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Thalidomide Voice – Who are we?
Until recently, the Thalidomide Trust had a National Advisory Council that advised the trustees on policy and fed back beneficiary concerns.
Following a governance review conducted by an external body, the trustees then decided that they no longer needed the NAC, despite the fact that we were elected by our fellow beneficiaries.
We decided to set up Thalidomide Voice as a way of continuing that representation and crucially, making sure that UK Thalidomide survivors have the resources that they need to live independently and with dignity.
Meet the Directors of Thalidomide Voice
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Mikey ArgyChair -
Rowland BarehamSecretary -
Nick DobrikCampaign Lead -
Geoff SpinkDirector -
Guy TweedyTreasurer
Mikey Argy – Chair
Mikey served on the NAC for 12 years. Keen for the Trust to become aware of the health of the beneficiaries of the Thalidomide Trust, and to find the right people to help with our exceptional needs, she helped to develop the Health Advisory Service / Health Link in the Trust.
This was the first time the Trust was able to respond to the health and medical needs of its beneficiaries. Serving three years as chair of NAC Health & Wellbeing Committee, and four years as NAC chair, Mikey showed that she could respond very quickly to the changing needs of the beneficiaries.
After the 2010 Diageo agreement, Firefly produced a health report which showed the massive changing needs in the thalidomide community. Mikey as NAC chair, and with others brought Diageo back to the table three years before the next negotiations were due, and brought forward the forecast payments for 2022 to 2014.
She also was instrumental in concluding the government Health Grant 2010, the renewal of the Health Grant in 2012, and the lifetime grant in 2021.
Rowland Bareham – Secretary
Rowland has been NAC Chair for five years out of the last seven. As NAC Chair at the time of the last two Diageo discussions, he was pleased that they led to the Capital Health Payment in 2017 and the Additional Lump Sum in 2023. He had contributed to many things whilst on the NAC, on behalf of the beneficiaries, including input to the Trust’s strategic planning process, and just to pick out two things from a long list; championing the introduction of the Beneficiary Feedback Survey; and being on the Exceptional Needs Fund working group. He is a current member of the Board of Trustees of The Thalidomide Society.
Nick Dobrik – Campaign Lead
Nick has, along with other members of the community, devoted himself to improving the lives of our fellow thalidomiders. Over the last 20 years I’ve been Chair of the NAC twice and Chair of the Finance Committee a number of times. The plan presented to Diageo by Guy Tweedy and myself in 2004 laid the foundation to ensure continuous support from Diageo. The two building blocks put in place to make sure that member incomes were forever guaranteed were periodic reviews of the Trust financial position to ensure that the funds were not dependent on the vagaries of the stock market and annual allocations directly correlated to the retail price index. In addition, the review was to take into account the changing needs of our community. As a consequence, each review has been accompanied by a lump sum payment. This must continue.
At the same time, myself and others ran an energetic campaign to get an annual health grant from the British Government. Importantly this assisted many thalidomide groups in other countries to their government to help them in a similar way. Moreover we keep a watchful eye over any health grant developments . For instance, the Thalidomide All Party Parliamentary Group organised a delegation to the Social Care Minister to advocate linking the Health Grant to the Consumer Price Index. Shortly afterwards the Government agreed to the linkage.
Our aim is always to make sure the financial needs of our community are met. The most effective advocate for our group are us. And therefore rest assured we’ll always work diligently for everybody.
Geoff Spink – Director
Geoff was the NAC chair until July 2023 and has served several terms in that office. Crucially, he was the chair at the time of the government granting tax exemption on distributions from the Trust, at the time of the enhanced covenant from Diageo in 2006, and in 2009/10 when the then Labour government awarded us the health grant on a provisional three-year basis. He’s also a past chair of trustees of the Thalidomide Society. He is a journalist, campaigner and public speaker.
Guy Tweedy – Treasurer
As the longest serving member of the NAC, I want to continue by devotion to achieving the best financial support for the Thalidomide community. I have been the budget holder for the NAC and part of the finance representation. Nick and myself have ensured that the foundations of our current financial package will meet our needs and I am committed to ensure that we reach our 60’s and beyond, there is sufficient to ensure each and everyone of us has comfortable life without financial worries.
I was the campaigner who gained the Blue Badge concession for upper arm disability, and I continue to assist with thalidomiders obtaining their blue badges.
I am always available to anyone of us who needs support or assistance with a problem. Indeed, there are still overseas communities such as the USA, who have received no support whatsoever and our knowledge and experience needs to be shared to assist them where we can.
As a trustee of Disability Action Yorkshire, this has enabled me to embrace a wider range of disability problems and given me an insight into another organisation’s approach and extensive knowledge and experience.
Thalidomide Voice will ensure that “there is nothing about us without us”.
What we do
Thalidomide Voice firmly maintains that the best people to speak on behalf of thalidomide Trust beneficiaries in the United Kingdom, as well as the Trust’s overseas beneficiaries, are the thalidomiders themselves. We do not believe that the best way to speak to funders like Diageo and the government is for Trust staff and trustees to speak for us, because they lack the direct lived experience that only thalidomiders have. It is, in any case, a principle of disability equality that disabled people speak for themselves whenever and however possible.
Our Objectives
- To represent the group with Diageo and press the case for periodic capital payments
- To engage in dialogue with the Thalidomide Trust regarding the support needs of beneficiaries
- To make sure that the Health Grant meets beneficiaries’ increasing health and social care costs
- To make sure that all parties responsible for the thalidomide disaster provide support to survivors
- To support international fellow thalidomide survivors in their campaigns, e.g. the United States Thalidomide Survivors
- To continue researching the origins of thalidomide
- To offer advocacy to other people and groups affected by medical disasters
- To ensure that there is a fitting legacy so the future generations can learn from the thalidomide catastrophe and can also benefit from the Ingenuity and resilience of the survivors
How can you help?
Join as a Supporter
As a beneficiary of the Thalidomide Trust, you can join us as a ‘supporter’
– the more beneficiaries who sign up, the stronger our voice will be. Please use the registration form and rest assured that your details will remain safe and confidential.
We have a privacy policy which you can read here. We will contact you once a year to confirm that you still wish to be represented by Thalidomide Voice.
Friends of Thalidomide Voice
If you are a friend or relative of a Thalidomide Trust beneficiary, you can become a ‘friend’ of Thalidomide Voice here. Again, we want as many people as possible to be involved.
If you are a thalidomide survivor who is not a beneficiary of the Thalidomide Trust, or if you have a professional or personal connection to thalidomide, please complete the form here to become a friend of Thalidomide Voice.
Media Contacts
For media enquiries, contact Geoff Spink on +44 7711 898787 or Mikey Argy on +44 7875 084320. Alternatively, you can contact us via email or our social media channels.
