The Government's response to the ADHD petition: democracy broken down
6 months ago, I started a petition calling for a Public Inquiry into pre and post diagnosis ADHD support.
This was after the Government had recognised the need to improve NHS care for neurodivergent people, with some waiting 7 years for assessments, in a Parliamentary debate last year.
It reached 11,304 signatures, so the Government had to respond. In summary, their response says 'it's not our problem', but it is - so please write to the Petitions Committee to request a revision here.
Here's the detailed breakdown of the response:
"The Department acknowledges that some people are experiencing long waits for an assessment of attention deficit hyperactivity disorder (ADHD) and access to support. We recognise that it is vital that people not only receive a timely assessment and diagnosis, but also that they receive the support they need before and after this in order to live fulfilled lives."
Calling 7-10 years waiting lists a 'long wait' is an understatement. As I write this, I have been unable to access my ADHD medication for over 6 weeks, and face this continuing until April 2024 at the very least.
I am one person: there are hundreds of thousands of people on waiting lists around the UK, who are in crisis, with their entire lives at threat. ADHD medication is not a 'highly controlled' drug because it's optional: it's because it is extremely powerful and can have a significant impact on our health - positively or negatively.
"We have no current plans to hold a public inquiry into how ADHD assessments and pre- and post-diagnostic support are managed. The Health and Care Act 2022 requires Integrated Care Boards (ICBs) to commission and provide health care services in collaboration with their partner NHS and Foundation trusts, for their population, based on local area needs. It is for ICBs to decide how services are funded in their area. It is a statutory requirement for ICBs to ensure that the public are appropriately involved in planning, proposals and decisions with regard to the commissioning arrangements for health services."
The provision of ADHD support by ICBs is clearly not working. Dr Lucy Clement has said how 'not a single penny of NHS money has ever been ring-fenced for ADHD and no NHS England directorate was taking responsibility.'
In Yorkshire, since March 2023, 85% of ADHD and Autism assessment requests have simply been blocked unless a person is in crisis mode. None of those that have been referred (i.e people at serious risk) have actually led to an assessment taking place.
If it's a statutory requirement for ICBs to ensure that the public are appropriately involved in commissioning decisions, and they are clearly not meeting this, surely this means the Government is responsible and should take action?
"The National Institute for Health and Care Excellence (NICE) is the organisation that provides guidelines for assessing and managing ADHD... NICE keeps its guidelines under active surveillance to ensure they reflect changes in the evidence base and clinical practice.
We expect all ICBs and NHS trusts to take NICE’s ADHD guidelines fully into account when commissioning and providing services, to improve the assessment and diagnosis of ADHD, and the quality of care and support that people receive."
This year, the Government's own broadcaster service ran a Panorama television show (terrible as it was), suggesting NICE guidelines were not being followed by healthcare professionals. If it is arguing that private practice undermines the clearly exemplary treatment provided by the NHS, then why doesn't it do something about this?
Ultimately, who is responsible for the ICBs, NHS trusts, and NICE? Who makes the law that the guidelines are adopted from? Oh, that's right - the Department for Health and Social Care - our democratically elected Government.
"Making a diagnosis can be complex because there is no physical test for ADHD (such as a blood test). The NICE guidelines do not recommend a maximum waiting time between referral and an assessment for ADHD. However, the NICE guidelines recognise the importance of people being able to access support to manage their symptoms and live well with ADHD."
Just because the NICE guidelines don't prescribe a maximum waiting time, and the diagnosis process can be 'complex', does not mean that people should be waiting 10 years for an assessment. This undermines the point of having any guidelines in the first place, and so the Government should take action.
"The NICE guidelines recommend that people with ADHD should have a comprehensive treatment plan that addresses their needs and highlights the importance of healthcare providers holding regular discussions with people with ADHD, and their family members or carers, about treatment planning."
The NICE guidelines do indeed recommend this, but I have never, ever heard of a single person being provided with a treatment plan from their GP following an ADHD diagnosis.
This should include a 'structured discussion' around how ADHD affects them as an individual, the importance of environmental modifications, and signposting towards support such as 'websites'.
Everyone should apparently have a 'comprehensive, holistic, shard treatment plan' that addresses our needs. As a minimum, those without medication should be offered 'a structured supportive psychological intervention focused on ADHD' - but this contradicts my NHS therapy being removed completely because I have ADHD.
