity—in other words, «thalidomide» embryopathy.

The birth defects or the embryopathy are well known to this audience and have been compensated in the past to a fairly good degree, but what has not been recognised or compensated so far is thalidomide's minor damage. The minor damage is when thalidomide's assault is less severe for various reasons. It might be a different part of the embryo that's not developing so fast, it's not so sensitive; perhaps it's a matter of dose; or perhaps some nerves have been killed, but fewer, and those that have been damaged have been able to recover better and keep functioning. In other words, this leaves a whole zone of the embryo with minor damage, where there is no physical birth defect visible, but there is an invisible reduction in the population of the nerves. Because these go unnoticed, the thalidomiders just live with them for most of their lives. But nevertheless the neurologists, if pressed, will recognise it and they do tests to establish its presence. The neurologists actually call this situation a subclinical neuropathy, meaning that there is minor damage to the nerves insufficient to cause symptoms or signs.

So life goes on normally, until middle age. All of us are going to start middle age with the ageing process, where the skin loses its elasticity, wrinkles appear, memory falters, hairs go white and drop out. And like hairs, nerve fibres also wither and die at that point; whole rafts of them disappear. Normal people without «thalidomide» exposure have a huge surplus of nerve cells, so plenty of nerves to buffer the ageing process without having symptoms or signs. But when the ageing process arrives for middle-aged thalidomiders, it hits a population that's already been severely depleted by the «thalidomide» experience in embryo. There are not enough nerve cells there to function properly, and so they get symptoms: nerves send the wrong messages, like pain, tingling and numbness; there's confusion of hot and cold sensations, and many other phenomena; or nerves may fail to function at all, and the part goes numb. So thalidomiders were robbed by «thalidomide» before birth: they were robbed of a population of nerve cells, and they were born with reduced numbers, without the normal buffer against any possible future damage. Thus, in middle age, thalidomide's minor nerve damage, combined with the age changes that are inevitable, combine to cause a profoundly debilitating sensory neuropathy, resulting in premature onset of old age. Victims aged 50 have the physical problems of normal 70-year-olds.

For the last few years, this new disorder has been taking over their lives. They suffer chronic pain; stiffness in the neck, spine, pelvis, shoulders, hips and knees. Pain causes extreme fatigue and interferes with all their daily activities. Deafness gets worse, and loss of independence causes anxiety and depression. Previously diligent workers have to take two to three days off work to recover from one normal day's work. They're not going to hold down their jobs in that situation; they lose their incomes. Sometimes the social support that they've built up starts to falter because of the extra strain of this second phase of nerve damage expressing itself. This post- «thalidomide» syndrome is happening right now, so any plans for the future support, which we're addressing at this meeting, must include it in that equation. And it's not only their birth defects to be considered but also the additional late onset sensory neuropathy.

You should know that it's also happening internationally. The German and the UK thalidomiders have all pronounced upon it. See the reports from Heidelberg, Nordrhein-Westfalen and from The «Thalidomide»Trust. I also draw your attention to the PLOS paper that's in the satchel. It's very valuable documentation. All medical reports stress that this is a premature ageing process, and therefore I intend to propose today that the federal government allows access to the age pension now to proven thalidomiders who've had to leave their jobs and incomes because of this early ageing process. I think we will get to that at the end of the day, under the subheadings. Thank you very much.

CHAIR: Ms Newbronner, would you like to go next?

Ms Newbronner : Yes, thank you. I would like to thank the committee for inviting me to contribute to the inquiry. I've been working with people in the UK «thalidomide» community for around 10 years, and particularly was involved in evaluating the British government health grants to «thalidomide» survivors in the UK.

Much of what I would say would echo the two previous witnesses really. I think my doctoral research has shown that as «thalidomide» survivors reach late middle age, they're experiencing declining physical health, in particular secondary damage caused by the way they've had to use their bodies to compensate for their impairments. I think it's really important to understand that «thalidomide» embryopathy, whilst not progressive in the traditional sense, is not static. As Professor McCredie said, it has consequences over the life course. I feel that the lesser function associated with shifting impairment and particularly activities of daily living is having a cumulative impact on people and a detrimental effect on «thalidomide» survivors' mental wellbeing.

