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Found 44 results
  1. News Article
    The benefits of taking drugs for attention deficit hyperactivity disorder outweigh the impact of increases in blood pressure and heart rate, according to a new study. An international team of researchers led by scientists from the University of Southampton found the majority of children taking ADHD medication experienced small increases in blood pressure and pulse rates, but that the drugs had “overall small effects”. They said the study’s findings highlighted the need for “careful monitoring”. Prof Samuele Cortese, the senior lead author of the study, from the University of Southampton, said the risks and benefits of taking any medication had to be assessed together, but for ADHD drugs the risk-benefit ratio was “reassuring”. “We found an overall small increase in blood pressure and pulse for the majority of children taking ADHD medications,” he said. “Other studies show clear benefits in terms of reductions in mortality risk and improvement in academic functions, as well as a small increased risk of hypertension, but not other cardiovascular diseases. Overall, the risk-benefit ratio is reassuring for people taking ADHD medications.” Read full story Source: The Guardian, 6 April 2025
  2. News Article
    Less than half of the claims made about symptoms of attention deficit hyperactivity disorder (ADHD) in the most popular videos on TikTok align with clinical guidelines, a new study has found. Two clinical psychologists with expertise in ADHD also found that the more ADHD-related TikTok content a young adult consumes, the more likely they are to overestimate both the prevalence and severity of symptoms in the general population. People with ADHD are known to suffer inattention, hyperactivity and impulsivity – and may struggle to concentrate on a given task, or suffer extreme fidgeting. Prescriptions for drugs for ADHD have jumped 18% year-on-year in England since the pandemic, which underscores the need for accurate and reliable information, particularly on platforms popular with young people. In this latest study, published in the journal Plos One, the two psychologists evaluated the accuracy, nuance, and overall quality in the top 100 #ADHD videos on TikTok. They found the videos have immense popularity (collectively amassing nearly half a billion views), but fewer than 50 per cent of the claims made were robust. Read full story Source: The Independent, 31 March 2025
  3. News Article
    Prescriptions for drugs to treat attention deficit hyperactivity disorder (ADHD) have jumped 18% year-on-year since the pandemic, research suggests. Experts said increasing awareness of ADHD, including via social media platforms like TikTok and Instagram, is likely to have encouraged more people to seek diagnosis and treatment for the condition. However, they warned that “misinformation on these platforms may lead to misconceptions about symptoms, diagnosis and treatment”. Another reason behind the rise could be the “strong association between the impact of the (Covid) pandemic and the worsening of ADHD symptoms”, they said. Dr Ulrich Muller-Sedgwick, ADHD champion at the Royal College of Psychiatrists, said people with ADHD need access to timely and effective assessment, “followed by the appropriate treatment”. He added: “We’ve seen a significant increase in the number of people coming forward for ADHD support in recent years. “There are many reasons for this, including improved recognition of ADHD in women, greater public awareness and the impacts of the pandemic which exacerbated many people’s symptoms. “The right diagnosis and care, including medication and reasonable adjustments, can greatly benefit people’s health and support them to reach their full potential at school, university or work. “We know that expanding ADHD services through targeted investment would help ensure people receive the vital care they need.” Read full story Source: The Independent, 11 March 2025
  4. News Article
    Disjointed, delayed, and substandard care for people with both mental illness and additional needs are highlighted throughout reports sent to integrated care boards on the deaths of 24 people, HSJ has found. A lack of inpatient beds, poor communication, staff shortages, and care fragmentation were common concerns raised with 18 ICBs in relation to 24 deaths linked to mental health care since the boards’ creation in July 2022, HSJ analysis reveals. Of a total of 53 “prevention of future death reports” addressed to ICBs, 24 focused primarily on mental health – the most common theme of the reports. Many of those who died were young, and many had additional needs, such as autism, ADHD or learning disabilities. They often endured long delays because of poorly-connected physical and mental health services. Some were refused multiple referrals because of the complexity of their needs. Twenty-two of the 24 deaths were from suicide or self-harm. Read full story (paywalled) Source: HSJ, 28 January 2025
  5. Content Article
    Matthew Zak Sheldrick (Matty) had struggled with their mental health throughout their adult life, but it wasn’t until 2019 that Matty was finally diagnosed with Autism. ADHD and Autistic Spectrum Disorder. However, they had never been sectioned under the Mental Health Act or had spent time as a voluntary patient in a mental health hospital.   Matty had moved to Brighton from Surrey in November 2021 having wanted to live independently. They were drawn to Brighton as they wished to be involved in the trans/non-binary community.   Matty’s mental health deteriorated during the summer of 2022 due to accommodation issues that they had been facing and issues with an online relationship. By 3rd September they were in crisis.  On 5 September 2022 Matty was admitted to A&E at the Royal County Hospital, Brighton. They remained within A&E, short stay ward, for 26 days awaiting a psychiatric bed. During this time no bed was found, and they were eventually discharged back home with support from the Crisis Home Treatment Team. Matty’s mental health had been affected by the unsuitability of the environment within A&E for someone awaiting an inpatient mental health bed.   Less than 5 weeks later Matty was again admitted to the A&E department at the Royal Sussex County Hospital on 3rd November 2022 in crisis. Their presentation fluctuated and this led to them being assessed under the Mental Health Act. However, they were not found to be detainable. They left the hospital shortly after the assessment and were sadly found hanging in the grounds of the hospital.  Matters of concern The lack of inpatient beds leading to the unacceptable wait time in A&E for those suffering with their mental health who are awaiting beds. In Matty’s case a bed was not found for them within a 26-day period. There being a shortage of beds for Autistic patients (both informal and detained) within the private sector that are being funded by the ICB. Evidence was heard that those providing beds within the public sector very often refused to accept autistic patients due to their additional risks. There being a shortage of beds for transgender patients who are in need of a mixed ward. In Matty’s case it appears there was a lack of appreciation by the ICB of his extensive length of stay in A&E. It appears that this information (and others who had lengthy stays) was not at that time being collected, monitored and acted on by the ICB. The unsuitability of the environment of A&E as a holding place for those in need of a mental health bed. The evidence was that the environment in A&E as a holding place is not conducive for those suffering with Autism and/or who are neurodiverse. The environment in A&E can exacerbate and cause further deterioration in their mental health. There is a gap in services for those who are not ill enough to be detained but who are too high risk to be sent home. There is a significant wait time for referral to the Assessment and Treatment Service. Therefore, any therapeutic input is delayed, and this results in repetitive attendances at A&E when in crisis. Current gaps in service around psychosocial support for transgender, non-binary and intersex adults have been provided by third party charitable organisations. It is understood that much of their funding has recently been withdrawn by the ICB. This is of particular concern as Brighton is recognised as having one of the largest trans communities in the Country.
