Parents in Fife have voiced fears for their children’s mental health and behaviour amid a national shortage of some ADHD medications.
They have criticised NHS Fife for not making them aware that some medications for ADHD have been running low for the past few weeks.
ADHD experts have warned losing access to medication could be “life changing” for the young people involved.
Shortage of the drugs could worsen existing mental health conditions, as well as sparking chaos in the children’s home and school lives.
Mum Sabrina Duncan, from Methil, has two sons with ADHD.
She struggled to get their medications in September after being informed by her pharmacy there was a ‘manufacturing problem’.
“I am really worried about what will happen if I can’t get the next prescription. What will I do then?”
Her youngest son, aged nine, struggles to concentrate without his medication, Lisdexamfetamine.
While her oldest, 14, is prone to “meltdowns” without Xaggitin.
“This shortage is very worrying.”
Not aware of ADHD medication shortage
Attention deficit hyperactivity disorder (ADHD) is a group of behavioural symptoms that include: difficulty concentrating and paying attention, hyperactivity and impulsiveness.
The NHS prescribed ADHD drugs to more than 25,900 patients in 2022/23, according to Public Health Scotland figures. Nearly half, 12,182, of those patients were adults.
Sabrina, 36, only discovered there was a national shortage of ADHD medication after seeing a post on Facebook.
“Parents were then commenting saying some had received letters to say there was a shortage with some medications for ADHD.
“I hadn’t received any letter and didn’t know there was a national shortage.”
Sabrina, who finally got a letter from NHS Fife at the end of last week and managed to get her sons’ prescriptions from a different pharmacy, said: “We should have been told about this so we were prepared and could try to get medication elsewhere.”
Sabrina said she is worried about the impact on other families too.
“There are some children who need to be on their medication because they could be a danger to themselves or others depending on how their meltdown goes.
“You can’t just suddenly give a child another medication either because they could have a bad reaction to it.
“I really hope these issues with the shortages can be sorted soon. There might be parents affected by this and have no idea there is a problem.”
‘Medication can’t suddenly be stopped’
Parent Cheryl Cassidy, from Leven, also discovered there was a problem when her 18-year-old daughter Ellie’s ADHD repeat prescription medication wasn’t available at her local pharmacy.
She said: “It’s usually there after two days, but days later she still hadn’t been told it was ready to collect.
“When my daughter phoned up to ask why her medication wasn’t ready and she was told they couldn’t get it anywhere – that there was a shortage.
“I was actually at Whyteman’s Brae Hospital on October 9.
“When I was there I asked if there was a shortage of some ADHD medication and at that point, they said they didn’t know.
“They hadn’t heard anything.”
Cheryl said her daughter’s medication, Guanfacine, can’t be stopped suddenly – she needs to be weaned off it.
She explained: “Her blood pressure can spike really high.
“If she doesn’t take it over two days she can withdraw really badly.
“She can’t sleep, she has a fever, her body aches – it’s like she has a bad case of the flu.
“If she doesn’t have her medication her temper can be quite bad and she isn’t able to regulate her emotions.
“It’s like the normal teenager behaviour but times that by 100 because you have a child with ADHD.”
No communication from NHS Fife
Fortunately Cheryl did manage to get her daughter’s medication – her pharmacy managed to source it from Edinburgh.
“I hadn’t had a letter like other people had to pre-warn me that her medication was out of stock,” she said.
“If I hadn’t put a post on Facebook I would never have known this was a bigger problem.
“It is disgusting this has been allowed to happen.
“If this was diabetes, asthma, schizophrenia or bipolar medication there would be uproar.
“But because its ADHD and it’s in children it’s just being brushed under the carpet.”
Cheryl did eventually receive a letter from NHS Fife by the end of last week.
She added: “Until the end of last week I had no communication about this. The most communication I have had is from the post I put on Facebook.
“From that I was able to get information from other parents. But this isn’t right when it comes to a child’s health.”
Like ‘taking a wheelchair’ from a disabled person
Henry Shelford, CEO and Co-Founder of ADHD UK, said: “ADHD medication is life changing for many with ADHD.
“ADHD is a disability. The sudden removal of medication is akin to removing a wheelchair from a disabled person that needs it.
“Removing ADHD medication has that impact. Just because you can’t see it doesn’t mean it isn’t life changing.
“The NHS should have realised that this was happening and had a plan in place. Instead, individuals and parents are only finding out when their pharmacy can’t supply.
“They’re being left stranded with no support.
“It is an abject failure but sadly this lack of care is something we’ve come to expect with our stigmatized condition.”
NHS Fife bosses ‘recognise potential impact’
Benjamin Hannan is NHS Fife director of pharmacy and medicines.
He said there were “ongoing issues” affecting global supply of drugs used to treat ADHD.
“We recognise the potential impact such a shortage may have on individuals and families. We are working to minimise this as much possible.”
He said they were writing to patients and advised those affected to contact “clinical teams” for extra support.
“Work is ongoing at a national level to help resolve the supply issues. And there are indications that the situation is likely to improve over the coming weeks and months.”
Hopes ADHD medication shortages can be ‘resolved’ by end of the year
A Scottish Government spokesperson said: “The Scottish Government recognises the impact of these global shortages on people living with attention deficit hyperactivity disorder (ADHD) and their families.
“A National Patient Safety Alert has been issued regarding supply disruptions for various medicines used in the treatment of ADHD.
“The shortages are caused by a combination of manufacturing issues and an increase in global demand.
“It is hoped that the shortages will be resolved by the end of December.”
Conversation