NHS Sussex

5. Ms A complains about the care and treatment provided by the Trust between January and August 2024. Specifically, she says the Trust: • misinformed her about eligibility, criteria, policies and procedures for NHS funded in vitro fertilization (IVF) • carried out unnecessary surgery to prepare her for IVF • told her she did not meet the criteria for IVF after she has surgery.

6. Ms A says she had unnecessary surgery to remove her fallopian tubes (part of a woman’s reproductive system). She says as a result, she has no chances to conceive naturally.

7. She says she is completely broken, depressed, disappointed and angry. She also says the poorly written and communicated policy was misleading, as it implied surgery was the only way to meet the criteria for NHS funded IVF treatment and this is extremely distressing for her to now know.

8. Ms A wants the Trust to give her NHS funded IVF treatment. She also wants service improvements to ensure this does not affect anyone else and financial remedy in recognition of distress and unnecessary surgery.

9. Ms A had a history of pelvic inflammatory disease. This is an infection of the female reproductive system which affects the womb, fallopian tubes and ovaries.

10. Ms A had been experiencing abnormally heavy or prolonged menstrual bleeding (Menorrhagia) thought to be caused by a non-cancerous tumour that grows in the uterus (fibroid) which had been seen on a scan. She also had concerns about her fertility.

11. Ms A met with the Trust to discuss results of tests she had following concerns about her fertility. The Trust told her she had a fibroid in her uterus, blocked fallopian tubes and her AMH levels are low of 2.8 pmol/L. AMH (Anti-Müllerian Hormone) levels are taken from a blood test and predict a woman’s egg reserves or likely response to IVF treatment. They are measured in picomoles per liter abbreviated to pmol/L.

12. The Trust recommended her best chances of conception were surgery and IVF.

13. In May 2024 Ms A had surgery to remove her fallopian tubes and the Trust referred her to a fertility clinic. The clinic refused to provide NHS funded IVF treatment as it said she did not meet its criteria.

16. Before we decide if we should conduct a detailed investigation of a complaint, we look at whether there are signs the events complained about had a negative effect which the organisation has not put right.

17. Having done so we have seen the Trust has already done enough to put right the impact of events where we have seen indications something went wrong.

Information about the criteria for NHS funded IVF treatment

18. In her complaint to us, Ms A complains the Trust misinformed her about eligibility, criteria, policies, and procedures for NHS funded IVF treatment.

19. In a consultation in June 2024, the Trust told Ms A, following gynaecological surgery she would be eligible for three rounds of NHS funded IVF. After the surgery Ms A was referred to the IVF clinic who informed her, she was not eligible for any NHS funded IVF treatment.

20. Ms A called the referring doctor at the Trust for clarity. She says the doctor also did not understand why Ms A had been refused NHS funded IVF. Ms A says the Trust sought clarification from the clinic. This resulted in the same decision. The clinic explained this decision was because of her low AMH level.

21. Ms A raised a complaint with the Trust about the information the doctor had given before the surgery.

22. GMC guidance sets out how doctors should act in their general practice. It says doctors must make sure that the information they give patients is clear and accurate.

23. The Trust told Ms A, it understands the Trust’s ACT policy does not completely deny NHS funded treatment for all patient with an AMH under 5.4 pmol/L.

24. On 11 February 2025, the Trust sincerely apologised to Ms A and acknowledged how upsetting and distressing this has been for her. It revised and re-worded its ATC policy, making it clearer for future patients.

25. The Trust wrongly advised Ms A that she would be eligible for NHS funded IVF treatment post-surgery when the guidance did not clearly indicate this. Although there was ambiguity in the guidance the Trust did not share this with her or clarify it before communicating with Ms A. This was not in line with GMC guidance.

26. Ms A says the poorly written and communicated policy was misleading and this experience has been extremely distressing.

27. The Trust recognised this discrepancy in the guidance and sought to change it. It has also offered an apology to Ms A and recognised how upsetting this was for her.

28. PHSO guidance says wherever possible, staff should explain why things went wrong and identify suitable ways to put things right for people. Staff should also give meaningful and sincere apologies and explanations that openly reflect the impact on the people concerned.

29. We are satisfied the Trust acted in line with our guidance in apologising and clarifying the ATC policy. We are also aware that since raising the complaint, Ms A’s AMH levels have increased, she has become eligible for NHS funded IVF treatment and she has successfully conceived.

30. Ms A has received IVF treatment, an apology and service improvements. These changes are appropriate and proportionate, and in line with our guidance. We have decided there is nothing further for us to add.

Ms A underwent unnecessary surgery

31. In March 2024, the Trust confirmed Ms A had a two centimetere fibroid with bilateral hydrosalpinx (blocked or swollen fallopian tubes). Records show the Trust told Ms A this can affect IVF. The Trust recommended keyhole surgery with a tubal patency test (a test that checks if the fallopian tubes can open).

