CHI accused of using off-label treatment without parental consent
Advocacy groups have accused Children's Health Ireland of treating children with an off-label application of a medical device without the informed consent of their parents.
However, the hospital group has defended the insertion of gastrostomy buttons in the bladders of some children, saying it is a practice used around the world and has been found to be safe
Gastrostomy buttons are designed to be inserted into the stomachs of patients to deliver medicines or nutrition.
Amanda Coughlan Santry of the Spina Bifida and Hydrocephalus Paediatric Advocacy Group says the issue arose when some children went to the UK for treatment and doctors there discovered the buttons in their bladders.
She told RTÉ News the medics there wanted to know why it had been done in Ireland.
When parents contacted a manufacturer of the devices they were told gastrostomy buttons are not suitable or tested for use in the bladder, she added.
Some parents are concerned the practice may have put their children at increased risk from urinary tract infections.
Responding to concerns first reported in the Sunday Times, CHI issued a statement saying "the placement of a gastrostomy button in the bladder, also known as a vesicostomy button (VB), is a long-standing internationally recognised practice."
It says that a quick search found nine published studies from around the world, over an 18-year period, which covered the use of the buttons in the bladders of almost 190 patients.
It claims all the reports found the practice is a safe method of bladder drainage for patients where use of a catheter is not an option.
CHI says none of the studies supported the suggestion that the use of the buttons in the bladder could lead to an increased risk of infection.
The CHI statement also included a link to an NHS information page, for parents of children getting the treatment, on the use of the buttons in the bladder which says "it has been recognised that the same device can be used for a different purpose that is, it can be placed into the bladder, through a vesicostomy, and used to drain urine out of the bladder. When used in this latter way it is referred to as a 'button vesicostomy'."
However the page also says the use of the buttons can increase the risk of UTI.
"This can be more common than when an intermittent catheter is used and the UTI can be more difficult to treat," the NHS page has said.
The SBHPAG and the Scoliosis Advocacy Network met Minister for Health Jennifer Carroll McNeill to voice their concerns.
In follow up correspondence, she referred to the CHI arguments for using the devices and told the advocacy groups that "CHI have advised that all historical use of technically off-label use of devices are retrospectively going through Clinical Ethics and the Medical Device Management Committees as good practice."
She added that on the issue of communicating with patients and their parents "there is certainly room for improvement on this."
The SBHPAG told RTÉ News that it is aware of three children who had gastrostomy buttons inserted into their bladders during treatment at CHI.
However it added it represents a small cohort of families and it expects there could be other children affected by this.
CHI says it cannot access the data at the weekend to find out how many patients were treated in this way.
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
The Irish Sun
a day ago
- The Irish Sun
I'm a psychologist and there are 5 things your kids must NEVER do if they have ADHD – or they risk making symptoms worse
MOST of us will know someone with ADHD - maybe a person in your friendship group, a work colleague, even your own son or daughter. While it's commonly understood that people with ADHD have difficulties with attention, hyperactivity, and impulsivity, it's less well known what can exacerbate symptoms, especially among children. 3 Around 708,000 children in the UK are estimated to have ADHD Credit: Getty Children are more likely to be diagnosed with ADHD - which stands for attention-deficit/hyperactivity disorder - than adults. The condition can be identified at any age, but symptoms typically begin in childhood. While the condition affects both children and adults, the experience and challenges can differ significantly. Children often struggle more with hyperactivity and impulsivity, so knowing how not to exacerbate your child's symptoms is very important. There's been a notable increase in diagnoses over the past two decades, particularly among adults, and we know so much more about it - although figures suggest many cases remain undiagnosed. As of 2024, Prescriptions for ADHD increased significantly from around 25 items per 1,000 people in 2019-20 to 41.55 items in 2023-24. But this increase isn't necessarily due to a true surge in cases. It reflects a number of factors, such as increased awareness and recognition of the condition, updates in diagnostic guidelines, and sociocultural pressures such as overstimulating digital