Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

5. Mr L says that he was referred for an autism spectrum disorder (ASD) assessment by the Trust in January 2022. He complains that, due to the length of waiting lists, the Trust did not offer him an appointment for the assessment until January 2026, four years after the referral was made.

6. Mr L also complains that whilst waiting for the assessment the Trust did not respond to requests for updates and did not provide him or his mother with appropriate information about possible alternative routes to diagnosis.

7. Mr L says the wait for the assessment has delayed his social development, as his family has had to seek support independently without a diagnosis in place. He says because of this, his family paid for a private assessment for him. He tells us that his mother having to repeatedly chase services and fight for his care has had a profound effect on her mental health.

8. As an outcome to this complaint Mr L seeks financial remedy to cover the costs of the private assessment. He would also like the Trust to apologise and acknowledge the poor service he received.

9. Mr L was assessed by Children and Young Person Services (CYPS) in January 2022 and at this time he was placed on the waiting list for an autism spectrum disorder (ASD) assessment.

10. Mr L was offered an ASD assessment by the Trust in the summer of 2023 through an external provider. The provider did not indicate a diagnosis of ASD for Mr L at that time.

11. Following this assessment Mr L’s GP made a further referral to the neurodevelopmental services requesting a second opinion following concerns raised by the family. As a result, the Trust placed Mr L back on the assessment waiting list, in the position he would have been in awaiting a Trust-based assessment, had he not had the external assessment.

12. As Mr L had still not been assessed before his eighteenth birthday the Trust transitioned him to adult services in line with policy.

13. Mr L received a date for his assessment in January 2026. At this time, his mother had already paid for the assessment privately and he had been given a diagnosis of ASD.

Waiting time for ASD assessment

16. Before we decide if we should investigate a complaint in more detail, we look at a few different factors. We consider whether there are signs the organisation concerned has got something wrong. We do this by comparing what should have happened with what did happen. If what happened fell far short of what should have happened, we call this a failing. Having done this, we are satisfied in offering Mr L an assessment with an external provider, the Trust made appropriate efforts to mitigate the demands on its service and reduce Mr L’s waiting time. Given this, and that time frames for assessments were not being met nationally, we do not consider the Trust fell far short of what should have happened.

17. Mr L stated that when he was referred for an ASD assessment in January 2022, the Trust advised his mother that he would be seen within 18 months. Mr L stated that following his external ASD assessment in the summer of 2023, concerns about the outcome led him being returned on the waiting list for a further assessment, in his original position. Mr L stated he was not offered a further ASD assessment until January 2026, around four years after his original referral. Mr L says the prolonged wait led his mother to obtain an assessment and ASD diagnosis for him privately. He said that by then he had transitioned to adult services and had missed out on support that would have been available, had he received an earlier diagnosis.

18. The Trust explained Mr L was offered an assessment in 2023 through an external provider, which was commissioned to support the service as part of the waiting list mitigation. It says the provider did not determine that a diagnosis of ASD was indicated at the time. The Trust explained that as Mr L’s GP made a further referral to the neurodevelopmental service requesting a second opinion, Mr L was placed back on to the waiting list. His position on the waiting list was aligned with the date of his original referral in 2022. The Trust explained that the neurodevelopmental pathway services are under considerable pressures with numbers of referral significantly exceeding the capacity.

19. Autism spectrum disorder in under 19s: recognition, referral and diagnosis (CG128) says that the autism diagnostic assessment should start within three months of the referral to the autism team. We acknowledge the Trust did not meet this time frame in completing Mr L’s initial assessment in the summer of 2023.

20. We have, however, gone on to consider the reasons for the delays. We understand that nationally, demand for ASD assessments significantly exceeds the NHS’s capacity, extending waiting times for assessments across many NHS trusts. We do not think we can fairly hold the Trust to a standard that is not being met nationally. We, therefore, do not consider the delay, in itself, justifies significant criticism of the Trust.

21. To fully consider any failings by the Trust, we must also look at what the Trust did to address waiting times and support families awaiting assessment. The Trust told us it commissioned external providers to increase assessment capacity and help reduce waiting times.

