Australian Senate Community Affairs References Committee - Support for Australia's thalidomide survivors inquiry A submission by Elizabeth ...

 
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Support for Australia’s thalidomide survivors
                                              Submission 63

    Australian Senate Community Affairs References Committee - Support for Australia’s
                             thalidomide survivors inquiry

      A submission by Elizabeth Newbronner, Research Fellow, University of York, UK

1. Introduction

I am currently a Research Fellow and final year (part-time) PhD student in the Department of
Health Sciences at the University of York UK. My doctoral research focuses on the health of
UK Thalidomide survivors as they age. This includes the Thalidomide related health problems
they are experiencing; how these are affecting their health related quality of life and
independence; and the lessons that can be learnt from the experiences of Thalidomide
survivors about ageing with rare and lifelong impairments.

Prior to taking up my Research Fellow post, I ran Firefly Research, an independent research
company which conducted a number of studies for the UK Thalidomide Trust. In 2016 I wrote
the report Changing Lives - The Health and Wellbeing of Thalidomide Survivors in Middle Age.
I am aware that the Committee has already seen this report, and that it is referred to in the
submission to the inquiry made by the UK Thalidomiders Campaign Team. In my submission I
have therefore drawn more broadly on the findings from my doctoral research, which builds on
the 2015 Health and Wellbeing Survey results described in the Changing Lives report, and
includes interviews with a cross section of UK Thalidomide survivors. By highlighting the
experience of UK Thalidomide survivors, I hope I can assist the inquiry in considering how
financial and practical support might be offered to Australian Thalidomide survivors in the
future.

2. Changing Health and Shifting Impairment

To fully appreciate the importance of financial and practical support for Thalidomiders survivors
at this point in their lives, it is necessary to understand how their health is declining and their
impairments are increasing. This has been detailed in a number of publications and so, for
brevity, in this section I present what I consider to be the most significant issues. Certainly, it is
clear from the literature about the health of Thalidomide survivors as they age1- and from my
own mixed-methods research - that while Thalidomide Embryopathy is non-progressive, the
consequences of it are not static. As Thalidomide survivors reach late middle age they are
experiencing changing health and shifting impairment.

Physical Health

The 2015 Health and Wellbeing Survey of UK Thalidomide survivors 2 clearly showed that they
are experiencing a range of health problems over and above their original damage.
Musculoskeletal problems (i.e. pain and/or loss of movement in joints, neck and back) were the
most common. Almost all (93%) of the survey respondents reported such problems and over
half had five or more different musculoskeletal problems. This is in addition to the decline in
physical health associated with ageing. Generalised pain, neurological symptoms (e.g. tingling
and numbness) and severe tiredness/fatigue were also major concerns. Nearly half the survey

1
  Newbronner E and Atkin K (2018). The Changing Health of Thalidomide Survivors are they age: a scoping review.
Disability and Health Journal, 11,184-191.
2
  Newbronner et al (2019). The Health and Quality of Life of Thalidomide Survivors as they Age – Evidence from a
UK Survey. PLOS ONE (in press – due for publication 16 January 2019).

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respondents said they had deteriorating sight/eye problems, a third had deteriorating
hearing/other ear problems, and a similar proportion had dental health problems. Respondents
also reported a range of other health problems, with weight management, bowel and digestive
problems, bladder or continence problems and respiratory problems being the most common.
These health problems are often more difficult to manage or are exacerbated by Thalidomide
damage, as many Thalidomide survivors experience difficulties exercising and managing
weight, and obtaining accurate blood pressure and body mass index measurements in people
with limb difference is problematic. Multimorbidity or the presence of multiple diseases in one
individual is a growing concern, with a high proportion of Thalidomide survivors reporting
multiple health problems. Furthermore, for some Thalidomide survivors, the morbidity burden,
which includes the overall impact of several conditions on the individual’s ‘physiologic reserve’
and functioning, is significant, as the quotation below illustrates:

