16. 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 something has gone wrong.
The complaint about the Trust
17. Miss A says the Trust failed to take into account the severity of her son’s learning disabilities and lack of daily living skills, says P does not have a significant learning disability and discharged P from its services in December 2022. She says the Trust said P can access mainstream health services with reasonable adjustments, but the mainstream services have said they cannot provide a service to meet P’s needs.
18. The service complained about is the Trust’s adult learning disabilities specialist health services team. This provides specialist health services for adults with a learning disability in the area, including mental health services. In order to access the service, patients must have a diagnosis of a learning disability or be referred for a learning disability assessment, and must have complex health needs due to their learning disability which cannot be met by mainstream primary or secondary health care services, even with reasonable adjustments made.
19. P first accessed the service in November 2019, and an assessment was started by the psychology service to identify if P met the criteria for a formal diagnosis of a learning disability. In February 2020, the Trust informed P he had a learning disability. In April 2020, the psychology learning disability assessment report was shared with P and his GP. In June 2020, P was discharged from the service as he did not want to attend for support at the time.
20. In April 2022, P was referred back to the learning disability health service due to anxiety. He was assessed by a psychiatrist and a learning disability nurse. P did not want to take medication, but attended support sessions with a nurse to address his anxiety.
21. In November 2022, P told the nurse he did not want to continue the anxiety sessions. The nurse offered P a reassessment of his learning disability to ensure he was offered the appropriate services for his needs, but P declined. A decision was made to discharge P from the learning disability health service as he was no longer accessing any support from them.
22. On 13 December 2022, a multi-disciplinary team (including clinical staff from psychiatry, psychology, and nursing) discussed P’s case and agreed to discharge him from the service. The learning disability nurse wrote to P to explain the team’s decision. They said the team felt P functioned at a much higher level than his initial assessment for learning disability suggested, and that P’s needs could be met by mainstream services with reasonable adjustments around P’s anxiety. They said if P wished to access the learning disability health service again in future, P would need a reassessment, which had previously been offered and declined.
23. P was assessed by a number of different mental health professionals within the learning disability health service. From what we have seen, the assessments done were in line with GMC’s ‘Good Medical Practice’ which includes adequately assessing the patient’s condition, taking account of their history including symptoms, psychological and social factors and the patient’s views, and then providing or arranging advice, investigations or treatment where necessary.
24. P was offered a number of interventions including medications, psychotherapy (talking therapy) and occupational therapy from a range of professionals. Our LD adviser says these interventions are well evidenced to help patients with learning disability, autism spectrum disorder and anxiety disorders, which P was diagnosed with. The records show various times when P did not engage with the professionals.
25. It seems P did not feel these interventions were right for him and felt distressed at having to continue the sessions. P was discharged from the service after not engaging with the therapeutical interventions arranged for him. This is standard practice, as long as the patient has capacity to make the decision not to engage with services. The discharge letter from the Trust makes it clear the service would be prepared to see P again but they would need to reassess him, which is standard practice.
26. Our LD adviser says finding a patient functions at a higher level than seen during their initial assessment for a learning disability is common. This could be due to a range of factors, including the patient’s mental health not being optimal at the time of the initial assessment, unfamiliarity with the assessing clinician and the clinical setting (environment), and patient exhaustion with the length of time it takes to carry out the initial assessments.
27. The various tools used to assess P, including Weschler Adult Intelligence Scale (WAIS) and Adaptive Behaviour Assessment System (ABAS), are lengthy assessments which can lead to exhaustion in patients and may not be an accurate reflection of the patient’s true abilities. It is not uncommon for initial assessments to underrepresent the patient’s abilities or for clinicians working with patients over time to note a patient can function at a higher level than initially reported. Experienced staff working with patients in settings they are comfortable with and over a period of time are able to build up a more accurate picture of the patient’s abilities.
28. When P accessed the service in 2022, he had passed his driving theory test, was preparing for a practical driving test and was seen to be functioning at a higher level than initially suggested by his assessment in 2020. In these circumstances, P’s needs were reassessed and he was felt not to require the intervention of the specialist learning disability team. Patients’ needs can changed over a period of time and it is standard practice to reassess, over time, which service best meets the patient’s needs.
29. The Trust’s response also sets out P’s diagnosis of learning disability has not been removed, but his level of functioning is seen as high enough to access mainstream services with reasonable adjustments.
