A mother, identified only as FN, has been banned from visiting her severely disabled son, FHR, in an NHS-funded care home, where she alleges decisions are being made to withdraw his food and drink. For nearly five years, FN dedicated her life to caring for FHR after he sustained a catastrophic hypoxic brain injury in 2020 at the age of 22. She managed complex medical needs and transformed her home into a high-dependency unit. A year ago, the NHS North East London Integrated Care Board (ICB) moved FHR to a specialist facility, a decision FN opposed.
Since raising concerns about his care, FN was prohibited from in-person visits, with her contact reduced to a 20-minute daily video call. She stated, "They took my protection and they labelled it as obstruction. This is what they do to families who dare to question their care: they villainise them." The ICB is arguing that FHR, deemed to be in a "vegetative state," should have his clinically assisted nutrition and hydration withdrawn, a move his mother views as a death sentence.
Campaigners, lawyers, and charities warn of a growing trend where contact orders are used punitively, restricting families' access to disabled relatives. The Challenging Behaviour Foundation (CBF) described the abuse of these orders as a "systemic issue." Jacqui Shurlock, CEO of the CBF, noted a tendency to blame parents who raise concerns, stating, "parents who have raised legitimate complaints have had orders placed on them." Hanna Whitehead, a lawyer specializing in the Court of Protection, has observed an increase in such orders being misused, suggesting that bans are sometimes employed by care homes to avoid dealing with family complaints. "It's easier for care homes that way because they just don't have to deal with it," she explained.
In March, the then-Care Minister Stephen Kinnock pledged to address the use of these orders. However, for FN, this promise of reform has come too late. She believes her son, who she argues exhibits a higher level of consciousness and responds to stimuli, is being wrongly assessed. She presented videos of him responding to requests, asserting, "He experiences life. He experiences love. He can hold his head up, he can focus… He's not a vegetable. He's not brain dead."
FN recounted the extensive rehabilitation efforts she undertook at home, which she believes stabilized her son and heightened his awareness. She educated herself in all aspects of his care, including medication, tracheostomy care, and chest care. These were tasks she found manageable due to her love for her son.
After FHR's injury, he was initially cared for at home. However, since 2022, the ICB pursued court hearings to alter his care arrangements. In April 2024, a judge ruled that FHR should be moved to a care home for an assessment to determine his level of consciousness, which would inform a decision on withdrawing life support. Shortly after the move, FN claims FHR's health deteriorated, and progress was lost. She stated that when she raised concerns about his condition, the care home appeared indifferent. An ambulance was called by the family against the care home's wishes when FHR's oxygen saturation levels dropped, revealing he had developed aspiration pneumonia.
Following his hospital discharge, severe restrictions were imposed on family visits due to alleged "challenging behaviour." The entire family was initially banned for six weeks, but the ban was later lifted for all except FN, who was restricted to daily video calls.
FN's distress led her to post a social media video of FHR after his injury. The ICB subsequently applied to have her committed to prison for alleged contempt of court, though that application is currently stayed. Andrea Williams, chief executive of the Christian Legal Centre, which represents FN, criticized the treatment of the mother, stating 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."
Legal experts suggest that courts may prioritize preserving placements over reinstating contact due to a shortage of specialist beds. Whitehead noted that judges must consider the vulnerable person's best interests, which can sometimes lead to preserving a placement rather than facilitating contact if an urgent move is perceived as detrimental.
Despite two judges urging the ICB and care home to reconsider the visitation ban, the restrictions have persisted. Most recently, FN was presented with a 27-clause agreement that she must sign before any in-person visits are considered. The document stipulates supervised, short visits and prohibits her from raising questions or complaints about her son's care.
FN believes this situation reflects a broader issue where authorities and courts may align with care providers to avoid the risk of beds being withdrawn. She continues to advocate for her son's right to live and receive care, stating, "Don’t starve him. Don’t dehydrate him. Don’t kill him by neglect and withdrawing care. Just leave my kid alone."