       “After having operations on both shoulders and left elbow the use of my arms and hand
       were considerably limited e.g. dressing, washing, cooking, and most basic household
       chores. Also having a mini stroke has made my balance a bit difficult. And then the
       cancer came along…” Steve

There appear to be three root causes of survivors’ Thalidomide related physical health
problems. The first is that some problems are directly linked to peoples’ original Thalidomide
damage. This encompasses both deterioration of known damage (e.g. in eye sight ) but also
the emergence of new damage (e.g. a missing kidney) or an increased understanding of the
extent of known damage (e.g. the nature of malformed joints). The second root cause is
accidents and injuries, where these have occurred as a consequence of existing impairments
(e.g. falls linked to mobility, balance or sight problems). The third, and perhaps the most
common root cause, is premature ‘wear and tear’ resulting from the ways in which people have
had to use their bodies to compensate for their original impairments. This consequential or
secondary damage means that many Thalidomide survivors are experiencing increasing levels
of impairment. For those people with more severe damage this is further restricting what they
can do for themselves.

       “My right foot is my useful foot where I have a lot of dexterity in the toes. It’s the one for
       picking up things, picking things up off the floor and putting them onto surfaces, in
       reach of my hands, and things like that. I use that foot for filling the washing machine,
       and taking the clothes out of the washing machine and things like that, so it’s actually
       now having quite a big effect on me. And because that leg is going bad, it’s affecting
       my balance and walking is not so good”. Liz

Amongst Thalidomide survivors whose original impairments are less severe, deterioration in
their function or mobility can engender a new or heightened sense of ‘being disabled’. They
are often experiencing quite major changes in their lives (e.g. in their ability to work or
difficulties in daily living) but sometimes lack advice and information about adaptations and
equipment that would help them.

Mental Health

Common mental health problem are far more prevalent amongst Thalidomide survivors than
the general UK population of a similar age. A Mood Survey of UK Thalidomide survivors,
carried out in 2018 by the University of York, showed that: 40% had sub clinical to mild
depression; 16% had moderate to severe depression; 23% had mild anxiety; and 25% had

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moderate to severe anxiety. My research suggests that there are two primary reasons for poor
mental health: the cumulative impact of living with a rare disability, and in particular the sense
of ‘being different’ which this engenders; and the emotional impact of further loss of function,
associated with secondary health problems. However, how these experiences affect people
and how they make sense of them, is influenced by both individual circumstances (e.g. family
responses or life events) and the wider societal context (such as access to care and support,
in addition to access to social networks, labour markets, housing and financial resources).

The emotional impact of loss of function appears to be more significant when it leads to
peoples’ lives becoming more limited or results in them giving up activities they enjoy, and
when it has knock on consequences on their family. Further, alongside the impact of current
changes in peoples’ lives, people speculate about the implication of further change in their
circumstances. There is a clear sense from some Thalidomide survivors that their current way
of life is fragile and uncertain. This makes them feel vulnerable, which in turn has a corrosive
effect on their mental wellbeing, as the quotation below illustrates:

       “It depresses you because you realise what you can’t do now. I wouldn’t go out
       shopping on my own because of the simple fact that I can’t lift and I’d be scared of
       falling because of my leg, when carrying things”. Angela

However, as I describe in section 5 below, the additional financial support provided by the
Health Grant has had a very positive impact on many Thalidomide survivors mental wellbeing.

