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February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 24 European countries.

On and around this day hundreds of patient organisations from more than 60 countries and regions worldwide are planning awareness-raising activities converging around the slogan “Rare Disorders without Borders”

Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!

The Thalidomide Trust is part of EDRIC-a member organisation that represents people with limb difference .EDRIC is supporting Rare Disease Day by publishing an EDRIC dysmelia/limb difference video for Rare Disease Day (28th February) . The Trust encourages you to take a look at the video and share it with your friends and colleagues maybe through your own Facebook profiles/pages/groups or other social media accounts.

Rare Disease Day 2013 video

For those 18 or so Thalidomiders gathered in the gallery of the House of Commons on Thursday 20 December 2012, it was a momentous occasion.
We heard Norman Lamb, the Minister for Care Services state the UK government’s commitment to paying around £80 million into the Thalidomide Trust over the next 10 years. This is for Thalidomiders in England.

Next, we heard him reiterate the regret and deep sympathy first expressed three years ago by the then Health Minister, Mike O’Brien. Mr Lamb also acknowledged the physical hardship and emotional difficulties faced by Thalidomiders and their families, and the challenges we continue to endure.

Norman Lamb then went on to pay tribute to the Thalidomide Trust and the campaigning expertise of its National Advisory Council – at this point he glanced up at those of us in the Public Gallery.
It was so right that trustees Marlene Winfield and Kevin Wesbroom, and director Martin Johnson were in the Gallery to hear the government acknowledge the expertise and valuable work of the Trust.

Liz Kendall, labour Shadow Health Minister responded to the statement, querying the need for an annual review and asking for a commitment to not reducing the grant in future years.
The answer? “We will not let those people down in the commitment we are making today, and the funding will be maintained.
Society has a responsibility to this group of people”.

As the debate unfolded, Thomas Docherty (Labour MP for Dunfermline and West Fife) called for the manufacturer of thalidomide finally to acknowledge its culpability, something that it has repeatedly failed to do. He asked Mr Lamb’s opinion “will he update the House on his assessment of the likelihood of getting those cowards finally to take responsibility?”.

Norman Lamb responded by referring to his conversations with us, “Thalidomiders are deeply frustrated—as am I—by the failure of the manufacturer to face up to its responsibilities. I cannot provide a positive update that suggests that it is about to do what it should do, but I think we would all agree that it should acknowledge its culpability without delay”.
This was fantastic to hear – and very much in line with what the NAC wishes to achieve next.

Frank Field (Labour MP for Birkenhead) asked how did he fix on that sum? Does it meet all the trust’s demands?
The answer was that it does not meet all needs. We seem to be getting our messages across…………

As the debate progressed, a message came in by mobile phone – Scotland was getting ready to announce its proportionate share, and so it did around lunchtime. £14.2 million for a 10 year period for the 58 Thalidomiders in Scotland. Alex Neil had put flesh on the bones of his commitment to us made five weeks previously.

This was proving to be a good day indeed.
As we filed/wheeled out of the Public Gallery and into the lobby, there were tears in quite a few eyes – including those of the mother of one Thalidomider.
Norman Lamb and two of his senior civil servants came to speak to every individual Thalidomider in the lobby, which meant a lot to us.
In the cafe we gathered to celebrate with wine or coffee (thank you Kevin for insisting on paying for us all – now we know what Trustees are for!!).
The excitement was electric – some were on the phone (including to the Welsh Assembly!), others just revelling in the relief that the statement gave them – and the ability to make proper plans for the future.

On the way home, the third announcement came in from Northern Ireland – Health Minister Edwin Poots says he will extend the current health grant for Thalidomiders in Northern Ireland for a further 10 years.

Whilst the day had begun with some disappointment – that the incredibly short notice had prevented many Thalidomiders from being here (who badly wanted to be with us) – our conclusion was that 20th December had been a momentous day.
Looking ahead, the details will unfold about the terms and review arrangements of the grants announced on this day, with Wales committing to its proportionate share the following morning. Job done.
Now we have some more campaigning on the cards – roll on Thalidomiders!!