It's clear from the «thalidomide» survivors that I've been working with in the UK that they do perceive that they are ageing prematurely compared to their non-disabled peers. This seems to be borne out in the wider literature on ageing with lifelong disability. However, my sense is that they're also ageing differently. They don't have an older generation to look to and learn from in terms of how to age well. The rare nature of many «thalidomide» survivors' impairments means that traditional sorts of equipment and so on are not helpful to them. It is also evident that the consequences of secondary damage are being layered onto their original impairment alongside the normal ageing processes.

What we found interesting in the UK is that «thalidomide» survivors are taking a wide range of measures to try to preserve their function and maintain their independence. Many people don't feel able to work or are choosing to give up work in order to preserve their bodies and preserve what remains of their functions. This has an important economic consequence for people. The strategies people are using vary according to the nature of their impairment, their circumstances and their attitude, but there's no question that having the resources to pay for things like equipment or to be able to give up work makes an enormous difference. I think it's also important to understand that money creates a sense of security and empowerment.

We found with the UK health grants that giving people the freedom to use the health grants in the way that they judged best to help them was really crucial. They really valued having that freedom and made the most of it. However, as Dr Kennedy mentioned right at the outset, I think it's very important that «thalidomide» survivors have access to really good advice and support about equipment, adaptation, health care et cetera. That's a function that in the UK the «Thalidomide» Trust has very much performed. I think it's been especially important where «thalidomide» survivors have found themselves needing surgery or more invasive treatments. They have access to healthcare professionals who really understand the nature of «thalidomide» damage and can treat them appropriately. Thank you.

CHAIR: Thank you. Professor?

Prof. Vargesson : I would also like to thank the committee for the invitation today. I'm a research scientist and I study the action of «thalidomide» upon embryos and how the drug causes damage and what the molecular targets are. I'm particularly interested in trying to make forms of the drug that don't cause damage to the embryo but are still clinically relevant, as the drug is used today to treat a wide range of conditions quite successfully but still has the spectre of causing birth defects.

With regard to some of the things that Professor McCredie mentioned, I completely agree that there is some damage caused out with the typical classical definition of «thalidomide» syndrome. For example, if you put the «thalidomide» onto embryos late on, after what you would classify as a time sensitive window, you find lots more internal organ damage. Some of the research we're doing at the moment is investigating what sort of damage you would see when you apply «thalidomide» to late-stage embryos and how that might help us identify other people who might be affected but perhaps don't know that they are affected by it today.

In our research we've dissected the drug down into all its different component parts and asked which of those component parts causes problems to the embryo. If we can get a safe form of the drug, the drug has many different actions. It affects blood vessels, which is why it's used to treat cancer. It affects the inflammatory system, which is why it's used to treat forms of leprosy and multiple myeloma. It's also a neurotoxin, as Professor McCredie mentioned.

We've got good evidence that we can reciprocate a lot of the drug's actions upon the embryo in a chicken via the anti-antigenic action of the drug—that is, it takes out the blood vessels and destroys the blood vessels. We can replicate most of the damage we see in humans in a chicken by destroying the vessels. We don't find the same damage when we take out the nerves. Why that is relevant here is that we can try to find a formative drug that doesn't affect blood vessels and can be used as a clinical treatment. It means that you can look for patients who have cardiovascular anomalies. An awful lot of literature shows that «thalidomide» survivors have cardiovascular problems. Obviously, as we've heard from the three previous speakers, the early onset problems that «thalidomide» survivors have include problems with the cardiovascular system but also problems with simply drawing blood. If you try to draw blood from a «thalidomide» survivor's limbs, it is very difficult. Again, no two «thalidomide» survivors are alike, so we need to find ways of assessing and treating «thalidomide» survivors in the best possible way but also in the most effective way. We also need to remember that no two «thalidomide» survivors are the same, so any treatment plans we come up with need to be individually based. Thank you.

CHAIR: Thank you. Senator Steele-John, do you have any questions?

Senator STEELE-JOHN: Yes, I definitely do. First of all, Ms Newbronner, I want to take you to your experience of the UK health department's engagement with this community. What is your understanding of the extent to which the UK-specific health department has engaged with this community with regard to things like understanding the numbers of folks affected, research in the area, coordination with other services et cetera?

