• 0800 952 0055

• BDNW.InfectedBloodInquiry.Cav@wales.nhs.uk

Please be aware that our phone line and email address operates between Monday to Friday, 9am - 4pm.

Please note that there is a dedicated phoneline for blood transfusion patients. These patients can contact our Concerns Teams on 02921836318 or alternatively email concerns@wales.nhs.uk

Anyone experiencing thoughts of imminent harm to themselves, or others should seek urgent medical help.

The dedicated phone line and email address will be monitored and managed by Debbie & Sarah from the psychosocial team at the Cardiff Haemophilia Centre. Please see below a brief description of each person's role in the team:

Her role supporting individuals affected and infected by contaminated blood extends to supporting with completing compensation forms and navigating the process of accessing medical records.

Please see below a list of reasons why someone may want to seek emotional support with a psychologist. This is not an exhaustive list, but to normalise some of the reasons why someone might want to talk:

-        Feelings of anger

-        Injustice

-        Grief

-        Anxiety

-        Low mood

-        Feelings of loss

-        Helplessness

-        Trauma (from the inquiry or at time of infection)

The team can have an informal telephone conversation with you to gather information about what your hopes and expectations are from the psychology service. From here, we collaboratively create a plan around how best to support you right now; whether that’s through our team or somewhere that can offer a different service.

We have a designated counselling room to meet individuals here at the haemophilia centre in University Hospital Wales, however if you prefer to be seen elsewhere we can offer support off site.

We are here to support everyone, but we understand that some may want to access support externally too. We can support you with signposting to appropriate support outside of our service. Please see below some other services that are offering emotional support:

or email at: wibss.wellbeingservice@wales.nhs.uk

What they offer? How can they help?

• Psychology and Wellbeing Services for individuals registered with WIBBS and their family members, and bereaved family members.

• Welfare Advice

• Support for Families of Deceased

• Newsletters, Reports and Updates

• WIBSS Application Forms

• Applying to the scheme

at these times:

What do they offer?

• Confidential support service via telephone

When do they offer this?

• Monday between 11am and 1pm

• Wednesday between 7pm and 9pm

• Friday between 2pm and 4pm

• Or leave a message and someone will return your call as soon as possible

• Confidential helpline offering information and support.

• Staffed by people with personal experience of hepatitis C diagnosis and treatment.

• Community support group over Zoom

Helpline number: 020 7089 6221

• From Monday to Friday: 10:30am - 4:30pm

or email at:

• helpline@hepctrust.org

• Cruse offers bereavement support through their website, national helpline, group, zoom, telephone, or one to one in person support.

• Search for services that are available in your local area.

Helpline number:

• You can call for free on 0808 808 1677

Opening hours:

• Monday, Wednesday, Thursday, Friday: 9:30am - 5pm

• Tuesday: 1pm - 8pm

• Saturday - Sunday: Closed

Here, you can search for accredited counsellors who are a part of the BACP (professional body for counsellors and psychotherapists practising in the United Kingdom).

Use the search bar to tailor to your preferences and needs.

Address:

56 St James Street, Narberth, SA67 7DA

Contact by telephone:

• Call on 01834 860330

Email at:

• office@adleriansocietywales.org.uk

Please visit the link to Haemophilia Wales’ website to find out more information.

Or contact directly by phoning at 02920 743403 (daytime)/ 02920 747747 (out of hours), or contact by emailing to ‘info@haemophiliawales.org’.

• Click on the following link which will take you to the National Haemophilia Database www.ukhcdo.org 

• Then click 'Information for Patients'

• Scroll down to the 'Access to National Haemophilia Database Health Records Application Form'

• Choose the form that is most relevant to you, whether you are requesting a record for yourself or for someone else. You will also find a PDF file with further information here too.

• You may send your completed form either by email or by post. Details of how to send are noted within the document.

The “Grant application” refers to an application made for a “Grant of Probate or “Letters of Administration” – Instructions for said application can be found here:

https://www.gov.uk/applying-for-probate/apply-for-probate

To find your most local court or tribunal to send this declaration to, search here: What is your postcode? - Find a Court or Tribunal - GOV.UK (find-court-tribunal.service.gov.uk)

To apply, the person who has died must have been registered with an existing UK Infected Blood Support Scheme, or former Alliance House Organisation (AHO) scheme (The Macfarlane Trust, Eileen Trust, Skipton Fund or Caxton Foundation), on or before the 17th April 2024.

A Personal Representative is not eligible to apply if an interim payment has already been made to the infected person prior to their death, to their bereaved partner or to their estate. Only a Personal Representative (the executor) named on the grant of probate, confirmation or letter of Administration can make a claim for compensation. Check your eligibility, view guidance and find further information on support available to complete this form at www.gov.uk/infected-blood-compensation-estates.

This calculator is in line with the Infected Blood Compensation Scheme Regulations 2025 for people who are:

• infected

• representing estates

• affected

Sarah is able to support individuals infected and affected by contaminated blood with completing compensation forms, accessing medical records and gathering evidence as required.

