29 June 2016
Update on Contaminated Blood Campaigning
The Haemophilia Society are continuing to put pressure on the government to respond to the issues raised by the consultation on support arrangements for people infected by contaminated blood.
Following on from the APPG meeting last month where a group of MPs questioned the responsible minister Jane Ellison and some DH civil servants, we have had further conversations with the relevant policy team at the DH. We have been able to make clear that the new proposals do leave many people worse off and the policy team are committed to reviewing the discretionary support.
The recent political uncertainty following the EU referendum has distracted MPs and ministers however our engagement with civil servants has been able to continue. We have focused on showing the individual circumstances in which people will be worse off under the new proposals and demonstrating how a better scheme could be created even within the new budget. We are expecting the DH to convene a reference group on the transition to a new scheme that we can also be part of.
This week the DH reaffirmed their desire to respond to the consultation before parliament goes on summer recess on the 21st July. However, we believe the announcement could be delayed until September.
29 June 2016
APPG Meeting with Jane Ellison and DH Officials
The APPG on Haemophilia and Contaminated Blood met with the Minister Jane Ellison to discuss the proposals in the consultation on support arrangements for people affected by contaminated blood.
You can read our summary here.
14 April 2016
The Haemophilia Society has responded to the Department of Health consultation Infected Blood: reform of financial and other support. You can read our response here.
07 April 2016
Contaminated Blood Social Media Campaign
Today we launched our social media campaign to help spread the word that those affected by the #ContaminatedBlood Scandal should receive the dignity they deserve and the security they so desperately need. You can help by following us on Facebook and Twitter and retweeting and sharing our posts. Please share our infographic to spread the message.
31 March 2016
Contaminated Blood Demonstration
A steering group has been set up to try and coordinate a demonstration on 12 April, the day of the Parliamentary debate. The group includes representatives from many of the campaigning groups and has tried to be as inclusive as possible. You can read about the plans here
23 March 2016
Update on contaminated blood campaigning and influencing work.
The last few weeks have been very busy. We have been
- Liaising with MPs to ensure parliamentary questions are asked to answer some of our questions about the consultation and highlight the areas of concern.
- Meeting with a lawyer for advice on what legal challenges The Society could consider taking
- Answering members questions on how the proposal could impact them if it were to be implemented
- Working with a communications agency to prepare a media campaign to highlight the issues and concerns
- Liaising with Haemophilia Scotland and Haemophilia Wales to ensure we are kept informed of any communication and can support each other in our work.
- Meeting Lord Hunt who has a specific interest in Hepatitis C treatment access to highlight the lack of access for our community who have stage 1 and concern that the DH are admitting (due to the consultation proposal) that NHS England will not treat everybody according to the NICE mandate in a reasonable timescale.
- Preparing a briefing for the opposition party to ensure they fully understand the impact of this proposal on the community and serious concerns we have.
- To the memorial event in Scotland
- Investigating the possibility of seeking treatment in other areas of Europe for our community via the European Health Directive.
- Considering the impact of the announcement in Scotland for people in the rest of the UK.
- We also had a very short notice invitation to meet with Department of Health officials as the secretariat for the APPG following numerous requests for a meeting.
You can read more details about our work here
18 March 2016
Scottish Government Contaminated Blood Proposal
Today the Scottish Government made their announcement on the proposal for people affected by contaminated blood in Scotland. We will update on news in the rest of the UK as soon as possible.
12 February 2016
Our guide to completing the government consultation document
Many members have been asking for help in completing the government consultation document. We have produced this guide which we hope you will find helpful. We are aware many members are considering not completing the form as they are so distressed and angry by the proposal. We very much understand this, and are calling for the proposal to be withdrawn, however all advice we have received is that the only way to be sure to influence the outcome of the consultation is to complete the form, so we very much encourage you to do so.Please see our recommendations here.
04 February 2016
The Department of Health in England has launched a consultation on the support for people with contaminated blood. The Haemophilia Society has deep concerns about this and has prepared information for our community to help them campaign for it to be withdrawn. You can read the information here: Cover Letter , Consultation Response , Suggested Letter to MP, Online Petition.
05 October 2015
The Department of Health has organised a one-off reference group meeting to inform the development of a consultation document on the reform of the current financial and support schemes that exist for those infected and affected by the contaminated blood tragedy.
The Department of Health's Blood Policy Team had originally asked us not to publish the report from the reference group meeting as the Department of Health intended to publish it themselves. However as there have been delays getting the report onto the .gov.uk website they have now asked us to publish it on our website.
You can read the report from the reference group meeting here (PDF).
17 July 2015
Lord Prior of Brampton, Parliamentary Under Secretary of State, Department of Health had issued a written statement on infected blood. You can read our response to that statement here (PDF).
Following the publication of the Penrose Inquiry report, The Haemophilia Society has responded to the Government and made recommendations. You can read our response here (PDF).
In response to the Prime Minister's statement at the end of the last parliament, we have written with a proposal for the future support for those affected by contaminated blood. You can read our proposal here.