University Hospitals Plymouth NHS Trust

3. Mrs Z complains about the care she was provided by University Hospitals Plymouth NHS Trust (Trust A) for her sarcoidosis. She says Trust A,

• failed to diagnose Mrs Z with sarcoidosis after her 2018 CT scan showed Bilateral Hilar Adenopathy • failed to identify the symptoms Mrs Z experienced were systemic sarcoidosis symptoms between June 2020 and June 2021 • failed to arrange for Mrs Z to see a respiratory consultant between November 2020 and June 2021

4. Mrs Z told us because she did not have the correct diagnosis, it delayed her getting the treatment she desperately needed. Mrs Z told us her symptoms were severe; she lost cognitive ability and had no quality of life. Mrs Z suffered with confusion. She could not read or even write her own name when her symptoms were at their peak. Mrs Z had severe chest pain, swallowing difficulties and often choked.

5. Mrs Z told us she is looking for an acknowledgement from Trust A it failed in her care. Mrs Z is also looking for £10,000.

6. Mrs Z told us she has been suffering with what she believes are symptoms of sarcoidosis since 2009. Mrs Z was diagnosed with sarcoidosis at Trust A on 22 July 2020.

7. Sarcoidosis is the growth of small abnormal cells in the lungs and lymph nodes. It is thought to be an immune system overreaction to a person’s environment.

8. Mrs Z went to a hospital in London (Trust B) to see a sarcoidosis specialist on 29 June 2021. Trust B diagnosed Mrs Z’s other symptoms as a product of her sarcoidosis. Mrs Z began treatment with Trust B for these symptoms on 30 June 2021.

9. Mrs Z first contacted us on 23 December 2023. Mrs Z was told she needed complain to Trust A first. Mrs Z did this and made her complaint to us in full on 16 December 2024.

13. 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 the complainants delay in coming to us was reasonable.

14. In line with the Law, we have considered when Mrs Z knew she had a reason to complain about each complaint part. We have also considered how long the complaint process with Trust A took. We have discussed with Mrs Z any reasons for time delays in bringing the complaint to us.

Issue one: Trust A failed to diagnose Mrs Z with sarcoidosis after her 2018 CT scan showed Bilateral Hilar Adenopathy

15. Bilateral Hilar Adenopathy is when the lymph nodes in the lungs get larger. A common cause of this is sarcoidosis. Mrs Z told us she had a lung scan in 2018 which identified Bilateral Hilar Adenopathy, which should have indicated she had sarcoidosis. Mrs Z was diagnosed with sarcoidosis on 22 July 2020.

16. We considered when Mrs Z found out about the 2018 scan. On 14 July 2020 Mrs Z attended an appointment with Trust B and was told there was evidence of sarcoidosis in her 2018 scan. Mrs Z became concerned and brought it up to another medical professional at an appointment on 22 July 2020. This professional said Mrs Z had been misinformed, and there was no evidence of sarcoidosis on the 2018 scan.

17. Mrs Z told us she trusted the medical professionals so decided not to complain at this time. Mrs Z mentioned it to another medical professional at Trust A during an appointment on 25 September 2020. They again said there was no evidence of sarcoidosis in the 2018 scan.

18. Mrs Z accessed her medical records at some stage in 2021. Mrs Z said she saw a letter in her records from Trust A to her GP from 7 April 2021. This letter said there was evidence of sarcoidosis in her 2018 scan. Mrs Z said this is when she knew she could complain about her sarcoidosis not being diagnosed in 2018. Mrs Z told us she was not sent this letter at the time. We can see the letter is addressed to Mrs Z’s GP and there is no evidence she was copied into this letter.

19. We can see Mrs Z was given different information by medical professionals. After a doctor told Mrs Z on 22 July 2020 there was nothing on the scan, it still played on Mrs Z’s mind, so much so, she asked about it again on 25 September 2020. It is clear she doubted the information the medical professionals told her, and this was likely because she knew she had had symptoms in 2018. We consider after the first appointment, on 14 July 2020 when the 2018 scan was discussed, she could have complained.

