We will have justice – infected blood victims speak out as inquiry reopens
People given infected blood and blood products in one of the worst treatment disasters in NHS history have said they will 'have justice' as hearings reopened into the scandal.
Sir Brian Langstaff, chairman of the Infected Blood Inquiry, is holding two days of special hearings to examine the 'timeliness and adequacy of the Government's response to compensation'.
Campaigners have voiced concerns surrounding the compensation scheme, which was announced last year, with some victims saying they fear they will not live to receive their payout.
Groups representing people infected and affected by the scandal and people infected themselves are giving evidence on Wednesday morning.
Andrew Evans, from the campaign group Tainted Blood and who was infected with HIV and hepatitis C through contaminated blood products during treatment for haemophilia as a child, said: 'We have around 2,100 members, all of whom are in a desperate state at the moment since the announcement of the Government's compensation package and things that have unfolded since.'
Nigel Hamilton, chairman of Haemophilia Northern Ireland, said: 'I started off as a haemophiliac from birth. I had a liver transplant as a result of hepatitis C in 2018.
'I lost a twin brother Christmas day just over a year ago and I have several cousins I have also lost within the family.
'I believe in justice. I believe we have to be here today, thanks to the public inquiry and Sir Brian to ensure that we get the opportunity to repeat that we need justice.
'We are entitled to justice and we will have justice.'
Alan Burgess, a campaigner who was co-infected with HIV and hepatitis C while receiving treatment for haemophilia, said: 'I can't believe we are back here today.'
When asked about the quality of engagement from the Cabinet Office and the Infected Blood Compensation Authority (IBCA), Mr Burgess said: 'I'd like to say that they engaged with us, but they didn't.
'They talked down to us. They were condescending. They had a scripted answer for everything we had.
'To be honest with you, it's almost a waste of time being there. You know, they weren't going to take any notice of what we said.'
Mr Burgess said he told IBCA and the Cabinet Office that the mental states of the infected and affected were 'shocking' and it was 'disgraceful, immoral, scandalous, contemptible' for them to in discussions about compensation after 12 months.
He also told the hearing victims were dying while the process was ongoing, with one of his friends dying just weeks ago.
'There's people dying without seeing this compensation paid. I didn't expect any sympathy, but we didn't even get any empathy,' Mr Burgess said.
More than 30,000 people in the UK were infected with HIV and hepatitis C after they were given contaminated blood and blood products between the 1970s and early 1990s.
Some 3,000 people died as a result and survivors are living with lifelong health implications.
Campaigner Carolyn Challis, known as Caz, was infected with hepatitis C when she received blood transfusions during chemotherapy treatment for lymphatic cancer between 1992 and 1993.
The mother-of-three from North Devon said: 'We feel gaslit, marginalised and abused by successive governments that purport to care, but evidently do not.
'We're suffering from sustained trauma. We should not still be fighting.'
Cabinet Office minister Nick Thomas-Symonds has been called to give evidence on Wednesday afternoon while Infected Blood Compensation Authority (IBCA) officials will be quizzed by inquiry lawyers on Thursday.
In her October budget, Chancellor Rachel Reeves allocated £11.8 billion to compensate victims, administered by the IBCA.
As of April 24, some 475 people have been invited to make a claim and 77 payments have been made totalling more than £78 million, according to IBCA figures.
Opening the hearing, Sir Brian said: 'The decision to hold these further hearings was not taken lightly.
'It is no secret that the Inquiry has received letter after letter, email after email, call after call expressing worries and concerns about how compensation is being delivered.
'The slowness and uncertainty about when someone might expect to receive compensation are central kernels. They are not however the only ones. These matters need to be explored in public.'
He added: 'The Inquiry will do everything in its power to identify action that can be taken by the Government and by the infected blood in compensation authority to improve the delivery of compensation and to ensure that justice is done.
