Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697630389005.pdf (Australia)
Submission to The Senate Inquiry into Thalidomide and I suffer from a number of significant health My name is problems.

The major defect caused by Thalidomide is phyocomelia of the upper limbs.

My most prominent health problem is a severe chronic pain condition secondary to severe spinal scoliosis which has required four major surgeries (1974, 1976, 2005 and 2007).

It has been postulated that this spinal condition was the result of Thalidomide.
In addition arthritis has been diagnosed in my right knee and there is significant arthritic deterioration of the cervical spine, specifically the C3 to C6 vertebrae.

My chronic pain condition is treated by the use of pain killers (Oxycontin 15mg BD and Endone PRN) combined with stretching exercises, hydrotherapy, massage, chiropractic sessions and rest when needed.

At the beginning of 2016 I was diagnosed as having a large oesophageal diverticulum and giant bulla of the lower lobe of the right lung.
I had surgery to rectify the diverticulum in January 2017.

Figure 1.

Picture of showing the extent of deformities to my upper limbs.

I have also been diagnosed with clinical depression and have been under pharmacological treatment (Prozac) by a GP for many years post treatment by a Psychiatrist.

As a trained Psychologist I also engage in a number of cognitive behaviours as a means of managing my psychological and pain states.
Am am currently seeing a Clinical Psychologist monthly to work through my psychological issues.

Like other Thalidomiders I am often anxious about my future physical health and am also concerned about my future financial position.

and at three days of age I bled profusely from the mouth and I was born on anus when being fed by my mother.

Fortunately, the medical staff at the hospital were able to stop this bleeding.
During my first 6 months of life I was continually sick and I understand I was at or slightly below my birth-weight at 4 months of age.

I also had problems learning Support for Australia’s thalidomide survivorsSubmission 50 to walk and suffered many falls, the most severe causing a severe laceration above my left eye requiring three stitches.

Figure 2.

Picture of which has safety implications from airbag.

Of greater risk is risk of injury to knees being close to lower regions of the car dash.
in driving position.

Note closeness to steering wheel Bullying and staring by others was a constant during my school years although the level and severity changed throughout the course of my school career.

The issue of staring has been incessant my whole life and continues to this day.

I have noticed that as I age that the stares are more often unfriendly and have a look of disdain about them.
That is not to say all looks from others are negative, just that their number has seemed to increase as I move into my later middle age.

What I can say is that I always attract the stares of others wherever I go.

This can become highly aggravating and at times unfortunately elicits a negative response from me towards the other person.

Figure 3.

Photo of which adds stress to his chronic back pain.

This is typical of most domestic activities.

packing dishwasher.
packing dishwasher.

Of importance is degree of bending required Support for Australia’s thalidomide survivorsSubmission 50 Figure 4.

X-ray of stabilise the spine.

These operations have led to a severe chronic pain condition.

lower spine showing extent of scoliosis and surgical interventions to One of my worst experiences of bullying was being “pissed on” by a drunk patron in the toilets at the Beaches Hotel whilst his drunk mate looked on and laughed.

I was so shocked I didn’t know what to do or say.


Fortunately, such extreme instances of abuse have been few.

Most bullying has been directed at how I look and it was often the intention of the individual to make fun of me rather than cause physical harm.

My deformities have had a major impact on most aspects of my life and have impacted on areas such as personal relationships, potential careers, and activities of daily living and personal hygiene.
The formation of intimate relationships with women was a major issue for me for many years and was a real psychological issue during my late teens and early 20’s.

Dressing and personal hygiene have always been activities that have been difficult or impossible to perform in a normal fashion.

The largest impact my physical state has had on me has been my need to retire on medical grounds from my academic career as a University Lecturer in 2009.
Following my 3rd and 4th major spinal surgeries in 2005 and 2007 respectively, my chronic pain condition reached a state that it made work an impossibility for me.

I had reached the stage where I was either at work or at home in bed resting for the next work day.

I had no life outside the workplace and my home life began to suffer dramatically.

In addition, my pain levels had impacted on my cognitive capacities and ability to concentrate.
Leaving work was a psychological blow as well as a significant financial one.

Currently my health is OK but in mid-2016 I was diagnosed with a large esophageal diverticulum which was surgically repaired in January 2017.

In addition a myotomy and anterior fundoplication was carried out to ensure that they condition did not reoccur.

