We did it - now here's what the NHS England ADHD Taskforce should do
Campaigning for change takes a very long time, but below explains the importance of not giving up - every single action matters.
1.5 years ago, I presented to Directors of the World Health Organisation about the urgent need to review and improve access to ADHD support globally. This was due to outdated diagnostic criteria and 'official' information, combined with an increase in ADHD awareness, resulting in people being exploited as a result. Nothing happened.
1 year ago, hundreds of people wrote to their MP to ask them to attend Parliament's debate on ADHD and Autism waiting times. The Government committed to 'looking at' a data dashboard for ADHD, and to improve support and care for people across the country. Nothing happened.
4 months ago, the petition I started calling for a Public Inquiry into pre and post diagnostic ADHD support received 11,304 signatures, amidst a national shortage of ADHD medication. The Government responded to say that essentially, it wasn't their problem.
This week, NHS England announced the creation of a new ADHD Taskforce alongside government, with a cross-sector review to learn more about the 'issues impacting those with ADHD and how service provision can be better joined up to meet people's needs today and in the future.'
This is AMAZING news - the issue has finally become a priority for those who can actually do something about it. As the NHS note, this is a hugely complex piece of work, so here's some starting points they could review:
1. NHS Information & Education
ADHD was the second most viewed health condition on the NHS website in 2023, after Covid-19, with 4.3 million page views over the course of the year. This page has very limited information on:
ADHD, noting that 'in adults, the symptoms... are more difficult to define.' It says 'some specialists have suggested the following symptoms...' - essentially, it's very vague.
what to do if an adult thinks that they have ADHD, implying assessment is the natural progression without referencing the severe challenges in accessing this. They don't mention alternatives that do not require formal diagnosis, such as the Government's Access to Work scheme, or learning more about ADHD.
what to do if a parent thinks their child has ADHD, suggesting speaking to their child's school or a GP, with little information about what should or could happen next.
the assessment and diagnosis process, mentioning the possibility of referrals without reference to years long waiting lists, shared care agreements, or the private sector, meaning people are uninformed about their options.
post-diagnosis support and treatment, talking about medication but with no reference to the national shortage of ADHD medication or what people should do during this time.
living with ADHD, with 'ways to cope for parents of children with ADHD' and 'adults with ADHD'. Advice like 'speak to your employer about your condition' doesn't mention the fact this could amount to disclosing a disability, triggering legal processes under the Equality Act.
This webpage was last reviewed in 2021, and the next review is due in December 2024. There's been a 400% increase in the number of adults seeking assessments since 2020 - this urgently needs updating to be relevant and useful.
This reflects the level of training and education for medical professionals such as GPs, who may miss symptoms and refuse referrals. This may push people to the private sector, paying thousands for an assessment, with no information about what this should involve, whether it would enable them to access medication, or how they can integrate this with the NHS.
Without adequate support and information from 'official' sources like the NHS, people are unsurprisingly exposed to potential exploitation and misinformation from less credible sources, such as companies deliberately targeting them with ads on social media.
Recommendation 1: the NHS ADHD Taskforce should collate updated information and update the NHS website regularly, alongside creating a comprehensive education and training plan for professionals across a range of sectors including healthcare, education, justice and employment on ADHD.
2. NHS Capacity & Years Long Assessment Waiting Lists
I wrote ADHD: an A to Z after learning my GP had a 7 year waiting list to access an ADHD assessment, after I paid thousands privately due to the severity of my symptoms. If I'd had to wait 7 years for an assessment, I would no longer be here.
The NHS has a myriad of different Integrated Care Boards & Trusts, which means access to an assessment is largely a postcode lottery - unless you know about the 'Right to Choose' your assessor. However, waiting lists are commonly at least months or years long, with 10 year waiting lists in some parts of the UK. In York and North Yorkshire, people are simply refused assessments unless they are in crisis, and even then, may not be seen. Some trusts do not have any provision at all, so the answer is a simple 'no'.
Children suffer the most, as they are placed on CAMHS waiting lists, which can also be years long. If they aren't seen before age 18, they will then have to start all over again on an adult waiting list.
Recommendation 2: the NHS Taskforce should collect national data on waiting times, which would allow them to understand the scale of the problem at a centralised level, and what can be done other than pushing people into crisis mode. They should use this data to create a cohesive strategy to ensure services are fit for purpose and can meet demand.
3. Variation In Access To & Quality Of Services, Diagnosis Process & NICE Guidelines
The National Institute for Health and Care Excellence (NICE) provides guidelines for NHS professionals assessing and managing ADHD. Just like ADHD diagnostic criteria, these are drastically outdated, last being reviewed in 2021.
The guidelines recommend people with ADHD have a 'comprehensive treatment plan that addresses their needs', including a 'structured discussion around how ADHD affects them as an individual'. I have never, ever heard of this happening for anyone, and definitely not myself.
The NICE guidelines reference 'continuity of care' but do not explain how the this should happen when people have paid for private assessments, often resulting in these not being recognised by the NHS. They do not reference the now 6 month national shortage of ADHD medication or how healthcare providers should provide support during this time.
The NICE guidelines were updated in 2008 to reflect that ADHD should be considered in adults as well as children, with 'symptom criteria adjusted for age-appropriate changes in behaviour'. This is why so many adults are being diagnosed now: their symptoms may not have been recognised earlier in life.
The 30% developmental delay in executive functioning skills, including emotional regulation, that accompanies ADHD is not referenced in the diagnostic criteria, meaning that many people are misdiagnosed, especially women. 1 in 4 women with ADHD have attempted to take their own life, and the suicide risk is 5 times higher for people with ADHD than those without - so this should urgently be reflected in the diagnostic criteria.
