# Additional NHS funding



## pp1979 (Oct 5, 2013)

Hi, i am looking for information and experiences from anyone who has applied to their CCG for additional funding? Our CCG offers 2 cycles, we have had these, both ending with bleeding 8dpt.  Both blast transfers, none frozen.  I found a template letter by following links from the HFEA website, to send to your local CCG to ask them to follow NICE guidelines and offer me a 3rd.  They replied to say that they couldn't accept a request for funding from a patient, so i went to see my GP who thankfully supports my application and is applying for me.  I wondered if anyone else had DDone this?  Im hoping if i get the funding, it can be used to pay for my cycle with a private consultant.  Not sure how likely that is.  We have had a meeting with him where he pointed out my partner should have had a karyotype and chromosomal test which the nhs didnt do.  He has also put me on DHEA.  The embryologists previously advised only putting one embie back, last cycle we had 2 blasts, but they didn't freeze the other one) but now going forward have recommended 2.  the private consultant also recommended steroids and an endometrial scratch.  I really want the third cycle more than ever as since becoming aware of these options i don't think we gave the last 2 our best shot.  Who knows, if i had started taking DHEA 5 years ago, had the steroids and the scratch and had 2 pur back, i may well not have needed this cycle.  Any thoughts, advice, experiences please?


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## Pudding34 (May 13, 2013)

pp1979

I don't know very much about appealing for additional funding so I can't really help with that but something in your post has struck me.

Were you on progesterone support pessaries?

If so you should not have had early bleeding.

On my first fresh cycle i also had early bleeding and when I undertook further private tests I was advised that this shouldn't have happened if I was absorbing the progesterone from the crinone pessaries that I was on.

I was prescribed gestone injections for my next cycle and I had my three month scan yesterday!

I highly recommend further testing privately if you can afford it as I made so any changes to this cycle it is hard to know what made the difference or if it was a combination of them all!

I wish you the best of luck with your appeal and any future cycles you undertake!

Pudding
X


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## pp1979 (Oct 5, 2013)

First of all Pudding, congratulations  !!! I love a good success story xx 

Thank you for replying.  I was on Cyclogest 400mg rectally twice a day both times?  Xxx


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## Pudding34 (May 13, 2013)

Thank you Hun, it still doesn't feel quite real at times!

I'm not a medical professional so of course you need to ask these questions of your clinic and I've never been on cyclogest but I was told that if you are on any progesterone support and it's being absorbed properly you shouldn't bleed early!

Gestone injections are another option but my NHS clinic wouldnt prescribe it or support it so I had to get it privately which was pricey and the injection itself isn't nice but if it works none of that matters!

Pudding 
X


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## pp1979 (Oct 5, 2013)

Thanks Pudding, all information is really useful at this stage.  Whether we pay or get the funding, i want EVERYTHING this time!! I wonder what the different success rates are between nhs and self funded cycles Xxx


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## robandkaz (Jun 30, 2014)

pp1979 said:


> Thanks Pudding, all information is really useful at this stage. Whether we pay or get the funding, i want EVERYTHING this time!! I wonder what the different success rates are between nhs and self funded cycles Xxx


It may also be worth popping your local Mp a letter as well and ask they also get involved on your behalf and Request a 3rd attempt.
I too would love to know if there is a big rate difference between Private and NHS funded rounds of treatment as it would be good info for some people.


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## donna80 (Jan 3, 2011)

Hi pp1979, 

I appealed for more funding and I won, 
Here's our story, 
We were originally sent for ivf/Icsi due to male factor if, dh sperm could only be retrieved by SSR, so sperm frozen we were on our way with our first and only nhs funded cycle, after 9 days of Simms I didn't respone to the meds and treatment was cancelled, at our review we were told its probley due to my egg count we needed donor eggs, our  consultant done the amh and afc test and said that was it no more nhs treatment I'd even had to pay for a private appointment with him to get my amh and afc results in a few weeks! I knew nothing about donor eggs or why! 
We paid for the private appointment and found out that my amh and afc were really low, I asked why this wasn't tested before our treatment and was told that it should of been, I was sent packing to return when I've got £8.000 and a donor!!  
My mum pushed me to appeal, I was first turned down then I reapplied with the backing or my consultant and I won, (it took about 12 weeks, I'd forgotten about it by the time the phone call from my clinic came) my biggest thing was had they of done the amh and afc tests first they would of known that Ivf would never of worked for us.  We were given 1 deivf cycle and 1 frozen cycle, my consultant then sent my funding to another clinic where I had my treatment, both unfortunately failed, and we are currently saving for a 3rd go, this time I will have steroids, I had the endo scratch for my last cycle and bleed 4 days after transfer, so this time I'm also having the gelstone jabs, 

