February’s Newsletter
This Week's Meeting at Westminster
We recently met with Health Minister Zubir Ahmed and MP Jessica Toale to discuss the aims of our campaign.
The meeting should have been with Health Secretary, the Rt Hon Wes Streeting, after he made a commitment in Parliament to meet us. However, various obstacles were placed in our way on the day in question - Layla Moran MP and Chair of the Health and Social Care Select Committee were scheduled to attend, but we found out in the morning that she was unwell.
Later in the day, just 10 minutes ahead of the meeting, we found out that Mr Streeting could not attend. This was the day that the Prime Minister’s two top aides resigned – so there was indeed a lot going on in the corridors of Westminster!
We were really disappointed by this and we will endeavour to get Mr Streeting in the room, as was his promise.
The meeting did go ahead with a Junior Health Minister and officials, and I have to say we were pleasantly surprised at the amount of progress that the Department had made, and the positive conversation that took place.
I should also say that the support of Jessica Toale was excellent and we greatly appreciate her work for the campaign, inspired by her constituent Jan Hall.
The Health Secretary has previously issued a formal apology - you can read that letter here.
We discussed the three main pillars of the campaign: Awareness, Screening and Accountability.
The Department of Health confirmed they were ensuring GP’s are informed about specialist DES-related cancers and are developing local treatment pathways for DES. The are also looking to do a rapid evidence assessment to better understand the intergenerational impacts of DES and what screening is required for those affected. We also asked for:
Better information of the NHS website for those affected by DES.
More research.
DES to be included in the National Cancer Plan
For DES to be considered under the Rare Cancers category.
Better answers from the MHRA (Medicines Health Regulation Authority) into what went wrong.
A Statutory Public Inquiry - this campaign deserves answers, the Who, What, Where, and Why of this toxic drug. It is our firm belief that there has been a cover up.
We also discussed lots of the issues that you have raised, including infertility, costs associated with fertility treatment and private treatment, feelings of guilt, gaslighting, medical misogyny, impact on life, mental health, relationships, screening and the issue relating to obtaining medical records.
We intend to follow up on this with the Department of Health and are committed to keeping the pressure on.
Following the meeting, they issued the following statement. Dr Zubir Ahmed, Health Innovation and Safety Minister said:
"I want to thank Susannah Martin and fellow campaigners for their remarkable courage in shedding light on the significant and lasting harm caused by DES.
“Despite women continuing to endure the devastating impacts of the drug a generation on, this issue has been ignored for decades, and health professionals have been unaware of the impacts of DES and the support that should be offered to those exposed for too long.
“As I discussed with Susannah today, this government has worked with cancer alliances to ensure NHS clinicians are aware of the impacts of DES and NHS screening guidance. We're also exploring the need for further clinical guidelines and what can be done to boost research into the long-term and generational impacts of this drug, which will help inform what further action is required.”
Press Coverage
We were very encourage by the press interest in the campaign and the meeting that was scheduled. You can read the press reports below and links to the TV interviews by campaigners Susie and Suzanne who bravely spoke about their journeys with DES and on behalf of the wider campaign.
Medical Records
We have produce two documents which may help you if you are trying it access records. You can read them by clicking the links below:
In-Person Meet Up
We are planning an in person meet up in Birmingham on Friday 6th March. Likely times, to allow for travel, are 11AM - 2/3PM. We have chosen Birmingham as a centralised location due to the fact that you are scattered in all four corners of the UK!
We hope to have a space where we can come together, share stories, meet new friends and hopefully feel empowered by meeting others with lived experience of DES and also learn more about the campaign, how you can help, and how you can shape the next steps.
If you would like to attend but are not sure, or worried, drop us a line and we can give you a call. If enough people are interested in attending – we will get his set up and book a venue. Please register your intention to attend via the webform below.
Register You Interest in the Meet Up
Website
Some of the campaigners have got together and donated money so that we can get a designated DES Justice UK website set up. This is now in progress.
This will be vital for sharing resources, contacts and stories as well as being a central space for information and support.
Socials and Campaign Literature
Please remember there are many ways you can stay informed and access support. You can follow us on our social media via the links below and or join the private support group on Facebook (link at the bottom of this email).
Facebook (this is the public group that anyone can join, the private support group is listed further down the email)
You can also access our campaign literature in case you wish to share it: Pamphlet, Campaign Statement
Staying Connected
The Facebook group DES Daughters and Sons Support Group UK is live and active. You can join here or via the button below.
The group has been created by the incredibly brave Suzanne, who talked about her lifetime of destructive health problems as a result of her mother being prescribed DES for the recent ITV News documentary.
You can also watch this video message from Suzanne, who shares her hopes for the Facebook group and why she encourages you to join. This is a safe, private space for those affected by DES to chat privately and share experiences. To be clear, the group is not run by Broudie Jackson Canter. This is a separate safe space ran by Suzanne to help connect DES Daughters and Sons.
You can get in touch with us at DESJustice@broudiejacksoncanter.co.uk.
Do take care and, as always, drop me a line if you want to chat, I do this work alongside my regular case load, so it may not always be immediate – but I will get back to you.
I am helped on the DES inbox by Gabriel, Sorcha, and Laura. They all are passionate about this campaign and your information is dealt with in the strictest of confidence. Information can be overwhelming, so please take care of yourself and step away if you need to do so.
In solidarity,
Clare (Partner)
Broudie Jackson Canter, Walker House, Exchange Flags, Liverpool, L2 3YL
Freephone: 0808 296 5839