Thalidomide Voice
Newsletter August 2025

Time for Change

Geoff Spink, Thalidomide Voice Director

Nothing stays the same forever – as people walking this earth and already in our seventh decades, we should all be aware of that, only too keenly.

Since retiring, I've had lots of calls on my time – some work type things which I can't quite let go, like the panel discussion I chaired for The Royal Society recently; some things like trusteeships and advisory roles which don't generate money but which hopefully make a difference both to me and the organisation that I'm trying to help; then there are personal things, family, travel, dogs, grandchildren, all of these things make demands on our time.

Until I stopped working full-time I didn't realise quite how brilliant my exceptional PA was: she kept me focused and on the straight and narrow; never a missed meeting or an unexpected commitment that hadn't been properly flagged and prepared for. Since doing all those things for myself, I realised that I actually have a bit of difficulty juggling the competing demands on my time, and although I love to say yes to everybody and everything, there just aren't enough hours in the day to meet every single commitment.

With that in mind, I've been reevaluating how I use my time and how I can make the most of my abilities and pursue my interests, for example flying. I told my board colleagues at Thalidomide Voice that I didn't feel I was giving the kind of leadership and direction that the organisation needs. Of course I'm not leaving the board, and I'm very happy to keep editing the newsletter and writing pamphlets, correspondence and so on so that we meet our objectives. But the day-to-day management of Thalidomide Voice needs to be done by somebody who dedicates themselves to doing their own work and overseeing the work of everyone else.

As an organisation we get stronger every day, so a sort of reshuffle of the board felt like a good idea anyway. Pending approval by the directors at our next meeting, Rowland Bareham, will assume the chairmanship, and I will take on a role looking after communications of various types. We also recently managed to recruit a new board member, Geraldine Freeman, who is known and loved by many in our community.

Gerry will have the awesome responsibility of helping to recruit new supporters, because – as I never tire of saying – together, we are stronger. Gerry has written a piece for this latest, August edition of the newsletter on why she decided to get involved. Nick Dobrik is taking a break from his economics explainers to remind us that we need to be very vigilant about what we have gained in order to safeguard it for the future. Our deputy chair, Mikey Argy, has written a companion piece for Nick’s to show you how you can get involved and get your friends and family involved in helping us to swell the ranks of MPs and peers who support us in our Thalidomide All-Party Parliamentary Group or APPG.

There were recently some questions raised at one of our regular zoom meetings about the Trust's policy on lasting powers of attorney or LPAs. Rowland has written a very good article on why the Trust has taken the steps that it has, and urging all of us whose affairs are not properly in order to crack on with it. Although I do have LPAs for both finance and health, they are badly in need of updating, so I am one of the many people at whom Rowland is politely pointing.

Attitudes to disability have changed so much over the years: think back to the days when we were children; disabled kids hidden away in Institutions or having medical interventions that weren't always in their interest. Now, we have a much more rights-based approach to disability and the United Nations Convention on the Rights of People with Disabilities enshrines the notion of 'nothing about us, without us'. This is something I've been banging on about for as long as I can remember. It underpins a lot of my concerns about recent changes at the Trust. One of our supporters in Northern Ireland, Sara Bunting, has written an excellent piece on why disability awareness training is such an important thing for any organisation, but especially organisations that work in the disability sector.

Please do share and enjoy this newsletter – and rest assured that whatever else changes, I will be back with another edition before too much longer.

Getting Involved

Geraldine Freeman, Thalidomide Voice Board Member

I decided to get more involved with Thalidomide Voice because I strongly believe in their cause and their aims. As a volunteer for The Trust I speak to a lot of beneficiaries and there are some amongst us who were slightly less physically affected than others but nonetheless as we age they are feeling the effects of their own impairment; sadly many were not awarded as well as they should’ve been, which is what I see TV trying to help with.

As we know there has been lots of changes in recent times we now don’t have a strong voice as such within the Trust. I know some within the NAC were not always very popular and seemed to take over and they were sometimes very misunderstood.

Let’s just stop and think what has been achieved so far. This fight for proper compensation that was so badly denied 50 plus years ago. The fight was started with others many years ago, but over the last 20 years has been continued; we no longer pay tax on income from the Trust; allocations have increased hugely in real terms; and we now have the Health Grant. Much of this has been the hard work of dedicated people who have wanted nothing more than to improve our lives; they still do.

But they need us all to be on board. I want to be the go between the beneficiaries and Thalidomide Voice: take your concerns or even your distrust in TV, and relay those concerns back to them.

