An independent provider in the East Suffolk area

5. Ms I complains about aspects of the care and treatment she received from multiple organisations over a three-year period. Ms I complains: • From 1 December 2015 to October 2016, Practice One failed to: • diagnose and inform her she had a fungal skin infection • diagnose her with Lyme Disease • From November 2016 to July 2017, Practice Two failed to: • diagnose her with Lyme Disease • manage her iron levels • From July 2017 to November 2018, Practice Three failed to: • Inform her of her dairy intolerance • Investigate her skin condition • Investigate her abdominal pain and fatigue • Manage her iron levels which caused her fatigue • In 2017, ECCH, incorrectly diagnosed her with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).

6. Ms I says over the years she has experienced symptoms of fatigue, tiredness, headaches, rashes and upset stomach for longer because the organisations failed to diagnose her Lyme Disease. Ms I says her ability to carry out daily tasks was affected, and she had to change her job because of how her symptoms affected her.

7. By bringing this complaint to us, Ms I would like service improvements and a financial remedy.

8. This background is intended to place the key events related to the complaint in context, not to provide a detailed chronological account of everything that happened.

9. Between December 2015 and November 2018, Ms I experienced headaches, rashes, fatigue and abdominal pain. She attended all three Practices complaining of some, or all, of the above symptoms. She underwent investigations and tests into her symptoms.

10. In December 2017, Practice Three referred Ms I to ECCH to understand the cause of her headaches, tiredness and painful muscles. ECCH diagnosed ME/CFS. ME/CFS is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. There is no cure for ME/CFS.

11. Ms I said when she joined a new Practice in Dunblane, it did not have access to her GP records. It explained to Ms I that in order for her to have her ME/CFS diagnosis put back on to her records, she would need to be referred to be re-diagnosed.

12. However, Ms I says the Practice in Dunblane felt her symptoms could be explained by other factors and it did not believe she had ME/CFS.

13. Ms I has not complained to us about the care and treatment provided by the Practice in Dunblane. We have included this information to here to provide context to Ms I’s complaint.

Ms I’s complaint about the three Practices

16. The Health Service Commissioner’s Act (the law) says a person needs to make their complaint to us within a year of becoming aware of the problem. We cannot investigate complaints brought to us after one year, unless we consider there is a good reason to do so.

17. The NHS complaint procedure also sets out that a patient must bring their complaint to the NHS within twelve months from the date they knew a reason to complain. The NHS does not guarantee complaints raised beyond twelve months can be looked at but can give consideration to these on an individual basis when considering what caused delays in making the complaint.

18. We have discussed this with Ms I to understand the reasons why she did not complain to us sooner. We have also considered the time the organisations have taken to respond to her.

19. We consider Ms I would have been aware of the issues relating to her care and treatment at the time they took place (2015 to 2018). This is because she told us she repeatedly raised her concerns with the Practices throughout this period of time.

20. Ms I also told us that, in December 2022, she discovered a note in her medical records from 2012 documenting her allergy intolerance.

21. For this reason, we consider Ms I’s latest date of knowledge is December 2022. We understand she was aware of all the issues she raises about the Practices by this time.

22. This means Ms I would have needed to bring her complaint to us by December 2023, for the complaint to be in time.

23. Ms I made a joint complaint to all the organisations in April 2024. This is, at minimum, 16 months after Ms I became aware she had reason to complain. The NHS Complaints process gives people a year to raise their concerns.

24. Ms I received responses from the three Practices in April, July and December 2024.

25. Ms I complained to us on 23 December 2024. In total, this amounts to Ms I’s complaint being received by us, at minimum, 12 months out of time, with some matters being seven years out of time.

Reasons for delay

26. Ms I said she did not raise her concerns with the organisations sooner because she believed the threshold of evidence for misdiagnosis had not been met.

27. She said some of her symptoms remained unexplained, her medical records were incomplete or missing and, she thought her ME/CFS diagnosis might still account for her symptoms.

28. Ms I says it was not until 2023 when the Practice in Dunblane informed Ms I it did not believe she had ME/CFS that she felt she could complain.

29. Ms I also said she did not have access to her medical records until summer 2023 and there was a delay in Practice three responding to her complaint.

30. We understand the crux of Ms I’s complaint is that the organisations failed to investigate and diagnose the cause of her symptoms. Ms I says she was unaware of the actual cause of her symptoms until recently when the Practice in Dunblane said she does not have ME/CFS.

Analysis

31. We have considered how long Practice Three took to respond to Ms I’s complaint. We can see Practice three took eight months to respond to Ms I’s complaint.

