Delay with autism assessment
18. 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 seen any indications the Trust did anything wrong.
19. Ms L is concerned that despite being referred to the Trust and placed on the waiting list for an autism assessment more than five years ago, she has still not received an assessment.
20. We understand how frustrating and upsetting it must be for Ms L to be on a waiting list for so long and to still not have an assessment. We also understand the impact to Ms L in not knowing whether she has autism or not.
21. In its complaint response the Trust acknowledged Ms L’s wait has been long and the impact this has on her. The Trust said, ‘Unfortunately, the unprecedented need for these services is far exceeding current capacity. As a result, the majority of people are waiting for an exceptionally long period of time.’ It also said that because it is prioritising people who are in the greatest need, sometimes the wait for people whose need is not as severe is even longer.
22. The NHS Constitution sets out the principles and objectives of the NHS, and the rights and responsibilities of the various parties involved - including patients. All NHS providers are legally required to take account of the NHS Constitution in their decisions and actions.
23. The NHS Constitution states that patients have the right to access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer a range of suitable alternative providers if this is not possible.
24. The NICE guidance does not set out a recommended timeframe for carrying out an adult autism assessment. However, the Regulations set out what services the NHS must provide. It includes that 92% of patients should start treatment within 18 weeks of being referred to a consultant-led, nonemergency service. This is known as the 18-week referral to-treatment standard.
25. Whilst there is an expectation that 92% of patients should start treatment within 18 weeks, individual organisations may not be able to meet that timescale for patients when there is an unprecedented demand on a particular service. The Trust, as well as other organisations, is currently unable to meet this timescale for autism assessment services.
26. The capacity of NHS neurodevelopment services has been under pressure due to a rising demand for services and a lack of sufficient numbers of specialist clinical practitioners to deliver the service. This pressure is steadily increasing over time.
27. The NHS ICB guidance explained the situation. It said ‘Demand for autism assessments has risen rapidly over the past 20 years. Investment in autism assessment capacity has not kept pace with this growth; demand now far exceeds available capacity. Waiting lists for autism assessments across England have reached unsustainable levels.’ In July 2022, NHS Digital reported there were more than 125,000 people waiting for assessment by mental health services; an increase of 34% from October 2021.’
28. The Trust confirmed it has over 17,500 people on its waiting list. The Trust’s website also says, ‘We have seen a significant increase in the numbers of people both nationally and locally who are seeking an assessment for suspected autism and/or attention deficit hyperactivity disorder (ADHD). This has led to significant delays in assessments. Unfortunately, the unprecedented need for these services is far exceeding current capacity and we are having to prioritise those who are in the greatest need.’
29. A report by the NHS in June 2025 said 89.4% of people waiting for an autism assessment had been waiting for longer than thirteen weeks, and of those only 4.1% had been offered a first appointment.
30. In 2019, the NHS long term plan came into effect with a ten-year vision for improving the NHS. This recognised autism assessments as a priority. It said:
‘The commitments in the Long Term Plan outline a vision for changes needed in the whole NHS by 2029 to best support autistic people to lead happier, healthier, and longer lives, including:
• “Reduce waiting times for specialist services” • “Achieving timely diagnostic assessments in line with best practice guidelines”’.
31. The Trust first wrote to Ms L on 15 May 2019. It explained the wait time was ‘up to 18 months.’ The Trust wrote to Ms L again on 12 April 2022 and apologised for the wait. It did not give a timescale as to when Ms L would be seen. The Trust sent a further letter on 29 September 2023 again apologising for the delay with the assessment.
32. We have seen no indication of a failing in the time it is taking for the Trust to carry out an autism assessment for Ms L. Whilst the Trust was not able to offer Ms L an autism assessment within 18 weeks, we do not consider this is due to any failing on its part. Unfortunately, the NHS as a whole is seeing a huge demand for autism assessments and it cannot currently keep up with this.
