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  1. Community Post
    The impact of living with undiagnosed ADHD can be significant, but adults and children in the UK are sometimes having to wait years for an initial ADHD assessment. Have you been diagnosed with ADHD? Are you or your child on a waiting list for ADHD diagnosis or treatment? Or are you a healthcare professional that works with people with ADHD? Please share your experiences of assessment and diagnosis with us. You'll need to be a hub member to comment below, it's quick, easy and free to do. You can sign up here. You can read more about the issues related to ADHD diagnosis in this blog: Long waits for ADHD diagnosis and treatment are a patient safety issue
  2. Content Article
    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.
  3. News Article
    Patients are being offered powerful drugs and told they have attention deficit hyperactivity disorder (ADHD) after unreliable online assessments, a BBC investigation has discovered. Three private clinics diagnosed an undercover reporter via video calls. But a more detailed, in-person NHS assessment showed he didn't have the condition. Panorama spoke to dozens of patients and whistleblowers after receiving tip-offs about rushed and poor-quality assessments at some private clinics, including Harley Psychiatrists, ADHD Direct and ADHD 360. The investigation found that: Clinics carried out only limited mental health assessments of patients. Powerful drugs were prescribed for long-term use, without advice on possible serious side effects or proper consideration of patients' medical history. Patients posting negative reviews were threatened with legal action. The NHS is paying for thousands of patients to go to private clinics for assessments. Commenting on Panorama's findings, Dr Mike Smith - an NHS consultant psychiatrist - said he was seriously concerned about the number of people who might "potentially have received an incorrect diagnosis and been started on medications inappropriately". "The scale is massive." Read full story Source: BBC News,
  4. 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
  5. 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
  6. News Article
    Gender bias is leaving many women with attention deficit hyperactivity disorder undiagnosed, leading psychologists are warning. The prevailing stereotype ADHD affects only "naughty boys" means at least tens of thousands in the UK, it is estimated, are unaware they have the condition and not receiving the help they need. "I used to tell doctors and therapists all the time, 'You've got to make this constant noise in my head stop. I can't think. I can't sleep. I can't get any peace,' but this was always dismissed as anxiety or women's problems," Hester says. Diagnosed with depression at 16, she spent much of her 20s unsuccessfully battling to be referred to a psychiatrist. And she constantly felt she was not reaching her true potential. Hester was finally diagnosed with ADHD in 2015, aged 34, and only, she says, because her husband had discovered he had the condition, a year earlier. His diagnosis took 12 months. "At no point did anyone say to Chris, 'This sounds like anxiety,' or 'Have some tablets,'" Hester says. "He was taken seriously." "Whereas with me, I was on the doctor's radar from the age of 16. "Bluntly, it took so long for me to be diagnosed because I'm a woman." Read full story Source: BBC News, 26 October 2021
  7. 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
  8. Content Article
    Mental Health Safety Improvement Programme Early Intervention Eating Disorder (FREED) Focus ADHD Supporting high impact users in Emergency Departments (SHarED) Future Challenges: Young People and Mental Health Resilience S12 Solutions
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