As Support for Australia’s thalidomide survivorsSubmission 50 part of the preoperative process a giant bullae was found in the lower lobe of my right lung.
After seeing a lung specialist it was noted I have slightly reduced lung function.

As a result of these health problems I have increasingly become incapable of engaging in maintenance activities around the house.

I pay a private contractor for garden and home maintenance and mowing.

In addition we pay to have our pool cleaned monthly by a local contractor.

Indeed, it has reached the stage where most physical tasks required for home maintenance are beyond my capabilities and paid assistance is required.
Engaging in domestic activities has also become problematic with increased difficulty mopping and vacuuming due to my spinal condition which is exacerbated by my short arms.

We have been able to obtain some assistance from the NDIS which provides 6 hours of domestic assistance every month.

My greatest fears revolve around my future financial security and my physical health.

I have noticed recently that driving causes pain in my spine and neck.
I am also finding it increasingly difficult to walk and I am unable to walk any great distance without pain.

My fears are that I will be unable to drive or walk unaided in the future.

With increasing health issues comes the spectre of increasing expenditure on health related items and treatment.
With a fixed income from my UniSuper Disability Pension and the Diageo ex-gratia payments ceasing in 9 years my biggest fear is not having the finances to pay for all the assistance about the home, any needed future medical treatment or possible modifications to my car or home.

Addressing the Specific Terms of Reference.

a) Adequacy of Compensation and Support: I fully acknowledge that the Ex-Gratia payments from Diageo have been of tremendous help in providing financial stability since 2010.
However, these payments will cease in 9 years’ time, just when most of the original Thalidomiders will reach retirement age.

Consequently many people will find themselves financially vulnerable at a time just when their medical and support needs will be increasing.

In addition their partners will also be aging and will have difficulty in providing the level of support they have in the past.
Therefore, financial support that replaces the Diageo payments would ensure the continuation of adequate support and allow the Thalidomiders the ability to stay in their own homes rather than be required to move into a care facility.

b) Responsibility for Providing Support: There is a clear moral responsibility for the Australian Government to provide some financial support to the remaining Australian Thalidomiders.
As shown in Appendix C other governments have provided financial support for their Thalidomiders, one of the most recent being the Canadian Government.

The Australian Government in the late 1950’s, early 1960’s allowed Thalidomide to be sold and used by pregnant women without adequate assessment of its potential dangers.
Whilst it may be argued that adequate checks were not developed at the time there is ample Support for Australia’s thalidomide survivorsSubmission 50 evidence to suggest that Grunenthal, the makers of Thalidomide, were well aware of it tetrogenic effects well before it was allowed into Australia.

Thus, the Australian Government of the day could have pursued the parent company for all clinical trials associated with the drug.
c) Provision of Financial Compensation: As already mentioned minimal financial support has been provided by Diageo to the Australian Thalidomiders but this is not compensation in the true legal meaning.

In addition, this support will cease in about 9 years and as a result will leave the original Thalidomiders in a precarious financial position.

This is one of the reasons we ask for financial assistance from the Australian Government.
It has been suggested that the NDIS be used to overcome some of the burdens associated with medical expenses but a personal experience may provide a reason why this is problematic.

I have been waiting approximately 12 – 15 months to replace a Bidet that was installed under a previous NSW Disability Care regime.

The bidet is an essential item for providing personal hygiene.

All I wanted from the NDIS was to provide funding for a replacement.
However the process required an initial evaluation by Occupational Therapists of my need for the bidet, despite it having been recommended by OT’s several years before.

It took several months for the OT report to be written and submitted and several months before a quote for supply and installation was provided to the NDIA.

As of this moment I have no idea where the process is up to and all the while I must put up with a dirty bottom as I am unable to clean myself properly.
This upsets me greatly as if I had a lump sum funding I could simply purchase and have the bidet installed in a much shorter period of time.

d) The Role of the Australian Government in Compensation and Support: I have included in Appendix C a brief summary of financial support other governments have provided their Thalidomide survivors.
I am confident that the Thalidomide Group Australia have provided sufficient documentation to show the role the Australian Government can play in providing financial support for the Australian Thalidomiders.

e) Any Related Matters: There are numerous other examples of how Thalidomide has impacted on my life and the lives of my family members, but that would be too expansive for this submission.
It is hoped that I will be able to attend the Inquiry in person to elaborate on the points made in this submission.