32. The Trust explained if Ms A’s fallopian tubes were found to be non-patent (closed or obstructed, preventing sperm and eggs from meeting), it recommended removing them. This is because obstructed tubes are a high risk for pregnancy in the tubes (known as an ectopic pregnancy). An ectopic pregnancy is a very serious condition which can lead to a life-threatening rupture.

33. In April 2024, the Trust met with Ms A to discuss the plan for surgery. It explained in detail what the process means and that it would be irreversible.

34. In May 2024 the Trust completed the laparoscopy and determined Ms A’s fallopian tubes were blocked and damaged and should be removed. Ms A had consented to removal ahead of the procedure, so it removed both fallopian tubes. The Trust referred Ms A for NHS funded IVF treatment.

35. The NICE guidance says if your fallopian tubes are blocked and swollen (a condition known as hydrosalpinx), you should be offered the choice of having your tubes removed through laparoscopy before IVF. This increases your chances of a successful pregnancy through IVF, but it means you will never be able to conceive naturally in the future.

36. Following Ms A’s complaint, she tells us the distress she felt undergoing surgery to have both fallopian tubes removed, as she was led to believe this was the only way to be eligible for NHS IVF funded treatment. She says that the surgery was unnecessary and has left her with no chance of conceiving naturally.

37. We understand that this experience has been frustrating for Ms A, and we recognise why she feels in hindsight the surgery may not have been necessary. We have not identified any guidance that states the surgery was mandatory for Ms A to access the Trust’s funded IVF treatment pathway.

38. However, NICE guidance is clear the removal of blocked fallopian tubes increases the chances of a successful pregnancy through IVF. For this reason, we cannot say the recommendation to proceed with surgery before IVF was outside guidance, given the doctor’s understanding at that time, which was that Ms A did meet the criteria for IVF.

39. Additionally, we have seen in January 2024 before investigations began it advised her that any IVF treatment would be less successful with hydrosalpinxes present, and therefore protocol is to remove these prior to any IVF treatment.

40. We recognise Ms A feels like she had no option but to proceed with the surgery and we appreciate that was a very difficult choice to make at the time. Based on the clinical information we have reviewed, we are satisfied that the Trust acted in line with NICE guidance. There are no indications anything went seriously wrong.

Told post-surgery she does not meet the criteria for NHS funded IVF

41. Following surgery, the Trust referred Ms A to the IVF clinic to begin the IVF process. Ms A explains the clinic wanted a further blood test to read her AMH levels before starting IVF.

42. Ms A says she called the clinic to find out the results, the clinic informed her she was unfortunately not eligible for funded IVF. On initial assessment the IVF service reviewed Ms A’s AMH level. This was 2.9pmol/L. The clinic refused Ms A further treatment as the level was below 5.4poml/L.

43. The Trust’s ACT policy says AMH measure to predict the likely ovarian response to gonadotrophin stimulation in IVF will be requested by the specialist fertility services. Patients can therefore be referred to the specialist service prior to receiving these test results if they fulfil the remaining eligibility criteria. An AMH test will be undertaken at point of referral for fertility investigations.

44. An AMH of less than or equal to 5.4 pmol/L predicts a low response and therefore patients with a score of 5.4 pmol/L or lower will not be funded for assisted conception treatment (IVF).

45. We understand the decision was extremely upsetting for Ms A given the information she received from the Trust before her referral (as addressed in detail earlier in our consideration). The decision at that time to decline IVF based on her AMH level is in line with the Trust’s policy. For this reason, we cannot see anything was wrong with the information she was given at this time.

46. We are pleased to see that Ms A was later offered NHS funded IVF treatment on a fast-track basis. Taking all the evidence into account, we consider the Trust followed the relevant policy and guidance and acted in Ms A’s best interests to support her chances of becoming pregnant. We hope our consideration reassures Ms A about the action the Trust has taken.

1. We have carefully considered Ms A’s complaint about University Hospitals Sussex NHS Foundation Trust (the Trust). We are very sorry to learn how Ms A weas affected by the concerns raised.

2. We consider there is evidence the Trust did not clearly communicate with Ms A and that was not in line with guidance.

3. We have looked at the impact this had on Ms A, and what the Trust has done to put things right for her and to improve its services. After doing so, we do not consider there is anything further for the Trust to do. We will explain the reasons for our decision in this statement.

4. Complaints give us valuable insight into the organisations we investigate, so we would like to thank Ms A for sharing her experience with us. It is important to acknowledge that where we have not identified any indications something went wrong in relation to Ms A’s care, it does not detract from her experience, nor the impact this had on her.