Read the Hansard Report extract (PDF)

We received a letter from the Department of Health 30th November 2012, via email at 18.25.

The Department of Health is working on the basis that they will be able to continue the Health Grant funding for longer than a three year period, and are agreeing the final stages with Treasury.

The Department of Health does not say for how long, nor the amount, yet.

However, the letter also talks about the public announcement they will make and that this announcement deserves public attention. In conversation with Norman Lamb he had said that he would be delighted to have as many thalidomiders as can make it in the public gallery, so to extrapolate from that, we cannot imagine the Health Grant will be reduced from its current amount. Nor do we imagine that they will extend it only for a further three year period. That wouldn’t be such good publicity.

The Department of Health says this will be within the next two to three weeks.

We know this time of year is very busy for us all, and with the threat of a harsh winter already on us, and an exciting white Christmas in the south, we are all going to be naturally anxious about whether we will be able to make the date in Westminster, especially if we are given short notice. The campaign team will do the best we can to get the information to you as quickly as possible. We, you, all need to ensure that when we, you, hear the news, that we inform each other. Please all help us in sharing the news.

On Friday 23rd November 2012, the first UK memorial to the thalidomide scandal was unveiled in the bustling heart of Harrogate. It is a fine copper beech tree and a plaque with the words: “This tree was planted to mark the 50th Anniversary of the Thalidomide Disaster 2012.”

Its’ existence came about from Guy Tweedy’s personal determination to improve on Grunenthal’s hideous armless statue in Stolberg, which thalidomiders around the world have found so insulting. In contrast, Guy’s memorial in Harrogate came from the heart, and it is now truly ‘ours’. One of the Yorkshire-based thalidomiders who was there on Friday, has already promised to visit the tree regularly to keep our memories alive and make sure the tree stays healthy.

Guy achieved support locally in his home town for this memorial, and it was lovely to see so many of his family and local supporters on the day – including his own MP Andrew Jones, and Alec Shelbrooke MP – who has given all of us his rock-solid support on the current health grant campaign in his role as chair of the APPG in Parliament.

Dr Martin Johnson spoke about what the tree represents – the thousand babies who died in the UK, and the 50 or so thalidomiders who have passed away during the last few decades. Guy, in his speech, recognised the pain and suffering of our families, which was reflected in many of the thoughts and feelings shared amongst us afterwards – “I was thinking about my mum and what she went through”, “My parents are no longer with us, they would have loved this. They had such a hard time although they never complained”.

And looking forward?

The speakers and the thalidomide survivors present were keen to point out that the event marks the increased determination of thalidomiders in the UK to seek justice from Grunenthal, the inventors of the drug, who have never shown a shred of decency towards the hundreds of UK-based thalidomiders. We, who suffer increasingly poor health as a result of their negligence.

Much of the discussion afterwards was about our limbs and fingers which no longer function, the pain in ankles, backs and hands, and our distress at the rate at which we seem to be losing our independence and mobility.
We shared our concerns about the future costs of this, which are of an order of magnitude as yet unaddressed.
If this event marks the start of a shared determination to bring Grunenthal to account, and for them to make proper recompense to all thalidomiders – then let’s look forward to gathering again around the Harrogate tree, to recognise that achievement too!

Thalidomide memorial Campaign

Meanwhile, the work of the Thalidomide Memorial Campaign (spearheaded by Rosie Moriarty-Simmonds) continues to progress towards a memorial which will be designed to remember all those who have, and continue to be, associated with the thalidomide story. News and information on this campaign can be found on the Thalidomide Memorial Campaign Facebook page, which is updated with information as and when it becomes available.

Links:

• Local Harrogate News report includes clips of Guy’s address and Martin Johnson’s speech.
• BBC news report
• ITV report
• ITV Tyne Tees news broadcast

On 15 November 2012, we met Alex Neil, the Cabinet Secretary for Health and Wellbeing in the Scottish Parliament. Alex Neil made it clear that his government wishes to make long-term arrangements for giving Thalidomiders in Scotland the financial support we need, with a resolution during the first week in December.

