By Callum Wright
Families of Nottingham children with ADHD say some have had to go weeks without medication because of a national shortage they feel “no one” is paying attention to.
Kimberley Grant, who runs the Nottingham ADHD Parents social media accounts, is among people speaking out after months of waiting for news on drugs including Methylphenidate.
She and Asian buffet restaurant May Sum on Lower Parliament Street hosted a coffee afternoon with the aim of connecting the ADHD community and raising money on Tuesday October 15.
The event gave people connected to ADHD a chance to meet and talk to each other about their experiences as part of ADHD awareness month.
Kimberley, who has a child with ADHD, spoke how she has and others in Nottingham have experienced the medication shortage first hand.
“This is my biggest frustration, nobody wants to look into the shortage,” she said.
“The Department of Health said it would take a few months, this was last year; we got told it would be sorted in April this year (2024), and we’re still struggling.
“My daughter in fact went five weeks without medication because we just couldn’t get it; you’re just a number on the system.”
ADHD – attention deficit hyperactivity disorder – is a behavioural condition that can affect people’s ability to concentrate, make them seem restless and cause them to act on impulses.
The Government announced in Autumn 2023 there was a national supply shortage of ADHD medication due to a combination of manufacturing issues and an increase in global demand.
Medicines including Methylphenidate, Atomoxetine and Lisdexamfetamine, which work to improve focus and reduce restlessness, have been affected by the shortage.
Kimberley says she has spoken to people within the ADHD community about increased wait times to receive a diagnosis after Children’s Commissioner Dame Rachel de Souza issued a report on September 15 warning hundreds of thousands of children in England were facing long wait times for an ADHD/Autism diagnosis.
“Everything’s about funding,” she said.
“I do think it’s really bad that young people especially are being told to wait for long periods of time when we could do intervention now to help them in the future.”
May Sum began offering autism friendly dining experiences in 2024 as well as a sound-proof rooms for families to use.
Restaurant co-owner and co-director Zen Doctzan says they were introduced after the business noticed a shortage of similar spaces in the city.
“My son has autism and ADHD and I raised him without much support, and I wanted to think about what I could do to help the community and support everybody,” she said.
“By doing that was to become inclusive as a restaurant and put myself to that position.”
She added: “[Meeting other families] is really important because without sharing those experiences then you’re not going to be able to know any of the traits of where to get support or advice from.”
She said: “We as Nottingham city need to be more accessible for not just children but adults and young people with disabilities, to welcome them in.
“It’s not scary to come out and have dinner, there’s places like May Sum that dedicate rooms for a nice environment and calm dining experience, it’s brilliant and there needs to be more places in Nottingham to see this and want to make a change.”
Talking about the education of ADHD children, Kimberley added: “I don’t think enough is being done.
“People with ADHD really do struggle in mainstream schools and so much more can be done; more aids to be given, a better understanding.”
When asked about the shortage of ADHD medication, a Department of Health spokesperson pointed to Lord Darzi’s independent report on the state of the NHS, published in September.
“Following intensive work with manufacturers, recent supply issues with most ADHD medicines have now been resolved,” the spokesperson said.
“We are continuing to work with manufacturers to ensure action is taken to resolve remaining supply problems with one specific medicine as quickly as possible and to mitigate risks to patients while these issues are being addressed.”
When asked about the problems with waiting times for ADHD diagnoses, they added: “The report laid out how severe the delays for children waiting for an ADHD diagnosis has become.
“Through our 10-Year Health Plan, this government will tackle this head-on – reducing unacceptable waiting times and improving support before and after a diagnosis.”