Thalidomide Voice
Newsletter May 2024
Contents
- You Have Control
- Exploring the Labyrinth of Cabinet Committees
- The Accidental Investigator
- Riding the Financial Rapids
- Looking Back
You Have Control
Geoff Spink, Chair of Thalidomide Voice
I don't know about you, but I'm quite glad to see the back of our wet, dark winter. I have a particular reason for resenting the lack of sunshine and daylight: partly it affects my mood and partly it affects how I now like to spend my leisure time: in other words, flying.
I was introduced to the Aerobility charity when I was a journalist covering the disability beat for BBC News. Occasionally, I would attend an event at an airfield and they would give me a lift in a light aircraft, sometimes even a microlight! What a great charity, I thought, bringing the thrill of flying to people who had perhaps had a spinal injury or had been wounded in action in the armed forces. It never occurred to me that it could be for somebody like me.
Then, I saw a tweet from the charity advertising a short course on an online flight simulator with a qualified pilot. I figured that I couldn't do too much damage to myself or an aeroplane in cyberspace, so I signed up and had a brilliant time with a South African chap called Mark, a commercial pilot.
He realised that I had a bit of a bug for aviation, so he asked me why I didn't fly for real. When I explained that I was registered blind (quite apart from my upper limb impairments) his reaction was, “so what?”.
Aerobility actually had some flying scholarships on offer so I applied and I got one: five hours of flying were mine free of charge! Those five hours changed my life: leaving the ground was a bit like leaving all of your cares and certainly your impairments on the ground and soaring into the deep blue yonder. I come down from a flight buzzing with excitement, full of adrenaline and exhilaration. I won't ever be able to get my private pilot’s licence, quite rightly so you might think! But, Aerobility will allow me to keep flying with a qualified pilot so that I can improve my airmanship. I've taken off and landed, I can climb and descend, make turns and know how to recover from a stall; I know so much about the physics of aviation and how to read all those dials in the cockpit.
My family and friends very kindly bought me Aerobility vouchers for Christmas and my birthday so I'm still taking to the skies and promoting Aerobility at every opportunity.
We've got a treat for you in store this month: not only does Nick Dobrik explain how the Trust's history in the 70s and 80s almost led to a depletion of our funds, but Rowland Bareham – civil servant and vicar at large – looks into the labyrinthine world of cabinet committees. Angie Mason talks about her career and how she went from teaching to researching and investigating for the BBC and for us; and our friend from Germany, Monika Eisenberg-Geginat remembers with fondness the campaigns of the noughties and how they led to an improvement for anyone supported by the German equivalent of our Trust, the Conterganstiftung. There's also a date for your diaries: if you want to chat with us and each other we are having a zoom call next Wednesday, May 22 at 18:30 UK time. You can use this link to join.
I also want to dispel a silly rumour that seems to be doing the rounds: Thalidomide Voice does not and will not accept money from the Trust, the Government, Diageo or Grünenthal. We run the organisation from our own funds: in other words the directors put their hands in their own pockets and we run our light touch lean, mean operations using our own resources.
We hope to be talking to the Trust quite soon so it would be a great idea to hear from all of you about what sort of things we should be discussing. Maybe tell us on the zoom call?
Chocks away!
Exploring the Labyrinth of Cabinet Committees
Rowland Bareham, Secretary of Thalidomide Voice
Make sure you read the last paragraph!
At the head of His Majesty’s Government is the Cabinet which is the supreme decision-making body in government. The Cabinet deals with the major issues of the day and the government’s overall strategy. The Cabinet consists of 23 Cabinet ministers – most of whom oversee a government department, including the Prime Minister, Rishi Sunak and the Deputy Prime Minister, Oliver Dowden. Key departments are HM Treasury, Foreign Office, Home Office, and Defence led by Secretaries of State, Jeremy Hunt (Chancellor of the Exchequer), Lord Cameron, James Cleverly and Grant Shapps, respectively. As well as Cabinet members, there are others who attend Cabinet such as the Attorney General, and the Chief Whip.
Cabinet meets weekly (during parliamentary time) at No. 10. However, it would be burdensome if the Cabinet attempted to make decisions on all government business – the volume of decisions required is just too great. Much of the issues for decisions are delegated to one of the cabinet committees which are sub-committees of Cabinet; each committee consisting of a small number of ministers. Membership of the committees can and does include junior ministers too. Each committee will have a chair overseeing the committee’s work. Some committees are permanent standing ones and others are ad-hoc ones formed for a short period of time for a particular issue.