I think many of you would already know that I care passionately about our community and want nothing but the best for everyone. Like it or not, those we have within the Voice are the best we could have to secure our future. I urge you to please come forward and lend your support; if you have any concerns or questions please speak up, either to myself or another member of the Board. How else will TV know what you want or your concerns if you don’t say?

They, we, want to know.

Facing Facts

Nick Dobrick, Thalidomide Voice Campaign Lead

This article is about a very important matter. It’s to do with our existing funding.

In a parliamentary question for the Department of Health and Social Care (DHSC) asked by Andrew Cooper MP on May 30th 2025, concerning the future Health Grant, the response from the minister responsible, Stephen Kinnock, was far from reassuring. He said ‘Funding beyond the current grant agreement will be subject to the outcome of future spending reviews’.

Stephen Kinnock seems to have forgotten the promise made by the then chancellor Rishi Sunak in the March 2021 budget, when talking about the thalidomiders’ Health Grant which stated:

“They deserve better than to have uncertainty about the future costs of their care, so not only will I extend this funding with an initial down payment of around £40m, I am announcing a lifetime commitment guaranteeing funding forever.”

In order to respond to Stephen Kinnock, the Campaign Team arranged a meeting with Andrew Cooper, and recruited him to the Thalidomide All Party Parliamentary Group (APPG), and he at once volunteered to go and speak with Stephen Kinnock, to remind him of the previous promise made by the government in 2021.

Also we made contact with Lord (David) Hunt, a member who has supported a thalidomider since 1973, and asked him to speak with Lord Kinnock, so he too could remind his son, Stephen Kinnock, about this promise by Rishi Sunak.

I mention all this because it shows the importance of having a strong Thalidomide APPG which can react quickly to any threat to our future resources, and as well helping to get additional funding.

This is even more pertinent when we received, very recently, the latest news about Diageo concerning the departure of the Chief Executive Officer Debbie Crew. Of course Diageo is a massively profitable company making around £4bn a year. What disappoints the market is that the company sales which were growing around 5% – 7% annually are now almost static. Stock markets do not value companies at a premium if sales and profits aren’t growing fast. And that is why the share price is languishing at £20 which is a big drop from its highest valuation at £40.

I have a major concern and that is what if there was a private equity buy out bid. They would inevitably saddle Diageo with lots of debt and then sell off its best assets. Even worse, it might detach parts of the business from the main parent company which means that in theory the liability owed to the Thalidomide Trust could be parked in a subsidiary stripped of its assets. We have raised this point with Suzanne Lluch at the Trust to check out. All of this matters to us as a substantial proportion of the annual allocation is funded by Diageo through their annual payments to the Trust.

I would say not to panic because the likelihood of the risk of a private equity buy out bid is low (but nevertheless if this did occur then the impact for us could be high). Any bidder for Diageo would face a political furore as it is a major British exporter, a big employer in Scotland, and pays a lot of tax to the Exchequer; so the opposition to a takeover would be immense. And of course if there was an attempted takeover there is a lot we can do to turn this to our advantage; for example, crystallise the liability straight away, add a premium to the liability, and ensure continuous reviews going forward at more frequent intervals.

But to put us in the strongest position possible we need a powerful Thalidomide APPG growing it from its existing 29 MPs to at least 100 MPs.

Our task is to lobby everybody as gently as possible. We must not take either the annual allocation or the Health Grant as a given: they are not – both can be at risk (as outlined above). So, once again, we have to emphasise the best protection in the event of one or both of these sources of revenue coming under threat is a very large Thalidomide APPG in parliament.

Without such a group our community will lie helpless. We cannot rely on the trustees or the Trust staff to do the job for us. They will come and go and it won’t affect them at all. In all campaigns, the community which is being affected, is always hoping that someone else will do the task of securing their wellbeing. Given the level of vulnerability of our fellow thalidomiders, this is hardly surprising. That somebody else is ‘us’: no one else will do it.

Thalidomide Voice needs your assistance. Everybody needs to contact as many friends as possible to assist us in the campaign to get their MPs to support us. We must lobby our friends in the same way we are lobbying you now, and similar to the way Thalidomide Voice lobbies MPs who strongly support us to get their close MPs colleagues to join our APPG too.

Mikey Argy stands ready to assist you with any of the technical aspects in instructing friends to contact their MPs – email@thalidomidecampaigners.com

I am acutely aware that all of us do not have lots of spare time, and many volunteer in their communities. But we need you now! And this is what we need you to do.