We take this as a positive message that the Health Grant is continuing in Scotland, with arrangements being discussed for an announcement in the Scottish Parliament in Edinburgh. This is so Scottish Thalidomiders can have the chance to attend and meet Alex Neil personally on the day of the announcement. Please check back for further details about this on the website.

6TH NOVEMBER 2012 3.15 – 3.45

We met yesterday with Norman Lamb, the Minister of State for Care Services, at the Department of Health (DH). It was a very positive meeting.

The DH is already talking with the Treasury discussing how many years in advance could the government give the Trust monies before a further review needs to take place, and what type of review should be in place, and that it needs to consider that thalidomiders’ health may possibly have deteriorated in the future to a place where more support will be needed by the government than is currently given.
The DH’s aim is to get this resolved by the end of November.

We take this as extremely positive that the Health Grant is continuing, at the same level as before, but we won’t say WE HAVE WON until the ink has dried on the paper.

We then discussed how the announcement could be made. We feel that a verbal announcement in the House of Commons would be preferable, and we asked the Civil Servants to consider giving us more than 12 hours notice. We were informed that the possible maximum is 4 days but only if the member of the house who informs the DH that an announcement is being made is agreeable to do so.

We advised Norman Lamb that we would like to have as many thalidomiders as possible in the gallery on the day of the announcement and that we need time for our community to organise their travel. The feedback from this was that the Minister and the Civil Servants would be delighted for as many of us is possible to hear the announcement. They gave the indication that they will pursue this position as much as they can.

The DH’s aim is to get this resolved by the end of November.

My recommendation to everyone therefore is to check in here at the Trust website daily – this is the forum where we make our announcements and we promise to you that we will get the information here as quickly as is humanly possible.

We have not forgotten the Welsh, the Northern Irish, and the Scottish Assemblies. We hope to meet with them shortly and we will keep you updated.

Cabinet reshuffle

As you know David Cameron re-shuffled his cabinet at the beginning of September 2012, and we now have a new Secretary of State for Health Jeremy Hunt, and a new Minister of State for Care Services Norman Lamb. They have replaced Andrew Lansley (Secretary) and Paul Burstow (Minister). It is still possible that Norman Lamb may not be the appointed minister for us, yet. He was the minister appointed to answer at the Westminster Hall Debate as the Minister of State for Care Services, however, sometimes politics can do odd things and so we are still waiting confirmation on his position. But we cannot stop just because Westminster does, and so we continue to campaign, meeting MPs and writing to Norman Lamb. Whoever does become the confirmed minister dealing with our Health Grant will receive the rapidly growing file regardless of whose name the letters are addressed to.

Where are we on the campaign?

We have seen 73 MPs to date, across all parties. Any who were unsure about the Health Grant and whether thalidomiders should be left to the benefits system alone quickly changed their tune. Others were more motivated to then reach out to their constituent, and others had already seen their constituent and wanted to ask us, the campaign team, what else they could do to support us.
Nearly all the MPs we have seen have signed our EDM 46 but not all. There is a campaign among many MPs not to sign any EDMs – sometimes we change their mind, we give them great counter arguments, but sometimes they prefer to show their support in different ways. If your MP has not signed EDM 46 he / she has more likely written to the Minister, and / or approached the Minister, and / or joined the APPG, and / or spoken with the Secretary, and / or put in for the Westminster Hall Debate, and / or tabled written questions, and / or oral questions, and basically helped keep the subject of thalidomide firmly in the mind of the Department of Health.
Parliament started back from its summer recess on the 3rd September 2012.
Parliament recessed (again) on Tuesday 18th September 2012.
It comes back for business on the 15th October 2012.
However, MPs are in their constituencies during this time, although in this break from Westminster they will be attending their Annual Conferences. Their conference dates are:

• Labour- 30th September 2012 – 4th October 2012 in Manchester
• Conservative- 7th October 2012 -10th October 2012 in Birmingham
• Lib Dems- 22nd September 2012 – 26th September 2012 in Brighton