Ms Newbronner : The UK government has been involved through the health grant. They did commission an evaluation of the health grant to understand how «thalidomide» survivors were using their grant funds and the impact it was having on their general health and wellbeing. To that extent, they were interested in what the outcomes of the health grant were. However, to my knowledge, they haven't directly commissioned any research in this area. Most of the research that has been commissioned has generally been coordinated or commissioned through the «Thalidomide» Trust and sometimes through individuals, like me, who have an interest in the field. In that sense, the British government hasn't had a direct involvement in that way.

One of the issues in the UK has been around gaining access to healthcare professionals, particularly doctors but not just doctors, who have a solid understanding of the implications of «thalidomide» damage. Again, «thalidomide» embryopathy hasn't been a specialist commissioning area in the UK NHS. The «Thalidomide» Trust has tried to perform the function of identifying specialists who have an interest in the field and enabling individual «thalidomide» survivors to see those specialists, even if they live in a completely different part of the country, and trying to develop a national specialist, if you like, in different areas of orthopaedics or cardiology—different fields. It's really the trust that performs that function rather than the government. Frequently, «thalidomide» survivors have had to pay privately at least for the initial consultation and sometimes for further treatment if that has been required. Although the UK health grants were not strictly intended for treatments that could have been provided on the National Health Service, in reality, in order to get the specialist treatment that they require, many «thalidomide» survivors have had to pay privately for some or all of that care.

Senator STEELE-JOHN: Can I just go a little bit deeper into that. You note that although it was specified that the health grant was not to replace supports that people might receive traditionally through the health system in reality the NHS wasn't meeting the needs of survivors. Was that in relation to the specific, specialised understanding that is needed, or was it the general, flawed nature of the health system, for instance?

Ms Newbronner : I would say it was to do with the specialist understanding really, because if someone, for example, had a shoulder problem or a problem with their wrist or their hand, an orthopaedic surgeon in their normal local hospital simply wouldn't have the knowledge to treat that person or the understanding of the «thalidomide» damage. Many «thalidomide» survivors in the UK will tell you stories of being offered inappropriate treatment and having to be quite resistant to people wanting to do things to them without adequate knowledge. My observation is that it's around finding and getting to a specialist who really has the knowledge to treat you or indeed to sometimes give you advice about not treating and saying: 'Surgery isn't appropriate here. There might be other conservative options that we could look at.' So, for me, it is about having access to that specialist care rather than a general failing in the system, if you know what I mean.

Senator STEELE-JOHN: For us here in Australia considering this issue going forward, do you think that it would be useful if our health department undertook some research in this area to be able to map the cohort but also identify the relevant medical professionals to help the community connect to the supports they need in that space?

Ms Newbronner : Yes. Certainly if there isn't already a network or knowledge about specialists with an interest or experience with treating «thalidomide» survivors I think that would be a really valuable thing to do. Certainly one of the things that the trust has been doing—and that some of us who are interested in the field have also been trying to do—is making some international connections, particularly given a lot of the work that has been done in Germany around pain management and so on. A sort of cadre of specialists in each country that could also share knowledge with specialists in other countries would, I think, be even better. To some degree that needs some infrastructure or some organisation. It's difficult for individuals to do it alone.

CHAIR: Can I just jump in there and ask this of all of you. You talked about other potential damage. Professor McCredie, you were talking about the impact on nerves that may not have been picked up. That's my understanding. In your evidence, Professor Vargesson, you talk about other impacts beyond the first trimester. Is there any work being done on this, and is there a way to identify survivors who are now suffering from the effects of nerve damage that hadn't been identified in the past but which is now becoming prevalent because it is associated with ageing? I'm throwing that to everybody to share your experiences. Is there any diagnostic process, and if there isn't how are we going to identify these groups of people?