Support for Australia’s thalidomide survivorsSubmission 50 Appendix A Final Report into the Current Health Status of Australian and New Zealand Thalidomiders.
By Dr. Mark C. Chorlton School of Psychology, The University of Newcastle, Australia In June 2013 it was decided that the physical and psychological status of the Australian and New Zealand Thalidomide members of TAI should be assessed.

In order to achieve this the SF-36, a standardized health assessment checklist, was emailed to all members of TAI and Thalidomiders encouraged to complete the checklist and return to Dr. Mark Chorlton for scoring and compiling.
The advantage of using the SF-36 beyond it standardization is the fact that it has been widely used in health research throughout the world.

In addition there are numerous normative databases against which sample data can be compared.

The SF-36 is a multi-purpose, short-form health survey with only 36 questions.

It yields an 8- scale profile of functional health and well-being scores as well as psychometrically-based physical and mental health summary measures and a preference-based health utility index.
It is a generic measure, as opposed to one that targets a specific age, disease, or treatment group.

Accordingly, the SF-36 has proven useful in surveys of general and specific populations, comparing the relative burden of diseases, and in differentiating the health benefits produced by a wide range of different treatments (Ware, 2001).

Currently 15 Thalidomiders have returned completed forms.

Eight of those have been from female Thalidomiders.
Not all respondents included their age so it is impossible to calculate an average age for the group, however the ages for those recorded ranged from 50 to 52 years of age.

The data were then entered into an excel worksheet, scored according to the approved method and the data averaged to produce the data for the eight subscales that appear in Table 1.

Table 1.

Means, standard deviations (SD) and standard errors (SE) for the 8 subscales of the SF-36 for the TAI Thalidomider group.
PhysFnc RolePhys Pain GenHlth Vitality 40.56 28.33 6.68 12.50 26.08 6.15 35.97 21.15 4.98 33.06 18.88 4.45 42.22 22.90 5.40 SocFn c 44.44 25.45 6.00 RoleEmot EmotWbng 44.44 41.22 9.72 67.78 15.25 3.59 Mean SD SE The eight subscales of the SF-36 are Physical Functioning, Role Physical, Bodily Pain, General Health, Vitality, Social Functioning, Role Emotional and Emotional Wellbeing.

Higher scores on the subscales indicate better outcomes.
For example a score of 85 on Bodily Pain would indicate minimal bodily pain whilst a score of 30 would indicate a high level of bodily pain.

It is evident from the data presented in Table 1 that all subscales bar Emotional Wellbeing are below 50 for the Thalidomiders indicating that they as are group have significant physical and psychological impairments as measured by the SF-36.
Support for Australia’s thalidomide survivorsSubmission 50 For example, the score of 12.50 (sd 26.08) on the subscale of Role Physical indicates that Thalidomiders find that their physical disabilities impact on the physical functioning to a major degree.

It is also clear that pain is a major problem for the Thalidomiders with a score of 35.97 (sd 21.15) indicating a high level of physical pain in the sample as a whole.
The physical health summary score for the group is 30.52 indicating a very significant level of physical impairment for the group.

When considering the mental health subscales of the SF-36 it is evident that the impairments experienced by the Thalidomiders are less than the physical impairments.

The lowest score is 42.22 (sd 22.90) on the subscale Vitality whilst the highest is 67.78 (sd 15.25) on the subscale Emotional Wellbeing.

The overall summary mental health score for the group is 49.72.
The findings, particularly the latter two, indicate that the Thalidomiders are less impaired by their psychological and social states than they are by their physical state.

A major advantage of using the SF-36 is the fact that numerous studies have utilised the form to assess the health of various clinical groups as well as the general population.

This allows us to compare the results for the Thalidomiders against other clinical groups and against the Australian general population.
When we look at the data for the general Australian population and compare it to the Thalidomide group we find that the Thalidomiders have lower scores on all eight subscales compared to their age-matched peers (see Figure 1).
PhysFnc RolePhys Pain GenHlth Vitality SocFnc RoleEmot EmotWbng Figure 1.
Plot of average subscale scores with standard errors for the TAI Thalidomide group (blue plot) compared to Australian normative data for 55-64 year olds (red plot), 75+ year olds (green plot) and UK Thalidomiders (purple plot).