Healthcare providers should also apparently ensure 'continuity of care' for people with ADHD, which conflicts with simply cutting them off from medication overnight with no explanation or alternatives offered.
Above anything else, the guidelines surrounding medication are clearly in need of review, as ADHD medication is out of stock until apparently next April, and a National Patient Safety Alert has been issued.
As these guidelines are so important, the Government should be holding NICE to account to ensure they are actually implemented and updated - especially as this hasn't happened since 2018.
"Assessments, diagnosis and the provision of support for people with ADHD are carried out in various care settings. Data on the number of people waiting for an ADHD diagnosis and how long they have been waiting is not collected nationally but may be held locally by NHS Trusts or ICBs. We are exploring options for improving data collection and reporting on ADHD assessment waiting times. In line with this, the National Institute for Health and Care Research (NIHR) has recently commissioned a research project to provide initial insights into local ADHD diagnosis waiting times data collection. Improving data on ADHD will be an important first step in determining where further action may need to be taken to support people."
In February of this year, the Government agreed to 'look at a data dashboard so that for ADHD, we can start to piece together who is waiting, where and for what.'
If Covid-19 has taught us anything, it's that what isn't collected can't be measured, which means it's impossible to hold to account. The Government is aware of this, and despite publicly committing to address data collection at a national level in Parliament, nothing has happened since.
"We also recognise the importance of early identification of neurodiverse conditions, such as ADHD, so that an individual’s needs can be identified sooner, and support put in place earlier in life. This includes the support that children with ADHD should receive. On 2 March 2023, the Department for Education published the Special Educational Needs and Disability (SEND) and Alternative Provision Improvement Plan. This set out the government’s vision to improve mainstream education through setting standards for early and accurate identification of need, and timely access to support to meet those needs. In addition, the SEND Code of Practice is clear that schools and colleges should put in place support for children and young people where they have identified a need. There is no need to wait for a formal diagnosis of a condition such as ADHD."
The good thing about this, is the clarification that formal diagnosis is not required for children to access support for ADHD in education. Children face 16 month waiting lists for assessments under CAMHS, until they turn 18 and have to start all over again as an adult.
It's great that the Government have published a SEND plan, but also, I was involved in the Mental Health Act Review plans which they worked on for 6 years, getting to a Parliamentary stage, before deciding to scrap it all for no clear reason whatsoever this year.
£60 million was wasted by councils in SEND tribunals on unsuccessful disputes in 2021-22. Councils lost 96% of cases that went to a hearing, which related to decisions around education, health, and care plans.
Although the law is there, it means nothing if it isn't followed or implemented.
"We are committed to reducing the number of lives lost to suicide. The Department published a new national five-year suicide prevention strategy for England this year, which sets out the Government’s ambition for suicide prevention, together with over 100 actions that we think will deliver this. We have set an ambition to reduce suicides within 5 years, with initial reductions observed within 2.5 years. The strategy is supported by a wide range of activities the government is funding and that will support people’s mental health. This includes at least an additional £2.3 billion a year into mental health services by March 2024 compared to 2018/19."
For me, this is maybe the worst part of the response. Adult ADHD is not mentioned at all within the Government's Suicide Prevention strategies, but there's a 5x higher risk of suicide for those of us with this neurodevelopmental condition. 1 in 4 women with ADHD have attempted suicide.
The Government should (and I'm sure, does) recognise that everything is connected. Decades long waiting lists, people being stranded without support, national media outlets stigmatising them for daring to seek help in any way that they can, and a Department for Health and Social Care that does not care.
Instead of shifting blame, they have an opportunity to collate all of this together and to take action.
It can feel deflating to receive responses such as this, but the previous petition that led to a Parliamentary debate didn't even reach 10k signatures. The Petitions Committee will investigate this response, and have the power to press it further.
By making people feel as though it's pointless trying, this is how broken systems continue. Having ADHD makes us pretty resilient - so we'll keep going until action is taken. What other choice do we have?
Actions to take
Please write to the Petitions Committee here - they can ask the Government to revise their response, and can still ensure this is heard in Parliament.
Please write to your MP here - it will take under 5 minutes, and you are asking them to raise this issue within the Government.
Please write to the Secretary of State for Health and Social Care, Victoria Atkins MP, here. You can simply copy and paste the letter, which asks her to reconsider this decision.
You can also work with us and find more resources, including ADHD coaching & training, at www.adhdworks.info.