Dr Kennedy : From the clinical point of view, having read a lot of the literature—and I've seen a couple of people—it's really hard when you have a lot of orthopaedic problems. People have overuse and strain and then things like entrapment and neuropathy, so it becomes really difficult to try and disentangle it from: is there an evolving neuropathy from the original damage? But, from a practical and clinical point of view, I think it's really important that the actual problems are addressed as well in terms of: what are the practicalities of dealing with these issues? Unfortunately, it's not going to be just one specialist; it's going to have to be a multidisciplinary approach. I think that's the real emphasis. There are going to be orthopaedic surgeons, hopefully in a relatively minor role, but there are also going to be physiotherapists and pain specialists. You need to have that approach. That's why you need to have people that actually understand the problem to start with.

Prof. McCredie : I think you'll find that the Germans have done a bit of work on this. The Cologne study from Nordrhein-Westfalen has a section where the neurologists were called in by the orthopaedic surgeons to try to sort out what the new pain that the people were having was. They had a test that was called painDETECT. An annex in that report describes what they did. They did it, I think, by questionnaire largely. But they sorted out their people who were getting this slight late-onset pain into two groups. It was interesting: they split 50-50. They thought 50 per cent of the pain was due to wear and tear on malformed joints and bones, entrapment, spondylosis and things like that, which occur in the normal community but are much worse in this community. But they said the other 50 per cent had the features of neurogenic pain—pain that was initiated in the nerve itself. That pain is extremely difficult, classically, to treat because it's a very persistent and a particularly strong character of pain. The German study actually separated those two different causes. So, there are ways and means of doing it.

The neurologists here and I think in Britain would probably do sensory nerve action potentials, which is fairly aggressive. Nevertheless, once around is probably a thing to be considered. That will measure the size of the community of nerves and the amount of damage, and at least give them some sort of handle on it.

CHAIR: Ms Newbronner or Professor Vargesson, do you have anything to add?

Prof. Vargesson : We work with the embryos. We actually apply the drugs to various embryos. If you do it within the classical time-sensitive window, which causes outward damage to the ears, to the nose, to the eyes, to the legs, to the arms, that's fine. We were surprised, when we were applying this drug later—much, much later—way after the time-sensitive window, that you get damage. This is internal organ damage, and it's causing problems for the gastrointestinal tract, the cardiovascular system, the kidneys, the liver and the genitals as well. It's mild damage. It's not severe damage. It's not like the outward damage you would see earlier on, but you're getting problems.

What it turns out to be, in our opinion, is a maturation problem. The drug seems to prevent the tissue from growing correctly and growing into its adult size and, therefore, the tissue itself is not fully functional. So you've got this position where people could be damaged by the drug and then later in life end up with kidney problems or liver problems because they're not fully functional. How would you assess that that was directly from «thalidomide» exposure late in the trimester? You'd have to have medical records or some sort of evidence that you were born in that era. But it's very difficult because the clinical criteria for «thalidomide» embryopathy that are used today are based on the 1960s ones, which were based on the most severe cases of «thalidomide» embryopathy in young children. So I do think people have been missed out. Most drugs, if you put them onto embryos, give you a range of damage. They don't give you the most severe kind; they'll give you a range, depending on the dosage and the timing of exposure.

There are ways to look at it. I'm not aware of many labs looking at it. We certainly are. We're certainly interested in understanding why that's the case. I would reiterate that we find that the maturation issue is due to vascular problems. The vessels are not getting into the tissue, and so the tissue is not growing correctly and the nerves are going in a little bit later. Then you get an exacerbation of the damage because of that failure of the nerves to go in later. I agree with some of the comments already made, that you need several different specialists to look at these things, but you definitely need people to understand what they're looking at. Thank you.

Ms Newbronner : I have two points to add. One of the things that we found in the UK is that a lot of «thalidomide» survivors are reporting things like bowel and digestive problems that they didn't have when they were young or that weren't clearly diagnosed when their damage was assessed as teenagers. There is some evidence that they're now experiencing these problems in later life, which may be due to the original «thalidomide» damage in some way. Going back to Dr Kennedy's earlier point about a multidisciplinary team, I know that certainly in Hamburg, Germany there is a pain specialist who has been developing a multidisciplinary service for «thalidomide» survivors so that, regardless of what the origins of people's pain or problems are, they can be seen by a range of specialists and professionals. I think there is an interesting model there that could be looked at as well.