Choose 1 friend a week who you contact to assist our endeavour by contacting their MP
Update Mikey at the end of the month by email to let her know how you are getting along at email@thalidomidecampaigners.com
Keep this work rate up until the end of the political conference season mid October
Read Mikey Argy’s article below which has instructions on how to do all this

Our campaign will be immeasurably strengthened by your help and your effort. This hard work will pay off tremendously.

Many thanks for your patience and understanding. There is no other way.

How You Can Help

Mikey Argy, Thalidomide Voice Deputy Chair

Following on from Nick’s article, I am writing to share with you all how I felt when it was first suggested that we write to our friends and family.

I shrank inside: I thought, ‘oh no, I can’t possibly do that – this is my own fight; nobody else is interested’, and I felt embarrassed as well. I also knew I had to contact my thalidomide friends who are not members of Thalidomide Voice. But like they say, ‘monkey see, monkey do’, and I had to do it.

So I first wrote to a cousin who I barely ever see, so that there was little chance of ruining a family relationship that barely existed anyway. I was met with an enthusiastic ‘yes’ – one extra MP ticked on the list. I tried another cousin: same reaction! Two new MPs added to the list. So I went for the rest of the cousins and 95% have responded AND taken action, some with some extra help from me for the older ones…

Then onto the thalidomiders who I personally know: I was honestly expecting a rant or disapproving comments. It turned out they knew nothing about Thaldomide Voice, and they were extremely enthusiastic to join in with the campaign.

One thalidomide friend knew about Thalidomide Voice (and I knew they did not want to be a supporter) but were happy to add their name to this campaign. So all in all, the response from my family and friends has been amazing, and I really want to encourage you all to take that first step and get in touch with the people you know who are able to use their emails for starters!

Why should all the beneficiaries join us and take this action in this campaign?

Every beneficiary plays a crucial role when they send their letter to their MP. This is the best way for us to get in contact with as many MPs as we possibly can; and then we want those MPs to join our APPG.

Many of us do not have enough Annual Grant and Health Grant coming in from the Trust to cover our future costs. Beneficiaries may have private incomes elsewhere but many do not, and rely solely on the Trust for their income. This campaign is for all of us.

If you are one of the lucky ones with enough income, then think about the rest of the community who need you to take one small action, and send a letter to your MP. If you want more money then take action with this campaign, because there is nobody else in our corner.

If your family and friends really do not want to join Thalidomide Voice the organisation, they can still participate in this campaign by writing to us at email@thalidomidecampaigners.com, sharing their details there, or at the very least giving us their postcode so we can find their MP, and so then they can address their letter accordingly.

All they’ll need to do is add their address to the letter themself, and let us know when they’ve sent it so we can follow it up with their MP. We are using the old campaign email address to separate it from the Thalidomide Voice email address. This campaign is for everyone to participate in.

Finally, I wrote to you all about a month ago about this, so if you track through your spam and binned emails you will find all the instructions on how to follow through with this action. If you can’t find that email drop us a message at email@thalidomidecampaigners.com and we will resend it to you.

Thank you!

Making Provision for the Future

Rowland Bareham, Thalidomide Voice Chair Designate

There has been concern recently over stipulations by the Trust in case someone needs to activate an Lasting Power of Attorney (LPA) if they lose capacity to make decisions for themselves. I want to set out the facts so that people are aware of what is going on.

An LPA is a legal document that allows you to appoint someone you trust to make decisions on your behalf if you become unable to do so yourself. This could be due to an accident, illness, or other circumstances affecting your mental capacity.

Losing capacity can be gradual, for example with an onset of dementia; or quite quickly, for example with an incidence of a stroke. So, we all should be considering having an LPA set up (one for property and another for finance) just in case to ensure that your wishes are respected and that someone you trust can manage your affairs, including financial, property, and healthcare decisions.

If circumstances arise, this LPA allows you to choose who makes decisions for you, rather than leaving it to a court-appointed deputy or a professional. Proactively, planning for potential future incapacity can help ensure that what you would like to happen does happen.

Without an LPA in place, your family members may need to apply to the Court of Protection to become your deputy, which can be a lengthy and expensive process. Knowing that someone you trust is legally authorised to make decisions on your behalf can offer peace of mind for both you and your family.

The Trust has provided resources on having an LPA in place, which I‘ve summarised below.

