An independent provider in the City of Westminster area

5. Miss A complains about aspects of care and treatment she received from an independent provider of NHS services in the Bolton area (the Service) for endometriosis between February 2023 and April 2024. Specifically, she complains that:

• a doctor prescribed hormonal treatment despite Miss A advising that she had tried several hormonal treatments which had not worked or reduced her pain • a doctor made an inappropriate comment about pregnancy being a treatment for endometriosis symptoms • at a follow-up appointment on 4 April 2024 another doctor was unable to provide information on laparoscopy findings because of a lack of information in her medical records • an urgent referral to a specialist endometriosis centre included very little information on her condition.

6. Miss A says the issues in her care have had a major effect on her mental health and stress levels. She says she constantly worries about her health, and whether she can trust the information doctors have provided to her. The negative effect on her mental health has also had an impact on her job and relationship.

7. Miss A also told us the lack of information in the urgent referral led to a delay in treatment because the specialist endometriosis centre has considered her non-priority. She says the waiting time for an initial appointment was 59 weeks.

8. Miss A wants the Service to acknowledge its mistakes, apologise and make service improvements.

9. On 31 October 2022 Miss A’s GP referred her to the Service to review her for possible endometriosis (this is a condition where cells similar to those in the lining of the womb grow in other parts of the body). Miss A had been struggling with very painful periods for 12 months.

10. On 11 January 2023 the Service performed an MRI scan of Miss A’s pelvis. This showed no definite features of pelvic endometriosis.

11. On 8 February 2023 the Service saw her in clinic. A doctor suggested that although the MRI scan had not showed endometriosis, they could treat her as if she did have it and give her oral and injectable hormones to suppress her periods. Miss A declined because those medicines had not suited her in the past. She opted to have a Mirena coil fitted (long term contraception that releases hormones and can be used to treat heavy periods).

12. On 14 June 2023 the Service saw Miss A again. Miss A declined hormonal treatment and said she was keen to find out whether she had endometriosis. As part of the conversation the doctor talked about pregnancy and the effect that would have on endometriosis. They agreed Miss A would have a laparoscopy (a minimally invasive procedure to investigate the abdomen with a camera).

13. On 13 March 2024 the Service performed a laparoscopy and identified extensive endometriosis. The Service referred her to a specialist endometriosis centre on 12 April.

14. In the meantime, on 4 April Miss A attended the Service and saw a different doctor. She reported constant pain with bloating and painful intercourse. She declined hormonal treatment and, on 16 April, the doctor made an urgent referral to the specialist centre.

Hormonal treatment

18. The NICE guidance says doctors should offer hormonal treatment to women with suspected, confirmed or recurrent endometriosis. It says that if initial hormonal treatment is not effective, not tolerated, or should not be given to a particular patient (for instance because of other medicines they may be taking) doctors should carry out further investigations or refer to a specialist endometriosis centre.

19. The ESHRE guidance says laparoscopy or hormonal treatments can initially be considered for women with suspected endometriosis. It says neither approach is superior to the other, and the pros and cons should be discussed with the patient.

20. Our adviser explained that laparoscopy is how endometriosis is definitively diagnosed. They explained a laparoscopy procedure carries some small risks of bowel damage, blood clots, and death.

21. We find that while offering and providing hormonal treatment was not outside the NICE guidelines, it was not the only course of action available. The 2013 GMC guidance said doctors must adequately assess the patient’s condition, including taking account of their history. Part of Miss A’s history was that hormonal treatments had not suited her in the past. Yet despite that history the doctor did not discuss alternatives with her during the appointment on 8 February 2023. They did not discuss with Miss A the possibility of performing a laparoscopy, a diagnostic step the ESHRE says is suitable for initial consideration. We find it was not incorrect for the Service to offer hormonal treatment, but given Miss A’s history of hormone treatment intolerance it failed in that appointment to also discuss alternative courses of action.

Comment about pregnancy

22. Following Miss A’s appointment on 14 June 2023 the doctor wrote to her GP. They said ‘I have explained to her that if she were to try for a pregnancy and she became pregnant very quickly it would make the diagnosis of endometriosis unlikely and that pregnancy in itself would be treatment for endometriosis if it were only minor’.

23. The ESHRE guidance says it is not uncommon for women with endometriosis to be advised that becoming pregnant might be a useful strategy to manage symptoms and reduce disease progression. However, it goes on to say this is not supported by quality evidence. It recommends ‘patients should not be advised to become pregnant with the sole purpose of treating endometriosis’.

24. Our adviser added that pregnancy as a treatment plan is an old-fashioned theory not recognised nowadays. They added that even in cases where pregnancy did relieve symptoms, this would only be temporary.

25. While the Service made an onward referral at the end of this consultation, we find it did not act in line with ESHRE guidance in mentioning pregnancy as a treatment for Miss A’s endometriosis.

Lack of information in records and referral

26. We have considered the final two parts of Miss A’s complaint together. That is because they are both essentially about the level of detail available about her endometriosis following the laparoscopy procedure in March 2024.

27. The NICE guidance says that during a diagnostic laparoscopy for endometriosis the doctor should perform a systematic inspection of the pelvis. The 2024 GMC guidance says doctors must make sure formal records of their work are clear and accurate. It says patient records should usually include relevant clinical findings.

28. The operation note for the laparoscopy contains very little detail. Our adviser said the photographs taken during the procedure are not very helpful as there is no panoramic view of the pelvis. The images show likely endometriosis, but there is no detailed record of where the endometriosis was seen or where the images were taken from.

29. The operation note simply says ‘endometriosis++’ which means there is a lot of it. Our adviser said that is not evidence of a systematic inspection of the pelvis.