Senator STEELE-JOHN: Could I take you, Ms Newbronner, to the question of the UK understanding of the size of the cohort and how that is reached currently.

Ms Newbronner : We essentially have quite a good knowledge in the UK, because people become beneficiaries of the «Thalidomide» Trust once they're identified as a «thalidomide» survivor. We started with an original cohort of what were then «thalidomide» children, if you like, in the seventies, but people have continued to become beneficiaries of the «Thalidomide» Trust and receive the annual compensation payments for all the years since, really. The trust would be the best people to ask about this, but I think there are about 466 UK-born «thalidomide» survivors known to the trust. As I understand it, people continue to come forward, even now, who may well be «thalidomide» survivors. They go through a process of assessment with the trust. In that sense, those people who meet the criteria are clearly identified in the UK.

Senator STEELE-JOHN: Finally, your submission makes specific reference to the complex adaptations that are required to support survivors, and the need for advice and support around that. Can you take us to that in a little bit more detail?

Ms Newbronner : Certainly. Obviously, some «thalidomide» survivors with more severe damage—all their lives they've needed to use equipment and make adaptations to their homes and their cars or have needed support. But my sense is that more and more people within the «thalidomide» community are now needing to take those kinds of steps to either preserve their function or maintain their independence or their quality of life. For those people who always have adaptations and support, they need to take additional measures. There is a huge range, from specially adapted kitchens, bathrooms and vehicles to small items and equipment like dressing sticks, toilet sticks, wash-and-dry toilets and all those kinds of things. There is a huge range of equipment and adaptations.

Obviously, a lot of people also have personal assistants. The sense I have is that the need for personal assistants, either informally from family or as paid personal assistants, is growing. One of the important things is that for people who need major adaptations to their homes or their cars the cost is enormous. It's really huge. For somebody who needed a car with major adaptations, it could be 50,000 pounds to 60,000 pounds. There are very major costs involved for people.

The other sense that we've had—and it's one of the things which I think has been important for the health grants to be secured over the long term—is that adaptations and equipment that perhaps helped someone 10 years ago or five years ago may not be sufficient now. Their needs are continuing to evolve, and so their homes, cars and equipment also continue to need to be evolved. They're not one-off costs, I suppose, is what I'm trying to say. These costs will arise progressively over time as people age. They're not a one-off capital expenditure and then it's gone kind of thing.

Senator STEELE-JOHN: Before I run over my time—the point of that being that if you were, say, assessed at a particular time as having a certain number of needs or impairments that was then related to an amount of money you were given, it may well be that over time you have aged and changed in such a way that your needs are now significantly more than they were?

Ms Newbronner : Absolutely, yes.

Senator STEELE-JOHN: Thank you very much.

CHAIR: There will be some time for some more, but I would like to follow up that particular point. Senator Keneally, did you want to ask some more questions there as well?

Senator KENEALLY: First, I want to apologise for my late entrance. Secondly, I thank all the witnesses who are here today now and those we will hear from later. Thirdly, I want to say that Senator Steele-John just asked the very insightful questions that I was hoping to ask, so I thank him as well for that. Thank you.

Senator STEELE-JOHN: I agree!

CHAIR: I've got a couple of questions to build on that. If you also want to continue to ask questions, just let me know. I want to follow on from where Senator Steele-John left off. The impacts of «thalidomide» are continuing to—I think evolve was the word that was just used. Given that there is no experience beyond what people are living now, it's impossible to foresee what ongoing impacts there are. Also, I interpret what you've said, Professor McCredie and Professor Vargesson, as that there is a group of people that may in fact be affected by «thalidomide» whose impacts were only just under severe as well. Is that a correct interpretation of what you've been saying in terms of the nerve damage? You mentioned that people may not have visibly physical impacts. Is that a correct understanding of what you've been saying?

Prof. McCredie : Yes, it is. Although, I don't know how you'd ever round those people up if they didn't have the primary defects to get the marker.

CHAIR: That was sort of where I was going with my previous question in terms of whether there is a group of people that, potentially, is affected that we don't have a process of identifying.

Prof. McCredie : That's quite possible.

Prof. Vargesson : I would agree. I think that's very possible.