environments. While the rise partly reflects these factors, it also raises important questions about overdiagnosis, the medicalisation of typical behaviour, and the need for individualised care. Do you or your child have ADHD- Here's the NHS test as Brits waiting two years for diagnosis To better understand the condition, chartered counselling psychologist Dr Sheena Kumar shared everything you need to know - from telltale signs to what to avoid. Signs you might have ADHD ADHD isn't just about being hyper or distracted or struggling under a heavy workload, says Dr Kumar. Instead, it's a neurodevelopmental condition that affects how you focus, organise, and manage impulses. Dr Kumar explains: "While everyone struggles with attention sometimes, ADHD symptoms are persistent; they do not come and go. "They show up in different parts of life like work, school, and relationships, and make things feel harder than they should be." According to Dr Kumar, the following symptoms always start in childhood, even if they weren't recognised: Losing focus, even in conversations or reading Misplacing things, forgetting tasks, or missing deadlines Struggling to start or finish tasks that need mental effort Feeling restless, talking a lot, or interrupting without meaning, which impacts your relationships Having trouble managing time, emotions, or priorities For adults, it might look less like physical hyperactivity and more like feeling mentally scattered or overwhelmed all the time, says Dr Kumar. What NOT to do if you have ADHD For people with ADHD, their brain works differently to neurotypical people, especially in areas like attention, impulse control, and executive functioning. Because of this, some habits and choices can make symptoms worse or lead to burnout - especially for kids. Dr Kumar says: "You want to find ways to support your brain rather than to add extra demand to it." ADHD in children and young people Symptoms of ADHD usually start before the age of 12. A child or young person may show signs of being inattentive, such as: being easily distracted finding it hard to listen to what people are saying or to follow instructions forgetting everyday tasks, like brushing their teeth or putting on socks They may show signs of being hyperactive and impulsive, including: having high energy levels fidgeting or tapping their hands and feet talking noisily feeling restless, or getting up and moving around when they're supposed to sit still finding it hard to wait their turn, or interrupting conversations Most children and young people with ADHD have symptoms of both the inattentive and hyperactive-impulsive type. Some only show signs of one type. ADHD is thought to be recognised less often in girls than boys. This may be because girls with ADHD more commonly have inattentive symptoms and these can be harder to recognise. If you're worried that ADHD may be affecting your child, talk to one of their teachers. The teacher will usually make a referral to the school's special educational needs co-ordinator (SENCO), who can discuss support in the classroom or with homework, or help with building confidence and friendships. If you're still worried or you think your child needs additional support, you may want to make an appointment with a GP. Source: NHS Here are five things she recommends to avoid: 1. Prioritise sleep People with ADHD tend to have a higher rate of sleep disorders. For children, ADHD can lead to trouble falling asleep, staying asleep, and getting up in the morning. And sleep deprivation amplifies ADHD symptoms. It hinders the brain's ability to concentrate, making it more challenging for individuals with ADHD to stay focused and attentive. Dr Kumar advises: "Prioritise sleep, and if you struggle, research and try different ways to help sleep." 2. Don't overcommit The impulsivity and difficulty with time management associated with ADHD can contribute to taking on more tasks than one can realistically manage. Kids in particular may also struggle to say 'no'. This could be related to schoolwork, exams, or social situations such as hanging out with their friends. But overcommitment can be particularly problematic for individuals with ADHD, often leading to stress, burnout, and difficulty following through on commitments. Dr Kumar says: "Learning to say 'no' doesn't make you rude, it makes you honest." 3. 'Just try harder' The belief that someone with ADHD must exert extra effort to perform tasks can negatively impact self-esteem, warns Dr Kumar. This can be due to a combination of factors, including the feeling of being constantly behind, the internalisation of external criticism, and the challenges associated with emotional regulation. Telling a child with ADHD to 'just try harder' is ineffective and can be harmful because ADHD is a neurological condition, not a lack of effort or motivation. Instead of focusing on the perceived need to exert more effort, people with ADHD should adopt strategies to improve focus, organisation, and overall functioning. These strategies should be tailored to individual needs and preferences, and may include using tools to manage time and tasks, incorporating physical activity, and seeking professional guidance. 