I don't understand why your clinic didn't change your progesterone support after early bleeding on your first cycle, I would use that as your starting point on grounds for appeal, 
As for  rates between nhs and private treatment I don't know If there would be much difference as ones I was sent to the ivf unit I was treated the same as everyone else while I was cycling,  it was only really the appointment times before treatment that I had to wait for, 
I wish you all the best and good luck with your appeal, 
Donna x


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## staceysm (Nov 18, 2010)

Hi,

I personally think that the protocol used for your NHS cycles seems pretty standard to me.  Obviously by going to a private consultant you can see what additional testing can be done by paying!  I have not known a NHS clinic/hospital to do karyotype/chromosomal testing as routine, but I don't mind being corrected if this is wrong.  

As for DHEA, I don't think the NHS would prescribe this, isn't there pro's and con's on the benefits of this drug?  However I am sure that just recently some NHS clinics have started doing the endometrial scratch, as routine, so that seems a way forward.

I would have been pretty gutted about the other embryo being discarded though and would have really pushed for it to go back.  

I certainly would push for the 3rd funding on the NICE guidelines, you have nothing to lose.  If the clinic you are now at, only has private patients then you may not be able to use that one if you get your third cycle.

Just to add I got a BFP from a NHS cycle and then a private cycle, so can't really comment on whether your Chances increase.

Good luck anyway.

X


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## rory2011 (May 31, 2011)

Pp1979, good luck with your appeal. Which clinics does you're ccg give funding too? In our area when it was a pct, theoretically you could choose between the local centres which they had contracts with. Two of them were " private clinics" ie. not nhs hospital. 

Might be worth seeing if they would transfer the funding to your private doc, if they are happy for them to do  round of ivf.


Good luck. Sadly in our area we only had 1 funded cycle. At that time, the next doer pct funded none, so in someways we were lucky.


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## pp1979 (Oct 5, 2013)

Thanks RobandKaz, and congrats on your BFP xx  great idea about my MP, i will give that a go.

Donna80, thanks so much for letting me know about your funding.  It sounds like my progesterone absorbtion should have been discussed but it was just like they have a process and they stick to it.  I hope you're third go goes well and the additional options will work for you.  My amh is low, have you been recommended to take DHEA?

thank you Stacysm, i was fairly gutted about the lost embie and wont let that happen again.  The consultant i saw works closely with an NHS unit so i am hopeful i will be able to use him.  I hear nothing but good things about him.  Obvs i am not the only one but i really struggle with the whole process emotionally and mentally and i think 3 times is all i can deal with.

Rory2011 i am not sure which clinics ccg covers, we were sent to.the Hewitt Centre each time.


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## robandkaz (Jun 30, 2014)

pp1979 said:


> Thanks RobandKaz, and congrats on your BFP xx great idea about my MP, i will give that a go.
> 
> Donna80, thanks so much for letting me know about your funding. It sounds like my progesterone absorbtion should have been discussed but it was just like they have a process and they stick to it. I hope you're third go goes well and the additional options will work for you. My amh is low, have you been recommended to take DHEA?
> 
> ...


cheers pp And hopefully your luck will be in soon too!!


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## pp1979 (Oct 5, 2013)

Yay!! The CCG has approved our funding for a third cycle!!  :


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## rory2011 (May 31, 2011)

Fab news, good luck xx


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## pp1979 (Oct 5, 2013)

Thank you Rory, i want everything on offer this time xxx


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## Tiffin (Jan 22, 2015)

This is brilliant, so pleased you've got your third cycle funded.   Do you have a link to the letter template please? We only get one cycle funded in our area, so would be handy to have, if needed. Thanks


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## Pudding34 (May 13, 2013)

That is wonderful news!

I wish you every luck in the world for your third cycle!

Pudding
X


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## mrs_X (Aug 18, 2014)

pp1979 said:


> Hi, i am looking for information and experiences from anyone who has applied to their CCG for additional funding? Our CCG offers 2 cycles, we have had these, both ending with bleeding 8dpt. Both blast transfers, none frozen. I found a template letter by following links from the HFEA website, to send to your local CCG to ask them to follow NICE guidelines and offer me a 3rd. They replied to say that they couldn't accept a request for funding from a patient, so i went to see my GP who thankfully supports my application and is applying for me. I wondered if anyone else had DDone this? Im hoping if i get the funding, it can be used to pay for my cycle with a private consultant. Not sure how likely that is. We have had a meeting with him where he pointed out my partner should have had a karyotype and chromosomal test which the nhs didnt do. He has also put me on DHEA. The embryologists previously advised only putting one embie back, last cycle we had 2 blasts, but they didn't freeze the other one) but now going forward have recommended 2. the private consultant also recommended steroids and an endometrial scratch. I really want the third cycle more than ever as since becoming aware of these options i don't think we gave the last 2 our best shot. Who knows, if i had started taking DHEA 5 years ago, had the steroids and the scratch and had 2 pur back, i may well not have needed this cycle. Any thoughts, advice, experiences please?