It is quite clear that Thalidomiders not only have lower scores and therefore have greater levels of impairment than their age matched peers (55-64 year old normative data) but that their scores are even lower than the 75+ year olds.
This suggests that the impairments experienced by the Thalidomiders are greater than those experienced by 75 year old Australians in the general population.

This difference in capacity is most clearly evident for the Role Physical subscale.

Support for Australia’s thalidomide survivorsSubmission 50 Statistical analyses were conducted on the data to determine if there were significant differences between the TAI Thalidomider respondents and the Australian normative data.
One sample t-tests were conducted for all analyses.

When compared with the 55-64 year old normative data there were highly significant differences on all subscales other than Emotional Wellbeing, which was only marginally significant.

Comparison with the 65-74 year old normative data showed significant differences between all subscales with a marginally significant difference for Emotional Wellbeing.

For the 75+ year old normative data analyses showed a non-significant difference for Physical Function.
There were significant differences for all other subscales.

What the statistical analyses show is that there are significant differences between the Australian and New Zealand Thalidomiders and the age matched Australian population.

Further, these differences are maintained when compared with the 65-74 year old population.

It is only when compared against the 75+ year old population that similarities in functioning become apparent.
It is also useful to compare the Australian Thalidomiders with the UK Thalidomiders.

The physical and psychological health of the UK Thalidomiders was assessed in 2012 using the SF-12 which makes it possible for a direct comparison between the two groups to be made.

Like the Australian Thalidomiders, the UK Thalidomiders have scores in all subscales well below the age matched norms and the 75+ year group.
It is worth noting that the UK group has lower scores on all subscales other than Role Physical and General Health subscales.

Statistical analysis shows that there were non-significant differences on the Pain, General Health, Vitality and Role Emotional subscales, whilst Social Functioning was marginally significant.

There were clearly significant differences on the Physical Functioning, Role Physical and Emotional Wellbeing subscales.
It is worth noting that the UK Thalidomiders were significantly worse off on the Physical Functioning and Emotional Wellbeing than the Australian and New Zealand Thalidomiders.

The UK Thalidomiders had a significantly higher score on the Role Physical subscale.

In summary, the data obtained from the 17 Australian and New Zealand Thalidomiders show clearly that they are experiencing significant, and severe physical impairments as a result of their physical disabilities.
In comparison to their age-matched Australian compatriots they are significantly worse off on all dimensions as measured by the SF-36.

The data also shows that the Thalidomiders are more impaired, particularly in the physical dimension, than 65-74 year old, and indeed 75+ year old, Australians.

What this means is that the care needs of the Thalidomiders is commensurate with older Australians who have more than likely retired from full-time work.
It is also worth noting that the condition of the Australian and New Zealand Thalidomiders, as measured by the SF-36, is similar to that of the UK Thalidomiders.

It is clear that with regard to Pain, General Health, Vitality and Role Emotional subscales there are no differences in impairment between the two groups.

What is interesting to note is the significantly worse Emotional Wellbeing scores of the UK group.
On this subscale the Australian and New Zealand Thalidomiders are similar to the other Australian norm groups, however the UK Thalidomiders exhibit a significantly lower score indicating a major problem with respect to their psychological state.

Support for Australia’s thalidomide survivorsSubmission 50 Appendix B.
Current Health Needs of Thalidomiders The following document is based in part on the reports of the UK Thalidomide Trust for UK Thalidomiders and the Heidelberg University report into the health needs of European Thalidomiders.

In addition the personal experiences and knowledge of other Australian Thalidomiders by the author forms the remaining basis of this document.
The Heidelberg report assessed 900 Thalidomiders from the German-speaking world whilst the UK report was confined to Thalidomiders from the UK who are eligible to receive funds from the UK Government Health Grant.

This report will present the findings from each of these studies separately and then attempt to extrapolate their findings to the Australian cohort of Thalidomiders.

UK Thalidomide Health Grant Final Report 2012 There are 472 Thalidomiders alive in the UK today.
The variety of impairments includes missing, short and/or deformed limbs, damage to eyes and ears, facial disfigurement, and internal organ damage.

A small number suffer from brain damage.

In March 2010 the UK Department of Health made a grant of £20 million to UK Thalidomiders.

The grant is intended to help Thalidomide-impaired people to address the exceptional health and health related needs they are experiencing as they grow older.
A set of health related needs was developed which were intended to guide Thalidomiders in their expenditure.

