43. Before we decide if we should investigate a complaint, we look at whether there are signs the organisation has got something wrong. We do this by comparing what should have happened with what did happen. We have done this for each aspect of Mr A’s complaint and have set out below what we have seen. The first section of this report covers the aspects of complaint where we have not found any signs that something has gone wrong.
Delay in tests and scans
44. Mr A tells us the Trust delayed arranging a HyCoSy scan and an AMH1 blood test until shortly before the deadline for accessing treatment. He says during this time Mrs A did not see a consultant or have any face-to-face appointments. Mr and Mrs A feel the Trust’s actions delayed their assessment for eligibility.
45. In its response to the complaint in February 2021, the Trust said at the time of Mrs A’s first appointment all HyCoSy scans were suspended due to the pandemic. However it wrote to her to confirm appointments had been restarted on 1 June 2020. It accepted Mrs A experienced a delay in getting a blood test. It explained this was due to the ongoing impact of COVID-19.
46. The NHS.uk webpage on IVF says if a couple is having problems getting pregnant the first step is to see a GP. If appropriate, the GP will refer on to a fertility specialist. The fertility specialist will ask about fertility history and may carry out a physical examination. NHS.uk explains women may have tests to check the levels of hormones in their blood and how well their ovaries are working. They may also have an ultrasound scan or X-ray to see if there are any blockages or structural problems.
47. The CCG’s policy on ‘Assisted Conception’ includes a baseline eligibility for IVF. This says patients who are concerned about delays in conception will have initial consultations to discuss lifestyle and sexual history.
48. Specialist referral for further assessment and investigation will be given to women of reproductive age and their partners, who have not conceived after three years of regular unprotected vaginal intercourse.
Our analysis
49. We reviewed Mrs A’s medical records from the period of complaint and can see she had an initial consultation with a registrar on 3 April 2020. The registrar discussed Mr and Mrs A’s fertility history with them and referred Mrs A for a AMH1 test and HyCoSy.
50. The registrar explained they can only refer Mr and Mrs A for NHS funded IVF treatment once they had been trying for pregnancy for three years. The records show at the time of the appointment Mr and Mrs A had been trying to get pregnant for two years and four months. This meant the Trust could not refer them for NHS funded IVF until between December 2020 and January 2021.
51. Also, Mrs A was due to turn 39 in under a year by February 2021. Given that the Trust’s upper age limit for funding is 39 years old, this meant Mr and Mrs A would only be eligible for NHS funded IVF from December 2020 to February 2021.
52. The registrar wrote to Mrs A’s GP after the consultation. This says, ‘I had a discussion with this couple that in future if we want to consider them for IVF treatment by NHS funding then they will need to be eligible for that and that they will be eligible between the first week of December and [Mrs A’s] 39th birthday’.
53. The letter shows the registrar had arranged a follow up appointment via virtual clinic for six months’ time.
54. Mr and Mrs A had an initial consultation with a fertility specialist in April 2020. However, at this point they did not meet the baseline criteria for access to NHS funded IVF as they had only been trying for a baby for two years and four months. To access further specialist assessment, they had to wait a further eight months, meaning they would not be assessed until December 2020.
55. The Trust accepted the blood test did not take place as soon as it could have. This was because of the ongoing impact of the COVID-19 pandemic.
56. There is nothing in NHS guidance that says when blood tests should take place. The guidance only says that a fertility specialist may request these before referring a couple to the assisted conception unit. Therefore, we cannot say the Trust did anything wrong by not doing this until 17 November 2020. Also, we realise the pandemic delayed a lot of investigations.
57. We recognise Mr and Mrs A feel they should have got more input from the Trust before the follow up appointment in November. However, we have seen nothing to suggest the Trust should have done more.
58. The CCG’s assisted conception policy makes it clear that clinicians will only consider a couple’s eligibility for access to NHS funded IVF once they have been trying to get pregnant for three years. In Mr and Mrs A’s case this would have been after the first week of December 2020.
59. While we accept the delayed blood test was frustrating for Mr and Mrs A, we have seen nothing to say this had any impact on when their eligibility was assessed. For this reason, we are not continuing our consideration of this part of the complaint.
Not meeting the BMI criteria
60. Mr A says the Trust delayed telling Mrs A that she did not meet the BMI criteria until shortly before her deadline for treatment. He feels a clinician should have told her sooner, so she had more time to lose weight.
61. The CCG’s assisted conception policy sets out the BMI eligibility for IVF. This says IVF will only be funded for women who have had a BMI between 19-30 for a period of at least six months before assessment for treatment.
62. The policy says women must be told about this at the earliest possible opportunity, as they progress through infertility investigations in primary and secondary care. GPs are encouraged to give clear information about BMI criteria to people.
