Public Inquiry

‘Frustrating’ meeting with minister on compensation

Written by Jessica Bomford, December 11, 2024

Today the Haemophilia Society was one of 30 groups invited to meet Cabinet Office minister, Nick Thomas-Symonds MP, and his team of officials.

We want to update you on what was discussed at the meeting and what happens next.

Our charity was represented by our Chair, Conan McIlwrath. The other people in our group meeting the minister were: John Dearden, Chair of Haemophilia Scotland, Nigel Hamilton, Chair of Haemophilia NI, Lynne Kelly, Chair of Haemophilia Wales, Paul Kirkpatrick of Friends & Families NI and Tommy Leggate of the Scottish Infected Blood Forum.

The meeting lasted for 45 minutes and each group was given four minutes each to raise key issues on behalf of their organisation.

Mr Thomas-Symonds began the meeting by announcing that, following an intervention by Sir Brian Langstaff, Chair of the Infected Blood Inquiry, the government has changed the eligibility rules to allow adult siblings to apply for compensation. More detail on this will follow from the government.

The minister also apologised for the on-going confusion over interim compensation applications and said a ‘solution’ had been found, although this has still not been publicised. He told the group that so far 16 people have received offers of compensation from the Infected Blood Compensation Authority (IBCA), some of whom had accepted. Mr Thomas-Symonds said a ‘test and learn’ approach by IBCA, which is administering compensation payments, meant it would be able to ‘scale up’ payments in the longer term.

He said he would publish a document to parliament with an update on the government’s response so far to the inquiry’s recommendations. This was a disappointment as we had expected this update to be made in person to MPs in the House of Commons.

Each group member was then invited to speak. The issues raised were:

Inadequacy of this 45 minute-meeting, with just four minutes per group
When will next meetings be held?
What will engagement look like for the second set of compensation regulations?
What is the minister’s response to Sir Brian’s letter of 9 December 2024?
How will the Infected Blood Inquiry’s recommendation 10 (‘Giving patients a voice’) be taken forward?
Provision of funded legal support for claimants – current IBCA offer to law firms previously involved with the inquiry is totally insufficient to fulfil professional obligations and support and protect claimants at each stage
Far too many obstacles to compensation scheme operating effectively
Lack of clarity of evidential requirements
Need a decision that date of infection is first treatment with factor
Concern that the cost of running IBCA is £26million a year for five to seven years
Complexities of probate and the confusion caused to people applying for interim compensation
The 4,631 people currently registered with a UK infected blood support scheme should get their compensation in 2025
Future widows/bereaved partners will be disadvantaged after 31 March 2025 when new applications to current support schemes end
Mono infected hepatitis B are currently excluded from the support schemes and should be included.

Mr Thomas-Symonds responded:

IBCA is independent
Training of IBCA’s compensation case managers will be critical
Infected and affected to be involved in decisions
He accepted 69 of 74 of IBCA interim chair Sir Robert Francis’ recommendations
£11.8 billion announced to fund compensation
Compensation will be paid as soon as possible
He will write to the Department of Health and Social Care on funding of charities named in the inquiry’s recommendations
He will continue to engage.

Speaking after the meeting, Conan McIlwrath, Chair of the Haemophilia Society, said: ‘We were frustrated that the minister showed little interest in addressing the issues we were raising. Once again, it felt like the government thinks it knows best. The meeting itself was unacceptably short and barely allowed any time to raise the ever-growing list of issues that are of causing concern and anxiety to the people we represent.

‘It is crucial that this meeting is the start of serious and meaningful engagement with the infected blood community, but nothing I heard today makes me confident this will happen. The minister overlooks the resilience and determination of this community at his peril. We will continue to push for the answers and solutions that our members are demanding.’

We will now write to Mr Thomas-Symonds with a list of concerns which were not mentioned in today’s meeting that are equally urgent and should be addressed. On Tuesday 17 December the All Party Parliamentary Group on Haemophilia and Contaminated Blood will meet to discuss how to take forward concerns over the compensation scheme.

Earlier this week, Sir Brian wrote to Mr Thomas-Symonds to raise concerns about a ‘groundswell of discontent’ with the way in which compensation is being managed. He also emphasised the need for IBCA to be independent of government and for government to be open and transparent about its work. Today, Sir Robert Francis, interim Chair of IBCA responded with this letter to Sir Brian.