22. We consider Mr L’s external assessment in the summer of 2023 demonstrated the Trust was taking steps to reduce his waiting time and complete the assessment within the original 18-month timeframe, it had indicated to his mother. In these circumstances, taking into account the national demand on the services, we are satisfied the Trust was taking reasonable steps to address his wait. We therefore, do not consider the Trust has fell below the service expected of it and we have decided not to progress Mr L’s case further.

23. We recognise that the wait for a diagnosis has been extremely difficult for both Mr L and his mother, and nothing in our decision is intended to diminish the impact this has had on them. We hope Mr L is reassured that the Trust was taking actions to reduce his waiting times in light of the national pressures its services were experiencing.

Communication

24. Another thing we look at before deciding whether to investigate in more detail, is whether what happened had a negative impact on the person in question. If we think it did, we will go on to consider what, if anything, the organisation has done to try to put things right. Having done this, we consider there were occasions where communication from the Trust was poor. We are satisfied that the Trust has acknowledged this, apologised, has taken steps to put things right and learn from them. We have therefore decided not to take further action.

25. Mr L explained that, following his referral for an ASD assessment, his mother regularly contacted the Trust to enquire about the status of his referral and the likely waiting times. Due to the lengthy wait, Mr L said his mother also sought advice on appropriate private providers. Mr L said the Trust failed to respond to emails and telephone calls and did not provide suitable guidance on private assessment options. Mr L says this left him and his mother feeling like they had to pursue his own care, which impacted on their mental health.

26. The Trust acknowledged that some emails received generic responses or were not responded to and apologised for this. It explained this was due to high demand on the service and said it was reviewing its processes with the duty team to improve the timeliness and quality of communication. The Trust also said it could not recommend a private provider due to a conflict of interest but advised that private assessors should be NICE compliant. It apologised if this had not been fully explained to Mr L’s mother.

27. Our NHS Complaint Standards say that providing fair and proportionate remedies is an integral part of good complaint handling. They go on to say that in many cases a prompt explanation and an apology will be a sufficient and appropriate response.

28. We acknowledge that Mr L and his mother felt let down by the communication provided by the Trust. We recognise that the lack of communication left Mr L’s mother unclear about the wait times for his assessment and how to proceed privately. We understand this then caused Mr L and his mother distress and left them feeling like they were chasing his care.

29. We must also consider what the Trust has done to listen to Mr L’s concerns and put right its mistakes. The Trust has acknowledged its communication was not always what it should be, apologised for this and is now looking at improving its service for future users. These are in line with our complaint standards and how we think the Trust should respond to Mr L’s complaint.

30. We do not think there is anything more for us to meaningfully ask the Trust to achieve in respect of this complaint. This is not to say we do not acknowledge that there were some communication issues, which did cause Mr L and his mother distress. We just consider the Trust has adequately addressed and dealt with the matter.

31. We hope the decision gives Mr L some reassurance that the Trust has listened to his concerns and acted on his complaint. We recognise it must have been a frustrating and distressing time for both Mr L and his mother whilst he waited for an assessment. We are sorry to hear the upset and difficulties they were caused during this period.

1. We have carefully considered Mr L’s complaint about Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (the Trust). Having done so, we can see no indication that the Trust got anything seriously wrong.

2. We recognise Mr L waited longer than the recommended timescales for an autism spectrum disorder assessment. We acknowledge the impact the delayed diagnosis had on both him and his mother. We consider his wait for an assessment was due to the national demands on the service rather than any failing by the Trust. In these circumstances, we do not consider we can find fault with the Trust for failing to meet a standard that is not being achieved nationally, particularly as the Trust was taking steps to reduce Mr L’s waiting time.

3. We consider the Trust has already appropriately acknowledged that there were issues with its communication and the impact this had on Mr L and his mother.

4. We have therefore decided not to consider Mr L’s complaint further. Our decision does not mean the length of time Mr L waited for a diagnosis and subsequent support was acceptable. We just consider the delays reflects a wider issue, rather than a failing by the Trust. We have explained our decision in detail below.