These are - Independent Mobility; Home Adaptations; Communications Technology; Medical Treatment Costs; Respite; Personal Assistance; and Social Activities.

One of the most common comments from Thalidomiders who were assessed is that they feel that the rate at which their bodies are ageing is more rapid than that of the general population.
Thalidomide-impaired people generally feel that the rate at which their bodies are aging or the health problems they are experiencing are disproportionate to their chronological age.
This view was supported by the results of the Health Related Quality of Life survey (SF12) which suggest that Thalidomide-impaired people do experience significantly poorer physical health, especially in relation to physical functioning and pain, compared to the general population and also compared to people with Multiple Sclerosis.

However, overall their mental health is only marginally worse than the general population.

Table 1.
Table 1.

SF12 results for the Thalidomide group versus the general population and 1 year progressive disease Multiple Sclerosis groups.

Lower scores indicate a poorer result.

Population General Pop.

Multiple Sclerosis Thalidomide Physical Health Mean 50.00 41.80 24.60 S.D.

10.00 10.20 13.50 Mental Health Mean 50.00 48.10 43.80 S.D.
10.00 7.80 11.70 Support for Australia’s thalidomide survivorsSubmission 50 It is important to keep in mind that the physical problems experienced may be a direct result of damage caused by Thalidomide or it may be a result of the way in which people use their bodies to compensate for their physical deformities.

Chronic pain has become a major problem for many Thalidomiders as well as muscle weakness, peripheral nerve pain in limbs; numbness and some have partial paralysis.
Weight gain has also been noted as a problem and this produces additional problems related to personal care and independence.

Table 2.

Summary of identified health concerns for the UK Thalidomide Group.
Health Problems Chronic Pain Sensory Impairment Dental Problems Mental Health Fatigue Weight Gain Medical Complications Major Symptoms Joints, neck, shoulders or back pain Hearing, sight, numbness in limbs or "pins and needles" in periphery Damage to teeth due to need to use mouth pieces to aid communication Depression and anxiety plus irritability and anger Easily tired and require significant rest periods Limited capacity to exercise has resulted in weight gain Treatment for non-Thalidomide health problems exacerbated by Thalidomide damage Perhaps the final point to note is one that sets the Health Grant in the much wider context of the Thalidomide story.
There is a strong sense within the Thalidomide community that the Health Grant is not only about recognising the exceptional health problems Thalidomide-impaired people are experiencing as they age, it is also about achieving social justice for the damage they suffered, and enabling them to live a ‘normal life’ in spite of this.

Its continuation is for many Thalidomide-impaired people a concrete acknowledgement of this.

Heidelberg University Report Into Health Needs of European Thalidomiders.
The Heidelberg report provides findings from 900 Thalidomiders residing in the German- speaking world.

It includes data from questionnaires as well as face to face interviews and group discussions.

One of the most important findings of this report is the finding that approximately 70% of respondents have experienced significant secondary damage to their bodies as a result of using their bodies in ways they were not designed for in an effort to compensate for missing limbs.
The Heidelberg report examined if there were significant increases in the number of people reporting secondary damage in various body regions over a five year period.

The data indicated that significant increases in the number of people reporting secondary damage had occurred over the five year period of the study.

Indeed, most of the bodily regions assessed showed significant deterioration over the five year period.
The deterioration in bodily function has significant implications for the continued independence of many Thalidomiders.

Activities of daily living that once could be Support for Australia’s thalidomide survivorsSubmission 50 undertaken now become increasingly difficult and in some cases now require assistance to complete.

Chronic pain has become a major issue for the Thalidomiders assessed by the Heidelberg group.

84.7% of those assessed reported suffering from chronic pain.
It is worthwhile noting that pain appears to impact on females more so than for males.

One of the major implications of this finding are that physical therapies, such as physiotherapy and massage, which have been shown to alleviate pain are seldom funded to the extent that they can be used on a regular basis in an effort to manage the pain without resorting to medication.

It is also worth noting that chronic pain has become a major reason why many Thalidomiders have had to cease full-time employment.
Psychologically the Heidelberg report indicated that episodes of depression were more common than that exhibited in an aged matched normal population (11.3% vs. 8.1% respectively).

In addition anxiety about the future was identified as a major issue.

62.5% of Thalidomiders supported the statement “I feel anxiety when I think about my future”.