IBCA is an arms-length body, independent from the government and sponsored by the Cabinet Office. This means that IBCA is not a government department.

The government is responsible for responding to the recommendations of the Infected Blood Inquiry and has created the Infected Blood Compensation Scheme, which it also funds.

Read more about IBCA's role and commitment to the infected and affected blood community through:

• words of David Foley, Chief Executive

• words of Sir Robert Francis KC, Interim Chair

Stay up to date

You can sign up for community updates (email newsletter). You can also read previous community updates on GOV.UK.

Infection severity levels for Hepatitis B and Hepatitis C

This calculator is in line with the Infected Blood Compensation Scheme Regulations 2025 for people who are:

• infected

• representing estates

• affected

When considering the evidence IBCA applies the wider definition of research explained in the Infected Blood Inquiry Additional Report chapter on Unethical Research.

The Minister considers whether the £10,000 (£15,000 for Treloar’s pupils) should in justice be increased and further decides what sum he considers accords most closely with the general public’s sense of justice and fairness in respect of an individual being subject of research without informed consent.”

Government response to the consultation

Anyone who received treatment for a bleeding disorder in the UK before 1986 will now be eligible for additional compensation through the Unethical Research award. The value of these awards has increased.

·         Those who were treated as adults will receive an award of £30,000.

·         Those who were treated as children will receive an award of £45,000.

·         Children who were treated whilst attending Treloar’s will receive an award of £60,000.

Inquiry recommendation:  people who were infected early in life or in working life before they had been able to realise their potential. It acknowledged that in the case of a child ‘it is unusual for there to be any evidence which will show on balance of probabilities that earnings would be any higher – or any less – than median earnings. However, it suggested that there could be cases where the evidence is strong that the potential for higher-than-average earnings was real and gives the case of someone who has started professional training with every apparent prospect of succeeding but is then infected and therefore unable to pursue their career. Inquiry recommendation: “‘x’ be removed from the equation set out in Regulation 7.”

Government response to the consultation

Financial Loss: More compensation will be available for people who would have had the potential to earn higher than average if it weren’t for the impact of the infection on their life, but who do not have actual evidence of higher earnings.

We can confirm that payslips will not be the only form of evidence that IBCA accepts. The regulations underpinning the Exceptional Loss award do not limit the types of evidence that IBCA is able to accept. This is so that the regulations do not inadvertently prevent people from accessing the award when they should be able to claim it. It means a wide range of evidence can be used by claimants.

We will introduce a new £60,000 award for infected people who can show that they had entered or had an offer to enter a career where the median gross salary is 10% higher than the gross median earnings in 2023, but who were unable to progress this career due to their infection.

Care:   Government will remove a 25% reduction applied to past Care compensation for people who choose to receive support payments for life. IBCA will use both (averaging and   year-by-year calculation) ways of calculating past Financial Loss. This means whichever option gives a claimant a higher value award will be used to calculate their compensation. This will be automatically calculated by IBCA.

“The Government reconsider whether to maintain its rejection in February 2025 of the recommendations of Sir Robert Francis KC and advice from the Infected Blood Inquiry Response Expert Group of August 2024, which was expressly accepted at the time by the Government, to introduce (as one of six health impact groups which would justify a severe health condition award) the following for people infected with Hepatitis B and Hepatitis C.

Government response to the consultation

‘Other Hepatitis C associated extra hepatic disorders resulting in long-term severe disability. This includes those currently assessed as the following category on IBSS:

·         Hepatitis Special Category Mechanism (EIBSS)

·         ‘Severely Affected’ Hepatitis C (SIBSS

·         Hepatitis C Stage 1 Plus (WIBSS)

WIBSS - From 2019 an Enhanced Payment Scheme for those beneficiaries with Chronic Hepatitis C (Stage 1) infection, who are experiencing significant mental health issues or post-traumatic stress (PTS) became available. There is no requirement for medical input into the application process.  Beneficiaries will simply be asked if they are suffering from any mental health issues or post-traumatic stress; whether they feel these issues are related to their infection from contaminated blood or blood products; and whether the symptoms are affecting their ability to carry out day to day activities.  If the answer to these questions is yes, there will be no need for further assessment because the person has already been diagnosed with hepatitis C infection from infected blood or blood products.

·         Hepatitis C Stage 1 Enhanced Payments (NIIBSS)’”

Everyone receiving this new award will receive uplifts to their Financial Loss and Care awards from 2017, regardless of when SCM was awarded.

“People infected with Hepatitis B or C who have received a course of treatment with or based on interferon should be recognised as entitled to core awards at Level 3.”

The Inquiry went on to say that treatment with interferon should be recognised through Level 3 or the introduction of a new infection severity band. The Inquiry said, “the choice – [Level] 3 or [Level] 2B – is for his [the Minister’s] judgment”.

Government response to the consultation A ‘Level 2B’ category of Financial Loss has been created for people who suffered side effects of interferon treatment, with payment for each round of interferon. Financial loss will be calculated at a rate of 80% for two years.