32. The Regulations say organisations should respond to complaints within six months of receiving the complaint.

33. That being said, we do not consider there to be a significant delay in Ms I completing the local resolution process. The significant delay was from Ms I’s latest date of knowledge in 2022 to her bringing her complaint to the Practice in the first place.

34. Therefore, when Ms I brought her complaint to Practice three and us, the complaint was already significantly out of time.

35. We have also considered the explanation Ms I provided as to the reasons for her delay and, why she believes her date of knowledge to be later than we consider it. We understand she felt she had cause to complain only after she had answers to all her symptoms in 2024.

36. We think Ms I would have known she was unhappy with the way her symptoms were being managed, investigated and how she did not have an answer to the cause of her symptoms from 2015 until December 2017. This is because she was actively aware and raising these concerns at appointments, but not as formal complaints, during this time period.

37. Therefore, we do not consider Ms I would have needed her medical records to be aware of her concerns. As such, we think Ms I could have complained formally earlier than April 2024.

38. We also think Ms I had multiple opportunities to raise her concerns earlier. For example, Ms I received a private diagnosis of Lyme Disease in winter 2019. We consider Ms I could have raised her complaint about the organisations failure to diagnose her Lyme Disease at the point she received her diagnosis.

39. We have carefully considered the reasons Ms I has shared with us to understand why she felt she could not complain sooner. We recognise Ms I has had a difficult experience in establishing the cause of her symptoms and we are sorry this is the case.

40. Considering the above, we have not seen justification to set aside our legal time limit.

Ms I’s complaint about ECCH

41. Our Service Model Policy and Guidance outline the reasons we may decide not to investigate. They include where the investigation would not be practical and would not reach a satisfactory conclusion, so there would be no value in providing a response through an investigation.

42. Ms I complains ECCH incorrectly diagnosed her with ME/CFS in 2017. She says when she attended a Practice in Dunblane in 2021, the Practice felt Ms I did not have ME/CFS. We understand she is unhappy ECCH did not take steps to confirm the diagnosis.

43. Ms I says the Practice in Dunblane felt Ms I’s symptoms were caused by other issues and felt they could be treated through different means.

44. There is no specific test for ME/CFS, it is a diagnosis based on symptoms and ruling out other conditions that could be causing the symptoms.

45. The NHS website on ME/CFS explains that as the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own. A diagnosis of ME/CFS may be considered if a patient does not get better as quickly as expected.

46. We understand from ECCH’s complaint response that Ms I was referred by Practice three with a unique set of symptoms that it believed linked to a diagnosis of ME/CFS. ECCH felt Ms I’s clinical presentation, symptoms, history and GP referral would not have raised any concerns of a misdiagnosis.

47. As set out above, a diagnosis of ME/CFS is made by ruling out other conditions. We understand Ms I says she has since been told by the Practice in Dunblane her symptoms could be explained by other causes. This does not mean ECCH’s diagnosis of ME/CFS was incorrect or, not made in line with guidance in place at the time.

48. However, for us to look at whether Ms I was misdiagnosed, we would need to consider Ms I’s complaint about the three Practices which, as we have set out above, are out of time.

49. There are also practical difficulties in considering complaints from 10 years ago. For example, we may be unable to ask questions of, or obtain statements from, those involved in Ms I’s care. It might also be difficult for us to fairly understand what should have happened with the care, as guidance is likely to have moved on since the time.

50. For the reasons set out above, we consider it would not be practical to consider Ms I’s complaint further as a detailed investigation would not reach a satisfactory conclusion or valuable response.

51. We understand Ms I’s concerns about the events described and thank her for bringing her complaint to us. We hope the above statement demonstrates the careful consideration we have given to her concerns.

1. We have carefully considered Ms I’s complaint about the care, treatment and service she received from the three Practices and ECCH. We are very sorry to hear about the difficulties Ms I has experienced over the years with her health. We understand this has been a stressful time for Ms I.

2. We have looked carefully at the timeline of events of when Ms I complained about the care she received from the three Practices. We can see Ms I’s complaint about the three Practices falls outside of the legal time limit to bring a complaint to the Ombudsman. We have not seen strong enough reasons to put our time limit aside to consider it further.

3. With regard to Ms I’s complaint about ECCH, we have decided to not consider this complaint further as we do not think a detailed investigation would reach a satisfactory conclusion.

4. We recognise our decision will be disappointing for Ms I and hope the information in this statement clearly explains the reasons for our decision.