Hi PP1979,

Good luck in getting the funding, i hope you're a winner

Could you possibly send me a link to the templates etc?


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## pp1979 (Oct 5, 2013)

Thankd Tiffin, pudding and Mrs X.  Im not sure if it varies from area to area but my CCG will not consider requests from funding direct from patients, so the letters did not assist at all, in fact they cost me 6 weeks as that's how long it took them to reply to the letter to tell me that.  I got the funding because my GP supported my case and applied for individual exceptional funding for me which the CCG approved.  I believe it helped that i had a letter from a private consultant with suggestions for another cycle, which my GP sent with my application.  This was helpful if only a positive viewpoint for us, as at my follow up appointment at my local hospital after my second failed cycle, they more or less said go away and speak to social services about adoption!! Everyone should get NICE guidelines in my opinion, happy to help anyone that is not getting them.  Xxxx


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## mrs_X (Aug 18, 2014)

We only get one cycle with our ccg. Hubby & I have been trying for 6 years but we held off for a few years as my sister passed away and i was raising her children until they were old enough to set off of their own paths. So we've started ivf pretty late at 34 & 35 and I'm worrying that one cycle may not be enough. We haven't really got time on our sides to save for a cycle either


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## pp1979 (Oct 5, 2013)

Hi Mrs X, i was 34 when i had my first cycle, now 36.  NICE guidelines are that childless couples, under 40 with normal BMI should get 3 cycles.  Hopefully you will only need 1 cycle, however if you did need further cycles then i would definitely see your gp.  Go armed with a copy of the nice guidelines and your local policy.  If you email your CCG they can email a copy.  I truly hope this won't be necessary, lots of people only need 1!! Please keep me posted, sounds like you have had a rough time, i hope that changes and wish you all the luck in the world with your cycle xxxx


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## pp1979 (Oct 5, 2013)

The CCG have now authorised the consultant i wanted to perform our next treatment.  He has such a great reputation and i am so grateful for this opportunity.  I hope i can remain this positive throughout, we all know how tough this is.  I know the NHS can't pay for everything i want but i am hoping to use my savings to supplement this cycle so i can have steroids, endometrial scratch and possibly IMSI.  Does anyone have any knowledge of these things? Also are the pessaries the only way of getting Progesterone.  Im already having reflexology and have booked for reiki to try and reduce any anxiety.  I had reflex my previous cycles but may try acupuncture this time. Xxx


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## Amoeba1705 (Sep 1, 2014)

I am about to embark on my third nhs cycle (my ccg give you 3) and am getting steroids and the scratch as part of my treatment, the only 'top up' I could have is embryo glue at around £250 but my consultant doesn't rate it so not going to bother with it, and 2 of my friends have cycled at same clinic and are both expecting (1is 32weeks and the other almost 12weeks) and neither had the glue.


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## donna80 (Jan 3, 2011)

Hi pp. 
congrats on the extra funding, and that you have the consultant you wanted, 

I had the scrach with my FET, I did ask for it and said I know I'd have to pay for it, I was never billed and payment was never mentioned again, 

Re the meds and steroids If your consultant has said they are needed them they will be funded, progesterone can be given in injection form (I've heard it painful)and I was led to believe this is always used on the next cycle if you had a bleed before test day, I don't know anything about IMSI, 

When are you due to start cycling? 

Good luck   For you
Donna x


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## pp1979 (Oct 5, 2013)

Thanks Amoeba1705, my clinic (the hewitt centre) i read recently use the glue as standard, although i didn't know at the time so i need to check.  Thanks for the information so maybe i can get the steroids and scratch without having to pay extra.  Did you have those previously?

Thank you Donna, good news about the scratc and meds, thank you.

I bled 8dpt both times so i will ask about injection, willing to do anything tbh!

We have our appointment on 7th so will know timescales then hopefully.  We move house in June which makes me a bit nervous but i think im not going to delay anything and just go with it.  It took 8 months to get the funding and this authorisation.  I think even though moving is stressful i can put sruff in place to relax.  Im never going to be completely calm because ive had 2 failed cycles.

Xxxxx


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