Sir Brian said that the number of those infected and affected who were in attendance at the hearings 'demonstrate that the complaints, worries, distress and frustrations that have been expressed to us are not just those of an outspoken few'.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Telegraph
23 minutes ago
- Telegraph
Brighton GP practice investigated for prescribing trans hormones to children
An investigation into a GP clinic in Brighton that prescribed transgender hormones to children has been launched by the NHS. The WellBN GP practice, which runs three clinics in Sussex, was ordered by health service leaders to stop prescribing cross-sex hormones to under 18s and the NHS has now launched a 'rapid investigation'. The NHS Sussex Integrated Care Board, which oversees the region's health services, said that the actions of GPs at WellBN 'may fall outside of national clinical policy and guidance'. 'Following concerns raised about some prescribing for children and young people by WellBN in Brighton and Hove, that may fall outside of national clinical policy and guidance, we are working with NHS England and have launched a rapid investigation into this activity to determine the most appropriate care and treatment for these patients,' it said. The administration of cross-sex drugs, also known as gender-affirming hormones, involves giving hormones such as testosterone to help someone change their physical appearance. They are different to puberty blockers, which stop the onset of puberty by suppressing the release of hormones. The Cass review, led by the paediatrician Baroness Hilary Cass, said all under 18s questioning their gender should be seen by a team of experts for a range of conditions, including mental health issues and neurodevelopmental disorders such as autism, before any treatment is considered. 'Extreme caution' recommended The independent review concluded that medical pathways to change genders had been 'built on shaky foundations' and called for puberty blockers to be banned, citing the 'weak evidence' to support their use in this group of patients. It urged 'extreme caution' in relation to cross-sex hormones in under 18s. But WellBN continued to prescribe the drugs, claiming on its website that it would prescribe the hormones to patients with a referral to a gender identity clinic while they waited for an appointment, and that it would also arrange a referral for any patients who did not have one. The GP practice is already the subject of a legal challenge by the parents of Child O, an anonymous 16-year-old boy, who claimed their child was prescribed cross-sex hormones without having been properly assessed by a gender-identity clinic and without their knowledge. The clinic previously said it had 'fully considered and responded back to the correspondence received from the family's representatives and will engage fully on any next steps'. It also said it is 'confident that any young patients under the age of 18 are assessed in accordance with good medical practice', adding: 'Gillick competence and bodily autonomy are at the heart of all care we offer and this framework is consistently applied.' 'Trans health hub' The practice operates a 'trans health hub' and patients - of which it says around 2,000 are trans or non-binary - can receive annual check-ups with 'a supportive and affirming clinician'. It has defended its prescribing of hormones to under 18s based on an 'informed consent pathway', which it says 'sets out the risks, potential side effects and reversible and irreversible intended effects of hormone therapy'. It comes after Wes Streeting last month ordered a review into the use of cross-sex hormones in children, which could join puberty blockers in being banned for use in under 18s to treat gender dysphoria. NHS Sussex said the majority, but not all, of the children being prescribed cross-sex hormones by the clinic lived in the region and that it would be reviewing each case to consider next steps for their treatment and care. 'The cohort of patients whose cases are being reviewed are all aged under 18, and for whom WellBN is prescribing or arranging the supply of medication for gender dysphoria,' it said. 'There will be a process to review their notes, and consider next steps in their treatment, in line with national guidance and clinical advice.' Temporary pause It said there would be 'different outcomes for different patients', with some referred to specialist NHS gender services, others seen by local mental health services, while some would have their hormone treatment reviewed. WellBN revealed last week that the NHS had 'forced us to temporarily pause initiating new NHS prescriptions for gender-affirming care to anyone under the age of 18', including a ban on taking on prescriptions from private sector providers. It vowed to try to 'turn this decision around' and said it would be meeting with NHS Sussex. Rachel Cashman, co-founder of community group PSHE Brighton, said she welcomed the investigation, adding that parents she had spoken with had been 'concerned' about WellBN's approach to treating under 18s with gender issues for some time. ' Gender distressed children deserve the most clinically efficacious treatment,' she said. 'PSHE Brighton welcomes an investigation by NHS England into the care provided by this service'.