  6. News Article
    Men with a diagnosis of ADHD die seven years sooner, on average, than similar people without, while for women the life expectancy gap is almost nine years, the first study of its kind has revealed. Attention deficit hyperactivity disorder can cause difficulties in concentration and problems with impulsiveness, although people with ADHD do not necessarily experience both. While estimates vary, studies suggest 3-4% of adults worldwide have ADHD. Now researchers have revealed people diagnosed with the disorder tend to have shorter lives. The new study used primary care data from more than 9 million adults across the UK, from 2000 to 2019, to explore whether ADHD was indeed associated with a shorter life. The results reveal that men with a diagnosis of ADHD had a life expectancy 6.8 years shorter on average than those without, while females with a diagnosis of ADHD had a life expectancy 8.6 years shorter on average than those without. Read full article. Source: The Guardian, 23 January 2025
  7. News Article
    Nearly 400,000 private prescriptions for ADHD medication were issued last year as patients sought to bypass lengthy NHS waiting lists, with people spending millions of pounds on treatment. Figures obtained by the BBC show the number of prescriptions for drugs rose from 28,439 in 2018-19 to 397,552 in 2023-24. One family from West Yorkshire said they had chosen to remortgage their home to meet the costs, with research suggesting backlogs for ADHD assessments could take up to eight years to clear in some parts of the UK. The Department of Health and Social Care said it was working to "bring waiting lists under control", adding that the NHS had recently launched an "ADHD taskforce" to help tackle the delays. Read full story Source: BBC online, 14 January 2025
  8. News Article
    The family of a man who died after he repeatedly banged his head against a wall in a mental health suite said there was no "safety net" for people with their son's needs. Declan Morrison, 26, from Cambridge, was autistic, had severe learning disabilities and attention deficit hyperactivity disorder. In the hours before his death, he was left naked in a room with CCTV cameras, but his family said the alarm was only raised after he was found unresponsive by staff. His parents, Graeme and Sam Morrison, are now calling for answers about what went wrong with their son's care. Mrs Morrison said: "He was left to his own devices in a surrounding that he couldn't understand, with no stimuli, bright lights and bare walls." In March 2022, Declan spent 10 days in the Section 136 mental health assessment suite, as there were no beds available across the UK. But he could not cope with the austere, clinical environment which, under the Mental Health Act, should be used for a maximum of 24 hours. The suite was described by coroner Simon Milburn as "wholly inappropriate", external for Declan's needs. Read full story Source: BBC News, 9 December 2024
  9. News Article
    Thousands of children with attention deficit hyperactivity disorder (ADHD) are having to go without medication as a result of shortages, with some missing school as a result. There has been a national shortage of ADHD medications for more than a year, with the worst affected drug currently methylphenidate, which is commonly used for children and sold under the brand names Concerta and Ritalin. Two thirds of parents said they faced problems getting their child’s medication at the beginning of this school year, according to a survey by the charity ADHD UK, with some saying their children are unable to concentrate in lessons or having to take days off. Campaigners and pharmacists have urged the Department of Health and NHS to loosen bureaucracy that means patients cannot switch to alternative drugs that are in stock. Henry Shelford, chief executive of ADHD UK, said: “We were under the impression it would be solved by now but it’s absolutely not. There are huge challenges across the country. The problem in the UK is much worse than almost anywhere else in the world. “It is absolutely destroying lives. It is devastating for children. Removing medication from a child with ADHD is akin to removing a wheelchair from a disabled person. They can’t live their normal lives. “I know people whose entire careers are being unravelled because of problems with their medication. For many people medication is life-changing, and so to have it removed is equally life-changing.” Read full story (paywalled) Source: The Times, 24 November 2024 Further reading on the hub: Medicines Shortages Policy: Solutions for empty shelves Medication supply issues: Mast cell activation syndrome (MCAS) - Medication including labelling - Patient Safety Learning - the hub Medication supply issues: A pharmacist’s perspective
  10. News Article
    Some people in Kent with ADHD say a shortage of vital medications is making life a "living nightmare". The lack of medications at pharmacies has even left some people waiting years to get the drugs prescribed for them. Some said they regularly have to ring dozens of pharmacies before finding their medication or drive up to 20 miles (32km) to collect treatments, while one person has resorted to paying £200 a month to get hers privately. A Department of Health and Social Care spokesperson said that, while the majority of medicines were in good supply, it is working to resolve issues caused by complex and highly regulated global supply chains. Single mother Tracy McKenzie has ADHD, along with her 10-year-old daughter and teenage son. "My son is on a high strength of stimulant medication and without it becomes impulsive and aggressive," said Ms McKenzie, from Dartford. "Every month I worry about trying to get medication for us all, which then impacts my own mental health. "I phone many chemists within a 20-mile radius to find which has it in stock and pray that, by the time the doctor writes the prescription, someone else hasn't managed to get the last of it before me. "It's a living nightmare." Read full story Source: BBC News, 4 November 2024 Further reading on the hub: Medication supply issues: Mast cell activation syndrome (MCAS) Medication supply issues: A pharmacist’s perspective Medication supply issues: have you been affected?
