Peterborough mum of disabled son calls for urgent overhaul of the care system

A prolific fundraiser and mum from Peterborough is calling for the Government to urgently overhaul the ‘flawed care system’.

Liza Raby is hoping to raise awareness of the issues she and others encounter while fighting for suitable care for their children.

Her son Spencer Raby, 26, was born with a range of conditions that require complex care. This includes Corpus Callosum, which means the part of his brain that sends out messages was not properly formed. He also has Gilbert Syndrome, affecting his liver, and a rare genetic condition known as UPF3B syndrome which affects brain function.

Liza runs two hair salons in the area, one in Peterborough, and a second in Bourne, and has raised more than £170k for local charities over the years.

Through her work both in and out of the salon, she meets parents of children with life-long conditions that are in desperate need of better support. She is now speaking out about her own experiences, and calling on ministers to urgently address issues in the care system.

"Care is supposed to provide support, yet too often, it comes with complications that make life even harder,” she said.

"The system is flawed. There is not enough vetting of carers, not enough accountability, and not enough understanding of the emotional impact on families. While there are wonderful, dedicated carers out there, the bad experiences we’ve had often overshadow the good.”

In her role as a hairdresser, Liza often visits the homes of vulnerable adults to provide basic hair care under the supervision of carers. While providing this service, Liza claims to have witnessed one male carer fall asleep while caring for an individual with behavioural disabilities.

"For some patients, having their carers awake and present could be a matter of life or death,” she said. “This incident made me think about all the things we’ve been through with carers over the years,” she said. “I’ve had a carer steal from me before, and another who spent two hours using my phone to make a call abroad.”

Liza said that for families like hers who rely on care, letting people come into your home every day, and the lack of privacy that comes with it, can be emotionally draining.

"It’s something we have to put up with just to live a normal life,” she said. “But that doesn't mean we shouldn't speak out about the challenges and push for better standards, greater accountability, and most importantly, recognition of the emotional and psychological toll this system takes on those who depend on it.”

“And before you even get to that stage, there's another battle - securing the funding to pay for the care in the first place.

“I have to fight for Spencer’s funding each year despite the fact that his conditions are never going to get better, but every single year we have to go through the same process of applying.

“Getting government funding for carers is a process that feels deliberately difficult. It’s a system built on endless assessments, intrusive questioning, and a constant need to justify why you need help. Decisions are often made by people who have no real understanding of what life with a disability is like, and funding is frequently cut or denied, leaving families in an impossible situation.

“You’re forced to fight, to challenge decisions, to go through appeals all while trying to manage the daily reality of living with a disability. Its exhausting. It feels like you’re constantly having to prove your struggles, as if your need for support isn't obvious enough.”

When Spencer reached age 20, Liza felt the time was right for her son to move into residential care, describing caring for him at home as “an incredibly emotional time".

“After enduring constant attacks, the thoughts that ran through my mind were difficult to admit,” she recounts. “One of the hardest was the feeling that I might retaliate. That was an awful realisation. Of course, I never did, but just having that thought was deeply unsettling. Even more painful was the moment I found myself thinking, ‘I don’t like this person who is my son’. That’s a heartbreaking emotion to process. But when you’re being physically hurt day in and day out, exhaustion and frustration can push you to a breaking point.

“This is why respite care isn’t a luxury – it’s a necessity. Too many parents are at rock bottom, drained from the relentless demands of caregiving. I speak to parents who are utterly exhausted, worn down, and running on empty. Without support, it becomes unbearable. We need to acknowledge these struggles and ensure families get the help they so desperately need.”

Liza said she coped during the years of caring for Spencer at home with the help of respite and an excellent social worker, but she had to fight for that help.

"I was able to care for Spencer at home until the time was right for him to move into residential care. And while that chapter changed, my fight never stopped. I still stand by Spencer ensuring that he is well and cared for. If there’s ever a problem, I will be there. I will always be his voice, his advocate, for as long as I am here. Because that’s what love is – never giving up.

"Spencer now lives in an excellent care facility where he is truly nurtured. His days are filled with activities, outings, and engagement with the world around him. He is not just sitting inside, isolated. He is out in the community, enjoying life with young, energetic carers who can keep up with him because he never stops.”

Asked what specific changes she would like to see in the care system, Liza said: “There shouldn’t be the requirement to re-apply for care every year if that person’s condition is never going to get better.

“Better respite should also to be offered to parents of children with life-long disabilities. Some parents simply want to have a school place for their child, as this would offer a form of respite and allow them to work.”

Liza has now written to ministers to express her concerns, including Peterborough MP Andrew Pakes.

Mr Pakes told the Peterborough Telegraph: “I’d like to thank Liza for contacting me and we are getting a meeting in place to see what support I can offer.

“I commend Liza for sharing her story, and what she has seen. Sadly, she is not alone.

“I understand these struggles can be painful, and I am willing to do my part to help. The Government is working to tackle this issue. There is a 10-year plan for change and modernisation of the NHS, and we are working to deliver a long-term plan for reform of adult social care.

“I am also committed to ensuring that carers have better support, including when it comes to looking after their own health and wellbeing.”