Keep talking

When they are not at their conferences we encourage you to make appointments and visit them if you haven’t yet done so. Your personal visits are what drove so many MPs to attend the Westminster Hall Debate on 5th September 2012. This is not just “encouragement talk”. Just minutes before the Debate whilst standing in Westminster Hall we were assured by a passing MP that a debate at 11am on a Wednesday morning just before Prime Minister’s Question Time was THE WORST time to have a debate, and we would be lucky to have 2 MPs, if any, attend. This was a little disconcerting, for half a second (no time for negative thoughts and doubts when campaigning). And, 27 MPs came, 15 spoke and many mentioned their constituent(s). This is the power we have when we work together.
The minister has promised us an answer in the autumn. That could be anytime up until December… Whilst we wait we continue to campaign; brief MPs, encourage MPs to submit written and oral questions, sign EDM 46, approach the minister and the secretary, and encourage YOU to visit your MP and tell your own story.
If you have any questions please email us at thalidomidecampaign@yahoo.com

The Thalidomide Health Grant was debated in Westminster Hall on 5th September 2012. There were about 40 beneficiaries watching from the public gallery, having come from all over the UK to bear witness. It was a momentous occasion and having so many of us there made an impact.

Cathy Jamieson (MP for Kilmarnock and Loudon) led the 30-minute debate in great style, with 27 other MPs attending, of whom 15 spoke – each one making a useful contribution, many of them quoting something that their thalidomide constituent had told them. This was thanks to the letters you have sent, and face-to-face visits that many of you have made to your MPs in your home towns, backed up by the efforts of the NAC campaign team and Trust staff – it shows just how effective we can be, working together like this – well done everyone!

Cathy Jamieson and the MPs were unanimous in their support for a continuing Health Grant, showing an in-depth awareness of why we need it, and the wide range of helpful things we use it for.

Norman Lamb, the new Minister of State for Care Services (Health) was the minister called to reply. It was his first day in the job, replacing Paul Burstow in the Cabinet reshuffle, but he listened and understood what we are asking for; our need for a decision soon, and a ‘longer term’ Health Grant arrangement. In his words, he undertook to make the decision “in the autumn”. He and Cathy Jamieson MP referred often to the data we are collecting for the health departments – the Firefly evaluation and our SOF reports are the keys to unlocking their decision. This shows just how important those projects were, the Firefly Evaluation – an independent evaluation done by Firefly where approximately 60 beneficiaries supplied information in direct relation to the questions asked by the Department of Health, and the Securing Our Future (SOF) – run by the NAC where so many of you have input your cost data for the last two years.

Watch the proceedings of the debate, on the parliamentary televised record
(scroll along the time-bar to start watching at 11 am Westminster Hall, 5th September).

Read the full Hansard transcript of the debate

OTHER NEWS:

We have a meeting of the Thalidomide APPG next week which Trust staff and the campaign team will attend. We have another letter planned for you to send to your MP shortly. We believe that the end is in sight if we keep up the pressure with your continuing help and support.

Year 2 – Final Report
Looking to the Future: Evaluation of the Health Grant to Thalidomide – Impaired People is now available.

Extract:

“This second interim report by Firefly into the impact of the government’s Health Grant on
Thalidomide Trust beneficiaries is also a comprehensive and in-depth report on the
current life circumstances of thalidomide survivors. The evidence in this report sadly
comes as no surprise; the Thalidomide Trust is fully aware of the complex nature of the
disabilities affecting beneficiaries, their chronic and worsening health problems, and the
difficulty many experience in getting adequate and effective treatment.”

The full document is available on the Government Health Grant Evaluation page.

Your campaign team held their first meeting with Paul Burstow, the Minister of State for Care Services, last week. This was the first meeting of the campaign with this minister and he thanked us for seeing him. He said it would be good to meet again after publication of the second Firefly interim report. This will be published in the week beginning 9 July 2012.

In summary, he made no commitment to us, other than to receive and read the second interim Firefly evaluation report in July and to meet us again after that. There will be further news after the minister meets with the campaign team again.