Letters received, a decision made

This week a letter arrived back from the Member of Parliament (MP):

Monday, 21 March 2011


Dear [Kaitake] and [Hubby]


Thank you for the copy of correspondence between yourself and [One of the authors of the report: Access to Infertility Services: development of priority criteria: a consultation document. Simply referred to as "Author" from now on]. It was interesting to read and after the meeting in my office, it became clear that the single issue stopping funding at this point is when the three year time-frame officially commences for a couple who have one partner sterilised.


[The Author's] comments around the duration of infertility and balance of fairness they seek to manage are important considerations.


Following up from your recent visit and the information you have previously provided, I have written to the Minister of Health and received a reply last week from the Hon Tony Ryall, which I enclose to you.


The Minister's third paragraph mentions that a request for a second opinion on the review of your CPAC score can be made to the [local health board]. [The Author's] opinion is that the CPAC score was correct according to the criteria; however seeking a further review and if possible, a fresh assessment which takes into consideration [Kaitake's] diabetic condition, may be worthy of further consideration.


I know that IVF treatment is expensive. Failing public funding, consideration around personal funding is something you could consider if the waiting period is too harrowing for you. These are deeply personal and highly important issues and I wish you all the very best in approaching the [local health board] for a review.


If we can be of any further assistance please don't hesitate to contact my office.


Kind regards,
[MP]

and here is the letter from the Minister of Health that the was mentioned:

14 Mar 2011


Dear [MP],


Thank you for your email of 25 February 2011 on behalf of your constituent what has asked if her application for publicly funded IVF treatment can be reviewed.


Your constituent will have been assessed by a clinician using the clinical priority access criteria (CPAC) tool. CPAC is a decision-making tool to assess a candidate's suitability for publicly funded fertility treatment and takes into account a variety of factors such as the candidate's age and Follicule Stimulating Hormone level. Decision on who qualifies for publicly funded IVF treatment are made by clinicians.


Ministry of Health officials advise me that a second opinion to review your constituents's CPAC score can be requested from [the local health board]. Your constituent can contact the Chief Executive of [the local health board] by writing to:


[contact details enclosed]


Your sincerely


Hon Tony Ryall
Minister of Health

There are just so many things wrong with these letters it's unbelievable. The MP suggest we pay for fertility treatment ourselves (well, duh! of course we would if we could! we're not all BMW owners). I don't particularly feel like divulging all our financial concerns to him, I mean, I think I've been pretty honest so far. Told him about our fertility problems for godsake.

Then there is the Minister of Health politely passing-the-buck back to the local health board. Who don't offer fertility services. Oh, yeah, and I consider it pretty insulting the way he has just parroted off some crap about FSH... there is nothing wrong with my FSH. Get with the picture and stop telling me useless pieces of information. It's so reassuring to know that when the clinic gets it wrong, you can't actually get results from the government, because "clinicians make the decisions". And who monitors them, eh??

And I especially like the way that no one has taken notice of the fact that there is actually more than one issue for us here:

1. in our case, a 3 year wait is a penalty. We are being penalised for my husband having done the socially upstanding thing of having a vasectomy in his previous relationship. There is no medical reason for a 3 year wait (with unexplained infertility, waiting 3 years = 80% chance that the couple will have conceived naturally). In fact, for us it increases the chance of my having a child with Down's syndrome, or having complications, or dying in childbirth. (we will be eligible for public funding in September 2012, I will have clicked over 30yrs. We will still have an 18 month waiting list after that. The earliest I could become a Mum is 2014 or 2015, it may even be 2016. I better bloody have my flying car by then, cos that's the future.)
2. the incredibly bad and uncaring way in which the Hamilton FA clinic has treated us, like we are second rate citizens
3. the way the CPAC form is engineered against us, specifically designed to deny us the right to have a family. It is discriminatory. The points are not deducted for having a sterilisation, or something logical like that, which I could understand. No, the 30 (!) points we lost were because of a catch-22 situation where the have to engineer a "when did your infertility begin?" date, so they base it on the first time you saw a doctor for infertility. This totally discounts 7 years of my life where I've wished for a child.
4. the CPAC form does not take the male-partner's age into account, only the female's. This is unfair and discriminatory. In our case it especially important as my husband and I have a significant age difference.
5. How the Government did not accept the recommendations of the advisory panel, to set the CPAC threshold at 55 (which would mean we qualify) and instead set it at 65. Money. Always money. And since infertility in basically an invisible disease, there is no massive groundswell of support, say like for breast cancer, or diabetes.
6. the way that the GP and then the OB/GYN both took our money and did loads of invasive tests, only to refer us to the fertility clinic at the very last minute, wasting valuable time. NZ patients are actually allowed to self-refer to fertility clinics. No one told us.
7. The fertility clinic for insisting that I have an unnecessary operation, and the stupid OB/GYN for taking plenty of public health money to perform the operation.
8. that there is no regulating body where I can take a complaint regarding the paperwork side of the fertility industry.
9. the sheer injustice of the situation, how bloody unfair and illogical it is, how it's put my life on hold, how it invades my every waking moment :(

So Hubby and I have made a decision. We will make one last attempt with the letter-writing and shit. And then leave it. Because, honestly, no-one cares. I've been crying every night this week and it doesn't make anything better. I can write emails and letters to everyone until I'm blue in the face. But nothing is working. No one will help. Or no one can help. It's useless. But I will try one last time.

Please excuse my foul language. I am in a bad way.

I sent the Hamilton FA Clinic an email...

...take this, you b*tch!

Hi [Clinic Manager Lady],

Thank you for reviewing our case. As you can guess, this is not the result we were hoping for.

When we met with Dr R and were scored for access to funding for fertility treatment, I asked for a copy of the form she used to work out our score. She refused to give me a copy. I believe that this is not in accordance with my rights as a patient.

I am now requesting that you send me a copy of the CPAC form used at our consultation, and all other case notes you have for us. ALL case notes please. I am interested to know how we came to score a 60 on the CPAC form, and how Dr R came to that particular number, as she could not explain it very well at our consult.

Please post me a copy, or scan and email me a copy of all case notes.

My address is...

My email address is...

Furthermore, I would like to let you know that I do not feel you have taken my concerns into account or even given me a chance to explain them properly. I would like to submit a formal complaint. I shall send this to you via email over the coming week, as time permits.

I look forward to hearing from you,

Regards,

[Kaitake]

Oh, yeah, and I cc'd it to my husband, the MP, my diabetes endocrinologist (who used to be a fertility endo back in the USA), and the lovely lady at the Health and Diasability Commission who has offered to help.

So yeah, take that, you sucky Hamilton Clinic Fertility Associates Manager!!

p.s. I'm removing comment moderation, as a trial, because I figure you're all lovely people and I would like to make things easier for you :) Let me know if you like!

p.p.s. spent a lovely day today with hubby (it's a Saturday) shopping this morning, having lunch with my in-laws, walking in the bush, and then hubby cooked a fantastic vege mousaka! Nom!

A positive meeting with my local MP

I was pretty nervous. I joked to myself that my nerve felt worse than when I was going to my last job interview! haha :P I deliberately parked a couple of blocks away from the MP's (Member of Parliament) office so I would have time to walk and get rid of some of my nervous energy. It worked pretty well, and by the time I got to the offices, I was feeling calm and confident.

The MP (let's call him J) had done his homework; he knew that I was a tutor, and asked how "school" was. So I was put instantly at ease as we chatted about the field trip I was involved with this morning.

We went into a shiny new meeting room, with a round table to sit at - nice, since I was expecting a desk. There was plenty of room to spread out my documents, and since J had a notepad to take notes, I got one out of my satchel too. I felt like it was a very comfortable and respectful meeting :)

I showed him the CPAC form, which I had filled out how I believe it should have been in the first place, and he checked through it carefully. He mentioned that he had re-read my letter several times. The letter turned out to be a good idea, because I didn't have to waste time telling all my story, we could just concentrate on talking about what was wrong, why it went wrong, and how to fix it.

