On the afternoon of 11th July, I sat breathing deeply in Parliament Square. I knew full well that if Jackie could understand the personal impacts and resources wasted by failing to address ADHD, we had a huge shot at goal.
The topic was the health impacts of ADHD. I spoke about my own journey, and got quite choked when I explained how close it came to killing me before diagnosis. I also revealed a preview of the shocking stats from our latest survey about waiting times and lack of services, and GPs and teachers so often not having a clue.
Next up was Askar, a wonderfully bright and articulate young man who shared a heartbreaking story of how his obvious ADHD was missed for years by CAMHS and teachers. This has not only had a huge impact on his mental health, but also an impulsive poor decision may still change his future.
His father then passionately shared his frustration at his son’s tale, and asked the government to ensure their family’s story became a thing of the past. Next was consultant psychiatrist Peter, who explained that long waiting times have been sadly lethal, avoidable given how treatable ADHD is. And how many medical professionals still failed to understand.
This was followed by an open discussion, and several others emotionally shared their own ADHD stories.
The brilliant ADHD Advocate Stephanie took extensive written notes of the Minister’s response:
(Please bear in mind that this is not an official report or publication of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The account expressed below is from members of the group)
“I thought I knew about ADHD. I really knew nothing until I heard about these experiences. Thank you for being so honest. It shows how ignorant we all are. I have made loads of notes. The condition encounters real prejudice. Many see it as a behavioural disorder that you grow out of.
The interaction with GPs – their lack of knowledge around ADHD – is what concerns me most – for GPs/medical professionals to show prejudice in relation to a medical condition is totally unacceptable! We need to see what we can do about it. I will keep the dialogue open with Jo Platt.
We need to make the public aware about the invisibility of symptoms, and particularly in girls. Everyone talks about depression and anxiety… this should be the same in relation to ADHD. I’m pleased to hear about the experiences around medication. Prescriptions have doubled in 10 years. What you’ve said about it is quite interesting and I would like to hear more about it. There is a lot of bad press around this. We need to tackle that!
People with ADHD are massively represented in prisons. As well as people with autism and specific learning difficulties. How criminal justice deals with these things… it’s getting better. Prison is not the best place for these people. They are ending up in prison because society is failing to do the right thing at an early stage. Attention is only given when people become a menace to society. We are trying to encourage more sensitivity – to consider treatment vs criminal justice system. We are making a lot of progress.
It is a whole other issue with schools. Schools are key to this! School is the place where we ought to pick this up. It will take time however. We need a lot more mental health support in schools. There will be a Mental Health lead in every school. Central to this is ADHD. Mental Health Support will be provided in the form of psychologists. Teachers need professional support. It is a work in progress. It won’t happen overnight. There will be a brand new workforce of 8000 staff to help in schools.
We acknowledge the difficulty with the transition from child to adult. There are programmes to tackle that. Different areas have different ages for what constitutes an “adult” ie 16 vs 25. In the workplace, we are tackling discrimination so people are able to participate without stigma. We want to make sure that employees treat people with sensitivity (those with physical disabilities as well as invisible disabilities!)
You have all given me so much to think about…”
There were other issues put to her which she has promised to look at, such as huge problems in different geographic regions, and the postcode lottery issue.
I spoke to Jackie at the end, and she gave me a hug, and said I made her well up. She is genuinely keen to help, and we talked about ways to quickly start making some changes.
The best news is that she was in touch with Jo Platt’s office very quickly afterwards to plan meetings to move the agenda forward!
We have a long way to go, and we won’t fix all of the huge issues we face overnight, but I feel so full of hope and optimism.
Thanks to everyone’s hard work, we now have the government properly listening and committed to change. We can do this.
We’ll soon have lots more ways for you to get more involved in Team ADHD, working together to build on these foundations.
But we do need your help to continue our work and fight hard for change. Please donate using this link:
“We are all the spark that will light the fire” – General Holdo, The Last Jedi