       “Up until we got the Health Grant and the extra money to do things, depression was a
       big problem…The money has given me the opportunity to be able to do other things
       and not rely on household income. To be able to go out and do various activities to
       keep me occupied and interested in living a life…a worthwhile and purposeful life”.
       Sarah

3. Ageing Prematurely and Ageing Differently

As a consequence of declining health and increasing impairment, Thalidomide survivors’
experiences of ageing in late middle age are different to their non-disabled peers. For many
there is a sense that their bodies, and particularly their limbs, are ‘wearing out’. Most
commonly, they associate this with the way they have had to use their bodies to compensate
for their impairments. Others talk about their bodies in some way becoming weaker and less
resilient as they age. Thalidomide survivors have a strong perception that they are ageing
prematurely with many feeling that their bodies are older than their chronological age. This
sense of premature ageing has implications for peoples physical and emotional wellbeing, as
the quotation below illustrates:

       “I never even thought about it. Never even thought about it. I’ve been much more
       angry and frustrated over the last 2 years…it’s really curtailed what I’ve been able to
       do. When I was younger, I was fine. I was fit, I could do everything, I didn’t need any
       help…even just thinking into the future, and thinking, well maybe in 10 years’ time,
       when I’m 63, I’ll be like a bloomin’ 80-year-old and I will need help, and that makes me
       angry. You know, I want to not have it and be able to do everything I’ve always been
       able to do without any help.” Lesley

Importantly, not only are Thalidomide survivors ageing prematurely, they also ageing
differently. The combination of a rare condition and the fact that Thalidomide survivors are

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ageing as a cohort means that they do not have an older generation to look to and learn from.
Ageing is compounding their existing impairments and this has major practical implications as
one Thalidomider survivor explained:

       “In our old age who is going to make the specialist walking sticks? These are all the
       things that older people use to maintain their mobility. We are going to need a whole lot
       of other stuff aren’t we? The average walking frame is not going to work for us”. Geoff

4. Preserving Function and Maintaining Independence

Loss of flexibility and mobility caused by shifting impairment has led many Thalidomide
survivors to try and preserve their functioning and maintain their independence in a variety of
ways. The approaches they choose are in part determined by the nature of their impairments
and associated physical needs but family circumstances, the acceptability of different
strategies (e.g. aids and adaptations versus personal assistance) and resources also play a
part.

Although many Thalidomide survivors, especially those with severe damage, have always had
help with daily living, often some or all of this help is provided by family members. Changing
family circumstances (e.g. loss of parents, children leaving home or the ill health of a partner)
and/or increasing impairment has meant that in order to preserve their function and maintain
their independence, more Thalidomide survivors are now having to buy in help with domestic
tasks and/or personal care. Accepting help in order to preserve function is also intertwined with
avoiding or reducing pain as this quotation shows:

       “Truthfully, I think there's a lot of us who are, are starting to turn round and have the
       attitude it's easier if somebody helps, it's easier if somebody does it; to a certain extent,
       it could possibly make you look a bit lazy, but being a bit lazy and pain free is, is a lot
       easier than being in pain.” David

However, home adaptation, greater use of aids and equipment and changes to daily routines
are also important in enabling people to reduce the strain on their bodies. Some adaptations
and equipment e.g. changes to kitchens and bathrooms, are extremely costly but the cost of
even minor adaptations and equipment, like changing door handles and locks or buying
dressing stations and sticks, can mount up.

Perhaps even more significantly, as the UK Health and Wellbeing survey showed, a significant
proportion of Thalidomide survivors see giving up work or reducing their working hours as one
of the most beneficial things they can do to preserve their function. For many people it is not
just the strain their actual job places on them, it is everything surrounding working, from getting
up and dressed, to travelling to work, to problems with unsympathetic employers. It is clear
that in the UK, the introduction of the Health Grant has been a factor in some Thalidomide
survivors deciding to give up work or reduce their working hours, in effect using their Health
Grant to offset loss of income. Importantly, many Thalidomide survivors see all these
adaptations and life changes as progressive – something that they will continually have to
revisit as their impairments shift and they age.