  11. Content Article
    Research by the Children’s Commissioner shows around 400,000 children in England were still waiting at the end of 2022-23 to receive their first appointment after being referred to Community Health Services and Children’s Mental Health Services. This is equivalent to around 3% of England’s total child population.  Unlike adults, children with neurodevelopmental conditions are assessed in both Community Health and Mental Health Services – meaning using existing national data, it is impossible to answer how long children are waiting for diagnosis with neurodevelopmental conditions like ADHD and autism in England.   This report uses the Children’s Commissioner’s legislative powers to draw on unpublished data on neurodevelopmental condition diagnoses from NHS England to provide a novel and more joined up national picture of children’s waiting times across both mental health and Community Health Services. Data is taken from the financial years 2022-23 and 2023-24. 
  12. News Article
    A year ago, life for many people in the UK with attention deficit hyperactivity disorder (ADHD) became unpredictable and disorientating as their medications suddenly became scarce. They were told the shortages would be over within months - but people with the condition tell the BBC it is still a problem. Spending two hours on hold to her pharmacy or GP each day has become the norm for Lorelei Mathias, 44, who has struggled to get a consistent supply of her prescription ADHD drugs since the shortages began last September. The Brighton-based author and comedian, who created the web series Life in ADHD, says she has gone "against advice" and started rationing, hoarding and sharing pills with friends on similar prescriptions to make sure they all have enough. "I have many friends who are also really struggling and splitting pills or shutting down from work as they can't function without it," she says. When the UK government issued a patient safety alert, external warning last September about a shortage of many ADHD medications, it said it expected the disruption to end by December 2023. Dr Ulrich Müller-Sedgwick, a consultant psychiatrist for adult neurodevelopmental pathways at the Royal College of Psychiatrists, says production and manufacturing issues are a factor. He says: "There’s only a limited number of factories where these medicines are actually produced. They're stimulants, so there’s also quite a high security standard in these factories and they’re not easy operations to run." The Department of Health and Social Care (DHSC) says most supply issues have been resolved and it is working with manufacturers on the remaining problems. Read full story Source BBC News, 27 September 2024 Related reading on the hub: Medication supply issues: A pharmacist’s perspective Medication supply issues: Mast cell activation syndrome Have you (or a loved one) ever been prescribed medication that you were then unable to get hold of at the pharmacy? Was there an impact on your health (physical and mental)? Were you told the reason for it not being available? Was the issue resolved? If so, how long did it take? If you are still impacted by medication supply issues, have you been told when you will be able to access them again? To help us understand how these issues impact the lives of patients and families, please share your experience and insights on the hub here. You'll need to register with the hub first, its free and easy to do.