We discussed the maternal instinct and how you can't just switch it off. How his father remarried and had his (J's) brother when the father was 55 - so I felt he was understanding and compassionate to our case with mine and hubby's age difference (did you follow that?). We talked about health funding, and I mentioned that infertility is recognized as a disease by the WHO. I said how I felt that if it was just my husband being scored, then maybe yes, it would be fair, but for me, who has never had a child, it's not fair, thus it's not fair for us as a couple to be treated like this. He wanted to make sure that he understood that we did not have unexplained infertility, and asked it waiting 3 years would help out case. He could easily see that it wouldn't! I felt reassured to see he also could not see the logic in it all. I made sure to say how we suspected the Hamilton Clinic of Fertility Associates had artificially lowered our score, andI felt they were now giving our complaint the brush-off. I must admit to taking only minimal notes, and I was doing a lot of the talking, so I don't have a verbatim record of our conversation.

But...

then he asked "how would you like me to help you?" How good is that? I had a copy of my letter, and I said "well, I wrote a wishlist in my letter for you!" I said that ideally, we would like to be treated fairly and that to us, that would mean having our scored changed from the 60 (fail + false) to the 68 (pass + how it should be!!), as well as having our time on the waiting list back-dated to the point of our consult with the fertility specialist, since that is when all this palava started. I also made sure to say that it felt like I might as well ask Santa, since I knew that he probably couldn't just wave a magic wand and make that happen - oh, and for us to be put on the waiting list, someone else might have to be bumped back or off it! Awful!

He thought for a minute, then said he would ring the Ministry of Health, to ask for their advice on our next steps.

I said I would contact the Hamilton Clinic again and this time, ask for a copy of my CPAC form, my ACTUAL form, which they refused to give me a copy of at the consult. As a patient, I'm legally entitled to see it. I can't wait to see where they think they took the 8 points! Honestly, even using all sorts of permutation on the form, I could not get it to spit out a 60! :S

He also said that, if I was comfortable, he would like it if I could keep him up-to-date with anything relevant to our case. So now I'm on a first-name + email basis with my MP. Cool.

I must say I left the office feeling quite light and positive. I never expected it to go so well.

- - - - - -

My apologies if this whole post is a bit shoddily written. I pretty tired. Apart from the nerves I had before my meeting, I had a full day at work too!

As soon as I got into work one of my colleagues (the one who called his father in Christchurch and got cut off) asked if I could help out with transporting students to a field trip later - he had booked an institute van, but then extra students had enrolled into his class that morning (that's art students for you!) but it wasn't enough students worth renting a bus for. So I drove 3 students in my personal car, which was nice, as it meant I was able to go with one of the new students, who I'd just transferred into the class when she turned up at the office nearly in tears because she was afraid the level of course she had chosen was too hard. I got her fixed up and finished all the change of programme paperwork, then introduced her to her new classmates and travelled with them to the field trip. We visited 3 galleries in quick succession. I found a simply gorgeous bird bath by a local ceramics artist that will be fantastic in our back garden. Oh! I'm so naughty, it was a bit expensive. I pick it up tomorrow and will post pictures for you to see :)

The stress of the day made me go quite high, but I was super-worried about over-bolusing, especially when I was driving students around the place.

After lunch, and the meeting with the MP, I went back to work and did a couple of hours research into eBooks (I'm helping out the e-learning department here at work) and had a couple of intense discussions with the colleague on the other side of my desk... whew!

I picked up hubby on the way home from work (his kidney stones are better, for now, he passed a MASSIVE one! Blood tests were pretty good but showed slightly raised blood pressure so we are modifying our diet a bit and hubby is increasing his exercise by walking to work which is cool. He also had a CT scan, but hasn't yet got the results back) and then we went to see my Mum and have a cuppa tea. Little sister turned up too, which is cool as sometimes I don't get to see her as often as I'd like.

I am sooooooooo glad it's the weekend!