Brother says 51-year-old Robert is “wasting away in agony” while their 80-year-old mother struggles to cope

SAMUEL KURTZ MS has intervened in the case of a Pembroke family who say they have been left “abandoned” by the Welsh NHS, after a severely disabled man waited two years for essential dental treatment.

Mr Kurtz confirmed that his office has been in contact with the family since the end of last week, and that he will raise their concerns with the Welsh Government and Hywel Dda University Health Board at the earliest possible opportunity.

The case centres on 51-year-old Robert, who is disabled, non-verbal and relies entirely on his mother for his day-to-day care. According to the family, Robert has suffered severe dental pain for two years, during which time he has been unable to eat properly and has experienced rapid weight loss.

His brother, Alfie Probert, highlighted the situation in an emotional Facebook post that has been widely shared in Pembrokeshire. Alfie said Robert had once been a healthy sixteen stone but is now “wasting away” while the family waits for specialist treatment.

He also described the strain on their mother, who is eighty, unwell herself and caring for Robert around the clock. “We feel completely abandoned,” he wrote. “This isn’t just a backlog. This is cruelty. This is negligence. This is destroying people’s lives.”

The post has prompted a strong local reaction, with many residents tagging Samuel Kurtz and calling for urgent action.

Mr Kurtz said he shared the public’s concerns and would be seeking answers from ministers and Hywel Dda UHB as to how such a long delay could be allowed to develop for a vulnerable adult.

Hywel Dda University Health Board has been approached for comment.

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.

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.

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.”

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.”

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.

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.”