Summary of our meeting with John Glen MP 

On 1 May, The Hepatitis C Trust and Michelle Tolley met with John Glen MP, the Pay Master General.  

Below is an overview of the meeting. We have chosen to bullet point John Glen’s (JG) initial comments. This is followed by a summary of queries and questions people affected had asked us to raise alongside Michelle delivering the lived experience and impact.   

Overview of John Glen’s comments:  

• JG expressed a commitment to deliver a scheme for both the affected and infected communities and apologised on behalf of successive governments for what has happened. The Prime Minister will be making an announcement in the coming weeks. 

• JG provided an update on the legislation and the vote from the previous night [30 April] where it was agreed to make payments to the infected and affected and set up an arm’s length body, the Infected Blood Compensation Authority. This will be set up immediately when the bill has Royal assent. Royal assent could take up to three months.  

• By 20 May the government will have set up a shadow arms-length body which will be fully operational as soon as possible. Initially an administrative person will be in place, but a CEO will be recruited to lead the body.  

• Registration of non-registered individuals will be addressed after 20 May, those with chronic conditions and those registered on the existing support schemes will be prioritised to avoid duplication of the registration process.  

• The scheme may be overseen by a High Court Judge, but it does not have to be as there aren’t that many available. There will be committees and sub committees of infected and affected individuals included within this selection process.  

• The government will be making payments of £100K to the estates of deceased individuals who received infected blood or blood products where there is not a surviving spouse/partner. This payment will be made through the schemes as soon as possible. 

• The government published the terms of reference on 17 April for the expert group to translate the 18 recommendations to a reality – for example the shape of the scheme and the tariffs. The government say they need social care experts, clinicians, and legal experts to help do this. Their names will be published when their work is complete. 

• JG is trying to deliver as comprehensive and clear a statement as soon as possible after the report is published. And said this is the most important thing he will do in his public service. 

Ahead of questions and queries Michelle Tolley provided comment from the whole Blood affected/infected perspective: 

Michelle shared with JG what it is like to be someone impacted by whole blood; not knowing for so many years while experiencing a myriad of health issues, the affects of hepatitis C, how the health issues of people from the community impact on everyday lives and their potential alongside the impact on their families and the tangible loss felt when someone from the community passes away.  

Michelle also stated how difficult it was for the community to trust the government after years of let-down. She expressed that the community needs transparency from government as well as a clear timeline for when compensation payments will be made. She explained people are in limbo, emotions are heightened, up and down after decades of waiting and 6 years of a public inquiry. Michelle stressed moving forward three key points are transparency, clarity, and a timeline.  

 Our questions and queries: 

1. Clarity on the payment schemes and those who can access the schemes including the newly diagnosed.  

JG confirmed that the government will pay £100,000 to the estates of deceased individuals. Where they know people are registered, they will get the money sent. It does not mean they are not interested in providing payment to other groups.  

HCT requested clarity about those other groups including the newly diagnosed. It was stressed that the language used in all communication must be simple, layman terms. 

2. Impact of General Election and summer recess 

The community is extremely anxious that the summer recess and the election will slow things down. 

JG stated that he is a minister until the General Election and will be doing everything he can as long as he is in the role. 

The regulations for the scheme will be set three months after Royal assent. The summer recess doesn’t stop this work. 

JG decisions must be made with input from all government departments. This may be affected by a General Election. The shadow team will be fully briefed. 

3.  The importance of the inclusion of a balanced wide group of people affected and infected by both blood products and whole blood not just prominent voices. 

JG confirmed that the views of the people infected and affected would be given significant weight in the selection of the new arm’s length body. He stated that the arm’s length body would not be effective if individuals do not have confidence in the body. 

4. The need for a clear transparent timeline 

HCT talked about the issues caused by the announcement of JG meetings, the impact on all the community after so many years of meetings and sharing their experiences. HCT shared brief information on a survey recently completed by 541 members of the community on how successive questioning and meetings has impacted their mental health. 

JG acknowledged the level of pain and frustration people have experienced and his determination to get to a stage where he can communicate as much about the scheme as possible. JG stressed the government is working at pace to set up infrastructure such as IT systems as quickly as possible. 

Next steps include engaging with the community, finding a chair for the arm’s length body, setting the arm’s length body operations and legal support. JG will then produce a document which sets out the compensation scheme in clear terms.