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Health

Apologies to victims of ‘the greatest scandal in the history of the NHS’

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WALES’ health secretary apologised to victims of the contaminated blood scandal, describing it as the greatest treatment scandal in the history of the health service.

Leading a Senedd debate on the infected blood inquiry, Eluned Morgan said the Welsh Government has started work to consider Sir Brian Langstaff’s recommendations.

More than 30,000 people in the UK were infected with HIV or hepatitis C by contaminated blood between 1970 and 1991, with more than 3,000 people dying as a result.

She said: “We must do better than the denials, the false reassurances, the complacency, the cover-ups, the obfuscations and the repeated failures at an individual, institutional and government level that characterised and compounded this awful tragedy.”

Although the scandal predates devolution by decades, Baroness Morgan apologised to all those who were infected with tainted blood or have been affected by the disaster.

Mabon ap Gwynfor told the chamber Sir Brian’s report was an “utterly damning indictment of an entrenched culture of institutional abuse, governmental neglect and political obfuscation”.

Plaid Cymru’s shadow health secretary hoped the report would prove a watershed moment in addressing an imbalance of power at the heart of the criminal justice system.

He said: “From the Hillsborough disaster to the Post Office Horizon scandal, the wheels of justice can often turn far too slowly when it comes to the misdemeanours of the wealthy.”

Sam Rowlands, his Conservative counterpart, described the infected blood scandal as one of the most grotesque miscarriages of justice in British history.

He welcomed the Victims and Prisoners Bill, which will create an arm’s-length body to administer compensation to victims, passing through Parliament pre-general election.

Julie Morgan, who has campaigned on the issue for decades as an MS and an MP for Cardiff North, paid tribute to those who had their lives incomprehensibly turned upside down.

She said: “When haemophilia patients were told about their HIV diagnosis, it was a terrifying ordeal – a death sentence, with life-expectancy estimates of between two and five years.

“The stigma was horrendous and the majority of patients kept their status secret.”

Stressing the importance of implementing the recommendations, Ms Morgan warned many people are worried about false hope because it has taken 40 years to get to this point.

Plaid Cymru leader Rhun ap Iorwerth, who chairs the Senedd’s cross-party group on haemophilia and infected blood, agreed that the fight for justice must continue.

Mark Isherwood, the Conservative MS for North Wales, said the five-year inquiry found infected blood was not an accident and was avoidable.

He said: “Contaminated blood has had and continues to have a devastating impact on the lives of thousands of infected people and their families.”

John Griffiths, a Labour backbencher, who has represented Newport East since 1999, joined other members in paying tribute to campaigner Lynne Kelly, who chairs Haemophilia Wales.

Highlighting the stigma around HIV/AIDS at the time, he said the family home of Colin John Smith, who died aged seven weighing only 13lb, was daubed with abuse and graffiti.

Mr Griffiths told the chamber: “It was a terrible scandal and indictment of the systems at the time – and so many families suffered in the way that these families did.”

Plaid Cymru’s Sioned Williams raised the concerns of two sisters from the Swansea valley, whose father Arwyn Davies died in 1992 due to the “appalling, unforgivable” scandal.

She said: “To date, children who lost parents, like Rhian and Sharon, have never been provided with compensation or recognition of their father’s death. They haven’t even received a letter of apology from their local health board.”

Hefin David, who is vice-chair of the cross-party group, paid tribute to campaigners in his constituency, including Nicholas Moran, Susan Hughes, Janet Morgan, and Kirk Ellis.

Wearing a tie in the campaign’s colours, the Labour MS for Caerphilly raised Mr Ellis’ concerns about the UK Government’s proposed lump-sum compensation scheme.

Dr David said: “He points out that in Scotland the Scottish Government has guaranteed that ongoing current support payments are for life, as well as the lump-sum compensation payments proposed by the UK Government in response to Sir Brian’s report.”

Outside the Senedd, Dr David said: “It has taken us a long time to get to where we are today, and it is a tribute to the hard work of campaigners and all those who have been affected by this scandal, whether directly or indirectly. 

“The role of my constituents who have regularly contacted me about this issue over the years cannot be understated.

