‘We took out a remortgage to buy ADHD medicine for our kids’

Nearly 400,000 private prescriptions were issued for ADHD medication last year as patients sought to bypass long NHS waiting lists, with people spending millions of pounds on the treatment.

Figures obtained by the BBC show the number of prescriptions for the drugs rose from 28,439 in 2018-19 to 397,552 in 2023-24.

A West Yorkshire family said they opted to re-mortgage their home to meet the costs, as research shows it can take up to eight years to clear the backlog for ADHD assessments in some parts of the UK. It may take time.

The Department of Health and Social Care said it was working to “get the waiting list under control”, and said the NHS had recently launched an “ADHD taskforce” to help tackle delays.

ADHD (Attention Deficit Hyperactivity Disorder) is a condition that affects people’s behavior – making it hard to concentrate and manage time.

Acting impulsively and taking risks can also be an issue and is also linked to serious mental health illnesses like depression and anxiety.

According to the National Institute for Health and Care Excellence, 3-4% of adults in the UK have ADHD, while the global prevalence of the condition in children is estimated to be around 5%.

A BBC investigation last year found that more than 196,000 adults were on NHS waiting lists looking for a diagnosis in several areas of the UK. Recording of waiting time of at least eight years,

Janine and Chris from Halifax are among those taking action to bypass the long wait.

The couple were told it could be two years before their children, 13-year-old Oliver and eight-year-old Sophie, could be seen by the NHS in West Yorkshire.

“Oliver’s ADHD was debilitating,” Janine said.

“For both children, ADHD manifested through anxiety, an inability to focus on their education, and emotional dysregulation.

“Oliver was unable to go to school because of the anxiety. Sophie, especially on Mondays, would come home completely burnt out. We were just banging our heads against the wall with the NHS.”

After deciding to go private, the couple paid more than £8,000 for both children’s diagnoses and an additional £500 a month for their medication.

The couple said they have switched to an interest-only mortgage to fund treatment.

“It felt like we had no choice,” Chris said.

“Finding money every month is even more stressful when you’re already struggling with the challenges of ADHD.”

Janine added, “There’s a shelf life to how long we can afford it because it’s definitely a financial strain.”

His son, Oliver, said: “When I didn’t have the medication, it was difficult to focus and concentrate, and I would become easily confused.

“But since I started taking the medication I have become much better and in the last four months I have started learning to play the guitar.”

Figures obtained by the BBC through a Freedom of Information request to the NHS Business Services Authority show that an estimated 30,000 patients in 2023-24 were privately prescribed the equivalent of 525,000 packets of controlled ADHD medication.

The most commonly prescribed drug, methylphenidate, can cost private patients between £15 and £50 per month. Whereas lisdexamfetamine and dexamfetamine can cost patients between £50 and £130 per month.

However, some families say the cost of private medicine is unaffordable.

“We wouldn’t have been able to afford the monthly costs,” said Jenny Barker, from Pontefract, who has been trying to get her 21-year-old daughter Nicole an NHS prescription for ADHD drugs for the past seven years.

“If we were to go private, and I’m being honest, it would probably mean that we would have to go down the route of going into food banks, because we would have to make cuts in other areas of the household budget,” she said.

“The system is broken and incredibly unfair.”

Graham, from West Yorkshire, said he was paying less than £100 a month for his ADHD medication after he was left unable to work after being diagnosed with severe depression and anxiety four months ago.

He said he thinks the increased awareness of the condition as well as the increase in online content is prompting people to seek personal help.

There are videos on YouTube and TikTok claiming to help people self-diagnose garner billions of viewsWhile celebrities such as TV presenter Ant McPartlin, singer Jessie J and comedian Johnny Vegas have recently shared details of their diagnoses.

He said, “It’s been a good investment, but I think a lot of people watch YouTube videos for ADHD medication that describe sudden complete stillness and peace of the brain and get their hopes up on that happening to them. “

“My experience and talking to other people shows that the effects are much more subtle than that.”

Emily Dove, who also has ADHD, works as a personal assistant psychologist in Leeds.

“We’re seeing more and more private referrals where people are absolutely desperate,” he said.

“People can no longer wait as long as they are being told they have to wait with the NHS, and they see no other option than scraping together the money to pay for a private assessment.”

Ms Dove was diagnosed with ADHD in her early 30s and said women and girls in particular struggled to get a diagnosis through the NHS.

“I remember going to see my GP and him telling me that ADHD is a trend and everyone thinks they have it. It was extremely invalidating. The stereotype for ADHD is still of hyperactive, excited boys around. -Have to run there.

“I think it’s cheaper for the NHS to diagnose people with anxiety and depression, which are often by-products of ADHD, than to properly assess and diagnose people for ADHD.”

An NHS spokesperson said: “Patients are having to wait too long for an ADHD diagnosis, which is why the NHS has had to Launched an independent expert taskforce “Which will look at the root causes of the problem across a number of areas, as well as help the health service manage the increasing number of ADHD referrals.”

A spokesperson for the Department of Health and Social Care said, “Lord Darzi’s report shows how serious the delays in our broken NHS have become for people waiting for a diagnosis of attention deficit hyperactivity disorder (ADHD).

“This Government will get the NHS back on its feet and get waiting lists under control, so people don’t feel they have to turn to the private sector for treatment.

“NHS England’s ADHD Taskforce is also bringing together expertise from the NHS, the education sector and the justice system to better understand the challenges affecting people with ADHD.”

Listen to the highlights here West Yorkshire on BBC SoundsConnect with the latest Look North episode Or tell us a story that comes to your mind we should cover here,