Written by Aaron Dennis, March 10, 2023
As part of a series featuring staff at the Haemophilia Society, Jeff Courtney, our Policy and Public Affairs Manager, describes his work in a busy week of engagement, lobbying and policy work.
My week is usually a mixture of time in our office in Borough, meetings in Westminster or representing the Haemophilia Society in person or online to decision-makers and stakeholders.
I started the week in our office, where, in the morning we had our weekly team meeting. This is a chance to update colleagues on what we are all working on and to get advice or input as needed. I spoke briefly on the progress towards the UK licensing of a gene therapy for haemophilia B and plans to meet with a Cabinet Office minister in our campaign for compensation and redress for people infected and affected by contaminated blood products.
In the afternoon I met with my colleague Sophia to work with her on an application for grant funding for our planned project on improving access to Care and Treatment for Women and Girls with bleeding disorders, currently known internally as the CATWAG project.
In the early evening I headed into Parliament with our Chair Clive and our Chief Exec Kate. We have been working with the Hillsborough Law Now campaign and the All-Party Parliamentary Group on Public Accountability to try to ensure that people who suffer as a result of failures of public policy or due to the actions of the government and government bodies see justice, compensation and redress sooner. Kate and Clive were both speakers at the event and we were able to talk about the challenges our community have faced in front of some MPs working on legislative changes.
Some of the issues we deal with at the Haemophilia Society can be difficult and from time to time we need to take calls and support members who are struggling with new diagnoses, complications of treatment, bereavement and frustration with the health system or government. This morning I attended training with the Red Cross team that has been supporting people at the Infected Blood Inquiry. This should help us deal better with difficult phone calls from member going through crises and also protect our own mental health.
In the afternoon we met with our counterparts at the World Federation of Hemophilia to update them on our women and girls project and to find areas of shared working as they seek to improve diagnosis and access to treatment across the world.
Throughout the day I had been emailing and trying to speak to civil servants in the Cabinet Office to finalise arrangements for a planned meeting for contaminated blood campaigners with Paymaster General Jeremy Quin MP. The meeting needed to ensure campaigners from a range of groups representing different people and circumstances and from across the UK were all able to attend and be heard.
In the morning I had meetings with Diana Johnson MP and her researcher. Diana is chair of the APPG on Haemophilia and Contaminated Blood who are a group of around 50 MPs and peers who have frequently forwarded the campaign for justice for people treated with contaminated blood products in parliament. They are preparing hold the Government to account as we get a report from the inquiry with recommendations on compensation this month in advance of the final report in the autumn.
Around lunchtime I was finally able to speak to someone senior in the minister’s team and we made progress on most of the logistical issues for the next week’s meeting.
In the afternoon, I attended NHS England’s Specialised Commissioning Stakeholder Forum. At this meeting rare disease charities were able to get an update from NHS England on the plans to review the service specifications, including the one for haemophilia and other rare bleeding disorders. They also spoke about the latest stages of the transfer of responsibility for commissioning from the central NHS England to regional Integrated Care.
The final invites and information for the next week’s meeting with the minister went out this morning. Some people attending are long-term campaigners while others will be coming to parliament for the first time so I was helping them to know when and how to arrive in Westminster and what to expect. We briefed MPs on the issues that we would like to see raised and the questions that need to be answered by the minister.
On Saturday, I joined our Talking Red Live event in Oxford. This event, aimed at Women and Girls with bleeding disorders, is an annual event that brings people together to share knowledge and experience and to empower women to get the treatment and care they need.
I spoke at the this event to launch our latest project to understand and map the quality of care of access to treatment for women and girls across the UK. We will be running a call for evidence, organising a series of focus groups, surveying women and visiting centres in order to produce a policy report and recommendations for government and the NHS. We hope to launch the final report in Parliament in Summer 2023.
Follow the progress of the inquiry through the Haemophilia Society’s dedicated Twitter account or join our Facebook page for updates on news and information relating to the Infected Blood Inquiry. If you have any questions about what happens next at the Infected Blood Inquiry, call our team on 0207 9390780.