Summary of compensation webinar

Written by Nicola Sugg, May 30, 2024

Thank you to everyone who attended our webinar on 29 May. We do not record our webinars to protect people who are not public about their infections, or their family members, who may want to participate in the discussion. This is a summary of what was discussed.

Debra Morgan, our Head of Policy and Campaigns, set out what we do and don’t know about a compensation scheme for people infected and affected by contaminated blood products. We were joined by Sam Richards, a Chartered Financial Planner and the founder of Factor Financial Planning, a financial advice firm which specialises in supporting people with bleeding disorders and their families in the UK. 

Compensation – what we know

  • The Infected Blood Compensation Authority (IBCA), the arms-length body which will administer compensation, has now been established.
  • The government has set out its proposed compensation scheme which includes who is eligible and how much might be paid. The figures used are ‘illustrative’ and may change.
  • The lump sum figures specified apply to the living infected and the infected who have died. Where a person has died, their estate can apply for compensation. See below for more on this.
  • In addition to the lump sum, children, including step-children, who were under 18 when a parent was infected, partners, parents and siblings can apply individually for compensation as affected persons.
  • According to the scheme, the regular ex-gratia payments made by UK support schemes to the living infected and bereaved partners will stop on 31 March 2025. Any future monthly payments would come out of a person’s compensation award. See below for more on this.
  • Acute hepatitis C (an infection that lasted less than six months) is recognised in the compensation scheme, but the payment allocation is considerably less than chronic hepatitis C.
  • Although compensation lump sums are tax-free, tax would be payable on returns on investments made with the money.
  • There will be a short consultation period about the compensation scheme, run by IBCA. Register your interest in take part here.
  • Preparations are being made to pay an interim compensation payment of £210,000 to the living infected registered on a UK infected blood support scheme. Recipients are now being contacted.
  • An interim compensation payment of £100,000 to the estates of bereaved families who have so far not received any financial support will also be made, but it is not clear how this will be administered. Some people on last night’s webinar had been told the payment would be made through the support schemes, but this has not been confirmed.

Compensation – concerns and unknowns

  • IBCA has said it will consult with those infected and affected and their representatives about the proposed compensation scheme. We don’t know how this process will happen, who will be chosen and what impact it will have. IBCA has until 24 August (90 days from when it was established) to get final regulations in place in order to make payments.
  • Estates. There was great concern on the webinar about the definition of ‘estates’. Compensation lump sums may be made to the estates of the deceased infected, based on the wishes of the person when they died. However, in many cases, this was decades ago and includes children who would not have had a will. Beneficiaries of original wills may have died, or become estranged from family members, such as children, who might reasonably expect a share of the lump sum. Questions were asked about how to find original wills, how to prove probate from many years ago, whether Letters of Administration, which give authority to manage the estate of the person who has died if they have not left a will, are needed. We are working to get clarity on all these questions. There were also questions about tax. Although the payment is tax free to the estate’s executor, it is not clear if tax would be applied if the executor shared the payments with other family members.
  • Stopping regular support payments. For the living infected and bereaved partners who receive regular support payments there was overwhelming concern and anger. The view was expressed that the government was simply repackaging existing support payments as compensation. People, particularly those infected as children who might reasonably expect to live for another 30+ years, did not believe they would be better off with a lump sum. Many people commented that the stability of regular payments was something people relied on and had been assured by government that they would be made for life. Some people had guaranteed mortgage payments and other commitments based on their regular payments. The majority view was strongly that compensation should be made on top of regular payments, not instead of.
  • Sam Richards, a Chartered Financial Planner, said that in offering lump sums over regular payments, the government was effectively putting the risk of investment on people receiving the money. He said inflation would impact the payments in a way that was difficult to predict.
  • Hepatitis C compensation levels. Concern was expressed about what was felt to be low compensation lump sums for people with hepatitis C. One contributor said you had to be at ‘death’s door’ to qualify for the highest payment. Those who currently qualify for Special Category Mechanism payments through the support schemes said they would miss out on higher payments because this impact was not recognised by the compensation scheme.
  • Calculating co-infected payments. Some co-infected combined payment figures are less than the mono infected figures. It is not clear why.
  • Financial advice. It was raised that those receiving compensation should be given access to free, independent financial advice.

What’s the Haemophilia Society doing?

It is very important to us that we quickly and accurately get feedback from our members to present to IBCA as part of its short consultation period. In partnership with Sam Richards we will be modelling some examples to demonstrate the impact of stopping annual payments. We will also be surveying our members to get your views on the key issues. We encourage everyone to contribute individually to the consultation process as well as helping us to build up a bigger picture.

We will also be organising more webinars to cover issues such as navigating probate, security and how to avoid scams and general financial advice. We will also hold a webinar on the recommendations of the Infected Blood Inquiry’s report.

We are receiving a lot of calls and emails, please bear with us as we work through them. Contact us at [email protected]