“I have done a lot of work with Kirk Ellis in particular, who is from Caerphilly. These residents wanted me to tell their story of how the infected blood scandal affected them and their loved ones, but they also want to raise concerns about how the UK Government could implement a proposed compensation scheme going forward”.

Dr David highlighted the need for the UK Government to work with the Welsh Government and implement the report’s recommendations “in full and without delay”.

Plaid Cymru’s Luke Fletcher said Debroah James, a constituent from Bridgend, has fought for 42 years to uncover the truth of the death of her brother, who was a police officer.

He said: “People in positions of authority vilified these families for raising concerns, accused them of lying, accused them of giving life to rumours. Corruption is the long and short of it, isn’t it – a bid to save money. What an indictment of our system.”

Labour backbencher Jenny Rathbone agreed that it is more than a treatment scandal, saying: “This is about a criminal cover-up.”

The Cardiff Central MS backed Sir Brian’s calls for a legal duty of candour for civil servants and ministers to ensure they are not “continuing to be less than candid with the truth”.

Acknowledging concerns about unrecognised cases, Baroness Morgan said part of the issue is problems with NHS records that are required to make compensation claims.

She said the Welsh Government has established a new infected blood inquiry group, chaired by Push Mangat, the new deputy chief medical officer, to consider the next steps.

She explained: “It will work with health boards, the Welsh Blood Service, Public Health Wales and policy officials to ensure we look at the wrongs of the past and work together to ensure this can never happen again.”

Closing the debate on June 4, Baroness Morgan said: “Tonight I think we unite as a chamber and as a parliament, and I’m sure you’ll join with me to pay tribute to those who have suffered as a result of this – the greatest scandal in the history of the NHS.”

MSs unanimously supported the Welsh Government motion and Plaid Cymru amendments.

Health

‘We are on our own’: Unpaid carers forced to ‘beg’ for support

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UNPAID carers are being left to “pick up the pieces” of a broken system due to a lack of respite, unsafe hospital discharges and carer’s assessments that result in “nothing at all”.

The warning came as the Senedd’s health scrutiny committee began taking evidence for an inquiry on access to support for more than 310,000 unpaid carers across Wales.

Chris Kemp-Philp, from Newport, who has been a carer for 33 years, gave up her career to become a full-time carer after her husband medically retired from the civil service in 1990.

Ms Kemp-Philp, whose husband died in April, told today’s (December 4) meeting: “I thought he’d been really badly treated… The last four months of his life were dreadful for both of us.”

She was only offered an updated carer’s needs assessment – a right under the 2014 Social Services and Wellbeing (Wales) Act – the day after her husband died.

Ms Kemp-Philp did not realise she had become a carer at first. “But, of course, having lost two incomes and to survive on a half civil service pension wasn’t great,” she said.

She told the committee how the couple “shielded” during the pandemic, saying: “For the past five years, basically, apart from going to a hospital or… a medical facility – I didn’t leave the house because if I’d have gone out, I could have brought something home.

“So, we spent five years literally avoiding people. The experience was unpleasant, I had two great-grandchildren born in that time and I only saw them on video.”

Ms Kemp-Philp said her husband was “pingponged” back and forth after unsafe discharges from hospitals in Gwent. He was put in a car by two nurses then she had to get him out on her own at the other end, with clinicians effectively telling her: it’s your problem now.

“Every time he was sent home, nobody came to help at all,” she said, explaining how she struggled to cope and her husband’s death brought a tragic sense of relief.

Judith Russell, who moved back to Wales to care for her mother 23 years ago, told Senedd Members the responsibility grew greater over the years.

Carer Judith Russell
Carer Judith Russell

Ms Russell, whose mother died last Saturday on the eve of her 102nd birthday, told the committee: “It’s been my privilege to care for her but I wish other people—I wish there had been more actual care for her. That’s it.”

Ms Russell also cares for her husband who has Alzheimer’s disease, acts as guardian for her disabled sister and cooks every week for her sister-in-law.

“It’s quite a responsibility,” she said. “My life is taken up with caring. I didn’t actually know I was a carer, I cared for my mother because she was my mother – I looked after her, of course I did – and it wasn’t until about three years ago that I identified as a carer.”

Ms Russell warned: “All through this last 23 years, I’ve had to fight and struggle to find things out… there’s very, very little help out there.”

