Gloucestershire Hospitals NHS Foundation Trust

The Trust

4. Mrs E complains about the care the Trust provided to her late daughter, Miss E, who had hypopituitarism. Hypopituitarism is a rare condition where there is a deficiency of the hormones made by your pituitary gland. Mrs E complains that:

• her daughter’s consultant endocrinologist, Dr A, did not take any action when she started to raise concerns that Miss E was having allergic reactions to her hydrocortisone (a steroid) treatment from 2019 onwards • the consultant did not attempt to find out if her daughter was absorbing her steroid medication properly and did not refer her to another endocrinologist for an opinion • Dr A only tested her daughter’s sodium levels whereas she feels she should have done a 24-hour profile or a day curve test to monitor the absorption of cortisol in her body • she raised concerns with Dr A that the injection intended for use during an adrenal crisis was not safe for Miss E as it contained 100mg of hydrocortisone. She says Dr A did not act on this concern by arranging to test the injection in a controlled environment and advised they would need to just call an ambulance • the Trust did not make her aware of her daughter’s heart condition. She says the cardiology department discharged Miss E aged nine without this diagnosis meaning it was left unmonitored.

5. Mrs E says the above issues contributed to her daughter’s death on 24 July 2022 when she went into adrenal crisis. She feels Miss E’s cortisol levels had been very low for a long time due to her medication issues. Mrs E says losing Miss E has been horrendous for her and the rest of Miss E’s family and that she still has post-traumatic stress disorder (PTSD) from the day her daughter died.

6. Mrs E would like service improvements at the Trust and compensation.

The Practice

7. Mrs E complains the Practice did not diagnose Miss E with hypopituitarism until she was 14. She says this is despite her daughter’s thyroid test flagging up as abnormal when she was four months old.

8. Mrs E says had the Practice investigated this, an endocrinologist would have seen Miss E aged four months old and would have initiated treatment. She said instead, Miss E went 14 years without a diagnosis. She says this caused her daughter and the rest of the family pain and distress. She said Miss E was very poorly every three to four weeks.

9. Mrs E would like service improvements at the Practice and compensation.

Complaint about endocrinology care at the Trust

11. 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.

12. Mrs E told us that she began to have concerns about her daughter’s medication in 2019. However, she said this escalated in March 2020 which is when she first began to become aware she had cause to complain. Mrs E did not raise a complaint to us about the issues with her daughter’s medication until March 2024. This means Mrs E’s complaint about this issue is three years outside our time limit.

13. Mrs E told us that she became aware for the issues with her daughter’s hydrocortisone injection for use in an adrenal crisis around May 2021. Again, Mrs E did not raise a complaint about this with us until March 2024 and so this complaint is one year and ten months outside our time limit.

14. We have discussed the reasons for the delay in bringing these issues to us with Mrs E to understand the reasons why she could not raise them sooner.

15. We can see there was a significant delay between Mrs E becoming aware of the issues and raising a formal complaint with the Trust on 15 November 2023. This was a three year and seven-month delay for the issues which she became aware of in March 2020 and a two year and six-month delay for the issue Mrs E became aware of in May 2021.

16. Mrs E told us the reason she did not complain about Dr A sooner is because she was waiting to see the dermatologist to see if this would help identify the problem. She said she had emailed Dr A many times who assured her this was the right course of action. She said she did not know her daughter would die.

17. Mrs E said by this time, she had experienced years of incompetence by most consultants her daughter had seen. She said that this was exhausting, and she was at breaking point. She told us if she complained about everything that happened, she would have no time to care for Miss E.

18. Mrs E said her daughter needed 24-hour care and so there was no time at all for anything else as she was just focussing on this. She said her daughter’s care needs were high which included physio, occupational therapy, oxygen therapy, education, and personal care.

19. Mrs E said following her daughter’s death it took a year to complain because she was grieving. She said she still has depression and PTSD from her daughter dying in front of her. She said each time she goes through her complaint it sets her back months. We were sorry to hear of this traumatising time for Mrs E. It is understandable her daughter’s death delayed Mrs E complaining to the Trust.

