Stuck in the NHS process

[TheVessel]

Hi there

I've rarely been on these boards and am a bit of a newbie here. There's a fair bit of background below, and I would value some advice from those that have been through the system before - or have found ways to make the NHS actually listen and react.

We've been 'officially' TTC with the NHS for 18months now and I'm feeling fobbed off by the system.

I have PCOS. No-one knows how long my cycle is. I have three to four periods a year, four if I'm 'lucky'.

Clomid - just completed the maximum number of tries, the final two months were on 150mg pr day (way over NHS limits, but that's what my NHS consultant instructed).

Progesterone scores are traditionally in single figures with Clomid, though I did manage double digits (13, then 22 - hurray!) on my final, triple dose months.

Metformin turns me into a zombie where all I wanted to do was sleep and my productivity was through the floor. I had no brain.

I conceived in Oct 2011, triplets, lost the lot over a protracted four weeks. First was a miscarriage, second was 'reabsorbed', third was a grain of rice size before miscarrying. For that one I was taking Clomid (50mg) and Met at the time. After that (and 7 years of on/off trying without NHS help) we were devastated and things went on hold for a bit while we recovered.

Conceived again Jun 2012, single embryo, thought I might be miscarrying so went to the emergency gyny clinic. Scan showed a 'non-viable' embryo and I miscarried a few days later. I was taking no drugs at the time.

Was told that they don't investigate repeat miscarriage until you've had three. Losing four embryos in two goes doesn't count.

The last consultant I saw ignored my query over progesterone scores and possible impact on pregnancy (she literally carried on writing and stayed silent; it was a horribly intimidating atmosphere). They have offered ovarian drilling for the next step, and have stated it's 'not 100% guaranteed'. They have advised there are more drugs. After both Met and Clomid being sold to me as a 'this'll get you pregnant, for sure' pill, I'm lacking faith.

I'm 39 in six months. Our NHS IVF window closes at 39. I am admittedly overweight, and losing weight has been bloomin' hard all my life, though at least they acknowledge that PCOS has a hand in this.

I feel very much like I'm stuck in a tick-box system where they won't deal with anything until they absolutely have to, and if your clock runs out before they have to, well, phew! they saved some NHS money on that one!

My next appointment is on 1st Feb. Does anyone have any advice on how to move this forward? Are there any better drugs to push for? How do get my progesterone seriously investigated? How do I use their own system against them? I have been told to cry, beg and plead - which is utter cobblers AFAIC.

And in a jovial tone, I'm starting to wonder where the Hippocratic oath is in the Process - and if the entire process is designed by sadists! Lol! Ah, well, if you can't laugh....!

Happy New Year!
A.

Given your age, I think you need to push hard for IVF at your next appointment, so you don't lose the funding.

There are other ovulation drugs - you can inject lower doses of the drugs you take for IVF to get you to ovulate - but in your position I would just make sure I got on the IVF waiting list first and foremost.

AFAIK, progesterone levels 7 days after apparent ov is used to confirm (or not) that ovulation has taken place. Drs don't seem to be interested beyond that.

Have you thought about acupuncture to try to help even up your hormone levels?

I think you need to be clear at your next appointment - and if necessary put it in writing - that whilst you will explore other less invasive treatment avenues first if they have a better chance of success than IVF, you are nevertheless prepared to have IVF and you do not want to lose the chance to have that by the clock running out. That may concentrate minds as to what the best course of action is.

Read the NICE. Guidlelines on patients treatment by the NHS. Pay particular attention to the phrase 'patients should be in a position to make informed choices on treatment.' [google is your friend on this one]

I had a huuuuuge issue with an NHS fertility specialist and found quoting the guidelines back at them moved us forward months in one step - I researched all the consultants at my NHS fertility unit and chose the one who I felt had the best experience and reputation. I basically emailed her secretary outlining why we felt so letdown by her colleague and the system and quoted the guidelines all over the place.

[PCT funding is by hospital not consultant so the NHS don't give a bugger which consultant you see so long as it's at one of their hospitals/clinics]

Her secretary offered us an hour consultation with her a week later and she has been great so far, she transferred my notes to her care and despite our first IVF attempt being abandoned, I feel more confident under her than any of the other numpties we've seen in this process...

I was stuck in NHS system too, took 13months just to do "tests" then I read that I could transfer my NHS funding to private IVF/fertility centres (such as the Care chain) so I did that, got the PCT to approve it (checked the clinic accepted my PCT funding) before I had treatment. 8 weeks from chasing PCT to approve it to seeing a consultant! I made sure I got print out of all my NHS tests to take with me to speed up that initial consultation.