30. The Trust says P could receive future input from mainstream services with reasonable adjustments. This is consistent with NDTI’s ‘Green Light Toolkit’, which is a resource aimed at mainstream mental health services to help them include patients with learning disabilities, autism spectrum disorder, or both, to access their services. Mainstream services are expected to ensure their services are accessible to patients with learning disabilities and/or autism spectrum disorder.
31. Health Education England guidance also makes the same recommendations and provides access to ‘The Oliver McGowan Mandatory Training on Learning Disability and Autism’. This provides training on learning disability and autism for mainstream healthcare professionals to help them provide services to people with learning disability and/or autism. This means that mainstream services are expected to provide training and resources to its staff to enable them to provide accessible services to people with learning disability, autism spectrum disorders, or both.
32. Miss A says P cannot access mainstream services because of his needs. We can see P was referred to mainstream mental health services in 2023 for talking therapy to help with his anxiety. It was felt talking therapy was not right for P at that time and he had previously struggled to engage with talking therapy when it was provided by the learning disability health service. P was offered instead a referral to social care for support, which he declined. We cannot see any indication P was unable to access mainstream services due to his needs, but rather, he chose not to do so.
33. We have not seen any indication of failings in the decisions made by the Trust. We acknowledge Miss A has concerns about her son’s access to services. From what we have seen, we cannot see any indication the Trust has removed P’s diagnosis of learning disability or that there was anything wrong with its decisions P could access mainstream services if reasonable adjustments were made. Further, we consider the Trust was correct to say it would need to reassess P in order for him to access its learning disability health service again.
34. As such, we have decided to take no further action. We hope Miss A understands our reasons for this decision.
The complaint about the Practice
35. Miss A says that after the Trust discharged P from its service, the Practice removed P’s diagnosis of learning disability from his records.
36. Our GP adviser explained GP practices keep a disability register, using codes for specific disabilities including learning disabilities and autism spectrum disorders. Codes are put on patient’s records, and in line with NHS England’s National Electronic Health Check template patients with qualifying codes will be offered an annual health check.
37. Autism spectrum disorder is a processing disorder which is not included under learning disability codes (as people with autism may or may not also have a learning disability). After receiving the discharge letter from the Trust, the GP stopped stating P had a learning disability when contacting other professionals (such as referrals to hospital) but continued to include that P had a diagnosis of autism.
38. The letter from the Trust did not state P no longer had a learning disability. He may still have a level of learning disability, but this may not be severe enough to meet the criteria for registration as a learning disability on P’s healthcare records.
39. Miss A also says GPs at the Practice did not allow her to speak on her son’s behalf at appointments and referred her to safeguarding, which she feels was unwarranted.
40. NHS England sets out the definition of safeguarding as protecting a citizen’s health, wellbeing and human rights and enabling them to live free from harm, abuse and neglect. Safeguarding is a collective responsibility and all NHS staff who have concerns about a patient, no matter their clinical role, have a responsibility to safeguard children and adults at risk of abuse or neglect in the NHS. Those most in need of protection include children, young people, and adults including those with disabilities, including learning disabilities.
41. We can see no indication on the healthcare records that a GP made a referral to safeguarding. We can see a physiotherapist contacted a GP at the Practice on 25 January 2024 to share safeguarding concerns. The GP advised the physiotherapist of the safeguarding process to follow if they were concerned about P. Sharing safeguarding concerns is the responsibility of any professional involved in the care or treatment of a vulnerable person or child. As the physiotherapist contacted the GP to raise concerns, it was appropriate for the GP to consider their concerns and support the physiotherapist’s referral to safeguarding.
42. We have not seen any indication from the healthcare records that GPs at the Practice did not allow Miss A to speak on her son’s behalf at appointments. We note the physiotherapist shared with the GP their concerns that Miss A was speaking for P at appointments – the physiotherapist felt P had capacity to speak for himself and be involved in decisions about his care. As noted above, the GP had a responsibility to note and discuss concerns raised with them by other professionals, but we cannot see any indication that the GPs themselves noted concerns about Miss A speaking on P’s behalf at appointments or contacted safeguarding themselves.
43. In summary, we have not seen any indication of failings in the decisions made by the Practice and will take no further action on this issue.
44. As set out, we will not be taking further action on Miss A’s complaint. We understand our decision may be disappointing for Miss A, and we recognise she and P have found what happened distressing. We thank Miss A for taking the time to bring her complaint to us, and hope she is reassured that the actions taken were in line with guidance and standards.