Thalidomiders anxieties appeared to be centred on loss of mobility, loss of independence, medical complications, and deterioration of physical abilities.
Australian Thalidomiders Health: Anecdotal Evidence The author has had the privilege to know a number of Thalidomiders over many years.

In recent times this has been aided by the meetings held by Thalidomide Australia Inc. (TAI).

From these meetings the author has been able to discuss the present health concerns of a significant proportion of the Australian Thalidomide cohort.
As identified by the UK and Heidelberg reports, Australian Thalidomiders have noticed deterioration in their physical condition, particularly over the last 5 to 10 years.

One of the major problems identified is an increase in pain.

Pain has been experienced in a wide variety of areas and these can include the upper and lower back, the feet, calves, thighs, buttocks, groin, hips, shoulders and neck.
In addition to muscular pain many Thalidomiders experience nerve pain due to constriction of nerve pathways in the neck and spine.

The former often produces headaches which can be quite debilitating in their extent, whilst the latter result in referred pain, often to the lower legs and feet, or hands and lower arms.

Sensory deficits are also a problem for Australian Thalidomiders.

Several experience partial or complete hearing loss and several also experience visual problems.
In addition several have begun to develop facial neuralgia.

As indicated by the UK and European Thalidomiders, the Australian cohort also believes that their bodies are wearing out more rapidly than aged matched “normals”.

This is due mainly to the overuse of joints and muscles in order to compensate for shortened or missing limbs.

Many are developing arthritis in the knee, shoulder and hip joints and the expectation is for this disorder to further deteriorate the joints functioning over time.
A number of Thalidomiders admit to being “tired” of coping with their disabilities.

This psychological state can last for a significant period of time and may develop into clinical depression in some cases.

Anxiety about their future health and financial security is also a major concern to the Australian Thalidomiders.

Support for Australia’s thalidomide survivorsSubmission 50 Personal Health: The author suffers from a number of significant health problems.
The major defect caused by Thalidomide is phocomelia of the upper limbs.

The most prominent health problem is a severe chronic pain condition secondary to severe spinal scoliosis which has required four major surgeries (1974, 1976, 2005 and 2007).

It has been postulated that this spinal condition was the result of Thalidomide.

In addition arthritis has been diagnosed in the authors’ right knee and there is significant deterioration of the cervical spine, specifically the C4 to C6 vertebrae.
The chronic pain condition is treated by the use of pain killers (Oxycontin) combined with stretching exercises, hydrotherapy, massage, chiropractic sessions and rest when needed.

The author also has been diagnosed with clinical depression and has been under pharmacological treatment (Prozac) by a GP for many years post treatment by a Psychiatrist.

As a trained Psychologist the author also engages in a number of cognitive behaviours as a means of managing his psychological and pain states.
Like other Thalidomiders the author is anxious about his future physical health and is also concerned about his future financial position.

Government and NGO Services Accessed: At present the author accesses a number of services provided by the Federal and State governments.

These include a partial Disability Support Pension, a carers allowance for my wife, and domestic assistance provided by Maitland Community Care Services.
In addition the author pays a private contractor for garden and home maintenance and mowing.

Indeed, it has reached the stage where most physical tasks required for home maintenance are beyond the capabilities of the author and paid assistance is required.

Report written by: Dr. Mark C. Chorlton B.A.

(Hons) Ph.D. References: UK Thalidomide Health Grant Final Report 2012 Heidelberg University Report Into The Health Needs of European Thalidomiders.
Support for Australia’s thalidomide survivorsSubmission 50 Appendix C. What have other governments done?

The governments of other countries have offered financial assistance to their Thalidomiders on several occasions over the last few decades.

In the UK the national government has provided the following financial support: In 1973 the Thalidomide Trust was set up to administer payments made by Distillers, who had distributed the Thalidomide drug in the UK, and the UK government.
Distillers (now Diageo), in 1973, agreed to pay £20 million sterling in compensation.

In 1974 the British government donated £5 million sterling to the Thalidomide Trust, which was an offset of tax on the original £20 million paid in by Distillers.

In 1996 the British government, without offering any particular reason, donated a further £7 million.
In 2005, Distillers agreed a complex new multi-year financial settlement estimated to cost in the order of £153 million as additional compensation for Thalidomide survivors.

The additional funding provided for covenant payments to be increased and for the payments to be extended from 2022 to 2037.