Don't know if you can do that?? Perhaps worth a few phone calls.

what was frustrating for me was the consultant I was under on NHS also worked for a Care satellite clinic so could have told me all of this - I made sure I wasn't under him when I moved to a Care clinic. Other places take NHS funding, it was just Care was nearer to where we lived.

I agree with pushing for IVF at your next appt. I spent over 2 years doing various tests, lap & dye, ovarian drilling, taking clomid etc however our consultant put us on the IVF waiting list early on in the process and we started treatment when I was 38. On a positive note our DS was born just before my 40th bday and I'm now pregnant with our second IVF miracle due in May, a few weeks before my 43rd (eek)
Push for IVF, don't give up hope, and very best of luck.

Thanks for all the pointers.

Scarlettetc. The pointer to NICE was very helpful. Having rarely needed Doctors/hospitals all my life I'm rather ignorant in how to find things out.

Reading the NICE document was very interesting, it's amazing what we/I have not been offered! Time to introduce the NHS to how to run a project (or a conception battle) in my world! I will be writing an Agenda covering the things that will be discussed at the next meeting (thinking of it as an appointment makes me feel on the back foot) with my 'contractor'. Just have to hold my nerve now...

Hoophopes - VERY interesting statement on transfer. Something to investigate for sure.

Thanks for all your pointers/experiences, they are much appreciated.
A.

Get yourself a folder, all the cool IVFers have one

Mine comes to every appt/meeting and has been invaluable when they are being all vague and unhelpful, I just whip out my folder and hey presto, I can usually answer their question

And lists, write lots of lists! I usually have one ongoing on my iPod that I add questions/thoughts to as and when they occur to me.

You go girl! Good luck, don't let them fob you off any more, people say the NHS is free as if that means we should just accept shoddy service, but it isn't, we all pay for it, so we are entitled to be treated properly x

[PS I'm ScarlettsPlant... I've dropped my Christmas Costume

Agree about the folder - I took one to all meetings, asked for print out of every test result to file in it (handy when moving between NHS and private to not have to repeat tests!). Can you find out before your meeting which other providers in your area accept your PCT's funding and contact them in advance? So you do not waste time if this hospital continue their current useless form?

I took 13 months to do all the basic NHS fertility tests, which infuriated me as someone I knew at this time under the same consultant did exactly what we did in 6mths and was offered treatment (if they could get their BMI to NHS guidelines) when there was nothing stopping us starting treatment apart from delays that others didn't seem to be getting between tests and appointments. Oh, when I say under a consultant, it was actually a different registrar each time and when one said "Oh am just doing this for 6mths rotation and I actually don't know when you need those blood tests - and I had to tell him, I realised I had had enough!!!"

All the best.

PCOS is a pita of a condition it really is (speaking as a PCOSer).

Certainly read the NICE guidelines.

Do you attend appts on your own, if at all possible I would attend all future appts with your H/partner. Make and take notes and write down anything you want to ask them well ahead of time.

Unfortunately I was not altogether surprised to see that the clomid did not work out; it is not always the treatment of choice for PCOSers and clomid resistance can be seen. 150mg is the usual maximum dosage for clomid.

I would actually ask the GP to refer you to another subfertility unit in a major city (particularly in the event you are attending some provincial based hospital. It is fair to say that some units are far better than others). A second opinion is warranted along with now seeing a different cons, it is no point in dealing with a consultant you may not be able to talk freely in front of; the three of you have to be able to work as a team.

Injectible drugs is another possible option here as these can be more powerful than clomid alone.

I can understand why they have offered you ovarian diathermy, this treatment can have some success with some PCOS patients and it can kickstart ovulation.
The surgeon will puncture the cystic follicles on the ovaries. If you do consider this surgery ensure that the person who is carrying out the op has a vast level of experience in such surgery; diathermy has a steep learning curve.

IVF and PCOS can be uneasy bedfellows and IVF with PCOS is not itself without risks to you in the form of ovarian hyperstimulation. It is usually not done until all other treatment avenues have been tried.

Arm your own self with knowledge of PCOS and treatments re same, having this and being assertive but polite can do a lot of good. I was told by my cons that I ran a 50% higher risk of miscarrying due to PCOS (my sky high LH levels were implicated and such levels can be a factor in miscarrying). That was something that really shook me at the time.

www.verity-pcos.org.uk may be a helpful website to you.

Would not get too hung up on the progesterone; this is awry anyway because your LH and FSH levels are out of sync due to PCOS. Look at what they are offering and how you are treated each time you are seen. You should be seen by the same team of people each time you visit (I was at the subfertility clinic monthly). Continuity of care too is vitally important.