A tribute to the work of Dr Martin W. Johnson B.D. PhD
The man who, until recently, was Director of the Thalidomide Trust retired from the job after 13 years. Since I operate by the maxim that it's pointless to become involved in anything unless one is able to make a difference, I feel compelled to set down some of Dr Martin Johnson's achievements because he has most definitely made a profound and positive impact upon the lives of thalidomide survivors, both in the UK and beyond.
My first contact with Martin was by email: that, in itself, would normally be unremarkable had it not been for the fact that the Thalidomide Trust had hitherto been undigitised. I was in-country Project Director in Rwanda for the BBC and Thomson Foundation and Martin immediately expressed interest in my work and said that we should catch up properly on one of my return visits to the UK.
Until his arrival, the management culture at the Thalidomide Trust could euphemistically be described as 'comfortable' or 'cosy'. It was established to distribute monies from Distillers and the Government to people born with impairments caused by the morning sickness drug, thalidomide following the 1973 settlement. Its first Director was a former RAF Group Captain and this seemed to set something of a pattern for the management of the organisation - Group Captain Gardener was assisted by Group Captain White and they in turn handed over to Neil Buckland, who shared neither their RAF pedigree nor their zeal for innovation.
In its first few years, the Trust engaged a team of social workers, organised ambitious group holidays for the then hormonal, teenage thalidomiders, opened a holiday hotel on Jersey and pioneered vehicle adaptations, so that every thalidomider who was capable of learning to drive would have their own vehicle and consequent independence.
However, these early years gave way to a period of stagnation - both intellectual and financial. Thalidomiders were settling down, marrying and buying their first homes. The social work team was dispensed with and the vehicle adaptations became a matter of routine upgrading and renewal. Haigh Moor - the Jersey holiday hotel - was underused, closed down and sold off. Though there was work to be done, the management at St Neots (where the Thalidomide Trust is headquartered) seemed more content to run a Rolls Royce cheque-writing service.
When I discovered that Dr Johnson was maintaining the honourable tradition of former RAF officers finding useful things to do, my immediate reaction was to assume that here was another example of the old boy network ready to don the tweed jacket and carpet slippers on the gentle descent into retirement. In short, somebody who would never rock the boat.
I should have learnt by now not to trust my assumptions: in his 13 years at the Trust, Martin has transformed our quality of life, our financial security - even, perhaps, our sense of who we are.
It should be stated from the outset that Martin may have been answerable to this or that line manager throughout his life, but he always served a higher purpose: "He only has one line manager and that's God," I once remarked to a fellow thalidomider.
Martin was and remains convinced that thalidomiders - those of us lucky enough to have survived and the tens of thousands who didn't - are the victims of a monumental injustice. As the director of a national charity - governed by a board of trustees that was then ultra cautious - his room for manoeuvre was heavily constrained.
Being the lateral thinker that he is, Martin set about assembling a team of thalidomiders that would front a campaign to improve the support that every thalidomider would eventually receive. Like an alchemist, he carefully combined the ingredients that would result in an extremely powerful compound.
He quickly identified Nick Dobrik as a maverick campaigner - someone whose grasp of economics and finance matched or surpassed that of the trustees; someone to whom politicians and senior corporate executives could speak on an equal basis.
Martin urged me to team up with Nick whose first utterance shocked me to the core: "Our Trust is going to run out of money," he told me. Setting aside my objections that our finance trustees would surely have been aware that there was a black hole in our finances, Nick patiently explained, by taking me through the figures, that the Trust fund was not sustainable for the lifetime of its beneficiaries.
He dared to think the unthinkable and say the unsayable. His first campaign was to persuade the then Iron Chancellor, Gordon Brown, that distributions from the Trust should not be subject to tax. He felt that it was morally abhorrent that compensation money for injury or disability should partly trickle back to the Treasury.
Of course, Nick couldn't do the campaign by himself and he was paired with Guy Tweedy - a bluff Yorkshireman with a talent for knocking down doors.
Having succeeded in getting the government to do a u-turn on the taxation issue, the next target was Diageo plc, the successor company to Distillers which had manufactured and distributed thalidomide in the UK and Commonwealth. After protracted negotiations, the company agreed to enhance its contribution to the Trust by more than £150m. In subsequent years, there would be further enhancements.
It was during the Diageo negotiations that Martin's strength as a moral as well as a strategic thinker came to the fore: Diageo had played with a slightly less than straight bat and had managed to produce a set of figures that Nick knew to be incorrect - "like comparing apples with pears" was how he described them.
At the time, Martin was in South Africa but was soon brought up to speed. He sent the Diageo Board a devastating fax that must have made them collectively think they'd had their collars felt by the Almighty. Without much further ado, the figures were hastily revised.
Having settled with Diageo, there was an ultimately unproductive spell trying to bring the German developers of thalidomide, Grünenthal, to book. The company never acknowledged its wrongdoing and certainly negotiated in bad faith. Throughout these negotiations, however, Martin painstakingly pointed out exactly how many people had been damaged by the company's negligence. Whether they liked it or not, he shamed them into silence but ultimately withdrawal from the negotiating table.
The next target was the British Government: it, after all, had accepted Grünenthal's assurances that the thalidomide drug was totally safe. It had not done due diligence in the way that Frances Kelsey at the American FDA had.
A carefully orchestrated campaign involving all of the Trust's beneficiaries was put together with Nick at the helm but with Martin providing the intellectual and evidential gravitas. Once a critical mass of MPs had agreed to assist the thalidomiders, negotiations were opened with the Department of Health.