CHAIR: Thank you. I want to go back to this issue of how we put together a package of support for people when we are in a situation where we are still identifying the impacts on people's lives. We've got the points that you've just articulated in terms of early onset ageing. We don't know how that's going to manifest. The obvious question is: what supports are currently there, what should be made available and are current supports adequate?

Obviously, the evidence that we've received today is that those supports are inadequate. How should we be supporting survivors as they're ageing? Professor McCredie made the point about the age pension, but it seems to me there's a lot more than that that we need to make sure is provided.

Prof. McCredie : I would see the age pension as being a sort of safety net that would at least give people the security of covering their costs of living—the basic, ordinary costs of living, not counting all their extras. And probably in addition to the age pension they'd need to be getting some one-off payments for the cars, which we've just heard are very expensive, for air conditioning and for all sorts of extra costs that are going to evolve as this disease evolves.

Dr Kennedy : Not to mention all the health costs of not just seeing the doctor but seeing the allied health professionals and dentists. Dental problems have been identified as a huge problem, and we know that in Australia dental services are not covered by Medicare. That's something that's certainly a big issue. It's something that is evolving just with normal ageing, but this population has been identified as having specific dental issues, chronic facial pain and other issues. There is that emphasis on allied health and dietetics: they're much more likely to have metabolic syndrome, diabetes and cardiovascular problems—lifestyle issues that all of us have but are again exacerbated in this population. So I think it's really about looking at daily living but also much more broadly in terms of health and wellbeing and, as I mentioned earlier, the high rates of mental health issues as well, which again are not particularly well funded and supported in the general population here in Australia.

CHAIR: Thank you. Can I go to Ms Newbronner. You made a series of recommendations in your submission. The first one in particular is obviously aimed at the UK, but it's translatable to Australia, and I think we can take some principles out of your recommendations in terms of making sure that people feel supported. The issue of security comes out very strongly in your submission. Could I ask you to expand on that, because that's relevant across all countries. Different systems may differ in how supports are delivered, but what are the key principles that should underpin making sure that people are adequately supported?

Ms Newbronner : In the UK, although there was a settlement in the seventies, it's actually quite interesting in that, financially, people really weren't that well-off until the last decade, not until their compensation payments ceased to be taxed and there was an uplift in the compensation. And then obviously in 2010, when the health grant came in, that would have improved people's financial position substantially. Until then many people really felt that they were struggling to meet all of their needs.

When I was doing the evaluation of the health grant, one of the overwhelming senses that I had was almost a feeling of relief that people got this money, because they now felt they had a safety net. What I was trying to convey wasn't just the things that the money could buy; it was that sense of security that it gave them—that they could do things to make their daily life easier but also, if their needs changed in the future, if their personal or family circumstances changed, they had a little bit of a buffer to help them cope with that. I think that was the importance of the money for them, and also the fact that the health grant, once it moved beyond the pilot stage, was secured for 10 years—hopefully beyond that, but certainly for 10 years. That's really what I was trying to convey.

Senator STEELE-JOHN: I have a question for Ms Newbronner. In terms of your research around poor mental health outcomes, how important have you found it to be that the financial contribution represents a fundamental recognition on behalf of the UK government of the role that it played in the disaster, and how has that then gone on to affect the survivors' mental health outcomes?

Ms Newbronner : I certainly think for some «thalidomide» survivors there was a sense of reparation, of recognition of what had happened to them. But I think in terms of mental health probably the greater impact was from the security that the money gave people. I think reparation was part of it, but probably on a practical level it was more around the security that it gave people. Having said that, that certainly did make a big difference, but I think there are still issues in terms of «thalidomide» survivors' mental health. Certainly trying to look at ways to peer support, as well as professional support, to help people cope with the unique circumstances that a lot of «thalidomide» survivors are in is very important.

Senator STEELE-JOHN: So basically what you're saying is the symbology of an apology is insufficient without that being backed up by actual material support?

Ms Newbronner : Yes, I would say so.

Senator STEELE-JOHN: Alright. Fantastic. Thank you.

CHAIR: We've touched on issues around diagnosis. It seems to me now, particularly Professor]]> öffentliche Mitteilungen Wed, 06 Feb 2019 11:51:34 +0100