A Dundee mum claims parents in Tayside have been left in the dark over shortages of some ADHD medication.
Arlene McAinsh says there has been a lack of information from NHS Tayside and the Scottish Government about the fact that some ADHD drugs are in short supply.
She says there is also very little being done to support parents and carers of children with ADHD – with no advice about what they should do if they are unable to get hold of the medication they need.
Arlene’s 20-year-old son has ADHD and autism and takes one of the drugs affected by the shortage.
She also runs an Autism/ADHD Advice Group for Dundee & Angus on Facebook.
It includes a lot of members who have children with autism/ADHD or both who are extremely worried about the situation.
‘Lack of information’
“There has been a definite lack of information about the shortage of some ADHD medication,” Arlene, 57, said.
“I only found out the other day that NHS Tayside had put something about it on their Facebook page on October 26.
“But there has been nothing else since then.
“One of the parents in my group uploaded screenshots of a letter from NHS Tayside saying which medications are in short supply.
“I thought this letter had been posted out to her but it hadn’t.
“She only happened to see it by chance when she was at CAMHS [NHS Tayside Child and Adolescent Mental Health Service – CAMHS] for an appointment and it was sitting at the reception.
“One of the medications mentioned in that letter is the one my son is taking.
“And it says you shouldn’t stop taking it abruptly as it can have bad side effects including causing high blood pressure.
“I have two and a half weeks supply left and at the moment I don’t know if I will be able to get any more.”
Unaware 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.
ADHD is a condition that affects approximately 5% of the UK population. It is understood around 37,000 children and young people in Scottish schools have ADHD.
Arlene said none of the parents in her group have received letters from NHS Tayside.
Her comments come after parents in Fife received letters from NHS Fife to say there were shortages of some ADHD medications.
And those parents criticised the health board for not making them aware that some medications for ADHD have been running low for the past few weeks.
Arlene said: “None of us knew which medications were in short supply until now,”
“I feel that letter should have been sent to all parents and carers and adults on ADHD medication.”
Arlene said she first realised there was a shortage in mid-October when she saw a post on Facebook.
“Then there was a post on the NHS Tayside CAMHS Facebook page which had just general advice saying there was a shortage.
“But there was no information about what actions to take and there was no list of the actual medications affected either.
“I handed in my son’s prescription two weeks ago and managed to get it so I didn’t think he would be affected.
“That is until this week when I discovered his medication is one of the ones impacted by the shortage.”
Impact on mood and behaviour
Arlene said her son Jason takes Guanfacine every day and says it would impact his mood if he doesn’t take it.
As well as ADHD, Jason also has autism and an anxiety disorder and his medication helps him with all of these conditions.
“He could get angry more easily as well as symptoms of hyperactivity.
“Without it he would be more anxious, not able to concentrate and not able to sit still.”
Arlene has contacted the office of her local MSP for Dundee City East Shona Robison about the situation.
She received a reply from a senior caseworker saying Ms Robison intends to raise it with the chief executive at NHS Tayside and the cabinet secretary for health at the Scottish Government.
Arlene added: “We just feel there is no support, no information from the health board or the Scottish Government.
“We have just been left in limbo.”
Another Dundee parent, who is a member of the Facebook group and wants to remain anonymous, has also expressed anger at the lack of information.
She hasn’t been able to get medication for her 12-year-old son since she went to pick up his prescription last month.
She said: “I was only made aware of the shortage when I went to enquire about my boy’s prescription.
“This was in the first week in October. His prescription had been re-ordered over a week before that but I still don’t have it.
“I have heard nothing from doctors or CAMHS about the shortage of medication. It is absolutely ridiculous.”
The available supply of ADHD medication continues to be ‘reviewed’
A spokesperson for NHS Tayside said while they cannot comment on individual cases, they encouraged Ms McAinsh or her son to get in touch with the service to discuss his situation.
The spokesperson said: “NHS Tayside established a multi-disciplinary group to bring key clinicians and managers from CAMHS and adult services together to manage the recognised issues with the supply of ADHD medications.
“The availability of ADHD medicines is out with our control and is continually changing.
“The group continues to review the available supply of medication and update local guidance.”
The spokesperson said early efforts were concentrated on people who are taking medicines that should not be stopped abruptly (Guanfacine).
He said all individuals taking these medicines have had their situation reviewed and been ‘proactively contacted’ with a person-centred plan.
“For those people taking the much more commonly prescribed ADHD medications, advice was prepared for GPs and for patients/carers.
“This information is to be discussed with people during clinical contact.
“This was viewed as the best way to ensure that people had a response that accurately reflected the situation for the medication they are prescribed.”
The spokesperson added that for CAMHS patients and their families, updates have been and continue to be shared on the CAMHS section of the NHS Tayside website and the NHS Tayside CAMHS Facebook page.
Shortages ‘resolved by end of December’
A Scottish Government spokesperson said a National Patient Safety Alert has been issued regarding supply disruptions for various medicines used in the treatment of ADHD.
These alerts set out actions that healthcare organisations must take to reduce an identified risk.
In this case doctors have been told to not give new patients a prescription for any of the affected drugs until the shortages have been resolved.
Healthcare professionals have also been asked to check in on patients currently taking the medication and establish how much of a supply they have remaining.
The shortages have been caused by a number of factors.
This includes post-Brexit manufacturing issues and an increase in global demand.
The spokesperson said it is hoped that the shortages will be resolved by end of December.
He added: “The NHS has robust systems in place to manage medicine shortages when they arise and anyone affected by this issue should speak to their usual clinical team.”