63. In their complaint to us, Mr and Mrs A suggested they were unaware of the BMI criteria for NHS funded IVF until shortly before their window of eligibility.
64. Mrs A had an initial consultation with a fertility specialist (registrar) on 3 April 2020. It is unclear whether the registrar discussed the BMI criteria. However, notes from the appointment clearly state Mrs A’s BMI was under 30.
65. At this stage Mrs A had already discussed pursuing IVF with the referring GP and had pre-conception counselling with a separate clinician. We consider it likely she was aware of the need to maintain a healthy weight to be eligible for NHS funded IVF. Even if this was not the case, we can see information about the basic criteria for NHS funded IVF is easily accessible online.
66. The Trust rescheduled the follow up appointment to 4 November. However, this was because Mrs A asked to see a consultant obstetrician and gynaecologist. Despite this change, the consultant was able to assess Mrs A’s eligibility for NHS funded IVF before her period of eligibility began.
67. The follow up appointment was virtual, so the consultant was unable to carry out a physical examination and asked Mrs A to provide her weight and height via email. Notes from the appointment show the consultant explained they needed this information to calculate Mrs A’s BMI.
68. Mr A emailed the consultant on 11 November. Mrs A’s BMI was outside the range of 19-30 set out in the assisted conception policy. At this point in time, Mrs A did not qualify for NHS funded IVF.
69. Mrs A had a face-to-face appointment with the consultant on 9 December. At this point Mr and Mrs A had been trying to get pregnant for three years. They met the baseline eligibility criteria set out in the CCG’s assisted conception policy and qualified for further specialist assessment.
70. During the appointment, the consultant assessed Mrs A against the additional eligibility criteria. The consultant told Mrs A her BMI was 37 so she did not meet the CCG’s BMI criteria for access to NHS funded IVF.
71. The consultant told Mrs A she would need to maintain a weight of 60kg for six months before treatment, to qualify for NHS funded IVF. The consultant discussed weight loss strategies but said they considered it unlikely Mrs A would reduce her weight to 60kg before her 39th birthday.
72. We consider the evidence suggests the soonest the Trust was able to tell Mrs A she did not meet the BMI criteria was shortly before her deadline for treatment.
73. We acknowledge Mrs A feels finding out she did not meet the BMI criteria on 9 December, meant she did not have enough time to lose weight. We recognise she only had a small window of eligibility for NHS funded IVF and understand that Mrs A feels she should have been told sooner. However, we have seen nothing to suggest the Trust could have told her before this date.
74. Mr and Mrs A were not eligible for assessment before December 2020. Unfortunately, at the point of assessment Mrs A’s BMI was outside the CCG’s accepted range. This meant she did not qualify for NHS funded IVF.
75. We do not dismiss the distress Mr and Mrs A have experienced because they cannot access NHS funded IVF. We have seen no signs of a failing in this aspect of the complaint.
Decision not to submit a special funding request
76. Mr A complains that a consultant refused to submit an IFR for them. He says the consultant ignored information in a letter from Mrs A’s GP.
77. NHS.uk guidance says the ultimate decision on funding for IVF is down to CCGs and is set out in its policies.
78. We have already set out the CCG’s eligibility criteria. We can see the CCG made a temporary change to its eligibility criteria to give women whose treatment was impacted by the pandemic, a further opportunity to qualify for NHS funded IVF.
79. The change was to make allowances for women who are over 39, but whose treatment has been impacted by COVID-19. The guidance says up to two full cycles of IVF will be funded in eligible women who are not aged more than 39 at the time of the referral to the assisted conception unit.
80. NHS England’s guidance on IFRs for patients says an individual funding request can be made for a treatment that is not routinely offered by the NHS when their clinician believes:
• a patient’s clinical circumstances are clearly different to other patients with the same condition • there is a reason why the patient would respond differently to other patients and would get more clinical benefit from the treatment.
Our view
81. On 26 October Mr A contacted the Trust. He told it Mrs A’s current weight. He provided a copy of a letter from Mrs A’s GP that said her epilepsy medication makes it harder for her to lose weight. The GP said losing weight has increased Mrs A’s feeling that she is going to have a fit. The GP said losing weight slower would have less effect on her epilepsy.
82. Unfortunately, Mrs A did not reach the BMI target by 31 October 2021. This meant she was not eligible for NHS funded IVF. There is no provision within the CCG’s eligibility criteria to make exceptions.
83. On 14 December Mr A emailed the Trust. He asked the Trust to complete a IFR, including the information from the GP and that Mrs A had done well to lose weight despite the additional complication of her epilepsy.
84. Mr A chased a response to this email on 4 and 17 January. The records show on both occasions the Trust’s complaints lead contacted the consultant directly for an update.