How to find general information

There is information on the Trust’s website:
At the above, there is a link to a factsheet. On pages 4 and 5 of the factsheet is an explanation why the Trust recommends that one of the attorneys should be a professional, such as a solicitor.
There is also a link to a video from the latest Future Money Matters event (but you need to be logged into the beneficiary area of the Trust website). The video is also available on YouTube.
There is also a factsheet about Trust finances in general that you should be aware that if you, sadly, die, and have been seen by the Trust as lacking capacity but with no LPA in force, then any undrawn Annual Grants held by the Trust will not pass onto your estate.

How to discuss individual circumstances

It is fair to say that beneficiaries do have different circumstances with different possible scenarios – for example, some of us have trusted family members, but some of us don’t; and some of us don’t have close family members (for various reasons).
I would recommend anyone looking at setting up an LPA to consider contacting Jeff Provost at the Trust, doing this sooner rather than later. Jeff (as he has done with me) is happy to discuss individual circumstances.

Policies regarding beneficiaries who lack capacity

During our last supporters’ zoom call, a beneficiary drew our attention to the Beneficiaries Who Lack Capacity (BWLC) policy (which does not seem to be readily available), which explains how the Trust ensures appropriate safeguarding against possible financial abuse.
I was pleased to see in the Directors’ Update (Summer Edition, sent out in June) that there will be a new factsheet on this very topic. We will keep a look out for this.

Getting an LPA in place is something that we all should do (along with having a will). I know it is a legal document and does raise lots of questions and concerns, but Jeff Provost at the Trust can help you.

Why Disability Awareness is Important

Sara Bunting, Thalidomide Voice Supporter

I have worked in the disability charity sector, having taught for Riding for the Disabled and after obtaining a BSc Psychology degree. I was employed at a brain injury charity after that.

After obtaining an MA in Disability Studies I was subsequently employed by the Stroke Association. Despite personal experience, employment experience and academic knowledge, this highlights that disability awareness training is important and should be mandatory in the disability charity sector, regardless of experience.

We know disabled people have historically been discriminated against and still are, in terms of exclusion, accessibility (social and physical) and thus disempowered. The use of disability models promote understanding and in part, investigate and explain real life experience, demonstrating why disability awareness is important. Here are some alternative approaches to looking at disability:

1. The Medical Model of Disability – developed by medical professions in the 1970s and viewed as:

Outdated and unpopular among disabled people
Blaming individuals for impairments and not society. For example it blames the individual for not being able to access buildings because of steps: ‘society’ should have placed a ramp.
Equating disabled individuals to the norm – forced to look ‘normal’ e.g. as a child wearing useless prosthetic limbs or being hidden away.
Not recognising social barriers
Using outdated language e.g. 'wheelchair-bound'
Disabled people have limited control over their lives and are disempowered

2. The Charity Model of Disability – developed by non-disabled people and viewed as;

An off-shoot of the medical model
Viewing disability as tragic
Historically run by the ‘seat of pants’ – but has improved with training
Has been developed, led and run by non-disabled people, where disabled people are controlled and told what's good for them
Influences the management/employment and structure of charity
Has created an industry – i.e. paid staff – sometimes for the benefit of the staff rather than the recipients or service users of the organisation
Offers some useful services and information

3. The Social Model of Disability

Developed to oppose the medical model
Recognises that disabled people are oppressed by the public’s view of normality
Politicises disability – is thus suited to advocacy
Does not recognise the need for medical intervention e.g. surgery to normalise a person’s appearance
Maintains that disabled people are disabled by barriers in society rather than by their impairments

4. The Bio-Psycho-Social Model of Disability

Demonstrates that the needs of disabled people are multifaceted
Recognises that some disabled people need medical intervention
Model has been criticised for its partial alignment with medicalisation i.e. the World Health Organisation
Demonstrates that the condition (bio) can influence the psychological and social elements of a disabled person’s life. For example, someone with an unusual disability may be stared at, ridiculed or bullied and may reduce social exposure and only socialise with people they know well

Disability Awareness

The models above offer a basic understanding and perspective on disability. They highlight a timeline on disability, from the outdated medical model to the bio-psycho-social model towards a mindful approach to disability awareness.

Disability awareness educates society, particularly organisations that support disabled people, towards empathy, inclusion, accessibility and understanding. This should culminate in the promotion of empowerment towards agency in the lives of disabled people and should be inserted as mandatory training for all staff members supporting disabled people – so they have control over their own lives and work with and have agency alongside organisations that support them, moving away from the medical model and the view that talking to doctors is disability awareness.

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Thalidomide Voice Newsletter: August 2025

Thalidomide Voice Newsletter August 2025

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