  13. News Article
    An 18-year-old woman suffering a mental health crisis was forced to wait eight-and-a-half days in A&E before getting a bed in a psychiatric hospital – believed to be the longest such wait seen in the NHS. Louise (not her real name) had to be looked after by the police and security guards and sleep in a chair and on a mattress of the floor in the A&E at St Helier hospital in Sutton, south London, because no bed was available in a mental health facility. She became increasingly “dejected, despairing and desperate” as her ordeal continued and, her mental health worsening while she waited, self-harmed by banging her head off a wall. She absconded twice because she did not know when she would finally start inpatient treatment. Louise arrived at St Helier on the evening of Thursday 16 June and did not get a bed in an NHS psychiatric unit until the early hours of Saturday 25 June, more than eight days later. She was diagnosed last year with emotionally unstable personality disorder and ADHD. The mental health charity Mind said it believed it to be the longest wait in A&E ever endured by someone experiencing a mental health crisis, and described it as “unacceptable, disgraceful and dangerous”. It called for urgent action to tackle the inadequacy of NHS mental health provision and bed numbers. “An eight-and-a-half day wait in A&E for a mental health bed is both unacceptable and disgraceful. Mind has never heard of a patient in crisis waiting this long to receive the care they need, and serious questions need to be raised as to how anyone – let alone an 18-year-old – was left to suffer for so long without the care she needs,” said Rheian Davies, the head of Mind’s legal unit. “This is dangerous for staff, who are not trained to give the acute care the patient needs, and dangerous for the patient, who needs that care immediately – not over a week later." Read full story Source: The Guardian, 4 July 2022
  14. News Article
    Erik, a 26-year-old Seattle grocery clerk, who also has attention-deficit hyperactivity disorder (ADHD), has been unable to get his medications filled for months now – and he’s worried he’ll lose the first full-time job he’s ever had. For people like Erik, ADHD medication is a prerequisite for basic functioning – and over the last year it’s become dramatically harder for patients like them to access care. Last October, the Food and Drug Administration (FDA) announced a shortage of Adderall, one of the most common stimulant medications for ADHD. In recent months, patients have reported problems filling nearly every type of ADHD medication. What’s stranger is that no one seems to know why. Is it some kind of supply chain issue? A pandemic-era surge in demand? A government crackdown? Official explanations have offered little clarity. The FDA’s announcement mentioned “intermittent manufacturing delays” at Teva, the producer of the branded version of Adderall, but few other details. The American Society of Health Pharmacists reports shortages of multiple ADHD drugs but says manufacturers have given no explanation. The situation has left patients in turmoil. Read full story Source: The Guardian, 30 January 2023
  15. News Article
    ADHD awareness hassoared among women in the UK in the past year, but waiting times and the dearth of clinical awareness are leaving people awaiting diagnosis in a perilous position, leading experts have warned. Dr Max Davie, a consultant paediatrician and co-founder of ADHD UK, said that people talking openly about their diagnoses – including a number of high-profile celebreties – had led to more people seeking referrals for the condition. However, while awareness is increasing many trusts and private providers have shut waiting lists because of demand. “I think it’s probably as big a year as we’ve ever had. We are seeing a lot more people from all walks of life seeking a diagnosis later in life, particularly women,” Dr Davie said. “At the same time waiting lists have gone through the roof. NHS services have been swamped for a while and private providers are also closing their lists – there are wildly inadequate services for ADHD diagnosis, particularly for adults.” Dr Tony Lloyd, the chief executive of the ADHD foundation, said its own figures suggested a 400% increase in the number of adults seeking a diagnosis since 2020, adding that prescription volumes did not take account of those who do not use medication. “ADHD remains significantly under-diagnosed and under-treated in the UK – at great cost to public services and to the individual and the workforce,” he said. "Stigma around the condition, which the charity says affects one in 20 people in the UK, resulted in negative outcomes for individuals and high costs to the economy. Dismissing ADHD as a cultural construct and undeserving drain on finite NHS resources only adds to the enduring stigma and stereotyping of those with ADHD,” Read full story Source: The Guardian, 13 January 2023
  16. Content Article
    Attention deficit hyperactivity disorder (ADHD) is a condition that affects people's behaviour. It has a wide range of symptoms and can affect both children and adults—people with ADHD may find it hard to focus on or complete tasks, feel restless or impatient, experience impulsiveness and find it hard to organise their time and their things.[1] ADHD can have devastating mental health implications and research studies have linked ADHD to increased suicide and mortality rates. This means that being unable to access effective treatment can be a patient safety risk for people with ADHD. In this blog, Lotty Tizzard, Patient Safety Learning’s Content and Engagement Manager, explores the state of ADHD diagnosis and treatment in the UK. She looks at why many are concerned about the waiting times for adults and children seeking an ADHD assessment and speaks to Elsa*, who was diagnosed with ADHD in her 30s, about her experiences. *Name changed ADHD affects a significant number of people in the UK—The National Institute for Health and Care Excellence (NICE) cites research estimating that 5% of children and 3-4% of adults in the UK have ADHD.[2] Most people with ADHD never receive a diagnosis, but over the past few years, an increasing number of adults and children have sought help from the NHS for ADHD. However, for many, long waiting lists have delayed their diagnosis and treatment by several years. Living with ADHD can have a profound effect on people’s lives, with symptoms causing stress in relationships, work and finance. Elsa, who was diagnosed with ADHD as an adult in 2021, said, “Before I was diagnosed, I felt like I was rubbish at life. Knowing there's a name for the way my brain works has helped my self-esteem and helped me find strategies to deal with my symptoms.” ADHD petitions and parliamentary debate In February 2023, MPs held a Westminster Hall debate in response to two petitions that highlighted the issues of long waiting lists for diagnosis and treatment for ADHD and autism in the UK.