The devoted mother banned from visiting her severely disabled son by NHS care home that wants to stop giving him food and drink

By INDERDEEP BAINS, CHIEF NEWS CORRESPONDENT Published: 23:00, 16 August 2026 | Updated: 23:00, 16 August 2026 For almost five years, she built her entire life around caring for her vulnerable son. She mastered clinical procedures, handled complex medication regimens and turned her home into what was, in effect, a high-dependency unit. Day after day, with the help of NHS-funded carers, she looked after the once-healthy young man who suffered a catastrophic hypoxic brain injury aged 22 in 2020, leaving him needing round-the-clock care. Today, after years spent at his bedside, she no longer holds his hand. She no longer helps bathe him, administer his care or sit with him for hours each day. Instead, she sees him via a phone screen. Although his mother campaigned for him to stay at home, the NHS North East London Integrated Care Board (ICB) moved him to a specialist facility a year ago. Since raising concerns about his care there, the woman – who the Mail is prevented from naming thanks to draconian court restrictions – was banned from visiting her son in person. Her contact with him was reduced to a brief 20-minute video call each day. ‘They took my protection and they labelled it as obstruction,’ she says. ‘This is what they do to families who dare to question their care: they villainise them.’ Because her son is deemed to be in a ‘vegetative state’, the ICB argue that his clinically assisted nutrition and hydration should be withdrawn. This would effectively be a death sentence. Although his mother campaigned for him to stay at home, the NHS North East London Integrated Care Board (ICB) moved her vulnerable son to a specialist facility a year ago In just days, possibly as soon as today, a judge will decide his fate. The once-sociable, warm and friendly young man can only be identified here by the initials ‘FHR’, and his mother as ‘FN’. The impact of their separation at this traumatic time, she tells us in an exclusive interview, has been devastating. ‘My sole purpose was to care for him, and now he’s just gone,’ she says. ‘I speak to the Samaritans every single day, twice a day. It’s the only way I keep myself sane.’ To most people, it sounds almost impossible to comprehend. How can a mother be stopped from visiting her own severely disabled son? How can care home managers wield such power? And how can the courts be persuaded to uphold such restrictions? And relatives be silenced from speaking publicly about their loved ones? Her case shines a light on a system operating largely behind closed doors and gagging orders which restrict families from speaking out. Disputes between families, care providers and NHS bodies can often result in relatives losing direct access to the people they love most. For the woman known as FN is just one of hundreds who claim they have been restricted, threatened with bans or entirely blocked from seeing relatives after raising concerns about the quality of care being provided. Campaigners, lawyers and charities warn of a growing trend in the punitive use of so-called ‘contact orders’ which cut relatives out of the lives of disabled family members. Those affected describe the process as having their loved ones ‘kidnapped’ while health authorities insist restrictions are imposed only when considered necessary to protect a patient’s welfare. After conducting an independent survey, the Challenging Behaviour Foundation (CBF), which supports children and young people with severe learning disabilities, found that abuse of the orders was a ‘systemic issue’. ‘We just don’t know how far this extends; there’s no figures or database,’ says Jacqui Shurlock, CEO of the charity. ‘But our sense is that more and more people are experiencing contact orders.’ She added: ‘There’s a definite tendency towards blaming parents when they raise concerns. I can’t comment on this case but we know from past cases, parents who have raised legitimate complaints have had orders placed on them.’ Lawyer Hanna Whitehead, who specialises in the Court of Protection which makes decisions for individuals lacking the mental capacity to do so themselves, has been raising concerns about an increase in orders being misused. ‘It’s becoming increasingly prevalent. I’ve worked in this area for quite a while and I’ve never had so many orders come through where contact has been restricted.’ She said that while some orders are of course justified, she was seeing bans were sometimes being used by care homes as the most convenient way to avoid relatives’ complaints. ‘It’s easier for care homes that way because they just don’t have to deal with it,’ she added. ‘As care homes are private property, they are the landlords and they do technically have the right to restrict who can enter onto the property.’ She added: ‘I don’t want to tar them all with the same brush, there are very reasonable care homes and carers out there, and there are family members that are problematic. But you do see cases where family members have raised concerns and carers get to the point where they don’t want to deal with this person any more, so they just restrict contact.’ The Government is responding to growing criticism of the use of these orders. In March, then-Care Minister Stephen Kinnock promised to crack down on the use of such orders in a bid to improve families’ visitation rights and end blanket bans. But for this mother, the promise of a crackdown has come too late. Over the past year, she has lost precious time with her son who could effectively be sentenced to death later this month. Medical professionals describe him as being in a vegetative state. Yet, the family argue he has a higher level of consciousness. ‘He experiences life. He experiences love,’ his mother says, showing me a video of him responding to requests to stick out his tongue. ‘He can hold his head up, he can focus… He’s not a vegetable. He’s not brain dead,’ she adds. She describes the painstaking rehabilitation journey he went through at home, built on meticulous daily routines and determination, which she says has stabilised him and heightened his state of awareness. ‘I educated myself in every area of his care,’ she says. ‘Medication, tracheostomy care, bladder care, chest care. ‘These were things I would have been scared to do before but because of my love for my son, everything just became easy and natural.’ When her son’s brain injury developed six years ago, he was initially cared for at home after a long stint in hospital. But since 2022, the ICB launched several court hearings in attempts to alter his care arrangements. These attempts had failed until spring last year. In April 2025, a judge ruled he should be moved to a care home, initially on an interim basis to undergo an assessment to measure his level of consciousness. That assessment was intended to inform a decision on whether it would be in his ‘best interest’ to ‘withdraw’ his food and water. Just days after the move into care, the family says, FHR’s health deteriorated dramatically and the progress he had made was lost. ‘We were raising concerns with the care home, saying “He’s not himself,” but they didn’t seem bothered,’ she claimed. When, she says, his monitors showed the oxygen saturation in his blood dropped, the family made the decision to call an ambulance against the care home’s wishes. The mother, who is in her mid-40s, said it emerged at hospital, that she had made the right call as her son had developed aspiration pneumonia and required urgent hospital treatment. ‘In four-and-a-half years at home, including in hospital settings, there was no pneumonia,’ she says. ‘Three days of being in the care home, he’s got aspiration pneumonia’. In her eyes, she’d called an ambulance after recognising that her son was in a life-threatening condition. But the mother says this incident triggered the contact order. After his discharge from hospital, the care home imposed severe restrictions on contact due to what they alleged was the family’s ‘challenging behaviour’. ‘When I arrived to see him, I was asked to leave and told the police would be called, so I left and that was it. Since that day, I’ve not seen my son in that care home,’ she says. The care provider initially banned the entire family from visiting, leaving FHR completely isolated for six weeks. The restrictions on other family members were soon lifted, however, the home was authorised to keep the ban on his mother and restrict contact to a single daily video call. For the mother, the sense of helplessness was overwhelming. ‘When it first happened, I went into shock,’ she recalls. ‘I think it’s how my brain handled such an extreme situation that I had no control over.’ She likened her distress to what she experienced when her son first suffered his brain injury six years ago – he was left severely disabled after a failed suicide attempt. The tragic episode, his mother believes, was a cry for help after a period of anxiety rather than a genuine bid to die at 22, but one that nonetheless changed their lives forever. In the days after the family was first banned from seeing him, the desperate mother posted a social media video featuring FHR soon after his injury in 2020 in which she talked about being separated from her son. The video, which attracted more than 1 million views, FN claims, did not identify the care home, disclose its location or reveal details of the Court of Protection proceedings. Nonetheless, the ICB subsequently applied to have the mother committed to prison for alleged contempt of court. That application is currently stayed. ‘It was something I did out of desperation not knowing what was going to happen. All I knew was we needed help,’ she said. Andrea Williams, chief executive of the Christian Legal Centre, which is representing the mother, said: ‘FN has fought with extraordinary courage for her son’s life, dignity and best interests. ‘Yet, instead of being supported as a devoted mother, she has been banned from visiting him, restricted to short video calls, threatened with prison and gagged from showing the world the son she loves.’ As councils face mounting pressure to secure specialist placements, authorities and courts often side with care providers in disputes with families rather than risk them withdrawing beds. ‘When it gets to the Court of Protection, the court is really limited in terms of what it can do,’ Ms Shurlock added. ‘If they’ve only got one provider, but there are concerns about the person going back home, they don’t have many options. It is a bit of blunt tool, they can only look at the provisions already on the table.’ Ms Whitehead, who specialises in health and welfare cases, said: ‘There is a shortage of beds around the country. So the problem is, when a case goes to court, the judge might agree that contact restrictions seem somewhat unreasonable, and that there’s not much evidence. ‘But the court and the judge don’t have to consider the best interests of the relatives. It’s about the best interest of this vulnerable person. And although it might be in the vulnerable person’s best interest to have contact with their sister, daughter, whoever, it’s also in their best interest to not have an urgent move from a care home to some random place down the country. ‘They do the balancing exercise; and they decide to preserve the placement instead of reinstating the contact.’ The mother believes that is exactly what has happened to her case. She believes that the care home’s insistence that she can’t visit, coupled with the belief that the son wouldn’t receive sufficient care at home, means the judge is left with no choice but to side with the care provider. A ruling permitting the ‘interim’ ban on the mother’s visits in May 2025 appears to confirm this. In the ruling, the court heard that FHR’s placement was ‘at the brink of serving notice’ and that the court determined that it was ‘imperative that the placement is protected’. However, it also urged the ICB together with the care provider to ‘actively consider’ re-introducing in-person visits ‘while maintaining the placement’. What was initially presented as a temporary move to a care home, has now stretched beyond a year, as did the ‘interim’ visiting ban. Another judgment, by a second judge in April this year, acknowledged that FN is ‘obviously a devoted mother’ and again urged the home and ICB to reconsider the ban. ‘It is a very important issue that FHR may not be able to spend time with his mother. That weighs on me quite heavily,’ Mr Justice McKendrick wrote. He goes on to give ‘very clear direction’ that the ICB ‘must urgently consult’ with the care home manager to lift these restrictions. In response to the judge’s call to relax the ban, the care home managers increased the video calls from 20 minutes a day to 40 minutes last month. Most recently, the mother says, she has been sent a 27-clause ‘agreement’ which she has been told she must sign before the home considers allowing her to visit. The five-page document says she would be granted one 30-minute visit per week which will be supervised by a member of staff who will ‘remain within direct sight’. It also prevents the mother from raising questions or complaints about her son’s care while at the care home. The agreement also bans ‘any untoward behaviour’ and insists she must act ‘calmly and respectfully’ at all times. ‘They’ve portrayed me as some kind of villain who is aggressive and unreliable,’ said the mother, who’s lawyers are currently reviewing the document. ‘All I wanted is the best for my son, no one can care better for her child then a mother.’ Over the past year, the mother said she has made repeated legal attempts to bring her son home, arguing she is better placed to care for him. She claims that during his time in care, FHR has been admitted to hospital five times, compared with just once during all the years he was cared for at home. FN also alleges his tracheostomy tube was not changed for five months – although they’re usually changed every four to six weeks – and that he suffered multiple avoidable infections. During his hospital admissions, she says she was able to visit him without issue, despite being barred from seeing him at the care home. The care home and health authorities dispute many of the family’s criticisms and maintain that all decisions have been taken in FHR’s best interests. ‘They create this narrative that families like ours are deluded,’ the mother says of health authorities. ‘That we’re keeping these people alive for our own sake. But letting go is the easy route. I’ve given up my life and everything I’ve ever worked for to take care of my son. It’s not easy.’ She says the bid to see care withdrawn from FHR will be a cruel death sentence, one which will see him starve and dehydrate. ‘It’s neglect dressed up as protection. I’ve always said let him live and die when his time comes,’ she says. ‘Don’t starve him. Don’t dehydrate him. Don’t kill him by neglect and withdrawing care,’ the mother adds.