NHS patients seeking diagnosis for attention deficit hyperactivity disorder (ADHD) face a waiting times “crisis”, with some not receiving an initial assessment for seven years, a charity has found.
ADHD Action — a charity campaigning for improved services and awareness for people with ADHD — found that a third of adults awaiting assessment had been waiting for over 13 months. Under the NHS constitution, patients have a right to begin treatment within 18 weeks of a GP referral.
ADHD is estimated to affect 1.5 million UK adults, though only 120,000 are diagnosed.
“The numbers are staggering,” ADHD Action told The Big Issue. “If this were any other condition it would be seen as a national emergency, given the sometimes deadly adverse impacts this has on untreated adults. This can be as serious as a 10-year reduction in life expectancy.”
“The NHS as a whole and many individual CCGs do not appear to be taking ADHD seriously enough to put adequate resources into specialist services,” the statement continued.
“Adults with ADHD are at an increased risk of anxiety, depression, self-harm, suicide, alcohol and substance abuse. In addition to this, we frequently [face] problems with employment, debt, and failed relationships.”
ADHD Action also found 37 per cent of those who were diagnosed privately did so because of the waiting times for NHS services. A further third went private because of a lack of ADHD services in their area, or because they were refused a referral.
When Sam, 23, first sought a referral to an ADHD specialist in 2016, he struggled to get his GP to take him seriously. “I was asked if the visit was necessary, as engineering students [like me] often needed to ‘think outside of the box’,” he said. “Only after insisting I wished to be seen could I even begin the process and be referred.”
“I was sent a letter stating the waiting list was two years long,” Sam continued. “This letter had been handwritten over, with the ‘two years’ crossed out, and ‘three years’ written above. There was also a note encouraging me to pursue private treatment.”
“After waiting for three years, I found out that my name had been removed from the shortlist as I had failed to reply to a letter,” Sam said.
A student at the time, Sam informed his GP that he would be moving frequently, and kept his contact details up to date. Despite the best efforts of both Sam and his GP, Sam said he was “told that my name has been added to the bottom of the list and there is nothing that could be done.” After university he moved back to north Wales, where he was finally seen by an NHS clinician in late 2020 — almost four years after he first sought help.
Don’t get me wrong, treatment has drastically improved my life, but the trauma from living that way for so long will take years to heal.
Sam, who waited nearly four years for an NHS appointment
“When I went to get seen for ADHD, I was at my worst,” Sam said. His ADHD “led to huge issues with anxiety, and from that anxiety stemmed depression and then anger.” Being told to wait for three years “when I was already at the edge”, Sam “lost hope that I would ever be able to connect with anyone”, or “ever be able to feel consistently happy”.
A year on from his diagnosis, Sam said the impact of coping without treatment “still [causes] me to struggle in my day-to-day life”.
“Don’t get me wrong, treatment has drastically improved my life, but the trauma from living that way for so long will take years to heal,” Sam said.
The state of care in the NHS has caused thousands of patients to seek treatment through Psychiatry UK, a private company contracted to provide online ADHD assessment and treatment on behalf of the NHS in parts of the country.
Through the NHS Right to Choose, under which NHS patients can choose to receive healthcare from any NHS provider, adults with ADHD have been able to get assessed within months, rather than years.
“In late April, I asked my GP for a Psychiatry UK referral,” Masood, 22, told The Big Issue. “The process was quick and friendly. Psychiatry UK gave me a form to see the impact of my symptoms, and I had a consultation with a doctor in late July. I was diagnosed immediately and given the option of counselling or medication for late September.”
Since then, however, the explosive demand for ADHD treatment has overwhelmed the service, with Psychiatry UK receiving around 150 referrals per day by mid-August. Over 6,500 patients have appointments before November 2022, and a further 7,000 are waiting for appointments once improvements have been made to the booking system.
Psychiatry UK told The Big Issue: “We have experienced a dramatic increase in the number of people seeking treatment under their NHS Right to Choose. We are actively recruiting staff across our organisation to manage the demand.
“Our titration team has expanded from four nurses to over 40 clinicians, with twelve more to be interviewed in December 2021.”
Although several new psychiatrists join the team each month, the demand for diagnosis and treatment shows no signs of slowing down. “We continue to receive hundreds of new referrals each week,” Psychiatry UK said.
“It’s unfortunate that [Psychiatry UK] waiting times have increased so drastically,” said Masood. “I know that if I were in this position of waiting a year or more, I would have probably given up trying. And this is the reality for people that I’ve spoken to who don’t know about Psychiatry UK, because they are discouraged by how long the NHS waiting times are.”
The toll delayed care is taking on those with ADHD is something campaigners are all too aware of.
“We are so often being failed by the NHS and put at increased risk by long waiting times,” said ADHD Action. “The government and NHS England need to [provide] the services so many of us are desperate for – by training more specialist staff and commissioning more specialist services.”
Without widespread awareness about ADHD and its symptoms, many adults are unaware that they are affected.
In addition to improved healthcare services, ADHD Action is calling for an ADHD parliamentary act to “give ADHD the legal parity and recognition we need”. Training for educators, employers, social services, and those working in the criminal justice system would help to identify ADHD earlier, and to mitigate the symptoms, they said.
“My teachers should have noticed my very apparent [ADHD] symptoms,” said Masood. “It may be less obvious when a child isn’t very hyperactive, but I struggled a lot when it came to organisation, homework, punctuality, and keeping attention. If they had been trained to look out for it, my life would have been much easier.”
NHS England and the Department for Health and Social Care did not respond to requests for comment.
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