**[3] During the debate, MPs discussed the issues caused by these long waits, including the mental health impacts on adults and children with undiagnosed ADHD. In her response to the debate, Maria Caulfield MP, Minister for Mental Health and the Women’s Health Strategy, acknowledged a number of these issues and the need for improvements in assessment services, stating, "I am the first to admit that we are not where we want to be, and that there is a lot of work to be done.”[4] Why has ADHD diagnosis increased? Various factors have been suggested as reasons for the increasing number of people seeking ADHD diagnosis[5] in recent years. One potential reason is greater awareness about ADHD and its possible treatments amongst the general public, with various high profile celebrities seeking to break the stigma around the condition by sharing their stories of diagnosis. This may have led to more adults asking whether their symptoms might be due to ADHD.[6] Greater awareness amongst parents and teachers has also led to more children being referred for assessment[7][8] and more applications for Education, Health and Care plans (EHCPs)[9], which set out a child or young person's special educational needs and the support they require. The Covid-19 lockdowns were shown to have a greater impact on the mental health and wellbeing of children [10][11] and adults [12] with ADHD than the general population. This may also have contributed to the increase in both adults and children seeking ADHD assessment.[13] There are also questions about whether environmental factors have led to an increase in incidence, and further research is needed to determine whether things like increased screen use, exposure during pregnancy to certain substances or pesticides used in food production, might be causing more people to develop ADHD.[14] It has also been suggested that the recent high profile of ADHD has led to overdiagnosis.[15] However, experts on the condition urge caution around this assumption as population estimates suggest the majority of people with ADHD remain undiagnosed. They are keen to stress the importance of seeking help if you suspect you have ADHD traits.[16] Current access and waiting times for ADHD assessment Lack of national data makes it very hard to determine the number of people waiting for an ADHD assessment, an issue repeatedly raised in the Westminster Hall debate. Elliot Colburn MP initially highlighted this, saying: “I asked about national data on assessment waiting times and the number of individuals diagnosed. The answer I got was, quite simply, 'We don’t know'—or, at least, the NHS and the Government do not know.”[4] As the debate progressed, a number of MPs talked about the situation in their local area and read accounts of constituents who had been waiting many years for an ADHD assessment. One reason given for long waiting times is that the UK has a lack of ADHD specialists. Dr Ulrich Müller-Sedgwick, a consultant psychiatrist recently told The Guardian that “The NHS simply doesn’t have enough clinicians with appropriate training, experience and time to deliver good quality clinical work”[5] in the field of ADHD. The impact of health inequalities There are a number of health inequalities at play, and the Westminster Hall debate highlighted that there is a ‘postcode lottery’ when it comes to ADHD diagnosis and treatment, with waiting times varying significantly depending on where you live. One MP highlighted that some areas in the UK have no adult ADHD service at all, and many others have waits of five years-plus.[4] In addition, women and girls can find it harder to get an ADHD diagnosis due to the different symptoms they tend to display—they do not always present with ‘classic’ signs of ADHD,[17] but that does not mean the impact on their lives is any less significant. Lack of knowledge about these differences amongst healthcare professionals is a key factor exacerbating this inequity of access. Elsa described her experience when she eventually saw a psychiatrist. “When I finally got an appointment after two years, the psychiatrist told me I couldn’t have ADHD because I was wearing the right clothes for the weather and could make eye contact. I was told I was ‘just comparing myself to other women’. When I went back to the service and asked for a second opinion, I ended up seeing the same doctor again! Another issue Elsa raised is the lack of clear information on the NHS process. “I wasn’t given accurate information about what to expect. I knew the waiting list could be very long, but in my initial NHS assessment I was told I’d be referred straight to an ADHD clinic, which didn’t happen.” People with ADHD may have additional barriers to overcome to access services, so it’s particularly important that the process of diagnosis is made as accessible as possible. In order to be seen by the right services, Elsa describes how “you really have to advocate for yourself. For a lot of people who have ADHD, executive function is a challenge. So organising appointments and remembering to chase things up can be a big struggle.” Issues with private ADHD clinics These long waits for NHS treatment are driving some patients to pay for private assessments, and as the demand for assessment increases and outstrips NHS capacity, the NHS is also paying private companies to diagnose and treat ADHD. This is the route Elsa eventually took after finding out via a Facebook group about ‘right to choose’ on the NHS, and asking her GP to refer her privately. She was seen about six months later and given a diagnosis of ADHD. This approach is helping many people to access assessment more quickly. However, a recent Panorama investigation raised some concerns about the depth and rigour of private assessments, with some patients being diagnosed and prescribed medication over Zoom in a matter of minutes. Patients and healthcare professionals interviewed by Panorama voiced concerns that private assessments felt like a ‘tick box exercise’ compared with more thorough assessments carried out in NHS clinics which—the programme stated—last around 3.5 hours. One mental health nurse felt the process at the private ADHD assessment service she had previously worked for was “unsafe.”[18] People with ADHD have responded to the programme on social media, highlighting that it does nothing to address the issue of lack of capacity within the NHS. Some concerns have also been raised about the programme’s approach to this investigation and its methodology.[19][20] Patient safety implications of ADHD diagnosis and treatment delays Waiting years for ADHD assessment and diagnosis can have significant implications for patient safety. Without a diagnosis, people may not receive the support they need, and research shows that the mental health impacts can have serious consequences. Undiagnosed ADHD has been shown to lead to low self-esteem, depression, anxiety and a higher likelihood of turning to substance misuse,[21] and people with ADHD are five times more likely to have attempted suicide than the general population.