She said she was given a carer’s assessment earlier this year but “there was nothing they could offer me, quite frankly – nothing at all”.

Ms Russell told Senedd Members: “We had a diagnosis [but] there’s no offer of help, there are no directions to find help, somebody to point you – you should be doing this, this is available, that’s available – nothing, you’re on your own completely.”

She joined the Bridgend carers’ group which opened a door to other people grappling with the same weight of responsibility and helped navigate the system. Ms Kemp-Philp added that joining a similar peer support group saved her life.

Ann Soley, who is originally from France and has been living in Wales for eight years, described how life was turned upside down when her British husband had a stroke.

Ann Soley

She said: “We are stressed, we are lost. A lot of carers have lost their friends, that is just unbelievable for me because I realised society is not there – there is no compassion.”

Kaye Williams, who works at Bridgend carers’ centre and is herself a carer, warned the witnesses’ experiences are commonplace across the country.

Sue Rendell, from Caernarfon, has cared for her husband who has vascular parkinsonism for nearly 14 years and was waiting for a doctor to call as she gave evidence remotely.

She told the committee: “You go in in the morning to see if he’s still breathing to be honest. We’re at the later stages of his disease and it’s physically demanding, it’s mentally demanding and it’s administratively difficult as well… it’s just very wearing.”

Ms Rendell, who was shattered after a late night caring, said she has tried to get respite but has been told there’s nothing available in Gwynedd nor Anglesey for her loved one’s needs.

She told the committee unpaid carers in Wales are “expected to pick up the pieces” but “nothing much happens” after an assessment. “Fine words butter no parsnips,” she said.

Ms Russell added: “As carers, we save the government millions… and I asked for some help this week actually. I’m 258th on the list for a hip replacement… and I asked the doctor: as a carer, couldn’t I possibly go up the list a little bit? ‘No, we’re not allowed to do that.’

“It’s the only thing I’ve ever asked for.”

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Education

‘Sink or swim’: Young carer sat exam hours after 3am hospital ordeal

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A TEENAGE carer sat a GCSE exam only hours after getting home from a hospital at 3am following a family emergency, a Senedd committee has heard.

The warning came as witnesses highlighted a “sink-or-swim” reality where children as young as three are taking on caring roles while feeling invisible to schools and social services.

Elektra Thomas, 15, who cares for her autistic, non-verbal brother and her epileptic sister, was part of a remarkable and articulate trio of teenagers who gave evidence to a new health committee inquiry on access to support for unpaid carers today (December 4).

The teenager helps her brother Blake get ready for school in the morning and helps him communicate by acting as his voice, which she has done since about three years old.

Ms Thomas told Senedd Members her sister has two children, “so I’m either handling her having a seizure, running around with her medication… or I’m looking after her kids”.

She said: “I’ve been having school assessments at the same time she’s had a seizure. I’ve been in ambulances waiting for her to get into a hospital while also studying.”

Ms Thomas explained how she is unable to focus on her schoolwork if her brother has had an overwhelming day. “I can’t focus on myself and I don’t have time for myself,” she said.

The teenager, who is from Carmarthenshire, described how she was once in hospital until 3am then sat a test – which went towards her GCSE grades – that same day.

Ms Thomas warned young carers do not have time to manage their own mental health, saying: “I didn’t have time for myself, I had time for my brother and sister and that was it.”

She said: “As a young carer who wasn’t noticed for a decade, it was pure manic: I had no coping skills, I had no support – and this has been going on since I was about three or four.”

Ffiôn-Hâf Scott, 18, from Wrexham, who is working while studying in sixth form, has similarly been a carer since she was four years old.

“I used to care for my mum and my sister,” she told the committee. “My sister used to be in a psychiatric ward, she was there for seven years.

“And I care for my mum because she’s diabetic, classed as disabled, has a long list of mental health issues, she has in the past suffered a stroke and had cancer.

“I don’t know how she’s still standing.”

Young carer Ffiôn-Hâf Scott
Young carer Ffiôn-Hâf Scott

Ms Scott said: “The main challenge right now is looking after myself and learning that you actually have to keep yourself afloat… to keep looking after someone else.

“I think for a very long time I ran on nothing because of my caring role or I didn’t think about the things I needed to do for me, so respite and things like that.”

