Leeds and York Partnership NHS Foundation Trust

2. Mr L complains about waiting times for an attention deficit hyperactivity disorder (ADHD) assessment at the Trust. He complains that in 2023 the Trust only worked through the referrals it received in December 2020. He also complains the Trust did not inform him he could obtain an NHS funded assessment through an alternative provider under the right to choose pathway. In addition, he complains the Trust did not provide him with practical advice about how to cope whilst waiting for an assessment.

3. Mr L says the lack of diagnosis and advice has had a negative impact on his mental health. It has also impacted his ability to secure employment and led to a number of financial and other issues in his life. He is also worried the long waiting time could have very serious impacts on some people.

4. Mr L would like service improvements. He would like the Trust to resource the ADHD service better to reduce waiting times. He would also like the Trust to see patients soon after referral to triage the referral and offer practical advice on how to cope whilst waiting for an assessment.

5. ADHD is a condition that affects people’s behaviour in different ways. People with ADHD may be restless, have trouble concentrating, and act impulsively. ADHD can affect many areas of people’s lives including education, employment, sleep, and relationships.

6. In May 2021 Mr L’s GP referred him to the Trust’s ADHD service. In June the Trust told him it did not know how long he would have to wait for an assessment. It said prior to the COVID-19 pandemic the waiting list was around 12 months, but this had been severely impacted by staff being redeployed during the pandemic.

7. In October 2022 the Trust told Mr L the waiting list was around two years. Mr L complained to the Trust in November. The Trust told Mr L it was currently seeing patients referred in December 2020.

8. In August 2023 Mr L complained to the Trust again, as he had still not received an appointment. In January 2024 the Trust responded and said it had now started assessing people referred in January 2021.

9. Since bringing his complaint to us, Mr L has been diagnosed with ADHD following an assessment at an alternative provider.

12. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this and have not found any indications that anything has gone wrong.

Waiting times

13. The NHS constitution says people have a right to start consultant led treatment within 18 weeks of referral.

14. Across the country there are long waiting times for NHS ADHD assessments. This has been reported widely in the media and was debated in Parliament in February 2023. In October 2023 an ADHD UK report highlighted huge national variations, ranging from 12 weeks to over 10 years.

15. The Trust told us the demand for ADHD assessment is roughly ten times the capacity, month on month, which has created very long waiting lists. The Trust receives funding from the commissioner to provide a set number of ADHD assessments each month. This puts the Trust in a difficult position where the waiting times are constantly increasing as the Trust cannot keep up with the number of referrals it receives.

16. We do not condone long waiting lists, but the situation at the Trust seems to be in line with what is happening in many other NHS organisations. There has been a huge increase in demand for ADHD assessments and the NHS does not have capacity to keep up with this.

17. Across the country commissioners are funding ADHD assessments at alternative providers outside traditional NHS services. Despite this, waiting lists are very long in many parts of the country.

18. In the context of the national picture, we cannot say the long waiting times at the Trust are an indication of any failing on the Trust’s part.

Communication about alternative providers

19. The NHS Choice Framework says patients have a legal right to choose their provider for elective (non-emergency) healthcare. It says these choices only apply at the point of referral, though people can ask to be referred to a different service if they have to wait more than 18 weeks before starting treatment.

20. When Mr L was first referred for an ADHD assessment, the onus was on the referrer to discuss referral options with him. The Trust was under no obligation at that stage to explain his right to patient choice.

21. Once Mr L had waited over 18 weeks, he had a legal right to ask to be referred to a different service. Mr L asked the Trust about this in November 2022. The Trust told Mr L if he wished to be referred elsewhere, he would need to speak to his GP about a right to choose referral. This was the correct information. The Trust did not have responsibility to refer him elsewhere, but appropriately signposted him to his GP to discuss his options.

22. Although we can see no indications the Trust did anything wrong, it is reassuring to see the Trust has acted in line with our NHS complaint standards by introducing service improvements following Mr L’s complaint.

23. The Trust sent us a copy of the letter it now sends to all people added to the ADHD referral waiting list. This letter clearly states patients have a legal right to choose an alternative provider. The letter signposts patients to the ADHD UK website for more information about alternative providers.

24. The letter provides useful information to help people make an informed decision, including that whilst an alternative provider may be able to provide more timely assessment and treatment, the treatment may be limited to medication with some providers. The letter also includes a link to the Trust’s minimum standards so people can check alternative providers are providing an adequate assessment.

Lack of advice whilst on the waiting list 25. NICE ADHD guidance sets out how organisations should support and provide personalised advice and information to people who have been diagnosed with ADHD, or who have fallen short of the diagnostic criteria at assessment.

26. NICE ADHD guidance recommends offering group-based ADHD-focused support for some children and young people who are awaiting an assessment for ADHD. The guidance makes no recommendation for supporting adults who are awaiting an assessment for ADHD.

27. We understand it was a very difficult time for Mr L when he was trying to manage his symptoms with no support and no confirmed diagnosis. As the guidance does not recommend any support be offered to adults awaiting an ADHD assessment, we cannot criticise the Trust for not offering this.

28. Although the Trust has not done anything wrong, we can see it has acted in line with our NHS complaint standards by introducing service improvements following Mr L’s complaint. The Trust’s revised letter to people on the waiting list provides information about how they can access urgent mental health support through the Trust, the Samaritans, a local 24 hour helpline, and the emergency services.

29. The letter also includes a link to the web page for the Trust’s ADHD service. This web page includes links to an online ADHD support group. It also provides links to further information about ADHD from the Royal College of Psychiatrists, the ADHD Foundation charity, and the NHS website. These websites all contain information that can help people while they are waiting for an assessment.

30. Regrettably the NHS is in a difficult situation where it cannot keep up with the high numbers of referrals for ADHD assessment. We understand it is having a significant impact on people like Mr L who are waiting years without a diagnosis or support.

31. In the context of the national situation, we cannot see any indications the Trust has done anything wrong. The Trust does not receive the funding to allow it to keep up with the number of referrals it receives.

32. Though the Trust has not done anything wrong, we are reassured it has taken action to provide better information to people on the waiting list. This will help patients access their right to choose and potentially be assessed sooner. It will also help patients access information and support while they are awaiting assessment.

33. We hope Mr L is reassured his complaint has made a difference.

1. We understand why Mr L is so worried about the long waiting times for ADHD assessments. We recognise the situation at the Trust is far from ideal and people are waiting a very long time. Sadly, this appears to be in line with a bigger national picture of demand for ADHD assessment far exceeding the NHS capacity available. We consider the Trust has acted in line with relevant standards and we can see no evidence it did anything wrong.