[22] If ADHD is misdiagnosed due to low quality or unreliable assessment practices, it raises a serious patient safety concern that people may be prescribed strong medications that they don’t need, sometimes for years. ADHD medications can have serious side effects and can worsen mental health conditions such as psychosis, if they are not appropriately prescribed and monitored. A 2015 study found that people with ADHD also have a higher mortality rate than the general population. The researchers found that people who receive a diagnosis in adulthood have an even higher mortality rate ratio than people who receive a correct ADHD diagnosis in childhood.[23] Getting an accurate diagnosis and appropriate treatment can be life-changing for people with ADHD. Elsa described the positive impact ADHD medication has had on her life: “I’ve been able to come off my long-term antidepressant as I’m on the right medication now—one which actually helps. It has quieted my brain and I am much more able to focus on tasks and conversations. Instead of lots of ‘tabs’ being open in my mind at the same time, I can just have one.” Dr Rob Baskind, a Consultant Psychiatrist highlighted in a recent Forbes article that, “Medication can be an extremely effective intervention alongside other environmental interventions and psychological support, to significantly reduce the deficits ADHD manifests whilst allowing the individual to maximise their strengths.”[24] What can be done to improve waiting times for ADHD assessment? The first step in dealing with the huge demand for ADHD diagnosis is to understand the extent of the problem. At the moment, there is no mandated national data collection, so establishing the number of people waiting for assessment is impossible. If the NHS were to adopt routine reporting processes, it would allow for a more strategic approach to tackling waiting times and inequalities in diagnosis and treatment. ADHD services are in need of sustained investment in specialist training for healthcare professionals working with people with ADHD, as well as a focus on improving access to therapy. Elsa told me her medication is recommended to be taken alongside therapy. “But I can’t access therapy on the NHS, which is very frustrating.” One approach to reducing waiting times suggested by a 2022 research study involves equipping primary care to effectively diagnose and support people with ADHD.[25] If GPs were less likely to misdiagnose ADHD as other conditions, people would be more able to access appropriate treatment. However, there are risks associated with this approach, and adequate planning and safety-netting would need to be in place to ensure patient safety. The Panorama investigation also raises questions about how ADHD services are regulated.[18] Where ADHD assessments are not provided directly by the NHS, patients need assurance that they will still be carried out with the same level of rigour and quality. It is important to ensure that all assessments and treatment decisions follow guidelines issued by the National Institute of Heath and Care Excellence (NICE) and are carried out by appropriately trained professionals. One recent positive development was the Government’s publication of its Special Educational Needs and Disabilities (SEND) and Alternative Provision (AP) Improvement Plan [26] in March 2023, which will benefit children with ADHD. If implemented effectively, the plan should improve waiting times for diagnosis and access to specialist support for children in education. Providing early intervention and support for children and adults with ADHD is better for everyone. As well as improving mental health outcomes for individuals, it reduces the pressure on mental health services, reducing the likelihood of people developing issues that require crisis treatment. **Although people waiting for autism diagnosis face similar barriers, this blog will focus on ADHD diagnosis. Get involved Do you or your child have ADHD? Are you on a waiting list for ADHD diagnosis or treatment? Are you a healthcare professional that works with people with ADHD? We’d love you to share your experiences with us by: Commenting below (you’ll need to sign up for free to become a hub member). Contributing to our community conversation about ADHD waiting times. Getting in touch with the hub team to share your experience. Related reading ADHD services ‘swamped’, say experts as more UK women seek diagnosis References 1 Attention deficit hyperactivity disorder (ADHD). NHS England, 21 December 2021 2 Attention deficit hyperactivity disorder: How common is it? National Institute for Health and Care Excellence, November 2022 3 E-petition debate relating to assessments for autism and ADHD. House of Commons Library, 2 February 2023 4 Volume 727: Autism and ADHD assessments debate. UK Parliament, 6 February 2023 5 Topping A. ADHD services ‘swamped’, say experts as more UK women seek diagnosis. The Guardian, 13 January 2023 6 15 celebrities describe what it's like living with ADHD. Cosmopolitan, 25 November 2021 7 Huang H, Ougrin D. Impact of the COVID-19 pandemic on child and adolescent mental health services. BJPsych Open, 5 August 2021 8 Oldman I. Bury CAMHS sees huge increase in children referred. Bury Times, 25 July 2022 9 Education, health and care plans. UK Government website, 12 May 2022 10 Davoody S, Goeschl S, Dolatshahi M et al. Relation between ADHD and COVID-19: A narrative review to guide advancing clinical research and therapy. Iran J Psychology, 2022; 17(1): 110–117 11 Shah R, Venkatesh Raju V, Sharma A et al. Impact of COVID-19 and lockdown on children with ADHD and their families—an online survey and a continuity care model. J Neurosci Rural Pract, 2021; 12(1): 71–79 12 Hollingdale J, Adamo N, Tierney K. Impact of COVID-19 for people living and working with ADHD: A brief review of the literature. AIMS Pubic Health. 2021; 8(4): 581–597 13 Joiner A. Is ADHD overdiagnosed in the UK? Focus on Adult ADHD website, last accessed 15 May 2023 14 Is there an increase in ADHD? Children and Adults with Attention-Deficit/Hyperactivity Disorder website, 11 July 2021 15 Herndon J. What we know about ADHD overdiagnosis. Healthline, 21 September 2021 16 Colombo C. ADHD isn’t ‘overdiagnosed’ – quite the opposite, actually. Independent, 25 November 2022 17 Kok F, Groen Y, Fuermaier A et al. The female side of pharmacotherapy for ADHD—A systematic literature review. PLOS One, 18 September 2022 18 Panorama: Private ADHD clinics exposed. BBC, 15 May 2023 19 Bloodworth J. ADHD – the truth about is misdiagnosis, 16 May 2023 20 Response to BBC Panorama “Private ADHD Clinics Exposed”. ADHD Foundation, 15 May 2023 21 Iavarone K. What to know about untreated ADHD in adults. Medical News Today, 9 February 2023 22 New study to understand the relationship between ADHD and suicide risk. University of Glasgow website, 27 September 2022 23 Dalsgaard S, Østergaard S, Leckman J et al. Mortality in children, adolescents, and adults with attention deficit hyperactivity disorder: a nationwide cohort study. Lancet. 2015;30;385(9983):2190-6 24 Doyle N. ADHD crisis in the UK: Under diagnosed, lacking support and stigmatized. Forbes, 14 January 2022 25 Asherson P, Leaver L, Adamou M et al. Mainstreaming adult ADHD into primary care in the UK: guidance, practice, and best practice recommendations. BMC Psychiatry, 11 October 2022 26 Special Educational Needs and Disabilities (SEND) and Alternative Provision (AP) Improvement Plan. HM Government, March 2023.