33. That said, we did also consider what other steps the Trust had taken while its waiting times are so long.
34. When the Trust wrote to Ms L it did more than simply apologise. It also provided information to Ms L about support services, who to contact if she was in crisis, a list of phone apps to support mental health and wellbeing and a link to other resources on the Trust’s website. The Trust’s website also has a section ‘While you are waiting’ which again provides links and information on different services and resources.
35. That is in line with GMC guidance which says doctors must support patients in caring for themselves and empower them to improve and maintain their health’. It goes on to say this can be done through helping them access information and support to help manage their health.
36. In its letter to Ms L of 21 March 2024 the Trust also said it was providing specialist consultation, advice and training to other mental health professionals. It hoped this would improve their understanding of neurodiversity, enable more people to undertake neurodiversity assessments, provide appropriate support and help the Trust see more people.
37. It has also taken steps consider the clinical needs of the people on the waiting list. The Trust has a policy to grade waiting patients as a red, amber or green (RAG rating). That means patients will not all necessarily wait for the same length of time but will be prioritised due to clinical need which may change over time. A red rating would see a patient prioritised for an autism assessment where this is critical to their care or treatment pathway, and an assessment would significantly improve their situation.
38. It appears to us that the Trust has not simply accepted the situation of high demand leading to long waits. It has taken action where it can, prioritising assessments based on clinical criteria, providing information to patients while they wait, and seeking to expand the number of other professionals able to provide support. We have decided to take no further action on Ms L’s complaint.
39. That is not to say we consider a wait of five years is an acceptable situation. The NHS itself has recognised it is not. We understand the reasons why Ms L raised these concerns with us and the impact this is having on her everyday life and mental health. We understand our decision does not help Ms L’s situation, but we hope it offers her some clarity about what is happening at the Trust and also within the NHS as a whole regarding neurodiversity assessments.
Priority request
40. Ms L also raised concerns the Trust did not treat her as a priority for an autism assessment, despite her requiring intervention from a mental health crisis team and her GP expediting her referral.
41. We are sorry to hear about Ms L’s experience and how the Trust’s decision has added to an already stressful and upsetting time.
42. The Trust said it has to prioritise people who are in the greatest need and Ms L does not fit the criteria for this.
43. On 9 November 2023 Ms L’s GP asked the Trust to expedite her assessment due to her increasing anxiety and the impact it was having on her job.
44. We explained in paragraph REF _Ref223682583 \r \h \* MERGEFORMAT 37 that, in addition to the support information given to patients while they wait, the Trust has a RAG system for considering whether it should prioritise people for assessment. The Trust’s RAG rating flowchart says a green rating is appropriate where, among other things, the patient has no previous history of complex mental health problems and there are no urgent risks.
45. On receipt of the GP’s letter the Trust did consider whether Ms L’s assessment should be prioritised. It decided not to do so. It gave Ms L a green rating as she had no previous history of complex mental health problems and had no identified urgent risks.
46. Our adviser says that based on the information Ms L’s GP gave the Trust in their letter of 9 November 2023, the Trust’s categorisation of her as green, and its decision not to prioritise her as needing an autism assessment quickly, was appropriate and in line with its flowchart. Ms L’s GP said she was suffering from further anxiety due to the prolonged wait for an assessment. Our adviser said this would not be considered a complex mental health problem. Our adviser noted that when Ms L attended the crisis centre in January 2024 there was no reference to her being suicidal or at any other risk that should have prompted a different prioritisation.
47. We have seen no indication the Trust did not appropriately consider Ms L’s request to be prioritised. It made a reasonable decision to keep Ms L as a ‘green’ under their priority RAG rating. There is therefore no indication of a failing here and we will take no further action.
48. We understand this decision is not what Ms L was hoping for. Our decision is not intended to diminish her experience. We understand how painful and distressing waiting for as assessment for five years will be. We do hope however, our decision helps to reassure Ms L the Trust is doing everything it can to progress through its waiting list and offer autism assessments as soon as it can.