Someone in Wales is still waiting for an ADHD diagnosis, eight and a half years after asking for one

Martin Shipton

People in Wales are routinely waiting years for an ADHD diagnosis, with one unfortunate adult still undiagnosed after eight and a half years.

The unknown individual lives in west Wales, in an area covered by Hywel Dda University Health Board.

The length of waits has been revealed to a health campaigner, who used the Freedom of Information Act to ask health boards a series of questions.

Responses

After getting the responses, the campaigner, who wants to be identified only as Jayne for professional reasons, told Nation.Cymru: “Like many, I and members of my family have been stuck on what feel like very long waiting lists to access treatment and diagnostic services for ADHD.

“Despite having a diagnosis of autism spectrum disorder, dyslexia, and a paediatric diagnosis of ADHD, when I first asked about adult treatment options for ADHD in 2021 I was told I would need a new adult diagnosis. Getting onto the waiting list involved telephone appointments and surveys through my GP, and some chasing to find out about the referral. I received a letter confirming I was added to the waiting list in early 2023. That letter warned the waiting list was long, but I could expect regular updates.

“Unfortunately, I am still waiting for that first appointment in autumn 2025.

“I was given a positive update in January – I was told I was 19th on the list. At the end of July I was 11th on the list. Last update in mid-August, I was told I was 10th. With a good wind, I may be seen this side of Christmas. But I may not.

“Likewise, my oldest child was added to the paediatric list in March 2023 (in year 1). He is also still waiting for a first appointment (and is now in year 3). He has received a private diagnosis, following NICE guidelines from one of the same consultants who leads the NHS in Cardiff. But unlike over the border in England, shared care is not available here. We cannot access any NHS support until he is seen by the neurodevelopmental pathway team based in St David’s Hospital.

“For me, like most people, going private for regular treatment is not an option. I simply cannot afford it, and I have a full-time job.

“Talking to many excellent, but stretched, healthcare professionals it became clear that there could be a bit of a postcode lottery for services. The latest publicly available on all Wales waiting lists was out-of-date and hard to compare. This led to me making an FOI request to all healthboards to try and get a fuller picture of waiting lists, service pinch points, and health board policies around both adult and paediatric care.

“The results show quite a patchwork approach. Health boards all have substantial waiting lists. Most have people waiting upwards of two years for a first appointment – but in areas like west Wales this is even more substantial.

“Shared care, where the NHS will accept private diagnoses, is not available in almost all parts of Wales. This is in stark contrast to Right to Choose available in England.

“Some health boards have a centralised service for children and adults, some just children, some handle ADHD diagnosis and support through existing mental health care networks. Those networks are incredibly stretched, especially post-Covid. This means there are some people facing massive delays to accessing diagnostic services and support. That can seriously impact quality of life. Unsupported ADHD can lead to lower academic outcomes, mental health struggles, and difficulties with money and holding down a job. But given the right help, people with ADHD can flourish.

“I am a big believer in the value of transparency to help drive change. By looking at this data, we can see where the longest waits are, where additional budget may be useful, but also encourages sharing and best practice between health boards. I would like to see an updated All Wales neurodevelopmental strategy. Looking at centralised, specialised services for ADHD diagnosis, as well as autism and other neurodevelopmental conditions.

“There are trials ongoing in some health boards – but at the moment – having many services embedded into community mental health means people face longer waits if they live in a high demand area/ an area with little specialist support. In Cardiff, teams are not allowed to move adult patients from longer waiting list areas to ones with less demand/ higher capacity – based on need – as the approach is based on where you live and which clinic waiting list you are added to.

“The healthcare professionals I have spoken to have all been helpful, and understanding. But also frustrated at the length of waits patients are facing, just to be seen. Hopefully, by seeing the data laid out, the Welsh Government and Welsh NHS can build in existing strategies to tackle these long lists and make sure no one is left behind.”

Increased demand

A Welsh Government spokesman said: “We are working to reduce waiting times in response to increased demand for neurodivergence services and have invested significantly to improve these services alongside increasing pre-diagnostic support.

“Our additional investment of £3m this year has helped health boards across Wales to cut waiting times and eliminate waits of more than four years.

“In June, £5.6m was redirected to eliminate three-year waits for children’s assessments by March 2026.

“We are also working to address issues around the prescribing of medication, including shared care arrangements with GPs, to ensure services are consistent across Wales.”

Detailed waiting list breakdown for Wales’ health boards

All responses with one exception relate to waiting lists as at the end of July 2025.

Jayne’s six questions

1. Could you please tell me how many adults are currently awaiting an ADHD assessment in your health board?

2. Could you also tell me how many children are currently awaiting an ADHD assessment in your health board?

3. Do you operate any specialist neurodevelopmental screening service? If so, have these received Welsh Government funding? If so, please detail the amount of funding awarded per financial year since April 2022.

