"Feeling like bystanders in our IVF treatment "

About: St Mary's Hospital (Manchester)

We have been trying to conceive for 3 yrs and was referred to St Mary's by my gynaecologist. Once our referral was ‘in the system’ I was discharged from gynaecology without any diagnosis or explanation for our failure to conceive. By the time we had our first appointment at St Mary’s we were very stressed and anxious about the whole situation and desperate for answers.

Whilst the majority of nursing staff are all very nice, I think there has consistently been a complete lack of information about our treatment, test results and progress. The nurses don’t have the knowledge to answer the ‘why’ questions we have, but we are told there is a 5-6 month wait if we want to speak to a doctor to ask ‘why’.

At the age of 31, and all other tests coming up as normal, no-one has been able to explain why a short protocol was selected for my 1st IVF treatment. Just understanding why helps me to deal with the stress and anxiety of the situation. My partner had a semen analysis as part of the standard group of tests we had at our first appointment. We called 6 weeks later asking for the results and were told that they don’t give results. We would be contacted if there was a problem. Only when we were most of the way through our 1st cycle of IVF, and after I had asked for the third time why ICSI had been chosen over IVF, I was told my partner has a low sperm count.

We felt we were treated as though this is an insignificant fact that we had no right to know. My partner wasn’t even there at that appointment and didn’t have the opportunity to hear this or discuss it with a medical professional, I had to tell him myself. We feel we have bee fobbed off with “he might have had a cold that day, it can make it lower as a one off, don’t worry about it.” Yet he is now not entitled to a re-test.

From our experience the administration side of things at St Mary’s has been appalling, we have to chase for letters, appointments, call backs etc. Our first ever appointment was scheduled for 8am, yet the nurse we were seeing wasn’t rota’d to start until 11am. 3 hours walking around the corridors of the hospital and endless cups of coffee just because someone can’t work a rota in line with an appointment list.

From this first appointment, we received a follow up letter confirming that we had been accepted for IVF treatment. This letter was signed off by the nurse we saw, and her job title was Nurse Practitioner Infertility. The envelope was stamped Private and Confidential, yet the nurses name and full job title was clearly visible through the window of the envelope. I think this showed no consideration of the concept Private and Confidential. The letter arrived while we were on holiday and my partner’s mum, who was feeding our cat for us, told us immediately that she had seen this letter.

We had not told our families at this point that we were even trying for a baby, let alone struggling. It was a shock to us that we were being treated for ‘infertility’ rather than ‘assisted fertility’. I know it’s just a play on words, but no-one had told us at that point that there was anything wrong with us at all, we just needed ‘a bit of help’. To see the word ‘infertility’ written down like that for the first time was a complete shock and very upsetting. To have that play out in front of my (very nice) mother-in-law was something that could have been avoided very easily.

There have been numerous other instances of poor communication, withholding information, decisions being made without explanation or our involvement and a lack of empathy. When learning how to inject myself for the first time, I expressed my fears “what if it comes down to it and I can’t actually inject myself?” The nurse just brushed me off with “… you want a baby don’t you?” and moved on.

Whilst the science and medical treatment that IVF represents is amazing and 1st class, we have found the experience is horrendous and emotionally exhausting. At St Mary’s the system seems to stack the odds against us and make an already difficult experience feel impossible. We are just bystanders in this journey, rather than being active participants in our own treatment. Considering we are trying to make a baby, it would be nice if we could be involved.

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Response from St Mary's Hospital

We are very sorry to receive your comments and concerns via the NHS choices website. It is very difficult to respond to the specific concerns you have raised without being able to investigate in detail. We take all issues surrounding patient care very seriously. If you want to raise this issue please contact our Patient Advice and Liaison Service on 0161 276 8686 or by e-mailing pals@cmft.nhs.uk

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