Scotsman
25 minutes ago
- Scotsman
Scotland is one of UK's least obese regions
Expert breaks down how UK obesity rates have become a mirror of deeper systemic issues, affecting millions across income levels. Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Obesity has become one of the UK's most pressing public health challenges. According to Fantasy MMAdness and NHS Digital, 26% of adults in England are classified as obese, with rates even higher in Scotland, Wales, and Northern Ireland. Among children aged 10 to 11, nearly 1 in 4 are living with obesity: a worrying trend that continues to rise post-pandemic. Obesity significantly increases the risk of serious conditions such as type 2 diabetes, heart disease, stroke, and some cancers. It also places major strain on the NHS. Estimates suggest that obesity costs the UK economy over £58 billion a year, factoring in lost productivity, social care, and NHS treatment costs. Advertisement Hide Ad Advertisement Hide Ad Worryingly, obesity rates are not evenly distributed. People in more deprived areas are more than twice as likely to be obese as those in wealthier communities. These disparities point to deep-rooted social and environmental challenges that go beyond personal willpower or diet. Scotland is one of the UK's least obese regions Top 5 Most Obese UK Regions North East - 33.5% West Midlands - 32.1% Yorkshire and the Humber - 31.6% East Midlands - 30.8% North West - 30.6% Top 5 Least Obese UK Regions London - 21.3% South East - 24.2% South West - 25.5% East of England - 26.4% Scotland (Urban) - 27.1% The Cost to Public Health and the NHS Obesity-related conditions are responsible for tens of thousands of premature deaths in the UK each year. NHS England reports over 1 million hospital admissions in 2022/23 where obesity was a contributing factor. The economic cost is vast: obesity-related illness contributes to rising waiting lists and impacts workforce health, especially in deprived regions. Policy Action and Missed Opportunities Despite multiple government strategies: from sugar taxes to calorie labelling laws, progress remains slow. The 2018 Childhood Obesity Plan set bold targets, but many recommendations have been delayed or diluted. Campaigners argue that voluntary agreements with the food industry have proven ineffective and that bolder legislative action is needed. In early 2024, the Royal College of Physicians called for a national obesity taskforce, emphasising a need for systemic change in urban planning, school food standards, and advertising regulation, particularly restrictions on junk food ads aimed at children. Looking Ahead: Prevention Over Treatment Advertisement Hide Ad Advertisement Hide Ad Experts agree that prevention, not just treatment, must be at the heart of the UK's obesity response. This means addressing the wider determinants of health: poverty, housing, access to green spaces, and community-level resources. Local councils, GPs, and employers all have a role to play in shifting the tide. 'Obesity in the UK reflects deep social inequalities. The highest rates are concentrated in areas with limited access to healthy food, poor public transport, and fewer recreational facilities. More than being a personal responsibility, reforms on obesity should lie in the structures people live within. We must move beyond soft-touch interventions and toward policy that reshapes the environment. That includes subsidising healthier food options, expanding weight management services on the NHS, and ending junk food marketing during children's TV hours. Without this, we risk sleepwalking into an even greater public health crisis,' says Fitness Expert, Kelly Davis from Fantasy MMAdness.
Daily Mail
an hour ago
- Daily Mail
Woman, 21, forced to 'glue eyelids open' just so she can see due to rare condition - but doctors say there's no cure
A woman who thought she had bad hayfever was diagnosed with a rare condition that means she sometimes has to use glue and tape just to keep her eyes open. Tia-Leigh Streamer, 21, from Dorset was baffled when she woke up in May 2023 with a drooping eyelid. Initially assuming it was seasonal allergies, it wasn't until months later that she was revealed to suffer with a disorder - blepharospasm - which causes muscles around the eyelids develop an involuntary spasm and cause the lids to twitch, flutter or blink uncontrollably. Doctors at Royal Bournemouth hospital trialled Botox injections in her eyelids in March last year, and since then she hasn't been able to open her eyes without the jabs. When the Botox wears off, the only way she can see is by taping and gluing her eyelids or holding her eyes open with her hands. Even when the jabs are effective, sunlight, car headlights and computer screens can trigger Tia-Leigh's eyes to close. In severe cases sufferers may be unable to open their eyes due to excessive eyelid spasm. Doctors do not have a cure but are continuing to trial different volumes of Botox in her eyelids. 'I have the same level of sight as a visually impaired person but I've got nothing wrong with my eyesight,' Tia-Leigh, who was an aspiring trainee accountant, explained. 'I know it's neurological but they don't know what causes it which makes it worse for me, because if they could say it's caused from this, I think it would make me feel slightly less in the dark. 