4. How long have the three adults waiting the longest been on the waiting list been waiting (in weeks?)

5. How long have the three children waiting the longest been on the waiting list been waiting (in weeks?)

6. Do you have a shared care policy in place for patients with a private diagnosis?

The responses

Aneurin Bevan University Health Board

1. There are 2,034 adults awaiting an initial assessment within the Health Board.

2. There are 1,192 children on the waiting list for a neurodevelopmental assessment within the Health Board. Please note that we do not currently assess children under the age of 6. The Children’s Neurodevelopmental (ND) Service accepts referrals for consideration of both Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD), these referrals are not separated by condition, as the assessment process determines the appropriate diagnostic outcome.

3. No.

4. Three adults waiting the longest have been waiting 155 weeks, 147 weeks and 139 weeks.

5. Three children waiting the longest have been waiting 42 weeks, 42 weeks and 41 weeks.

6. The ADHD adult service would not have direct shared care with private providers, this would sit with GPs. For children who have received a private diagnosis, any consideration of medication must be preceded by endorsement of the private report by an experienced clinician. If the report is deemed appropriate, medication requests are reviewed and supported by Child and Adolescent Mental Health Services (CAMHS) Core Medics. Where medication is agreed upon, a shared care arrangement is then established to ensure safe and coordinated ongoing management.

Cardiff and Vale University Health Board

1. 1592.

2. The UHB is unable to break it down by ADHD / ASD. The total number of children waiting for an ND assessment at the end of August was 4716.

3. Not for children.

4. 156, 156, 150 weeks.

5. 217, 208, 207 weeks.

6. Some GPs have agreed to participate in shared care arrangements, there is generally limited willingness among GPs across Health Boards to take on shared care responsibilities. At present, the Neurodevelopment (ND) team does not have a formal shared care policy in place for patients who receive a diagnosis via a private provider. All ongoing care, prescribing, monitoring, and follow-up responsibilities remain wholly with the diagnosing (ie private) provider. Our shared care agreement with primary care is, and has always been, between “us” the ND service /CCH/ NHS and the GPs for patients under our care. We diagnose, stabilise them on medication and then we request GPs to provide repeat prescriptions with the understanding / agreement, that we will continue to monitor them in clinic. We cannot have a shared care agreement for patients not open to us (under our care).

Cwm Taf Morgannwg University Health Board

1. As of July 31st 2025 there were 4103 adults waiting for an ADHD assessment in Cwm Taf Morgannwg University Health Board.

2. There is one routine waiting list for assessment of Autism, ADHD and co-morbid Autism/ADHD. As of 31st July 2025, there were 2867 children and young people awaiting an assessment. Of these, 1677 were for ADHD specifically.

3. There is a CTMUHB Neurodevelopmental Service. This is not a specialist screening service but is part of the core service delivery for assessing, diagnosing and treating children with neurodevelopmental difficulties. Neurodivergence Improvement Funding has been allocated to all health boards over recent years. Specifically, for the Neurodiversity Service within CTMUHB, £116k was allocated for 23-24 and £354k for 24-25 financial year, For 2023 – 2024 financial year, £116k was allocated. For 2024-2025 financial year, £354k was allocated.

4.Cwm Taf Morgannwg University Health Board does not centrally record this specific information. While we can confirm that we are currently seeing patients who were referred in December 2021, we are unable to provide more detailed data regarding the three longest-waiting individuals. The information requested would be held within individual patient health records as part of their ongoing care. Extracting this data would require a manual review of each record, which would significantly exceed the 18-hour time and £450 cost limit set out under Section 12 of the Freedom of Information Act 2000.

5. As of 31st July, the 3 longest waiters were at 103 weeks, 103 weeks and  100 weeks.

6. There is currently no shared care policy in place for adult patients who have received a private diagnosis. While individuals may submit private assessment reports to the ADHD service, these documents are subject to clinical review and do not automatically form part of the patient’s care  pathway. Any decision regarding ongoing care or treatment will be made by our clinicians in accordance with service protocols and clinical governance standards. In Paediatrics, if a child is given a private diagnosis of ADHD, then as a service we are happy to write an acknowledgement letter in support of the private diagnosis and no repeat assessment is required. If ADHD medication is indicated following a private ADHD diagnosis and the child’s GP is willing to undertake shared care with the private provider, then this can go ahead.

If ADHD medication is indicated following a private ADHD diagnosis and the child’s GP is willing to undertake shared care but the child’s family do not want to continue paying the private provider for this, then the child will need to go on the NHS waiting list for an appointment with a prescriber within the NHS ND team. An appointment would not be expedited because there was a private ADHD diagnosis in place already. The ADHD assessment will not need to be repeated but when the child reaches the top  of the waiting list and is seen, the prescriber within the NHS ND team would need to agree with the diagnosis already made to initiate or continue to prescribe ADHD medication.