4. Ignore your emotions People with ADHD shouldn't ignore their emotions because neglecting them can lead to a number of difficulties. Children with ADHD may especially have difficulty regulating and managing their emotions. This can potentially result in intense outbursts and difficulty managing everyday situations. "Working on regulation skills helps," says Dr Kumar. 5. Never self-diagnose or self-medicate While parents are key to recognising potential ADHD symptoms and initiating the process of seeking a diagnosis from a doctor, they should never diagnose their child with the condition themselves. Self-diagnosing and self-medicating ADHD is strongly discouraged because it can lead to inaccurate diagnoses, ineffective treatment, and potential harm. A formal diagnosis requires a thorough evaluation by a qualified healthcare professional, and treatment plans should be tailored to individual needs under the supervision of a medical professional. You risk the danger of making symptoms worse, says Dr Kumar. ADHD in adults In adults, ADHD often manifests as inattentiveness, hyperactivity, and impulsivity, though these can be less pronounced than in children. These challenges can significantly impact various aspects of life, including work, relationships, and daily tasks. You may show signs of being inattentive, such as: being easily distracted or forgetful finding it hard to organise your time finding it hard to follow instructions or finish tasks losing things often, like your wallet, mobile or keys You may show signs of being hyperactive and impulsive, including: having a lot of energy or feeling restless being very talkative or interrupting conversations making quick decisions without thinking about what might happen as a result If your ADHD symptoms are affecting your studies, work or relationships, make an appointment with a GP to find out what support is available. At your appointment, the GP will ask about your symptoms and how they affect your life. They may also want to consider other conditions that could be causing your symptoms, such as autism, Tourette's or anxiety, to help you get the right care. After the appointment, the GP may decide to refer you for an assessment with a mental health professional specialising in ADHD. Source: NHS The best way to get diagnosed 3 Visit your GP and ask for a referral to go the NHS route Credit: Getty To go down the NHS route, visit your GP and ask for a referral to an ADHD specialist (only certain professionals are qualified to diagnose, such as psychiatrists and psychologists). Dr Kumar advises: "You'll usually be asked to bring examples of how your symptoms affect your daily life. "But note - while the NHS pathway is free, unfortunately waiting times can be up to three years. "If a private assessment is an option for you, diagnosis tends to be a lot quicker. "In my clinic I also do online ADHD assessment and diagnosis with adults." What happens if ADHD is never diagnosed? ADHD that is never diagnosed can hide under layers of frustration, burnout, or health issues. A diagnosis can be the first step toward understanding yourself, finding effective strategies, and feeling less alone. Dr Kumar adds: "Many people experience underachievement, feeling capable but consistently falling short due to disorganisation, missed deadlines, or procrastination. "This often leads to low self-esteem, with individuals internalising harmful beliefs like 'I'm lazy' which can increase the risk of anxiety and depression. "Without understanding the root cause, people may turn to coping mechanisms like excessive caffeine, or other substances to self-regulate. "Relationships may also suffer due to impulsivity, forgetfulness, or emotional reactivity, all of which can create unnecessary conflict. "Getting a diagnosis can bring clarity, relief, and a starting point for meaningful support." How ADHD is treated 3 Psychological therapies, such as cognitive-behavioural therapy (CBT) can help people with ADHD Credit: Getty For some people, just knowing their diagnosis brings relief as it helps them to make sense of themselves and they do not want formalised treatment. For those that want treatment, that can look like a combination of medication, psychological support, and lifestyle adjustments, says Dr Kumar. She explains: "Psychological therapies, such as cognitive-behavioural therapy (CBT), support managing time, emotions, and daily challenges, often alongside coaching and family education. "Lifestyle changes like establishing routines, using organisational tools, exercising, and prioritising good sleep also play an important role. "Schools may provide additional support through formal plans, and regular follow-ups with healthcare professionals ensure the treatment is effective and adjusted as needed. "Overall, treatment is personalised to help improve daily functioning and quality of life."