85. On 17 January, the consultant emailed the Trust’s complaints lead advising they saw no reason to submit an IFR, as Mrs A had been unable to meet the BMI target despite an extension to the deadline.
86. We can see the Trust emailed Mr A with the consultant’s reply on 20 January. It advised Mr and Mrs A to contact their GP to discuss their options.
87. NHS England’s guidance makes it clear an IFR is a means for a clinician to request treatment not normally funded by the NHS if they feel a patient has exceptional circumstances. Patients do not have an automatic right to an IFR, it is based on the clinician’s opinion.
88. Our principles say organisations should treat people fairly and consistently, so that those in similar circumstances are deal with in a similar way. Organisations should be open and truthful when explaining their decisions and actions. They should give reasons for their decisions.
89. We recognise Mr and Mrs A feel the consultant ignored the letter from their GP. We consider the evidence suggests the consultant reviewed this before making their decision. It is clear the consultant’s decision not to submit an IFR was incredibly disappointing for Mr and Mrs A, who saw it as their final opportunity to access NHS funded IVF. We do not dismiss how this decision affected them.
90. The evidence shows the consultant did not feel there were exceptional circumstances that meant an IFR was necessary. We can see the Trust clearly explained its reasons for this decision. We consider the Trust acted in line with the relevant guidance in not submitting an IFR. There is no sign of a failing in this aspect of the complaint. We cannot say the consultant was wrong not to submit an IFR as this was a decision for them to make based on the available evidence.
91. The next section of this statement outlines the aspect of the complaint where (from comparing what should have happened, with what did happen) something went wrong. When we see signs that something went wrong, we consider whether this had a negative effect on the individual which the organisation has not yet put right. For the following aspects of complaint, we can see something went wrong, but our decision is the CCG has already done enough to put right any negative impact.
The CCG
92. Mr A complains about poor communication from the CCG between 12 October 2021 and 29 March 2022. He says the CCG delayed passing information across and this added to the Trust’s decision not to submit an IFR.
93. Mr A contacted the CCG several times between 13 October and 31 October 2021. Some examples of these are:
• On 13 October Mr A provided the CCG with a copy of the GP’s letter. He referenced a telephone call the day before and asked the CCG to advise on next steps
• On 26 October Mr A emailed the Trust with a copy of the GP’s letter. He copied the CCG into this.
94. We reviewed the CCG’s complaints file and were unable to see it gave any reply before the extended deadline for treatment. This is not in line with our principles which say organisations should behave helpfully, dealing with people quickly and within reasonable timescales.
95. We consider the CCG’s communication in October 2021 was not in line with our principles. This tells us something went wrong.
96. Mr A says the CCG’s poor communication affected the consultant’s decision not to submit an IFR. He feels if the CCG had sent the GP’s letter to the Trust before the deadline, the consultant may have decided to submit an IFR.
97. The consultant chose not to submit an IFR because Mrs A had not met the BMI criteria by 31 October 2021. The evidence suggests the same decision would have been made even if the CCG had sent the letter to the Trust before the deadline. This is supported by Mr A’s email to the Trust of 14 December 2021 where he clearly says Mrs A is above her target weight.
98. The CCG’s letter to Mrs A of 7 June 2021 clearly says she needed to keep her BMI between 19 and 30 for six months before 31 October 2021, to qualify for NHS funded IVF. Unfortunately, Mrs A did not meet this target.
99. We cannot link Mr and Mrs A being unable to access NHS funded IVF to any mistake the CCG made. Mrs A did not meet the BMI target by 31 October 2021, which was already an extended deadline due to the pandemic, and therefore did not qualify for NHS funded IVF.
100. We would not expect the CCG to have been involved in the process past this point as it had not received an IFR. While we accept the CCG’s communication could have been better, we consider there was nothing further it could have done that would have affected the outcome.
101. Despite this:
• in February 2022, the CCG met with Mr and Mrs A to discuss their concerns. After this it made internal enquiries about whether a further extension to the deadline could be made
• in March, the CCG had a call with Mr and Mrs A. This concluded that the criteria for NHS funded IVF had not been met and treatment could not proceed.
102. In its final response to the complaint on 29 March 2022 the CCG accepted the emotional and physical effect applying for assisted conception had on Mr and Mrs A.
103. The CCG apologised for any distress they experienced as they tried to navigate between their GP, the hospital, and the CCG. It said their complaint highlighted how important it is that the IFR process is clearly explained from the beginning, explaining who needs what information throughout.
104. We do not dismiss how distressing the CCG’s decision not to provide NHS funding for IVF was for Mr and Mrs A. We consider this decision was in line with the relevant guidance.
105. While the CCG’s communicated was below the standard we would expect to see, our decision is it has done enough to put right the distress caused as a result. We have seen nothing to suggest the poor communication affected the decision not to provide funding.