Hywel Dda University Health Board

1. Hywel Dda University Health Board (UHB) confirms there are 4,698 adults awaiting an ADHD assessment, as of 31 July 2025.

2. The UHB confirms there are 1,126) children and young people (CYP) awaiting an ADHD assessment, as of 31 July 2025.

3. The UHB confirms it has a small dedicated Adult ADHD service which was established in 2019. Between 2022 and 2025, Welsh Government (WG) allocated Neuro-Divergence (ND) Improvement Programme Monies to respective Regional Partnership Boards, and following a rigorous application process the four ND services housed by the UHB were allocated a proportion of this money. However, this money is neither ring-fenced nor recurring for Adult ADHD services. The UHB confirms it does not operate a specialist CYP ADHD neurodevelopmental screening service.

4. 444 weeks; 337 weeks; 327 weeks.

5. 90 weeks; 89 weeks; 87 weeks..

6. The UHB confirms it does not have a shared care policy in place specifically for patients with a private diagnosis. However, there are shared care policies in place with some GP practices for Adult ADHD patients. All patients who receive a diagnosis with a private provider need to have their assessments ratified by the Adult ADHD service and undergo titration of medication with the service before GP’s will agree to any on-going prescribing of medication. Furthermore, the UHB confirms there is no shared care policy in place for CYP who have a private diagnosis.

Powys Teaching Health Board

1. I can confirm that there are currently 703 patients currently on the adult

Attention-Deficit/Hyperactivity Disorder (ADHD) assessment waiting list.

2. Powys Teaching Health Board (PTHB) offers a holistic neurodevelopment assessment inclusive of ADHD. There are currently 1080 children and young people waiting for a first appointment.

3. Whilst we do use screeners as part of the assessment, we do not operate any specialist neurodevelopmental screening service currently.

4. I can confirm that the longest wait on the waiting list for all three patients is 106 weeks.

5. 126 weeks; 118 weeks; 107 weeks.

6. Adult and Children’s Services – No policy at present.

Swansea Bay University Health Board

1. As of 31st July 2025, there were 911 patients waiting for an ADHD assessment, as  part of the follow up pathway.

2. As of 31st July 2025, 365 Children and Young People were currently awaiting an  ADHD assessment.

3 We have received no funding for neurodevelopmental services. There is currently no dedicated Neurodevelopmental Screening Service, however, within Adult Mental Health Services, there is the West Glamorgan Integrated Autism Service (IAS). The IAS is a self—referral service which assesses patient for Autism Spectrum Disorder, however due to the demand on this service, waiting times for assessment are extensive.

Funding for IAS: (funding is non-recurring)

2022: £100,648

2023: £66,185

2024: £66,185

2025: £0 – funding redirected by Welsh Government.

There is no dedicated ADHD Service within Adult Mental Health. ADHD assessments are managed within the Community Mental Health Teams under Outpatient Appointments.

Funding for ADHD: (funding is non-recurring)

2022: £0

2023: £107k

2024: £63k

2025: £0

4. From 2022, adult patients referred for ADHD are managed within the Community Mental Health Team, alongside other psychiatric symptoms in general Psychiatry. There is no dedicated pathway in place currently for ADHD. The first appointment is recorded on our patient information system as a new patient appointment under mental health and there is a target to deliver this within 10 weeks. Once the consultant suspects ADHD, the patient is added to the ADHD waiting list, which is part of the follow up pathway. Our new outpatient waiting lists do not identify if the patient is waiting for ADHD. To obtain this information would involve a manual trawl and search of records which we have estimated would significantly exceed the 18 hours limit set down by the FOI Act as the reasonable limit. Section 12 of the FOI Act and The Freedom of Information and Data Protection (Appropriate Limit and Fees) Regulation 2004 provides that we are not obliged to spend in excess of 18 hours in any 60 day period locating, retrieving and identifying information in order to deal with a request for information and therefore we are withholding this information at this time.

5. I can confirm that we cannot provided individual longest wait times per month as there is a potential risk of identifying the individual if this was disclosed. Therefore, the data is classed as personal data as defined under the General Data Protection Regulation (GDPR) and Data Protection Act 2018 and its disclosure would be contrary to the data protection principles and constitute as unfair and unlawful processing in regard to Articles 5, 6, and 9 of GDPR. We are therefore withholding this detail under Section 40(2) of the Freedom of Information Act 2000. This exemption is absolute and therefore there is no requirement to apply the public interest test.

6. There is currently no shared care protocol in place to support patients who are diagnosed privately. However, there is a newly devised ADHD Operational Group which will review shared care protocols to support improving service delivery.