20. To be within our time limit, Mrs Z needed to complain to us by 14 July 2021. Mrs Z made her complaint to us in full on 16 December 2024. This puts Mrs Z’s complaint three years and five months outside our time limit. Even if we considered when Mrs Z accessed her records in 2021 was the latest date she knew she had reason to complain, her complaint would still be out of time by over two years.

Issue two: The Trust failed to identify the symptoms Mrs Z experienced were systemic sarcoidosis symptoms between June 2020 and June 2021.

21. On 11 November 2020, Mrs Z’s sister called Trust A’s complaint team. She told the complaints team Mrs Z had a condition causing her lots of pain and she was unable to function. Mrs Z felt she was not getting the tests she needed to diagnose her symptoms.

22. We can see on 11 November 2020 Mrs Z was unhappy her symptoms were not being properly investigated. Mrs Z could have complained at this stage.

23. Mrs Z had an appointment at Trust B on 29 June 2021. Trust B gave Mrs Z a PET scan which showed mediastinal and perihepatic lymphadenopathy. Mediastinal and perihepatic lymphadenopathy is when then lymph nodes get larger in the chest because of underlying infection such as sarcoidosis. Trust B recorded Mrs Z had a history of headaches, ear problems, numbness and swollen lymph nodes. This could be explained by her sarcoidosis causing systemic symptoms all over the body.

24. On 29 June 2021, Mrs Z had confirmation Trust A had failed to correctly investigate her symptoms and identify the cause. Even though Mrs Z had concerns before this date, we can say the latest date she could have complained was 29 June 2021.

25. To be within our time limit, Mrs Z needed to complain to us by 29 June 2022. Mrs Z brought her complaint to us in full on 16 December 2024. This puts Mrs Z’s complaint two years and six months outside our time limit.

Issue three: The Trust failed to arrange for Mrs Z to see a respiratory consultant between November 2020 to June 2021

26. We considered when Mrs Z had reason to complain about this. Mrs Z could not give us a date in this range when she was first unhappy. Mrs Z told us when she was seen by the specialist at Trust B and diagnosed correctly, she began to process how poor her treatment had been from Trust A.

27. Mrs Z had her appointment at Trust B in July 2021. We consider this to be the latest date she had reason to complain.

28. To be within our time limit, Mrs Z needed to complain to us by July 2022. Mrs Z made her complaint to us in full on 16 December 2024. This puts Mrs Z’s complaint two years and five months outside our time limit.

Reasons for delays in 2020

29. Mrs Z knew about issue one on 14 July 2020. We explored Mrs Z’s circumstances in 2020 to understand why she did not complain.

30. Mrs Z told us during 2020 she was in extreme pain and struggled to put a sentence together. Mrs Z told us she had no quality of life and by November 2020 she could not walk, talk, read or write her own name. Mrs Z did not work during this period and stayed at home. Mrs Z said she struggled to understand and comprehend things, and she wanted to end her life. Mrs Z told us she could not be left alone. Mrs Z told us she was too ill to pursue the complaint at this stage.

31. This experience must have been extremely distressing for Mrs Z and for her family to witness. We appreciate it was difficult for Mrs Z to recount this time to us, and we were sorry to hear of her experiences.

32. We have looked at the medical records Mrs Z has provided us. We can see a clinic letter from Trust A to Mrs Z’s GP on 13 November 2020. This letter stated Mrs Z had pain all over her body, joint pain and shooting pains down her legs and arms. Mrs Z was struggling at home.

33. On 19 November 2020 we can see a note from Mrs Z’s GP. The letter stated Mrs Z had a coarse tremor, muscle twitching, visual disturbances, and rushes of adrenaline that she described as seizures. The GP recorded this was having a significant impact on Mrs Z’s quality of life.

