Hertfordshire Community NHS Trust

4. Miss A complains about the Trust following a referral to its chronic fatigue service, made in September 2023. She specifically complains:

• the Trust rejected the referral to its chronic fatigue service on 24 October 2023.

5. As a result of the above claimed failings, Miss A states:

• she has received no support or treatment for fatigue • her fatigue has got worse, and she struggles with daily tasks such as caring for her horse • she has had to call in sick for work on many occasions which has had financial implications • she has experienced worsening mental health issues. Her depression and anxiety have got worse, and she has experienced suicidal thoughts on a daily basis.

6. By bringing her complaint to PHSO, Miss A wishes for:

• confirmation regarding whether the Trust was right when it did not accept her initial referral made in October 2023 and it to re-consider its decision • explanations for the Trust’s actions and reasons as to why the decision was made to reject the referral • service improvements to prevent future patients having the same experiences.

7. Miss A has been under the care of the mental health team for a number of years but had been experiencing increased fatigue. She felt this was being caused by issues with her mental health and felt there was an overlap between her psychiatric and physical wellbeing.

8. Her GP initially referred her to Essex Partnership University Hospital (the Essex Trust) which was part of her local service in March 2023, however it refused this referral as it stated it does not take on any patients who have psychiatric illness.

9. The Essex Trust is not subject to this complaint but information from Miss A’s engagement with the Essex Trust and the referral from March 2023 was included in a further referral to the Trust made by Miss A’s GP, detailed below.

10. On 28 September 2023, Miss A’s GP referred her to the Hertfordshire Community Trust (the Trust). This is the Trust she complains about.

11. The Trust rejected Miss A’s referral on 28 October 2023. Miss A raised concerns about this rejection at the time.

12. Miss A attended a virtual meeting with the Trust on 3 November 2023 to discuss the concerns she had raised. She said the Trust had sent a letter to the GP saying there were co-existing outstanding issues that had not been investigated however said the Trust were unable to explain what they were within the meeting.

13. On 7 November 2023, Miss A raised a formal complaint with the Trust.

14. On 15 November 2023, the Trust provided Miss A with a written response to detail the outcome of its review of the referral.

15. On 22 December 2023, the Trust provided Miss A with its final complaint response letter.

16. On 1 March 2024, Miss A complained to PHSO.

21. Miss A complains about the Trust’s decision to reject a referral to its chronic fatigue service on 24 October 2023 which was made by her GP on 28 September 2023.

22. The Trust said in its initial complaint response on 15 November 2023 that it rejected the referral, because the ACTIVATE service referral criteria states, 'if an individual is diagnosed with a severe or enduring mental health condition, it is vital that this is stable and well managed' and 'all treatment and investigations must have been completed'.

23. The Trust response says it had reviewed two psychiatrist assessments from 17 July 2023 and 10 August 2023, and rejected the referral on the basis that Miss A was noted to have a poor sleep pattern that required further investigation and unstable mental health. It said it communicated its decision to Miss A’s GP on 24 October 2023 and to Miss A on 15 November 2023.

24. It is of note Miss A states the psychiatrist assessments the Essex Trust had provided contained inaccuracies. She says they were out of date and contained certain things such as that she had sleep issues which was no longer the case. We understand why this frustrated Miss A.

25. It is therefore unfortunate this is information the Trust relied on, but we can see this is what was available to it at the time.

26. It is of note that Miss A was also reviewed by a psychiatrist at the Essex Trust on 27 September 2023, so just prior to her GP referring her. This report however was not sent to the Trust’s chronic fatigue service department until 23 February 2024. We can see from the timeline this was not available for the Trust to use in its initial consideration of her GP’s referral request, which is the referral we are considering here.

27. Miss A has disputed the information on which the Trust rejected her referral.

28. We can see the Trust offers two services in relation to chronic fatigue syndrome (CFS). One is for patients seeking a diagnosis of CFS (CFS Diagnostic service). The other is for a therapy service for individuals with CFS or persistent pain (chronic fatigue service).

29. Miss A’s referral from her GP shows that she was referred to the chronic fatigue service on 28 September 2023.

30. We considered whether based on how Miss A was displaying and any relevant guidance, whether the Trust’s decision to reject the initial referral to its chronic fatigue service was justified. We asked our adviser about this.

31. The Trust response to Miss A referred to its ACTIVATE joint referral criteria. This was published in July 2022 and is the Trust’s own guidance which is used to determine whether a patient meets the criteria to be accepted by its chronic fatigue service.

32. In response to our proposal to investigate, the Trust also provided us with additional information to further explain its decision and reasoning for rejecting the referral to its chronic fatigue service.

33. Within this correspondence, the Trust explained the ACTIVATE service is specifically commissioned to see people with a diagnosis of CFS, rather than a generic chronic fatigue service. Miss A did not have a definitive CFS diagnosis at the time of her referral, which the Trust has explained is normally expected when patients are referred to its service.

34. The Trust lists criteria for the service Miss A’s GP referred her for. This lists a number of requirements and also states that CFS or chronic/persistent pain must be the primary problem for the individual. As stated above, it also goes on to say that where an individual is diagnosed with a severe or enduring health condition that it is vital this is stable and well managed and will not interfere with their ability to engage with a self-management approach.