The Welsh Youth Parliament member warned a lack of support for young carers has been normalised, saying she has had to explain herself 70 different times while aged 12.

Ms Scott said: “I remember going to my teacher and saying – we had a piece of coursework – look I can’t do this right now… you’re going to have to fail me…

“Their response was just ‘well, you have too much on your plate and you need to take things off your plate’ and I was like: it’s very bold of you to stand where you’re stood and say that to me because it’s not a choice to take on the things that we do take on.”

She recalled receiving a phone call about her mum collapsing moments before a maths test and expressed concerns about the prospect of mobiles being banned in schools.

Albie Sutton, 16, a young carer from north Wales, looks after his disabled mother by doing things such as cleaning the house, budgeting and cooking for the family every day.

Albie Sutton
Albie Sutton

Mr Sutton said: “It’s a real struggle for her to move around the house, to even do stuff like getting dressed or moving to the toilet by herself… so I’ve got to help her.”

The teenager estimated his caring role takes up about 25 hours a week and makes it difficult for him to pursue some of his hobbies such as competing in powerlifting.

“My mind feels like a hive of bees,” he said. “There’s so many things going in and out… I get home at the end of the day and I’m like ‘oh my God, I’ve got to do this, I’ve got to do that’.”

Warning of the mental stress, he added: “It’s also really difficult for me to socialise… I feel very isolated in my caring role, especially at home. I’m always housebound, I never get the opportunity even just to go out in my local town.”

Mr Sutton told Senedd Members it plays on his mind that his younger brother may have to take on responsibility. “It’s got me debating whether I can go to university,” he said.

He called for a Wales-wide campaign to raise awareness among educators and employers of the issues young carers face and how to recognise the signs.

Ms Thomas agreed: “I’ve had multiple teachers look at me and go ‘what’s a young carer, sorry?’. I’ve had pharmacists go ‘are you sure you’re a young carer?’ and it baffles me.”

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Health

Fresh alarm over life expectancy in Wales as CMO warns of ‘prevention revolution’

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WALES is living sicker for longer, the Chief Medical Officer has warned, as new figures show a worrying drop in the number of years people can expect to live in good health – with women hit hardest.

The findings, published today in Dr Joanne Absolom’s first annual report since taking over from Sir Frank Atherton, have prompted immediate calls for the next Welsh Government to overhaul its approach to public health after the 2026 Senedd election.

Dr Absolom says Wales must now move decisively away from a system that largely treats illness towards one that prevents people becoming ill in the first place. Her report warns that healthy life expectancy is falling across the country and highlights widening inequalities between communities.

Responding to the findings, Darren Hughes, Director of the Welsh NHS Confederation, said the message could not be clearer.

“NHS leaders in Wales welcome the report’s call for a prevention-first approach,” he said. “We have to move from simply treating illness to actively promoting wellbeing, and that means a proper cross-government strategy that tackles inequality and gives people the support to take control of their own health.”

He added that every pound spent on proven public health programmes delivers an average return of £14 – evidence, he said, that prevention “makes moral and financial sense” at a time when NHS budgets are under extreme pressure.

“It is deeply concerning to see healthy life expectancy falling, particularly for women,” he said. “Investment in prevention is vital if we are to make our health and care services sustainable.”

While health boards, councils and community groups are already working on preventative programmes, the Welsh NHS Confederation says Wales needs far greater ambition – and the NHS must be given the tools and flexibility to scale up what works.

The Chief Medical Officer’s report also raises serious concerns about NHS workforce shortages and urges significant investment in digital technology to improve productivity and patient outcomes.

Mr Hughes said all political parties should “take heed” as they prepare their manifestos for next year’s Senedd election.

“Those seeking to form the next Welsh Government have a clear blueprint here. We cannot keep doing the same things and expect different results. Prevention, workforce and digital transformation have to be top priorities.”

The Welsh NHS Confederation — which represents all seven health boards, the three NHS trusts, HEIW and Digital Health and Care Wales — has already outlined its detailed priorities in its own election document, Building the health and wellbeing of the nation.

With the Senedd election just over a year away, today’s report adds fresh, authoritative evidence that Wales needs a radical shift in how it approaches health if it is to secure a healthier future for all.

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