This was calculated on the basis of the money required to double beneficiary annual payments from 2004 levels by 2022.
UK Thalidomide survivors currently receive on average £20,000 sterling per year from the Thalidomide Trust.

On 14th January 2010, the British Health Minister, Mike O’Brien, confirmed a new £20 million support package, which had been announced during the month of December ’09.

The £20 million will be administered through the Thalidomide Trust.

If the £20 million was to be divided equally across all surviving Thalidomide survivors in the UK, each survivor would receive in the order of £43,000 sterling.
Norman Lamb, Care Services minister, said his focus was on offering “practical help”.

An evaluation of the £20m pilot scheme set up in 2009 had shown that thalidomide victims needed bespoke adaptations to their homes and cars which were more expensive because of the rarity of their injuries.

The compensation from the Government comes on top of payments from Diageo, successor to Distillers, the company that distributed thalidomide in the UK and elsewhere in Europe.
In Ireland the national government has provided the following assistance: In 1970 the German government set up a compensation scheme from which Irish Thalidomiders received financial support.

In detail Thalidomiders received the following.

1) A lump sum ranging between DM7,500 (IR£1,250 approximately) and DM25,000 (IR£4,200 approx), and (2) A monthly allowance for life ranging between DM100 (IR£17 approx) and DM450 (IR£75 approx).
Support for Australia’s thalidomide survivorsSubmission 50 In 1973 the Irish government as a matter of principal decided to significantly increase the German compensation scheme.

In addition to the German scheme the Irish government provided the following.

1) A lump sum ranging between IR£6,600 and IR£21,300, and 2) A monthly allowance for life ranging between IR£31.75 and IR£95.00.
The allowances, German and Irish, are tax-free, are not reckonable for State benefits and each of the Thalidomide survivors are the holders of medical cards.

In addition, a Thalidomide survivor can also claim disability allowance of approximately €849 per month or €10,192 per annum (2010 figures).

If disability allowance is added (€849 per month – 2010 figures) the total tax-free sum claimable by a Thalidomide survivor is €1,773 (least severe) or €3,381 (most severe) monthly i.e.
€21,280 or €40,568 annually (2010 figures).

The German federal government has provided the following: Chemie Grünenthal now known as Grünenthal, the German manufacturer of the drug, set up a €50m (£41m) fund for 3,000 thalidomide victims on the Continent, mostly in Germany, and unveiled a memorial last September when, for the first time, it expressed its “sincere regrets” and “deep sympathy” for those affected.

But it has never compensated the British victims.


On average, German survivors of Thalidomide receive the equivalent of £10,000 sterling a year from a foundation funded by Grünenthal and the government.

The Swedish, Danish and Norwegian governments provide the following: The governments of Sweden, Denmark and Norway operate a compensation scheme for Thalidomide survivors.
Sweden (107 survivors), Denmark (20 survivors) and Norway (17 survivors) The compensation is paid twice a year by the original Thalidomide drug distributor, AstraZeneca (formerly known as Astra).

The compensation payable by AstraZeneca is tax exempt.

The average yearly payment amounts to €6,000 whilst the highest is €20,000.

In 2010 AstraZeneca, increased the average annual payment to €9,000 whilst the highest annual payment increases to €30,000.
The Canadian Government provided the following: In 1991 Canada paid a once-off compensation sum of $9.7 million divided between approximately 125 Thalidomide survivors living in Canada.

Payments were based on 4 levels of disability.

Level 1 was two arms missing above the elbow and two legs above the knees missing.

Level 2 was two arms missing above the elbow OR two legs missing above the knees.

Level 3 was two arms missing below the elbow OR two legs missing below the knees.
Level 4 was one arm missing below the elbow or one leg missing below the knee.

Support for Australia’s thalidomide survivorsSubmission 50 The average payment was $80,000 Canadian dollars per survivor.

Money was also given for a staffed office for Canadian Thalidomide issues.

(TVAC) Recently the Canadian Parliament said “Yes” in an all-party vote to assist Canadian Thalidomiders.
The package Canadian Thalidomiders requested the following financial assistance from their federal government: $250,000 CDN tax free lump sum each.

$75,000-125,000 tax free each per year depending on level of disability.

$500,000 lump sum every year into a trust like the Thalidomide Trust for accessibility aids.

Support for Australia’s thalidomide survivorsSubmission 50