34. Ww can see Mrs Z’s poor health is reflected in her medical records.

Reasons for delays in 2021

35. Mrs Z told us her condition continued to deteriorate in 2021. Mrs Z said she was still struggling with her cognition and to understand things. Mrs Z said her speech was affected and she began hallucinating.

36. We looked at the medical records provided to us by Mrs Z. On 7 April 2021, Trust A noted Mrs Z was unwell, had headaches all the time and everything hurt. On 22 July 2021, Mrs Z had a phone call with Trust A. Mrs Z told them she had recurring bouts of pain and could not leave her house because she could not walk or drive. Mrs Z had seizures of pain and was often screaming in agony during the night.

37. On 12 November 2021 Mrs Z had another telephone consultation with Trust A. Mrs Z told the Trust she felt she was deteriorating. Mrs Z struggled to walk, had severe pain seizures, heart palpitations and struggled to breathe.

38. We can see Mrs Z continued to struggle with her health from 2020 to 2021. We looked to see if Mrs Z’s health remained a barrier to her complaining. We can see Mrs Z contacted Trust A’s complaint department (PALS) independently at three points in 2021. Mrs Z called PALS on 22 January 2021 to say she was upset about her eye appointment the day before. Mrs Z complained she had to wait an hour, was told to move around when she struggled with light changes and was asked to remove her gloves in a public place which caused her embarrassment.

39. Mrs Z called PALS on 9 March 2021. Mrs Z complained she had not had her results from her lumbar puncture procedure conducted on 18 February 2021.

40. Mrs Z contacted PALS a final time on 23 March 2021 because she wanted to tell the teams involved in her care about developments in her condition. Mrs Z said she had experienced seizures and was struggling to breathe. She also reported a numb and swollen back. Mrs Z complained about delays in getting the appropriate tests.

41. Mrs Z also told us her son left college in May 2021 and did not look for a job so he could stay home and support her. We asked Mrs Z why her son or family members did not put a complaint in on her behalf. Mrs Z told us this was because their priority was looking after her and her health. Mrs Z told us she was the person at the centre of this complaint, and she was the one responsible for it.

42. Mrs Z’s sister complained on her behalf in November 2020. Mrs Z also told us her sister obtained Mrs Z’s medical records in 2021 and went to a solicitor about her delayed diagnosis from 2018. The solicitor asked for medical advice and determined there was no case to answer for. Mrs Z said her relationship with her sister broke down at times which stopped her from advocating for Mrs Z.

43. While we appreciate Mrs Z’s family went through a difficult time, we can see they were there to advocate for, and support Mrs Z. We consider Mrs Z had support available from family members to make her complaint in 2021.

44. We can see Mrs Z’s health conditions remained poor from 2020. As these health conditions were not a barrier to her complaining about other issues, we consider she could have complained about the issues raised to us. Mrs could have complained from July 2021 at the latest when she knew about all three issues. We have not seen sufficient reason to put this time aside.

Reasons for delays 2022-2023

45. We have no evidence from Mrs Z’s medical records after November 2021 to say Mrs Z was still suffering with severe symptoms. We know Mrs Z began treatment in July 2021. Mrs Z told us the treatment was not a quick fix, and it took time for her to adjust. We have taken this into account.

46. We asked Mrs Z when things changed and she realised she wanted to complain. Mrs Z said her understanding of her experience developed over time as she reflected on her care. Mrs Z said she started to feel better towards the end of 2022. By the beginning of 2023, Mrs Z started to gain some independence back and began cooking and speaking. Mrs Z said she still struggled to follow instruction and to organise numbers and dates.

47. Mrs Z told us her medical records were essential in helping her understand what she had been through. Trust A told us Mrs Z requested her medical records in 2021. Trust A could not provide an exact date because it only keeps record requests as far back as 2022. Mrs Z said it took her about six months to go through these records, and it took her a long time to put together a letter. Mrs Z was unable to tell us exactly when she started doing this.