Martin was pivotal in persuading the civil servants and Health Minister, Mike O'Brien, that a grant paid to the Thalidomide Trust could be distributed to beneficiaries using the Trust's existing and extremely sophisticated points system. This is an elaborate measure of comparative degrees of disability. Martin insisted that allowing beneficiaries unfettered access to their health grants would result in better outcomes than would have been the case if we had all had to apply for sums of money on a case-by-case basis, submitting evidence as to how and why proposed expenditure would constitute relief of disability or improved health.
Prior to the 2004 tax change, every piece of Trust expenditure by beneficiaries had to be justified if it was to be exempted from tax. This was a system loathed by beneficiaries and burdensome to the Trust's staff. Martin was adamant that reintroducing such a system would be wasteful, negative and counter-productive. Such was the force of his argument - backed by trustees and some of the sophisticated systems in operation at St Neots - that his arguments won the day.
The health grant was a three-year pilot, so the pressure was on to get it renewed - no mean feat set against a climate of austerity. Martin set about creating independent monitoring and evaluation that would convince politicians and civil servants that the money was being applied for the provision of much needed lifestyle improvements - adapted kitchens, ergonomic vehicles and so on.
Because of his attention to detail, thoroughness and intellectual rigour - not to mention a brilliantly orchestrated Westminster campaign by Nick and the rest of the team - the government announced in 2013 that the health grant would be renewed, this time for ten years! This provided much needed financial certainty for beneficiaries whose bodies were wearing out, who were contemplating retirement or semi-retirement and who needed to rethink their lifestyle.
Martin always maintained that the Trust had three potential resource pools on which it could draw: its trustees, its staff and its beneficiaries. His analysis was that, at the time of his arrival at St Neots, the beneficiaries were an almost untapped resource.
The legal document that established the Thalidomide Trust - the 'deed of trust' as it is known - provided for a 'National Advisory Council' which had originally consisted of parents of beneficiaries. Its role was and remains to advise the trustees. I served on the NAC for more than two decades during the fallow years of the 80s and 90s. It was little more than a talking shop and the trustees could ignore its recommendations or not as they saw fit.
Under Martin's stewardship, the NAC was transformed from lapdog to guard dog in very short order. I became the first elected chairman of the NAC and I worked with Martin to, as he put it, "put the lunatics in charge of the asylum". Holding an NAC seat became something meaningful, and not just because of the campaigns. We were now elected by the beneficiary community and were held accountable for our actions. We improved communications, set up sub-committees, gained observer status at trustees’ meetings and instigated a National Advisory Council Annual Congress (NACAC) - a yearly gathering of the UK thalidomide clan.
Martin was also keen to tap into the lived experience of beneficiaries to provide peer support and advocacy for those of us who got into difficulty. He set up a volunteer visitor network in order to pair beneficiaries with someone who would listen to their concerns, make recommendations and feed back to St Neots when it was deemed appropriate. He ensured that the volunteer visitors worked to the highest ethical standards, respected confidentiality and learned from each other. Each summer, the whole volunteer visitor team meets for three or four days to discuss progress and influence the Trust's policies and services.
From the very beginning, Martin made it his mission to visit all of the Trust's beneficiaries - a total of almost 500 people. Not only are we scattered throughout the UK, but some of us live as far afield as Australia, Thailand and the Philippines. The latter was where one William Burton languished in jail, having been convicted of drugs trafficking.
Following a visit to the Philippines by Martin, Guy Tweedy almost single-handedly launched a campaign to get Billy out of prison. By then, he had been locked up with rapists, gang leaders and murderers for the best part of 20 years. Having originally been sentenced to eight years, Billy saw his sentence increased to 20, then 30 and finally 40 years. Thanks to Guy and Martin, the British Embassy in Manila, the Foreign Office and the government of the Philippines were relentlessly lobbied until Billy received a presidential pardon and came home in 2012.
Martin's work with the Trust also had its repercussions for thalidomiders in other countries: our settlement was used as a benchmark for revising the support arrangements for thalidomiders who are compensated by the Conterganstiftung (mostly in Germany) and AstraZeneca in the Scandinavian countries.
He also conceived of an international network - not just of thalidomide survivors - but of all of those affected by congenital limb difference. Together with the Swedish FfdN, the Thalidomide Trust founded the European Dysmelia Reference Information Centre (EDRIC) which was registered as a non-profit organisation in Sweden in 2008. Martin's vision was that the incredible problem solving skills demonstrated by thalidomiders would be captured for the benefit of future generations of people born with limb disabilities. I'm proud to be the current Chairman of EDRIC - an organisation with 27 member organisations in 19 countries. What's more, I have managed to retain Martin as an adviser to the board.
Martin continues to worry away at the injustice issue: together with Professor Ray Stokes of Glasgow University and a brilliant German researcher called Tobias Arndt, Martin is writing a definitive history of the thalidomide drug and its effects. It promises to be as devastating as it is intellectually and historically rigorous. I dearly hope that the board of Grünenthal will each receive signed copies.
In spite of his divine connections, Martin, of course, has his faults. One might almost suggest that chief among them is that he is reluctant to acknowledge that he has any! However, he is a wonderful ally and, I'm sure, a formidable adversary. Compared with their position when he took up the directorship of the Trust, beneficiaries are something like four times better off - and that is in real terms.
So, if we look back on Martin's tenure, and ask ourselves whether he has made a difference, the answer is blindingly obvious. His successor has a new set of challenges, a fresh pair of eyes and will no doubt execute her functions in a very different way. Martin, though, is one act that I wouldn't like to have to follow.