Feeling down about NHS fertility 'treatment' - need some perspective

[lozster]

I've been attending an NHS fertility clinic for about a year now. It's been a bit haphazard to say the least. I've never yet seen the consultant but was due an appointment first week in July (booked end of March). Friday I received a letter cancelling this and re-booking me in to what appears to be the nurses, not the consultant's, clinic and this not until mid September. Pathetic though it may be I couldn't stop crying all evening. I feel totally gutted.

This may sound a bit whiney/precious/prejudiced to other members of staff who may well have exactly the same knowledge as the consultant but let me explain. First off at the clinic, I saw a registrar who took a case history, booked me in for another appointment in 6 months, told me to book in for a HSG and gave me a prescription for Clomid (x 6 months). She told me to start taking this straight after the HSG if it was ok - no need to come in. The HSG was ok so I asked the radiographer to check whether it was true that I didn't need to come in for monitoring she rang the fertility clinic and I got told again yes, no need to come in. 5 months later I attend my appointment for the nurses gynae clinic. I was just about to take my last round of Clomid. First thing she does is tell me off for not coming in for a scan. She then tells me that my 'action plan' will be that she will request funding from my PCT for IVF (I meet the criteria) and that I should come in for a scan on this my last round of Clomid. So 2 weeks later I do that. I have two follicles. I ask if that means that there will be an egg and she rolls her eyes at me and says no of course not, so I ask how I can I can tell and she very reluctantly books me in for some bloods. I ask if I can take further Clomid - perhaps the double dose and she says no. I ask if my IVF funding has been applied for and she tells me no, it's pointless as it's likely to be suspended due to cost cutting. When I say that it isn't yet suspended she then tells me that I'm too old. I'm on the cusp but I'm not actually too old. She then explains that what she thinks that I will be 40 before I make it to the top of the waiting list. I was totally bewildered as she'd previously agreed that this was my plan of action! I then had to insist that it was my wish that the money was applied for. Two weeks later I ring the PCT to check up on the application for funding and they tell me that, by coincidence, they just got the request and would consider it so had I not raised this at the scan, she wouldn't have bothered to apply for my funding! I then get a call about my day 21 progesterone to be told that it's very unlikely that ovulation did actually occur on that cycle. I had/have so many unanswered questions about my progesterone level, the likliehood of IVF working for me, why I wasn't allowed to try a higher dose of Clomid that I requested a further appointment. I was offered either an appointment in 4 weeks time at the nurse's gynae clinic or an appointment in 8 weeks time with the consultant. I asked for the consultant appointment as the nurse would be the same one who'd claimed it wasn't worth me applying for NHS funding, plus my partner was starting a new job on the date offered for that. Also the PCT advised me that the consultant is able to prioritise treatment where funding may be lost due to age if he is familiar with the case. The consultants appointment is agreed. Two weeks on I have no letter so I call and they say the appointment has been made for me. A week later it arrived with a date slightly longer than I'd been promised but still ok. It's this appointment that has now been cancelled and seemingly replaced with an appointment at a different clinic (that of the nurse who didn't apply for funding when she said she would) over two months later.

this is obviously massively emotive for me and I'd be feeling very wobbly no matter what but I really feel that I haven't received the best treatment here. I'm going to call on Monday and check that this isn't some big mis-understanding. Am I getting this all a bit out of perspective? I feel like the quality of my treatment has been lacking here but wonder if I'm not being realistic in my expectations of the NHS

I would ask your GP to refer you to another NHS unit particularly if you can travel to a city. It is certainly fair to say that some units are better than others.

You have not received the best treatment here by any means; infact your own example of NHS fertility treatment is one of the worst I have read of in a long time.

You are not being unreasonable to be upset. This is awful. I would aks to be referred with a degree of urgency elsewhere. I assume you can't afford to go private?
I would also contact the patient advice and liaison service (PALS) at the hospital you are currently using and ask what the hell has been going on?

thanks for the responses - Attila, I did think about going back to the GP who was very sympathetic and tried to get Clomid for me himself before referring me - the irony here being that he couldn't as the use wouldn't have been monitored! I've been thinking about going back to the GP for a while but didn't know they could refer me elsewhere.

Northernlurker - that's a good suggestion about the PAL's - I can recall seeing a mention of them on the hospital website. Yes, i can afford some private treatment but I had hoped to combine with NHS. I am reluctant to embark on private treatment before NHS is totally ruled out as, although the PCT have told me that private doesn't in itself rule out NHS treatment, it may end up doing so due to timings if you see what I mean. Basically I have until mid March to use the PCT money money with the NHS so if I choose to fill all this time with private treatments then I will be ruling out my NHS rounds if you see what I mean. Not sure I'm explaining this too well . The other reason I wanted to see the consultant is that if I know for sure that I won't get NHS then I would consider other clinics. If I'm combining then I need to stick with the private arm of this NHS one to stand any chance of coordinating treatment. Problem is it's the same nurse at the private clinic so me thinks it will be the same crap but with a price tag!

My partner thinks it may be a clerical error that my appointment has gone from the consultant to the nurse. I'm more cynical. I will ring tomorrow and speak to someone and try not to cry on the phone. I work in an open plan office and have to sneak away so it's massively stressful. I'd invested so much in this July date even delaying decisions on travel for work until then that to have it taken away or delayed (whichever) feels like a massive kick in the guts. My partner also thinks that we may be able to pay for a private consultation to ask whether we can be prioritised on the NHS wait list. This may be an option as it's ok to run NHS and private in tandem so I could look at this too.

thanks again for the feedback - it will make me feel stronger tomorrow knowing that I'm not being precious. You've also given me some other routes to try too.