Irish Daily Mirror
2 days ago
- Irish Daily Mirror
Funding pulled at another hospital as NTPF flags 'potential irregularities'
Funding to help alleviate waiting lists has been suspended at a second hospital because of 'potential financial irregularities'. The National Treatment Purchase Fund (NTPF) said it had suspended all insourcing work at the public hospital since April 11 and immediately informed the Department of Health and Health Service Executive (HSE). The matter had been referred to the HSE's internal audit team. 'The board and executive of the NTPF take their responsibilities very seriously and will take whatever actions are necessary to ensure our spend with public hospitals is fully protected for the benefit of public patients,' NTPF chief executive Fiona Brady said. 'Any proven misuse of public money by public institutions will be treated with the gravity it deserves.' The NTPF, which is a body that arranges external treatments for patients on public hospital waiting lists, has come under scrutiny in recent weeks. It was reported in the Sunday Times that a consultant breached HSE guidelines by referring patients he was seeing in his public practice to his weekend private clinics, rather than securing earlier treatment for them by referring them to HSE colleagues. The newspaper said the consultant was paid thousands of euro through the NTPF, and the details were uncovered by an internal investigation by Children's Health Ireland (CHI). The NTPF said on Wednesday that following a meeting of its board, it would immediately recommence insourcing work with CHI after a review of its assurances. But it said that the board and executive 'remain deeply concerned' that there had been a breach of its processes by another public body. It said governance and oversight across its insourcing work with public hospitals – who until now have been responsible for this internal governance – would increase. As well as notifying the Department of Health and HSE of its decision, the NTPF had also written to all public hospitals with whom it funds insourcing work to obtain further confirmation that all work is carried out in line with the NTPF's processes and procedures. A deadline of Monday June 16 has been given for the completion of these replies. 'Insourcing work through the NTPF has delivered benefits to thousands of patients in recent years and has a demonstrable impact on waiting times and waiting-list numbers,' Ms Brady said. 'However, it is vital there is public trust and confidence around insourcing with public hospitals. It must be remembered that these public hospitals already have clear and established lines of reporting and accountability within the public system and clear obligations to comply with the terms of the signed memorandum of understanding in respect of NTPF-funded work. 'We will now work urgently with the Department of Health and HSE on any additional measures that may be needed to ensure that necessary controls of NTPF-funded initiatives are in place in the public hospitals.'
The Journal
2 days ago
- The Journal
NTPF funding to another public hospital suspended over 'potential financial irregularities'
THE NATIONAL TREATMENT Purchase fund has cut funding to another public hospital temporarily after finding ' potential financial irregularities' in relation to NTPF-funded insourcing work at another public hospital. The NTPF has suspended all insourcing work at that hospital since 11 April, it said. It has alerted the Department of Health and the HSE of its findings and subsequent actions. 'The matter has been referred to the HSE's Internal Audit team. The NTPF is restricted from making further comment at this stage,' a spokesperson said. Advertisement The NTPF did not name the hospital in question. It further announced that it has recommenced insourcing clinics at Children's Health Ireland (CHI) hospitals after they were temporarily paused after an internal CHI report, which has not been published but has been seen by The Journal and other media outlets, raised concerns that children were having to wait longer for surgical interventions due to being placed on the waitlist for an NTPF funded insourcing clinic. The NTPF has said that it will now 'increase' its governance and oversight across its insourcing work in public hospitals. 'Insourcing work through the NTPF has delivered benefits to thousands of patients in recent years and has a demonstrable impact on waiting times and waiting list numbers. 'However, it is vital there is public trust and confidence around insourcing with public hospitals. It must be remembered that these public hospitals already have clear and established lines of reporting and accountability within the public system and clear obligations to comply with the terms of the signed Memorandum of Understanding in respect of NTPF-funded work' NTPF Chief Executive Fiona Brady said. Readers like you are keeping these stories free for everyone... A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article. Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation. Learn More Support The Journal