'To be told I've got this for the rest of my life and not know why is a hard thing to deal with.' She admitted she's 'not been coping very well' and was prescribed antidepressants half-way through the ordeal. 'I didn't get along with them,' she continued. 'I tried therapy, I've tried hypnotherapy but nothing was helping. 'The longer it's gone on I've gotten used to it but there are still days where I get really down about it. Especially as the Botox runs out.' Tia-Leigh added that the longer she grapples with the condition, the more her body will get used to the injections and 'it won't work anymore'. 'I have them done every eight to 10 weeks at the moment. It was 12 weeks. But I only get about three to five weeks where it actually takes any effect,' she remarked. 'The rest of the time I have to physically hold my eyelids open to be able to see anything. 'When I glue or tape them open I can't blink at all. The doctors have said the longer I do that for then I've got more chance of actually damaging my eyes and then possibly losing my sight, which I don't want to do.' Tia-Leigh has even had bruises on her eyelids from the tape before. 'It's hard,' she admitted. 'Because I've either got no sight or one hand essentially.' Tia-Leigh was training to become an accountant, but has had to stop working because of her condition - ruining the plans she had for her life. 'As soon as I got ill I was basically told that this was something that I could never do because of the computer screens,' she explained. 'It was awful to be honest, I had everything planned out. I was training to do that and I was saving to move out and get married and have children and it was all taken away from me. What is blepharospasm? According to the National Eye Institute, blepharospasm (also called benign essential blepharospasm) is 'blinking or other eyelid movements, like twitching, that you can't control'. 'Eyelid twitching usually goes away on its own. But people with benign essential blepharospasm can develop severe and chronic (long-term) eyelid twitching,' the site explained. Symptoms usually start with 'small eyelid twitches that happen every once in a while'. This can increase overtime and often cause the eyes to close completely. In some cases, people also get twitches in other parts of their face. It added: 'Blepharospasm happens when the part of the brain that controls your eyelid muscles stops working correctly. 'Sometimes blepharospasm runs in families, and women ages 40 to 60 are more likely to develop it. But in most cases, doctors aren't sure what causes it.' Treatment options include Botox injections and in some cases a surgery called a myectomy - where muscle nerve tissue is removed from the eyelid - can be recommended to alleviate symptoms. The NEI recommends seeing an eye doctor if: Source: NEI 'It's the stress of it as well that makes it worse. Anytime I'm really stressed it will make my eyes closed and accounting, I found it really stressful.' For her, the biggest struggle is loss of freedom and independence. She can't go out by herself if her eyes are closed, unless someone can drop her off. Tia-Leigh avoids solo outings because she gets 'too anxious not being able to see it'. 'I'm basically inside most of the time,' she said. 'It stops me doing things I enjoy. I used to do a lot of crocheting but you need to have two hands to do that so I can't do that even when I'm at home. 'I can't go down and make my dinner because I've got one hand so I'm restricted to what I can and can't make.' Furthermore, she gas to ask her family to make her meals, and sometimes cut her food up for her. 'It's like I'm going back to being a child again because I can't use a knife and fork and see what I'm doing,' the 20-year-old added. Tia-Leigh got married in December 2024 and had to time her Botox injections to ensure she could see on her wedding day. 'I wanted to make sure that I had the Botox two weeks before my wedding because it takes my eyes about a week to open after I've had it done,' she explained. 'It was a scary day and I think that's one of the reasons that prompted us to get married so quickly. 'I wanted to make sure I was going to be able to get married and be able to have my eyes open to see what's going on.' Another future concern is having a baby in the future. 'I often have nightmares about it to be honest because even when I have Botox done, at night-time my eyes don't open,' she continued. 'Night-time is the worst, they just won't open at all. I have nightmares about a baby next to me and it's crying and I can't wake my husband up and I can't get around to help because of my eyes. 'I do know now there are things that can be put in place to help because obviously people who are blind all the time still have children.' The current solution relies on a trial and error year plan from her doctor. 'He's going to change the volume of the Botox in the top and bottom lid of my eyes,' Tia-Leigh said. 'He might change slightly where he puts the injections and he's going to be monitoring it and seeing how long it lasts. 'It's about hoping he'll be able to find a better balance so we can have some longer effects out of the Botox.' She has been documenting her experiences on TikTok, where Tia-Leigh has more than 3,700 followers.