  17. Content Article
    Long waiting times for autism and attention deficit hyperactivity disorder (ADHD) assessments can prevent people from getting the vital care and medication they need. Health and education support often relies on a formal diagnosis, without which there can be severe negative consequences. Estimates show that there might be as many as 1.2 million autistic people and 2.2 million people with ADHD in England, and providing them with the right support is no small task. Recent news reports have highlighted a huge rise in demand for autism and ADHD diagnoses amid increased awareness and understanding of neurodiversity. Exploring referrals and waits for autism and ADHD assessments is a key first step to understanding the scale of the issue, which can then be used to drive improvements and change. This blog from the Nuffield Trust looks at what the data is telling us.
  18. News Article
    Drugs used to treat ADHD are being openly traded in "potentially lethal" doses to UK buyers on encrypted apps, a BBC North West investigation has found. Criminals are cashing in on a national shortage to offer the prescription tablets in a secret mail-order service. The BBC found an unregulated online market stacked with medication which high street chemists were struggling to stock. It is feared patients are turning to the black market in desperation, but one psychiatrist has warned some of the drugs could contain other potentially harmful chemicals. Thousands of people with ADHD have been unable to get prescribed medication amid a major supply shortage. The BBC has heard how the situation has left children and adults in limbo and with the shortage set to last until December many are believed to be turning to illegitimate traders to help treat the condition. The BBC took these findings to Dr Morgan Toerien, associate specialist in mental health at Beyond Clinics in Warrington, who said: "A lot of these drugs are potentially lethal, not just dangerous - particularly if you weren't used to taking them and if you took a higher dose. "During my work in illicit drug treatment, we've tested people alleged to have taken a lot of the drugs seen on this channel and they don't actually contain what they say they do." He said people could be taking a tablet purporting to be to treat ADHD, but could be "far more dangerous". Read full story Source: BBC News, 28 February 2024
  19. News Article
    "Taking medication meant my brain was quiet for the first time; it was amazing, I cried because I was so happy," Jass Thethi, whose life was transformed after an ADHD diagnosis just over a year ago, told a BBC North West investigation. But the 34-year-old's joy was short-lived because, like more than 150,000 others who live with the condition and are reliant on medication, Jass has been affected by a UK-wide medicine shortage that started in September. Jass, who lives in Levenshulme, Greater Manchester, said: "When the medication shortage started I had to go back to white knuckling everyday life… I had to take the decision to change things and I had to quit the job I was doing." The charity ADHD UK said it had recorded a "significant decline" in the availability of medicines, with only 11% having their normal prescription in January, a drop from 52% in September. The Department of Health and Social Care (DHSC) said increased global demand and manufacturing issues were behind the shortages. Dr Morgan Toerien, associate specialist in mental health at Beyond Clinics in Warrington, said Jass's experience was not unique and many patients' lives had been "completely destabilised". Read full story Source: BBC News, 27 February 2024 Have you (or a loved one) ever been prescribed medication that you were then unable to get hold of at the pharmacy? To help us understand how these issues impact the lives of patients and families, please share your experience and insights in our Community post. We would also like to hear from pharmacists working in community or hospital settings, and others who have insights to share on this issue.
  20. News Article
    A woman said she has been unable to get her ADHD medication for months. Hannah Huxford, 49, from Grimsby is one of thousands of patients unable to get hold of medicine to manage their symptoms due to a national shortage. Mrs Huxford, who was diagnosed with the condition two years ago, described the situation as a "huge worry". The Department of Health and Social Care (DHSC) said it had taken action to improve the supply of medicines but added that "some challenges remain". Mrs Huxford said the medicine made a "huge difference" and got her life back on track. "It enables me to function and concentrate so I can be more proactive, I can be more productive," she explained. She said she had been unable to get her usual supply since October 2023 and has to ration what she can get hold of. "Christmas time it was just getting beyond a joke. I was going back to the pharmacy, probably two or three times in a month, just to collect the little IOUs and it was getting to the point where that, in itself, was becoming a stress," she said. "All of a sudden, if this medication is taken away from me, I'm frightened that I will go back to not being able to cope." James Davies, from the Royal Pharmaceutical Society, said the supply shortage has been caused by manufacturing problems and an increase in demand. "There are more people who are being diagnosed with ADHD, more people seeking to access ADHD treatments. That's not just related to the UK, this is a global problem," he said. Mr Davies said some ADHD medication has come back into stock but added "it's quite a fluid situation at the moment". Read full story Source: BBC News, 19 February 2024 Have you (or a loved one) ever been prescribed medication that you were then unable to get hold of at the pharmacy? To help us understand how these issues impact the lives of patients and families, please share your experience and insights in our community thread on the topic: You'll need to register with the hub first, its free and easy to do. We would also like to hear from pharmacists working in community or hospital settings, and others who have insights to share on this issue. What barriers and challenges have you seen around medication availability? Is there anything that can be done to improve wider systems or processes?