The postcode lottery and inability of the NHS to meet demand has resulted in a two-tier healthcare system, meaning those who cannot pay for a private assessment are less likely to access support. This reinforces existing systemic inequalities across our society, such as black women being less likely to be diagnosed with ADHD as explained by Abigail Agyei-Jones MBE here.
Recommendation 3: the NHS ADHD Taskforce should make recommendations for new NICE guidelines, providing updated, standardised and detailed information about what an ADHD assessment should include, and how shared care should operate in practice with the private sector.
4. Post Diagnosis Support Options & Medication Supply Issues
Contrary to popular belief, ADHD medication isn't handed out like pills. It's a highly controlled drug, requiring a monthly prescription and oversight. However, 6 months ago, a National Patient Safety Alert was issued by the NHS, due to a national shortage of ADHD medication.
This has been absolute chaos, with a lack of any notice, support from GPs, or updates. People were cut off from their prescribed 'controlled' medication overnight, facing years long waiting lists to change prescription (including myself).
This reflects the wider state of post diagnosis support - it is woefully inadequate. There is no standard NHS provision of support such as therapy, coaching, or ADHD pyscho-education. The standard medical response is to try medication, which does not work for everybody, and can be extremely dangerous without adequate oversight.
When I was put on medication privately, I had to pay £250 to talk to my psychiatrist about the life-threatening symptoms I experienced as a result, and his response was to suggest more medication.
This is the irony of waiting years for an assessment - nothing necessarily changes afterwards. Things often get worse, not better, as people are 'diagnosed and dumped', left to process this by themselves. Pills do not give skills - they can be extremely helpful (and being on the right kind for me did save my life) but people should receive holistic education and support, so they can make informed choices.
Recommendation 4: The NHS ADHD Taskforce should review the ADHD medication shortages, identifying why this happened and how it can be prevented in the future. It should make recommendations for shared care and post-diagnosis support, including non-pharmaceutical approaches such as specialised ADHD therapy, coaching and education.
5. Data Collection & Interrelated Government Policies
As referenced above, the NHS does not collect data on ADHD as at a national level. The Government recognised the improved of 'improving data on ADHD' to determine where further action may need to be taken to support people.
Data is key. Matt Hancock has expanded his Dyslexia Screening Bill to the 'Neurodivergent Conditions (Screening and Teacher Training) Bill' alongside Dan Harris FRSA (and thanks to the tireless efforts of Sarah Templeton ). This is absolutely critical to understanding ADHD at a foundational level in school.
As ADHD is not recorded as a condition in and of itself at schools, it falls into the general Special Educational Needs group, meaning there's a lack of information about how many children have ADHD.
As ADHD is not a mental illness, it's not recorded as a reason for being unable to work. Over 500,000 people are currently unable to work due to long term 'illness', which references 'mental health', but this currently can't provide any information on ADHD.
ADHD is a very strong contributing factor to mental health challenges, and can result in a lot of misdiagnosis, but data is not recorded separately to mental health, confusing the two.
This is important to be able to understand what needs to happen in an employment context to support people - such as provision of training or updated guidance on how to make reasonable adjustments, for example.
Recommendation 5: the NHS ADHD Taskforce should create a data collection plan for neurodevelopmental conditions like ADHD, incorporating this into national NHS data strategies.
This data should collectively record and centralise the number of people with ADHD and other neurodevelopmental conditions separately from mental health challenges across Governmental departments, specifically including the:
Department of Health and Social Care: recording data such as medication, assessments, diagnosis, waiting times, and relevant training / support
Department for Education: recording data such as the number of children in school who have ADHD and Education, Care and Health Plans relating to ADHD, and relevant training / support
Ministry of Justice UK: recording data such as the number of people in prison who have ADHD, assessments, and relevant training / support
Department for Work and Pensions (DWP) : recording data such as the number of people unable to work due to having ADHD, employment tribunal cases relating to ADHD, and relevant training / support.
6. Recognising & Respecting Lived Experience
It is extremely important that the NHS Taskforce approaches their work with sensitivity, recognising the significant implications of their work.
ADHD is not something that can be looked at it in isolation - the increase in education and awareness since the pandemic is rapidly affecting all parts of our society, despite a healthcare system that cannot keep up.
However, this means that there are many sensitivities at play, most importantly in relation to the individuals it affects. For example, the mere creation of this Taskforce has seen several news articles pop up suggesting it is investigating 'over-diagnosis', but this hasn't been said by the NHS itself.
Stigma and shame around ADHD has been seen in numerous media articles over the past year, which invalidates hundreds of thousands of people's experiences. Any work on this area at a national Government and NHS level must take into account the lived experiences of the people this affects: listening to a range of voices across different sectors.
They could do this by creating a committee of representatives, or holding a public consultation, for example. Many people who have experience of navigating ADHD are extremely passionate about their experiences and wanting to make change for others. Their experiences are all so valuable and should be heard, respected, and considered.
The NHS ADHD Taskforce must be very careful with their language, ensuring this work does not become politicised, with unprecedented potential implications. For example, after the inflammatory 30 minute BBC Panorama episode doubting the quality of private assessments, many people lost access to their shared care agreements and support as a result.
Recommendation 6: the NHS ADHD Taskforce should hold a public consultation and actively demonstrate their inclusion of public participation and lived experience in their work, carefully and sensitively considering any negative outcomes their work (or interpretations of their work) could have on the people who have already been diagnosed with ADHD, making appropriate provision.
This NHS ADHD Taskforce is amazing news - it means things are changing, and hopefully, support will be improved. It has the potential to join up experiences and challenges across a range of sectors, changing the way our society responds to and supports people with ADHD.
Their findings will be published later in the year, but it's important to note that media attention may increase as a result of this. As an individual, I recommend always going to the NHS webpages to understand what is actually happening, instead of news reports which may not always present an unbiased version of this.