The committees are formed afresh whenever there is a change of Government. Whilst the numbers of committees have varied in recent governments, there has always been two committees, one for domestic and economic affairs and one for managing the legislation timetable in parliament. Details of the composition and terms of reference for the committees are published. For example, you will see that the Domestic and Economic Affairs committee is chaired by the Prime Minister with the Deputy Prime Minister, Chancellor of the Exchequer, Secretary of State for Levelling Up, Housing and Communities, and Chief Whip are members; with the terms of reference being ‘to consider matters relating to the economy and to home affairs’.
One use of the cabinet committee system is to resolve differences that arise between government departments. To give a fictitious example, one department (DHSC – health and social care) might want to bring in regulations about TV advertising for unhealthy products (fast food restaurant adverts might come to mind); another department (DCMS – culture, media and sport) might be concerned about this because of the potential impact on revenues for the major broadcaster, ITV, because the regulations could include breakfast TV cereal products (which has a lot of sugar). So, it will be for one of the committees to decide on such proposed regulations that satisfies both the Health and Media departments across government.
Another example issue might be about any regulations affecting housing rentals by the Department for Levelling up, Housing and Communities. You might think that this is relatively straightforward, but the Ministry of Defence is a large landlord of service accommodation for military personnel – so the ministers at MOD might have views differing those of the ministers for DLUHC on any newly proposed regulation concerning housing rentals.
Committees make decisions in one of two ways. For potentially contentious issues, there will be face-to-face meetings; and more routine issues are dealt with by correspondence. Committee correspondences are known as ‘write-rounds’ where one committee member wanting a cross-government decision will write to all the other members asking for views and it will be up to the committee’s chair to make a decision based on any views expressed – most of the time members will not have anything to say and so make nil-returns.
Lastly, of relevance to the beneficiary community, it is helpful to understand that the campaigning activities in Westminster helps to raise, amongst MPs (of which some will be ministers on committees) a good knowledge of thalidomide and its impact. So, whenever the topic of the Health Grant comes to a committee, most of the committee members will already have been gently (or not so gently) briefed by our Campaign Team members.
The Accidental Investigator
Angie Mason, Researcher for Thalidomide Voice
When I was a child growing up in Newcastle on Tyne, my world was shaped by BBC Radio. Early on it was the Light Programme on the ‘wireless’ with its popular music and then ‘Round the Horn’ with the outrageous, camp, Kenneth Williams. Whilst my parents’ TV set was never off, I was never switched on to telly. I just watched programmes such as ‘That Was the Week, That Was’.
I never really had an appetite to go into television. I wanted to be an academic, studying 18th Century French literature. I can’t remember why. But in one of those forks in the road, in my first proper job, after a short stint as a teacher, I ended up working for Independent Television and Radio. Then by a complete fluke, I was invited to join the Education Department of the BBC – without an interview! That was the start of decades of working for probably the best cultural institution in the world.
This is not a love letter to the BBC: I have seen it through good times and bad times. For example, in the 1980s if your show needed an anaconda, you could ring Props Department and ask for an anaconda. They would say ‘do you want a yellow or green or spotted one?’ Your choice would arrive the next day. On the other hand, when the John Birt reforms were introduced, it was cheaper to buy CDs for music to accompany your programme than order it on loan through the Gramophone Library.
Cut to few years later: I was producing arts programmes for BBC World Service. David Attenborough would review a book or TV programme on Natural History and deliver an impeccable piece without a script In 3 – 4 minutes flat and allow you the chance to cut it down to time. The late Tony Benn – an ex producer himself – used to ask for the duration of the slot, set his watch to the precise time and then stop. He did not want to be edited.
My career progression in the BBC was never planned – it just happened. One year I was making arts documentaries and enjoying meeting Colin Firth in the catering truck, eating fish and chips with him, dressed in his role as Mr Darcy in the BBC’s acclaimed version of ‘Pride and Prejudice’. A few years later, I was working with BBC’s investigative documentary programme, Panorama. This took me to Pakistan to follow the story of the Taliban moving into the Swat Valley and imposing a ban on girls’ education. And then, in another twist, I started making programmes for Panorama about the pharmaceutical industry. Following on one exposé, the drug was removed from the market within weeks.
Which brings me to my work on Thalidomide: I understand how Big Pharma works and can see that the story we have been told about the real origins of the drug may not be true. Who knows when we will get an investigation on the BBC about our findings?