20. We have carefully considered Mrs E’s reasons for not bringing the complaint to us sooner. We are not persuaded we should set our time limit aside for the significant delay which occurred following Mrs E’s becoming aware of the issues in March 2020 and May 2021.

21. Mrs E told us that in this time that she was emailing Dr A directly with her concerns on many occasions. It is understandable Mrs E raised her concerns directly with Dr A initially. However, when this did not resolve her concerns, it would be a reasonable expectation that Mrs E should then have sought to find out how to raise this as a formal complaint. This would have been no more difficult than raising the concerns she had by email with Dr A.

22. We are sorry we are unable to take this complaint forward due to our time limit. It is important that we comply with the law when considering whether to set our time limit aside. In reaching this decision, we are in no way underestimating how difficult this period was for Mrs E.

Complaint about cardiology care at the Trust

23. Mrs E raised a complaint to us about her daughter’s cardiologist not monitoring her heart condition. She says cardiology discharged Miss E aged nine without this diagnosis. Mrs E told us she became aware of this issue when she saw the coroner’s report into her daughter’s death which is dated 14 October 2022. Miss E raised this complaint with us on 17 March 2024 meaning the complaint is approximately five months outside our time limit.

24. To date, Mrs E has not raised a complaint with the Trust about this issue. She did not raise it as a concern when she raised her complaint with the Trust about her daughter’s endocrinology care on 2 July 2023, although she was aware of it at the time.

25. We asked Mrs E if there was any reason she did not raise her concerns about Miss E’s heart condition at the same time she raised a complaint about the other issues in July 2023. Mrs E said she found reading the coroner's report very distressing and it took her some time to get through it and understand it. We were sorry to hear of how distressing Mrs E found this.

26. Mrs E said she mentioned the point about cardiology to the complaints officer at the hospital by email who told her she would have to put a complaint in separately. She told us it was hard enough to go through the first complaints process without doing it again.

27. We are not persuaded we should set our time limit aside for this reason. Raising this issue with the Trust would have been no more difficult than raising the other issues in Miss E’s care. It is reasonable to expect Mrs E could have done this by sending an email to the Trust outlining her concerns. For this reason, we do not propose we set the time limit aside for this complaint issue. We regret any upset this decision causes Mrs E.

The Practice

28. Mrs E told us her that in 1999 her daughter’s thyroid test flagged up as abnormal. She says she did not become aware of this issue until 17 or 18 years later after getting her daughter’s medical records. Based on what Mrs E has told us, we estimate this was around 2017.

29. Mrs E has never raised a complaint with the Practice about this issue. We asked Mrs E why this is. She told us the main reason for not complaining was because she did not know her daughter was going to die. She said she was relieved she had finally been diagnosed after 14 years of misdiagnosis.

30. She also said having a child with a chronic illness and disabilities is exhausting. She said there is very little time to be complaining and making life even more stressful and that she did not have it in her at the time.

31. Again, we are not persuaded we should set our time limit aside for the reasons Mrs E has provided. Mrs E became aware of the issues about the Practice around 2017 but has never raised them with the Practice. This is a significant amount of time to not pursue the complaint.

32. We also know that since then, Mrs E has raised a formal complaint with the Trust. It would be reasonable to expect Mrs E could also have raised a complaint with the Practice at this point but did not do so.

33. Again, we offer our sincere apologies to Mrs E for any upset this decision may cause. It is important we act in line with the law and our policy when considering complaints. We thank Mrs E for bringing this matter to us.

1. We were sorry to hear of the death of Mrs E’s daughter, Miss E. We recognise how distressing the events leading up to her daughter’s death have been for Mrs E. We can see they continue to have a profound impact on her and the rest of Miss E’s family.

2. We have carefully considered Mrs E’s complaint about the Trust and the Practice. We have decided the complaints fall outside of our time limit and we have decided not to put our time limit aside to consider them further.

3. We appreciate this will be a disappointing decision for Mrs E as we know how important her complaint is to her. We have explained our full reasons for this below