5. Importance of Money and Practical Support

The legal settlement with Distiller in 1974 led to the establishment of the Thalidomide Trust
and the payment of Annual (compensation) Grants to all UK Thalidomide survivors. For many

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years these payments were not substantial and many Thalidomide survivors struggled
financially. Payments were also subject to income tax, with Thalidomide survivors having to
submit receipts if they wished to claim tax relief on items that were related to their disability: a
system they found bureaucratic and patronising. It is only in the past two decades that UK
Thalidomide survivors’ financial situation has improved, and in particular since 2010 when the
UK Government made a pilot Health Grant of £26 million over three years, which was then
renewed for ten years from 2013. Individual beneficiaries are not required to account for their
Health Grant expenditure although a ‘guidance letter’ was agreed with the UK Departments of
Health. These changes have not only given Thalidomide survivors much needed resources,
they have also empowered them to use those resources in the ways that they judge will have
most benefit to them and their families.

My research suggests that having money matters, not only because of what it can buy but also
because of how it makes people feel. Having money creates a sense of security, and for
Thalidomide survivors this has a number of dimensions: the comfort of being able to afford
things that help them in the here and now; the reassurance of having ‘insurance’ to cover
unexpected events; and the confidence that if necessary, the resources are there to meet
changing needs. It also creates options and choices, particularly in relation to how best to
maintain independence or preserve function. This affects many areas of life from work and
health care, to home adaptations and personal care.

Money also matters in relation to how people look after their health and wellbeing. The
guidance agreed with the UK Departments of Health, stated that the Health Grant was not to
be used to meet needs already being met by the National Health Service. However, for many
Thalidomide survivors the NHS is not meeting their needs and so they are finding ways to self-
manage their health problems e.g. buying treatments such as physiotherapy, osteopathy and
massage privately but also paying privately to see specialist doctors with experience of treating
Thalidomide survivors. This has been helped by the UK Thalidomide Trust’s efforts to identify
specialists with an interest in Thalidomide. Interestingly, many UK Thalidomide survivors do
draw a distinction between their Annual Grant and general household income, and the Health
Grant. They clearly see the Health Grant money as being specifically for their health and
wellbeing and use it accordingly.

However, the extent to which money makes a difference is tempered by the high cost of living
with disability, the loss of income from paid work, and the fact that Thalidomide survivors are
still having to make trade-offs. There is a clear sense that people are having to make difficult
decisions about what adaptations are most important for their independence or function, when
they can afford to replace vehicles, wheelchairs and specialist equipment, and/or whether they
should buy in more help. Whilst such decision might be regarded as part of most peoples’
lives, they are brought into sharp focus when set in the context of the cost of living with
disability, and especially rare impairments. In the interviews I conducted people talked
frequently about the additional expenses they incurred in all aspects of life. This included
everyday expenses such as: the higher cost of routine home maintenance e.g. paying an
electrician to change a lightbulb or a fuse; and higher heating bills because of needing to keep
warm. The costs associated with home adaptation, adapted vehicles, and specialist equipment
were even more significant. Despite the Health Grant, many Thalidomide survivors are unable
to do all the things they feel are needed to preserve their function or maintain their
independence. It is also apparent that many feel their needs are continuing to change –
equipment that helped in the past is no longer adequate or further adaptations are needed.

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More generally, these additional costs need to be considered within the context of the
accumulative impact of disability on lifetime earnings and savings (including pensions).

7. Recommendations

•   If Thalidomide survivors are to ‘age well’, they need the financial resources to enabled
    them to maintain their independence, preserve their function and protect their mental
    wellbeing. In the UK, the introduction of the Health Grant has been a major step forward in
    giving people the income they need to do this.
•   Any additional financial support must be long term, so that it gives Thalidomide survivors a
    real sense of security, and allows them to address progressive changes in their needs
•   Importantly, Thalidomide survivors need the freedom to use these additional resources in
    the ways that they judge will have most benefit to them. The experience in the UK of the
    Health Grant has shown that not only do the vast majority of people use their Grants
    wisely, having the freedom to decide brings additional emotional benefits
•   Alongside financial resources, Thalidomide survivors also need advice about adaptations
    and equipment, and access to doctors and other healthcare professionals with the
    knowledge and experience to treat them appropriately.

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