# Letter to Health Minister



## Guest (Oct 21, 2009)

Morning ladies, hope you are all well. I just thought I would pop on and let you know that I have sent a very long letter to the health minister about NHS funding for fertility treatment in NI. (probably so long that he will have retired before he finishes reading it  )
I also sent a copy of it to my MLA/MP. Really not holding out much hope that it will have any impact but......if other people were to do the same he might get fed up listening to us winging and give us more funding.

The main points that I made were the delay between initial appts and getting onto the waiting list, the problems with admin in RFC ( admittedly they have gotten a bit better),the negative impact that amalgamating the waiting lists had and of course the fact that we only get 1 cycle funded by NHS. I said that we were UK citizens but were discriminated against simply because of geography.

Anyway, you never know, he might take a bit of notice.

Will let you know if I get a response.

BB

PS, anybody got their golden ticket yet for Dec cycle? I'm panicing about this postal strike incase my letter goes missing.


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## wee emma (Nov 15, 2007)

could i suggest Bumblebee, that you show us what you wrote and we could all then write the same thing?

sort of bombard his letterbox


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## Guest (Oct 22, 2009)

Hope nothing I have written offends anyone.

*Dear Mr McGimpsey,

I have decided to write this letter to try and highlight to you the personal experiences that many couples in Northern Ireland are having with regards to NHS funded fertility treatment.

My husband and I made the choice to delay having a family after getting married as we wanted to ensure that we were financially secure and had well established careers so that we could provide as good a start to a child's life as possible.

Three years ago we started trying for a baby, unfortunately, a pre-existing medical condition has had a severe impact on our ability to conceive naturally. My consultant referred us to the Regional Fertility Centre (RFC) and in June 2008 we were placed on the waiting list for IVF treatment. Our initial appointment was in February 2008 but we had to wait for test results before actually being put onto the waiting list, a gap of 4 months. At that stage the waiting lists were being done by health board regions.

From June 2008 onwards we have kept in regular contact with the RFC to see how far up the waiting list we were moving and eventually in February of this year we were told that we had nearly reached the top of the list and to expect a letter of treatment offer with 6 weeks. Needless to say we were delighted. However, the letter didn't arrive and after a further phone call I was advised that the waiting lists were no longer being done by health board region and that the lists had been amalgamated, resulting in us being moved back down the list. I was told that it was unlikely that I would receive treatment in 2009, and would probably be early 2010, nearly 2 years after our first consultation. You can imagine we were devastated, frustrated and angry. To some people it may only be another few months, but to couples who are dealing with the impact of infertility, months can seem like years.

It was at this stage that we decided to opt for private self funded treatment with Origin, at the same time remaining on the NHS waiting list. We started treatment with Origin in June 2009 resulting in a pregnancy. Ironically we received a letter of offer from RFC in the same week that we found out I was pregnant and we were frozen at the top of the NHS list. Unfortunately, I suffered a miscarriage at 12 weeks and we now find ourselves waiting to start the rollercoaster all over again.

Whilst I appreciate that you allocated extra funding for 200 cycles of treatment this year and have made a commitment that nobody should have to wait more than 12 months for treatment, this seems like a drop in the ocean compared to what is needed. The extra funding allocated was beneficial to those within the 200, unfortunately, it did result in a huge backlog in the RFC to those people not in the 200, meaning that some people had to wait even longer.

•	I empathise with you in your daily defence of the health budget and that you are facing even more cut backs, however if just 1% of the cost of treating alcohol related illnesses was allocated to fertility treatment, I estimate that would allow approximately 215 additional IVF cycles per year. If this 1% was also taken from the budgets for smoking, drug abuse and obesity related conditions it would have a huge impact on waiting lists and the number of cycles offered in Northern Ireland. In parts of England and Scotland primary care trusts fund up to 3 cycles and I believe in Scotland they are considering increasing this to 5. It is obvious that couples in Northern Ireland are at a huge disadvantage simply because of geography, we are residents of the UK just the same as people who live in Glasgow or Manchester.

•	Given the success rates of IVF, realistically the 1 NHS cycle that patients receive in Northern Ireland is unlikely to result in a live birth. I understand that an increase in the number of NHS cycles offered would have a huge impact on budget restrictions, but this also has to be weighed up against the cost to the health service of ante natal care for high risk pregnancies such as "older" mums who have been on waiting lists for years and multiple pregnancies which are often a result of IVF. If patients new that their NHS cycle wasn't their only chance of a pregnancy they might be more receptive to having single embryo transfer.

•	Couples in Northern Ireland who want to have private treatment within Northern Ireland have only 1 clinic to go to other than RFC, thus resulting in this clinic being able to charge more than private fertility clinics in England and Scotland. This clinic now has a waiting list of 4-6 months, and as the self funded lists in RFC have been static for some time now infertile couples in Northern Ireland have nowhere to go to.

Obviously the ideal would be to increase the number of funded cycles to be on a par with the rest of the UK, but an alternative would be to offer 1 fully funded cycle (resulting in a live birth), a 2nd part funded cycle where the patient would make a contribution towards the cost of the drugs and a 3rd cycle were the patient would pay for treatment but the NHS would fund the cost of the drugs. At the minute a cycle is considered to be from when female patient starts taking the drugs, regardless of the outcome. So many things can go wrong along the treatment cycle, failed stimulation, failed fertilisation, no pregnancy achieved or pregnancy achieved but resulting in a miscarriage. All of these should be considered a failed cycle and any patient that falls into this category should qualify for another fully funded cycle.

The stress, anxiety and devastation that infertility causes cannot be put into words and I would urge you to give this matter your urgent attention and would welcome your comments.*


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## wee emma (Nov 15, 2007)

thanks i'll send it too  

fingers crossed.


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## jellybaba (Oct 29, 2008)

wow Bumble! you go girl! I couldnlt have said it any better myself.

I will get on the ball a draft up a letter of my own today.

Did you post it to him or e-mail it?


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## bump14 (Nov 17, 2008)

Bumble, thank you so much for this.  I am not on the IVF waiting list, but the ov induction one, but have had similar problems, and will certainly get a copy of this sent, perhaps with the addition of a wee bit about the other fertility lists, as certainly for most couples the rollercoaster appears to involve a few different lists to wait on along the way - all adding to the total wait.
Thanks loads


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## Ladyhex (Sep 6, 2008)

girls in work at the mo

Can i just add that "we here in NI DONT even get a full cycle " in england and scotland they get a full fresh and FET funded by the NHS.  We get to EC and ET and if it results in a BPF well and good if it doesnt it just stops there.  

If we have a failed fresh cycle, we should get FET in are NHS cycle. 

A quick one form me (hope it reads right ) lol    
Talk soon


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## wee emma (Nov 15, 2007)

sorry ladyhex but could you explain the abbreviations for me please, so that i can put that in my letter? thankyou.


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## Ladyhex (Sep 6, 2008)

Egg collection 
Egg transfer
northern ireland 
frozen embryo transfer
Big Fat positive 

hope this helps emma 

LX xx


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## bump14 (Nov 17, 2008)

Hiya folks,
Does anyone have an address to send these letters to?
Thanks,
bump


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