48. We asked Mrs Z why she felt she needed to look through her medical records before making a complaint. Mrs Z said it was because she wanted to see if there was evidence of her sarcoidosis in her 2018 scan, as this was the issue that prompted her complaint. As Mrs Z had sarcoidosis symptoms from 2018, she could have known through her own experience she had cause to complain about her delayed diagnosis. Mrs Z did not need to go through her records to come to this realisation.

49. We looked to see if Mrs Z made any other complaints in this time. We can see Mrs Z contacted Trust A’s PALS department in December 2021 with a three-page letter detailing the history of her symptoms. In this letter Mrs Z brought up her 2018 scan that showed sarcoidosis. Mrs Z complained she repeatedly told consultants she had neurosarcoidosis, but no one listened to her. Neurosarcoidosis is where sarcoidosis symptoms spread to the brain, spinal cord and nerves. Mrs Z complained she would be much worse if Trust B had not diagnosed her systemic sarcoidosis symptoms and began treating her.

50. PALS asked Mrs Z if she wanted this escalated to a formal complaint. Mrs Z declined. Trust A spoke to the relevant consultants and obtained records from Trust B to help with its investigation. Mrs Z contacted Trust A for an update on her complaint in March 2022. Trust A sent its response to Mrs Z on 19 April 2022. The response stated if Mrs Z had any further concerns she could contact PALS.

51. Mrs Z’s complaint to Trust A at the end of December 2021 was about the same issues she brought to us 6 December 2024. We can see Mrs Z knew about the issues at the end of 2021 without having to go through her medical records the following two years. We therefore have not seen sufficient reason to put this time aside.

Complaint to the Parliamentary and Health Services Ombudsman

52. Mrs Z first contacted us in December 2023. We asked Mrs Z what changed and meant she could complain. Mrs Z said she was informed of the Ombudsman by Trust A. Mrs Z told us she was angry Trust A had not informed her of our service earlier, and if she knew about us, she would have come to us sooner. Mrs Z had had no contact with the Trusts complaint department since March 2021.

53. We questioned Mrs Z on this, and she corrected herself and confirmed she was able to find us independently. We asked Mrs Z why she could not find us earlier if she had been able to do this independently. She said this was because her understanding of the complaints process was limited.

Complaint to Trust A

54. Mrs Z contacted us in December 2023, but we could not consider her complaint at that time because she had not formally complained to the Trust. Mrs Z complained to Trust A on 18 January 2024. We can see Mrs Z acted promptly following our direction.

55. Mrs Z received her first complaint response on 24 June 2024. Mrs Z went back to Trust A with outstanding concerns on 11 August 2024. We asked Mrs Z why she went back to the Trust after this first response. Mrs Z said this was because we told her she had to make sure the Trust addressed all her concerns. Mrs Z received a second response on 12 November 2024 and brought her complaint to us on 16 December 2024. This is the date she made her complaint to us in full. As the time Trust A took to deal with her complaint was outside of her control, we will put this time aside.

Conclusion

56. We can see Mrs Z’s complaints fall outside of our time limit by over two years. We consider Mrs Z could have made her complaint to us before December 2024. While we do not underestimate the difficult health conditions Mrs Z had to deal with, we have not seen sufficient reason to put aside the delay in her complaining to the Trust. We cannot continue our investigation further.

57. We appreciate this will be disappointing news for Mrs Z. We are sorry to hear of the difficult experience Mrs Z has been through with her health. We are pleased to hear Mrs Z is now getting treatment to help with this condition and is regaining her quality of life.

1. We have carefully considered Mrs Z’s complaint about University Hospitals Plymouth NHS Trust.

2. We can see the events Mrs Z complains about happened between 2018 and July 2021. This falls outside of our one-year time limit. After careful consideration, we have decided we cannot see sufficient reason to set the time limit aside in this case. We recognise this decision may be disappointing for Mrs Z. We have explained the reasons for our decision below.