Riding the Financial Rapids
Nick Dobrik, Campaign Lead for Thalidomide Voice
This is the first article of a series of three that I am going to write about our annual grants (called annual allocations prior to April 2005*). The first part covers the period from 1974 to the early 90s. The second part goes from the early 1990s to 2006. And the last article covers up to the present day and future developments of the annual grant.
In 1974, the Thalidomide Trust was set up to administer a fund totaling £20m that Distillers agreed to pay into a trust the previous year. The specific details of this settlement are very important to events that happened later on. Distillers agreed to make seven annual payments, from 1974 – 1980, of £2m per year. The remaining £6m was paid out as a capital fund to the individual thalidomiders.
The original agreement was that in the period 1974 – 1980, the payments would only be adjusted up to a maximum of 10% for inflation. This was disastrous for thalidomiders: the inflation rate was well above 10% for most of the period. This meant that by 1980, when the last payment was made, the real value of the fund was 17% lower in real terms than it should have been. The trustees at the time felt they had no legal basis in which this deficit could be redressed. So already the Trust was under-funded.
Understandably, the trustees took a very conservative view in terms of investment risk: this meant that the vast majority of the funds were used to purchase government bonds. Herein lies an inherent difficulty: as interest rates fluctuated during the 80s, the price of government bonds commensurately went up and down. The net result of these fluctuations in the price of bonds meant the value of them was falling over the period up to the 1990s, in real terms. This was reflected in the annual allocation in the sense it was a struggle to keep the benefits of beneficiaries in line with inflation rate.
Matters came to a head in 1993 when the trustees started to realise, under the present investment strategy, there was little chance that the monies would meet the needs of the thalidomiders for the whole of their lifetimes. In order to know exactly the true position of the state of the Trust funds in terms of future assets and liabilities, for the first time, an actuarial calculation was commissioned. The main assumption of the calculation was to see, under the condition that if the annual allocation was maintained in real terms, when would the fund run out of money. The shocking answer came back that by 2009 there would be nothing left: the Trust fund would have zero assets.
Arising from the actuarial calculations, there were two major consequences: firstly the realisation that the investment strategy would need to change and be more equity (stocks and shares) based. In order to do this, obviously trustees with the right skills in that area would need to be recruited. Secondly, there was an imperative need to return to the original funders, Distillers, which metamorphosed into Guinness, for additional funds. The drama was about to begin.
[* Technical footnote] From April 2005, the Trust changed the terminology of ‘annual allocations’ to ‘annual grants’ because of required changes to get the tax exemption announced in 2004.
Looking Back
Monika Eisenbeg-Geginat, German Survivor and Campaigner
Contergan/Thalidomide pensions have been paid out in Germany since 1972 and officials never fail to emphasise that they have been increased 13 times since then.
From 1st July 2008, the amount was doubled: instead of €121 (minimum pension) and €545 (maximum pension) per month, survivors would receive €242 and €1090. It was said that the doubling of pensions was intended to mitigate against the effects of late and consequential damage.
The doubling of pensions for survivors in Germany was not invented by politicians in the Bundestag (parliament) but was demanded and hard-fought for by survivors in campaigns and demonstrations. The film ‘A Single Tablet’ helped to put the subject of thalidomide back into the public eye. The time was more than ripe to draw attention to our plight because of ageing and our deteriorating health.
Of course the doubling of thalidomide pensions was not enough to compensate for the long-term effects and so the survivors continued to demonstrate and negotiate. An international alliance of survivors showed a great deal of creativity and solidarity in actions and demonstrations. All of the survivors from Germany, Canada, Italy, Austria, the UK, Ireland, Spain, Belgium, Sweden, Denmark and Norway wanted to improve their lives.
Many demonstrations took place in London and a few in Berlin. Survivors from many countries took part in the actions. Everyone, really every survivor and the families of survivors could take part in actions and the diversity of opinions and experiences enlivened the many events.
I thought it was really important that survivors and their families had this opportunity because every single one of us, no matter where we come from, brings a story with us. These stories full of emotions and experiences need space to be told and honoured.
Then it was important that we survivors could stand up for our interests. Because many decisions had often been made about us but usually without us.
The actions at that time were an important impetus to improve our situation. We drew attention to our challenges and we spoke for ourselves. Negotiations took place in Germany with the Federal governments of the time and the Conterganstiftungsgesetz (covenant) was amended again and the situation for us survivors changed in 2013.
From January 2013 the financial benefits in Germany were multiplied and there are now benefits for specific needs. Justice, dignity and respect in dealing with each individual survivor is still important today.
We should always keep our focus on the source of our damage and on those who caused it.