·         A one-off uplift to the Injury award of £10,000 will go to people infected with hepatitis C and B currently on level 2 banding (chronic).

A summary of the new Level 2B infection severity band and what it means for eligible people’s compensation is below:

·         Eligibility            

Anyone who can evidence treatment with interferon (with or without other drugs, such as ribavirin) will automatically qualify for Level 2B, without having to prove the duration of their treatment, side effects, financial loss or care needs.

·         Injury award     

Anyone eligible will receive a £10,000 uplift on the current Level 2 band, bringing the total value of the Injury award to £70,000.

·         Financial Loss award      

Anyone eligible will receive a two-year uplift of financial loss to 80% (compared to 40% at Level 2). The total award value would therefore be £23,726 per annum (80% of UK median salary plus 5%) for two years (the year in which interferon treatment was started and the year after) before reverting to the Level 2 level.

·         Care award        

Anyone eligible will receive one additional year of low-level care (16.5 hours per week, for the year) compared to Level 2.

“The approach of the Infected Blood Psychology Service is adopted so that both a diagnosis made by a psychiatric professional and a formulation-based opinion of all qualified psychological and counselling professionals are accepted as sufficient evidence of severe psychological harm and that such evidence should qualify a person for a supplementary Severe Health Condition award without the additional need to demonstrate a period of consultant-led secondary mental health treatment or assessment/treatment as an inpatient.”

Severe Psychological Harm which cannot be evidenced under the current system could be compensated through new SCM categories offering additional financial loss and care compensation for psychological harm.

Government response to the consultation

new SCM award will broaden the criteria to recognise psychological harm from the infected blood scandal, and therefore the best way to give people more appropriate compensation for the harm they experienced.

It provides people with a Financial Loss award of £17,794 (post-effective treatment) or £20,760 (before effective treatment) per year until retirement age (66 years); and a Care award of £5,460 per year to cover weekly domestic and ad hoc care for life. The Severe Health Condition award for Severe Psychiatric Conditions exists to still compensate for the most severe harm at 100% financial loss.

This means the Scheme will now offer three levels of support for mental health:

·         The core route: for the general mental injury, distress, and stigma that almost everyone has suffered.

·         The new SCM award: for people whose poor mental health because of their infection or treatment has had a major impact on their ability to work and live their daily lives, meaning they suffered more financial loss and required more care than the core route compensation has given them

·         The Severe Health Condition award for Severe Psychiatric Conditions: This will stay in place for those who have a diagnosis of a severe psychiatric disorder and have had specialist hospital care, leading to total inability to carry on working.

Government response to the consultation

 Some affected people will receive more core compensation. To reflect the unique and long-lasting impact of their experiences, the following affected people will receive a 50% uplift to their Injury award:

Children and siblings affected whilst under the age of 18, so that those affected in childhood receive 50% uplift of their core compensation.  The uplift will be given to eligible people alongside their core route claim.                                  

The Inquiry a commented on the situation of people who were infected early in life or in working life before they had been able to realise their potential. It acknowledged that in the case of a child ‘it is unusual for there to be any evidence which will show on balance of probabilities that earnings would be any higher – or any less – than median earnings. However, it suggested that there could be cases where the evidence is strong that the potential for higher-than-average earnings was real and gives the case of someone who has started professional training with every apparent prospect of succeeding but is then infected and therefore unable to pursue their career.

Government response to the consultation

We will introduce a new £60,000 award for infected people who can show that they had entered or had an offer to enter a career where the median gross salary is 10% higher than the gross median earnings in 2023, but who were unable to progress this career due to their infection.

This also applies if you receive a payment from the estate of a deceased infected person.

The means-tested benefits are:

• Universal Credit (UC)

• Income Support (IS)

• income-based Jobseeker’s Allowance (income-based JSA)

• income-related Employment and Support Allowance (income-related ESA)

• Housing Benefit (HB) - administered by local authorities

• Pension Credit (PC)

• Council Tax Reduction - administered by local authorities

You will need to tell DWP about your payments and any income or savings by calling the number at the top of letters they have sent you about your benefits.

If you are currently receiving means-tested benefits, or think you might receive them in the future, it is important you keep your compensation payment in a separate account. You should not mix your compensation payment with any existing money you already have. This is because any interest, gains or profit you make from investing your compensation payment might be considered when assessing your eligibility for means-tested benefits.

If you invest your payment in stocks and shares, any gains you make will not affect your entitlement to current or future means-tested benefits when sold.

If you use your payment to purchase property, any profit you make will not affect your entitlement to current or future means-tested benefits when sold.

Any interest, gains or profit you make must be a direct result of investments made using your compensation payment only.

If you combine your compensation payment with any existing savings you may have, any interest, gains or profit you make might be considered when assessing your eligibility for current or future means-tested benefits.

You will need to provide evidence that investments were made from your compensation payment. You can do this by keeping your compensation payment in a separate bank account from any other savings you may have. If you have any existing savings, you should request a bank statement to confirm the date and the amount.