I'm sorry to say I think this is very poor service. I don't think you've got it out of perspective at all.

My GP fucked around for ages like this when I first sought help for treatment about fertility probs. Took ages (well over 6 months) to get him to even make the referral to the fertility clinic, even though we had been trying in vain to get pregnant for two years. So I really know how it feels to be kept waiting. Let's face it this is not a problem which improves with age...

But once I was referred the service /treatment we received was excellent and much better than you describe. We were put on waiting list for IVF as soon as it became clear that was going to be necessary.

I am not sure what to suggest, obviously see if you can get referred elsewhere if that is a possibility. If not, could you try speaking diect to the consultant? S/he probably has no idea what has been going on. I say this because I once e-mailed my consultant directly with a question about my treatment (middle of night stressing about blood test results) and could only find his e-mail on the website. I got a call from his secretary in the a.m.asking if I could come in at 3pm that day so he could discuss it with me. I always felt I probably wouldn't have got the same response if i'd just phoned the clinic reception!

I think if you can't find another clinic ( or if this might lead to further delay), you might just have to politely but forcefully complain. I hate complaining, but I am a professional in another field, and I know that when I am extremely busy, it is often those clients who shout loudest who get the most attention.

Good luck. I really hope you can get this sorted out.

Hi there.

I would urge you to appeal/complain.
I was 39 and had been told I was too old for IVF on the NHS but I wrote to the health commission and complained. 2 monts later I was fast tracked into ivf and I now have a healty 6 month old son. I wish I had done it earlier.

I hate complaining and I really ummed and ahhed about doing it but it did work - thoug they were rubbish at letting me know I had been successful so make sure you chase them.

I found a template online wich referred to the NICE guidelines and they agreed I had been messed about.

I am in Wales. If you need any more info PM me. There are templates here

please please do complain. I was on Clomid for 6 monts too and it delayed my treatment. My SIL urged me to complain a lot earlier and I really wish I had.

sorry my 'H' key is playing up so there are a few letters missing.

This sounds shambolic to me and I can totally understand why this is upsetting you so much.

I echo what others have said about complaining. I wonder whether you ought to also put everything in writing to the Consultant whose clinic you are under and cc your GP in on that letter too.

I too was under a fertility clinic and had issues (nothing like what you have gone through). I received letters where they had obviously got me mixed up with another patient. It doesn't inspire you with confidence in the system.

lozster, not sure where you are in the UK however if you look up your PCT's (not hospital's!) guidelines on IVF funding (and that include IUI before IVF) and your PCT funds it (mine does one cycle) and you are eligible you can look to see if there are any private clinics/hospital in your area that accept NHS funding. This is what I did (more than a year with NHS hospital, different dr each time, 3mth wait between appoitments and not looking like going anywhere near clomid after 18mths of nothing!!) - I went with Care (as near me and a big Assisted Fertility provider that takes NHS funding) and only had to wait 3 months from referral to seeing a consultant. You can self refer or get your Gp to refer. There are Care clinics in: Sheffield, Manchester, Nottingham, Northampton plus several other places. Why not see where you live and what other clinics are about and if they accept PCT funding?

PS - my story has no happy ending, one NHS cycle later no bfp and now private funding or nothing. But, I had the chance.

thanks everyone - here's the update - I rang today and got told that yes my appointment has been cancelled as the consultant is out that week. They changed the appointment from a consultant's appointment to a nurse's appointment as 'that was the earliest type of appointment available' . I said that this was unacceptable (not to mention a bit odd!) and was offered an appointment for last week in Sept with the consultant which I've taken.

However, I am complaining. I'm just composing my mail to the PALS and also wondering about cc'ing my GP as suggested. I'm not sure whether to focus on the whole list of complaints as above or just focus on the big issue of appointment cancellation and non-monitoring of Clomid...

Keziah, my PCT offers 2 cycles - I was just hoping, being realistic given my age, to get one by which point I should have the cash to pay for some more treatment. I know the outcome we all want is a pregnancy but there is some comfort to be had in having had the chance.

lozster - great your PCT funds 2 cycles!! However getting it seems the problem. Can't believe also how quickly they gave you clomid. Can you find anywhere to take your pct funding if they say you need ivf?

just checked out CARE - there is one near me and they do say (as you said keziah) that they accept PCT funding .... just can't seem to see if my PCT will do it. I have had very quick replies, all from the same person, at my pCT so I may wait until I get a response off the PAL at my current hospital then mail the PCT again.

thanks again everyone

lozster - if you go to your Gp and say you wish to transfer your PCT funding to Care then they will do it! That is what I did, though in fairness my local hospital doesn't do ICSI so I had no choice. Care (I don't work for them!!) do free open evenings once a month - why not phone up your local Care and book onto one of those (great source of info and you get to see everywhere, including theatre and meet embryologists etc). Care are very busy though - but from getting funding it only took 3 months to see a consultant and when saw consultant it was all "go" for treatment. You may have IUI before IVF - as PCT funds certain amount of IUI before your IVF cycles as well.

Just popping back to say that PALS are following up with consultant on my behalf (thanks northern lurker). Next stop will be GP on Monday to ask for transfer of funding (thanks Keziah)