35. In the additional response to our correspondence the Trust also explained it received a referral from Miss A’s GP dated 28 September 2023. This included a medical summary, an outline of a consultation with Miss A in March 2023, a letter from her psychiatrist dated 7 July 2023, a letter from endocrinology dated 14 June 2023, a copy of her mental health care plan dated 10 August 2023, and a copy of her original referral to her local service. This is the information it had available at the time to make its decision.

36. We understand Miss A later disputed some of the information contained within her referral and missing information from a psychiatry appointment she attended at the Essex Trust on 27 September 2023.

37. However, in line with the processes we need to follow, we can only consider the decision the Trust made, based on the information available to it at the time.

38. The Trust has explained to us that upon reviewing the information from Miss A’s GP, it was clear Miss A had a complex presentation with both physical and psychological issues. It says the medical summary highlighted abnormal gastroscopy, a history of anxiety and depression, emotionally unstable personality disorder and a history of unspecified eating disorder.

39. It highlighted the information supplied to it and said:

• the consultation summary dated 8 March 2023 highlighted irregular periods and that Miss A reported being sick most nights.

• the Psychiatry letter dated 7th July 2023 indicated that further changes to Miss A’s medication regime would be advised due to the risk of serotonin syndrome.

• the Endocrinology report dated 14th June 2023 indicated that Miss A needed to make changes to her fluid intake to manage her primary polydipsia and that she should have a referral for psychotherapy.

• the copy of Miss A’s mental health care plan made it clear that she was not sleeping well, regularly getting only 5-6 hours of interrupted sleep and as a result being chronically unrested. It was highlighted that she had been referred to an Occupational Therapist for help with her fatigue. It was also highlighted that there was significant risk of self-harm with Miss A storing large amounts of medication in her house that she was unwilling to dispose of.

40. The Trust informed us Miss A’s referral was discussed at its monthly MDT meeting which included the therapy team and specialist GPs on 19 October 2023. It stated it was agreed there were still outstanding tests and investigations that needed to be completed. It also says it was agreed Miss A’s fatigue could be attributed to a number of factors including her poor and chronic unrest, wakefulness at night due to being sick and ongoing gastric issues.

41. The Trust explained it was therefore decided a definitive diagnosis of CFS would not be possible, and as such Miss A would not be appropriate for its service.

42. We considered whether based on how Miss A was displaying and any relevant guidance, whether the Trust’s decision to reject the initial referral to its chronic fatigue service was justified. We asked our adviser about this.

43. The advice provided to us explained that Miss A’s medical records shared with the Trust at the time, do show she had a psychiatric diagnosis of mixed anxiety and depressive disorder.

44. Based on the additional information the Trust provided to us, we can see it did give considerable consideration to Miss A’s situation and whether her referral should be accepted.

45. The grounds on which the referral was rejected was that a specific diagnosis of CFS had not been made and that Miss A had a mental health disorder. We deem this to be in line with its referral criteria.

46. We have therefore found it was appropriate for the Trust to apply its exclusion criteria and reject the referral on 24 October 2023, based on the information it had available to it at the time and in line with its criteria.

47. We note that in addition to communicating its decision in writing, the Trust held a virtual consultation with Miss A on 3 November.

48. In this meeting the Trust explained its rationale around rejecting the referral. The notes document that Miss A understood this.

49. GMC’s ‘Good Medical Practice’ explains what steps clinicians should take to communicate effectively with their patients. Section 31 to 33 says clinicians must give patients the information they want or need to know in a way they can understand.

50. It is important to note the Trust was reliant on information that may have been incorrect, out of date or not shared with it at all. It appears that despite this, the Trust has gone to considerable lengths to consider Miss A’s referral and also communicate its decision to her.

51. The advice also provided to us explains it appears the Trust’s chronic fatigue service did acknowledge Miss A’s issues and offered an explanation of its consideration of her case. It also provided an alternative suggestion of a review in a different service and referred to the UCLH Insomnia and Behavioural Sleep Medicine Clinic.

52. The Trust explained it was felt that this service, which is staffed by sleep specialists and psychiatrists, would provide the necessary support and treatment to address some of Miss A’s needs and have a positive impact on her fatigue. This is in line with our Principles which say that where an organisation cannot help someone, they should refer them to other sources of help.

53. We have found that based on the evidence available to the Trust, its referral criteria and the information considered above that it was acceptable and justifiable for the Trust to reject the referral to its chronic fatigue service. We consider its explanation and additional communication of this to Miss A was in line with GMC guidance and our principles.

54. For the reasons above we see no failings in the way the Trust handled Miss A’s referral.

55. We hope our final report helps to explain how we have had to reach our decision based on the information the Trust had available at the time, the criteria it should use when assessing referrals, its communication of this, and the explanation it has provided us with.

56. Our decision to not uphold Miss A’s complaint is not made without recognition of the issues surrounding fatigue and mental health that led Miss A to complain. From our correspondence, we recognise her ongoing health issues have been extremely challenging for her, so we appreciate that being unable to access the support she hoped for, caused her much distress.

57. We do not wish to cause any further upset or frustration by sharing our decision with her and we are very sorry if that is the case. We hope we have explained our decision clearly.

58. This concludes our final report.

1. We have decided not to uphold Miss A’s complaint made against Hertfordshire Community Trust (the Trust).

2. We are very sorry to hear of the events that led to Miss A raising her concerns as a complaint and we appreciate this situation has been extremely distressing for her.

3. We must focus our investigation on the issues complained about but have done so with recognition of Miss A’s current situation. That said, we hope our explanation below goes some way to provide Miss A with some closure for her concerns.