  21. News Article
    A coroner overseeing a teenager's inquest has warned there will be more deaths unless mental health services improve for autistic people at risk of self-harm. Morgan-Rose Hart, 18, who had ADHD, autism and a history of mental illness had been a patient at a unit in Harlow, Essex, for three weeks. An inquest jury concluded she died by misadventure contributed to by neglect. Ms Hart, from Chelmsford, died in hospital six days after she was found unresponsive in the bathroom of her mental health accommodation in the Derwent Centre in Harlow, Essex in July 2022. The inquest into her death heard staff observations were falsified and critical observations were missed. In her Prevention of Future Deaths report, Ms Hayes said: "There is a significant shortfall of appropriate placements for people with autism who have mental health and self-harm risks in Essex both inpatient and in the community." She added: "During the course of the inquest the evidence revealed matters giving rise to concern. "In my opinion, there is a risk that future deaths will occur unless action is taken." Read full story Source: BBC News, 8 January 2024
  22. News Article
    No senior NHS England director is prepared to take responsibility for ADHD services — which are facing waits of up to a decade and severe medication shortages — HSJ has discovered. Despite soaring demand for assessments and widespread drug shortages recently triggering a national patient safety alert, responsibility for attention-deficit/hyperactivity disorder services does not sit within any NHS England directorate. HSJ understands that none of NHSE’s mental health, learning disability, or autism programmes have been given any resources for ADHD. It is also claimed that the medical and long-term conditions teams “are not very interested” in taking responsibility, and “assumed someone else was doing it”. A senior source, very close to the issue, told HSJ that no NHS senior director had taken “ownership” of the issue, and there was a widespread misapprehension that responsibility for ADHD services was part of the autism remit given to the mental health directorate. “We haven’t got the attention we need around ADHD,” said the source, “we need a [dedicated] neurodiversity programme.” Read full story (paywalled) Source: HSJ, 26 October 2023
  23. News Article
    Children are not being over-diagnosed with ADHD despite concerns about a spike in prescriptions of powerful stimulant drugs, a leading psychiatrist has said. NHS statistics show 125,000 children and teenagers in England are taking drugs such as Ritalin for symptoms such as poor concentration, up by a quarter since before the Covid pandemic. Isobel Heyman, a consultant child and adolescent psychiatrist at Great Ormond Street Hospital and lead for child mental health at Cambridge Children’s Hospital, said that on the whole ADHD remained “under-treated” and that this was driving high levels of mental illness in young people. Speaking to the Times Health Commission, Heyman said: “My understanding is that the increase in prescribing is largely related to increased diagnosis and increased recognition … We are still overall slightly under-treating [rather] than over-treating. “There is a problem about over-medicalisation of ordinary distress, ordinary ebullience and over-enthusiasm in young people.” She said the public should be reassured that ADHD diagnoses follow a “very stringent” process. However, she said private adult ADHD clinics may be less “rigorous” in providing a diagnosis. Read full story (paywalled) Source: The Times, 18 October 2023 Further reading: Long waits for ADHD diagnosis and treatment are a patient safety issue
  24. News Article
    It would take more than eight years for the NHS to see all adult patients waiting for ADHD assessments in many parts of the UK, a BBC investigation has found. Through Freedom of Information requests, the BBC has identified 24 services in that position, and nearly 200,000 people waiting. The Royal College of Psychiatrists said no-one should be made to wait years for life-changing care. The new Labour government says delays to ADHD diagnosis are part of a “broken NHS” - which it is working to fix. The long waits have been caused by rising demand - referrals have increased fourfold since 2019 - and three trusts have closed their waiting lists completely. The BBC found one trust, Sheffield, has a waiting list of more than 6,000 people and assessed only three patients last year. Only two providers look able to work through their backlogs in less than a year. All four governments in the UK say they are working to improve matters. There is no official list of adult ADHD service providers in the UK, but the BBC understands there are 70. Sixty-six responded to our request for information and 44 gave the BBC enough information to calculate their backlog. “We’re seeing more people than ever seeking support from ADHD services which are struggling to meet this demand,” the Royal College of Psychiatrists told the BBC. NHS England says it has “launched an independent expert taskforce which will investigate the challenges facing ADHD services and help them manage the rising numbers of referrals.” Read full story Source: BBC News, 25 July 2024 Further reading on the hub: Long waits for ADHD diagnosis and treatment are a patient safety issue
  25. News Article
    The NHS has been told it can start using a new digital test to speed up the diagnosis of ADHD in children and young people, which up to now could often take several years. The National Institute for Health and Care Excellence (NICE) has issued draft guidance approving the use of the QbTest by psychiatrists and specialist children’s doctors. The computer-based test measures the three main characteristics of ADHD: inattention, impulsivity and hyperactivity. Clinicians can use the results alongside other information they have gathered to help them diagnose, or rule out, that a young person has the condition. NICE said the test could be used when diagnosing six- to 17-year-olds in England and Wales. Experts welcomed the move, saying the QbTest would help doctors diagnose more people within six months of them first being assessed. Dr Jessica Eccles, the chair of the Royal College of Psychiatrists’ neurodevelopmental special interest group, said: “People who suspect they may have ADHD often have to wait months or even years for an assessment which can prevent them from accessing timely and effective care. Any new evidence-based tools should be used to reduce these unacceptable waiting times and improve the availability of support.” Read full story Source: The Guardian, 16 July 2024
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