30. Our adviser said it can be useful for doctors to draw a diagram of the uterus and ovaries, indicating where the endometriosis is. There was nothing like that in the notes from Miss A’s procedure. The records are minimal.

31. The laparoscopy findings prompted onward referral to the specialist endometriosis centre. The referral also lacked detail about the location and extent of Miss A’s endometriosis. It simply said she had ‘quite significant endometriosis over both [front] and [rear] uterine surfaces and in the pouch of Douglas [a small area between the uterus and rectum]. She is getting quite severe pelvic pain and I would appreciate an early appointment’.

32. We find the Service did not act in line with NICE or GMC guidance. The written record of the laparoscopy does not provide evidence the Service conducted a systematic inspection of Miss A’s pelvis as required by NICE guidance. It also failed to act in line with GMC guidance because the record of the procedure does not include enough detail to be regarded as containing all relevant clinical findings.

Impact on Miss A

33. We find that, on the balance of probabilities, the Service’s failure in February 2023 to discuss with Miss A the possibility of a laparoscopy delayed the progress of her diagnosis and treatment. At that appointment Miss A was already concerned that hormonal treatments had not suited her in the past and she was reluctant to try them.

34. When, in June 2023, the Service did discuss a laparoscopy with her she opted to have that procedure. Given the concerns she had already raised about hormonal treatment, and her subsequent actions, we consider that had the Service offered this in February it is more likely than not that Miss A would have chosen to go ahead with the laparoscopy then. The Service’s failing delayed the course of Miss A’s clinical journey by around four months.

35. We do not consider the Service’s comments about pregnancy had any impact on Miss A’s diagnosis or onward referral. Miss A said in her complaint that she found the comments to be disgraceful. We can understand why she felt that way. She was presenting with pain that was having an impact on her daily life yet was met with outdated and inappropriate comments about pregnancy. We agree that will have damaged Miss A’s trust in the Service and caused her to consider how much she could rely on what doctors were telling her.

36. Finally, we considered whether the Service’s failing in properly documenting the findings of the laparoscopy had any impact on Miss A. We find that in the weeks following the procedure it was another factor contributing to Miss A’s lack of faith in the Service and in the doctors treating her. It must have been very distressing for Miss A that, when she saw a different doctor on 4 April 2024, that doctor was unable to give her very much detail about the findings of that procedure. No criticism of the doctor she saw that day is implied here. They were hampered by the poor record of the procedure we have already described. In their onward referral the doctor said the notes ‘only say about the extensive endometriosis and there is no further description of her pelvis’.

37. Miss A is concerned the lack of information from the laparoscopy also caused a delay in her treatment at the specialist endometriosis centre. We find we cannot link the Service’s failings to her wait for further treatment.

38. We are hampered in our consideration by the same lack of information about the laparoscopy findings. We are sorry to hear Miss A has experienced a long wait at the specialist centre. That must be very difficult for her when she is clearly experiencing significant pain and discomfort from her endometriosis. Without knowing in more detail what the laparoscopy showed, we cannot know if a better description of that would have prompted the specialist centre to see her sooner. A more detailed description may have made no difference to her wait time.

39. We also note that despite the lack of detail, the two referrals were not completely silent on the possible extent or seriousness of Miss A’s endometriosis. The first doctor’s referral on 12 April 2024 said Miss A had ‘quite significant endometriosis’ and was getting ‘quite severe pelvic pain’. The doctor said they would ‘appreciate an early appointment’. The second doctor’s referral on 16 April 2024 asked the specialist centre to see Miss A ‘on an urgent basis’ and said she was ‘in constant pain’. They described ‘extensive endometriosis’.

40. It is possible that further detail from the laparoscopy could have led to her being seen sooner in the specialist centre. But it is also possible that would have made no difference. We are unable to say one way or the other, even on the balance of probabilities.

41. That said, it is an injustice to Miss A that she will never know whether a more comprehensive record of the findings of the laparoscopy would have made any difference to her treatment journey. Given the struggles she has been having with her endometriosis symptoms, and the impact those have on her life and health, we can understand how distressing it will be to never know if she might have been seen by specialists sooner. We do not consider the failings are the cause of her health, job and relationship difficulties as it must be very difficult dealing with her endometriosis symptoms. We do not underestimate how painful and distressing these symptoms must be. The Service has added additional distress through its failings, and it is easy to see how that has caused Miss A to lose faith in doctors.

42. While the Service has responded to Miss A’s complaint, we think there is more it needs to do to put things right. The Service has not yet acknowledged its failure to discuss a laparoscopy in February 2023. While it has apologised if the doctor’s comments about pregnancy upset Miss A, it has not acknowledged it was wrong to talk about pregnancy as a treatment for endometriosis. Finally, while the Service explained the second doctor Miss A saw was able to make an urgent referral to the specialist centre, it has not acknowledged that the record of the findings of the laparoscopy was insufficient. It has not apologised for the impact these failings had on Miss A.

1. We are sorry to hear about the experiences Miss A had while seeking help for her endometriosis symptoms at the Service. Her symptoms have clearly been very painful and distressing and have had a wider impact on her health and life.

2. We have found that the Service failed to offer an appropriate diagnostic procedure at the earliest opportunity. That delayed progress for Miss A by around four months. The Service inappropriately talked about pregnancy as a treatment for endometriosis which caused distress to her and contributed to her lack of trust in the Service. It also failed to properly record the findings of a laparoscopy.

3. While we could not say that caused her to wait longer to be seen by a specialist endometriosis centre, Miss A will never know whether more detailed description would have made any difference. That has also contributed to her negative feelings about the care she received and lack of trust in doctors. Our decision is to therefore partly uphold the complaint.

4. The Service should write to Miss A to acknowledge the failings and to apologise for the impact on her. It should produce an action plan to minimise the chances of the failings happening again.