# Topping up NHS funding with private treatment



## FF1606 (May 5, 2014)

Hey, I've recently undergone an unsuccessful fresh IVF round  and will be undergoing a FET in Feb/Mar.

I'm under the care of Bourn Hall and was initially told by the doctor that I could personally pay for immunity testing / intralipids (if required) as a top up to my IVF which is being funded through the NHS.

However, when I called to say I'd like to go ahead with this one of the nurses informed me that the NHS prevent you from doing this.

I find this so frustrating as Bourn Hall won't offer any further investigations into my implantation failure and will continue providing me with the same treatment which could be totally ineffective if there is an underlying problem.

I wondered if anyone else has experienced anything similar and can offer advice?

In the meantime I've made an appointment with the ARGC for after my FET in case it's unsuccessful to see if they can offer a solution.

Thanks


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## Guest (Jan 4, 2015)

Hi sorry to hear that  
I was also told I couldn't pay for anything extra with my NHS funded cycle last year or my FET this year. It seems unfair   But sending you good luck wishes that your FET will work out & you won't need to fork out for anything else   If I have to do another fresh cycle this year I'll be wanting to pay extra for genetic screening of embryos to prevent another MC, but that might not be do relevant for you depending upon your age. I'm sure otgers here can give you more info re tx etc. All the best xx


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## oscar13 (Dec 25, 2014)

Hi I am with bourn too and believe i have immune issues....they advised me that I can pay for extra treatment privately just not at bourn.hall as they are our nhs hospital. They recommended Dr Gorgy at FGA (lots on here about him) who apparently will offer immunes testing/treatment alongside the clini where you are having treatment. The other thing to try is health at home if your GP will give you a private prescription (i am in the process of trying this first) but will turn to Dr Gorgy if this fails.

I hope this helps? Please let me know how you get on x


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## FF1606 (May 5, 2014)

Thanks both for your responses  

Oscar13 I asked Bourn Hall exactly that, whether I could pay privately elsewhere and was told yes by one nurse then no by another? 

I think I may speak to them again about it. I just know deep down that I will waste all of my free rounds if they don't offer me any other investigations. It seems ridiculous to waste NHS money if we as patients are prepared to stump up the cost of having the immunity testing done ourselves.

At every stage there are hurdles to jump over...it never gets any easier.


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## Cloudy (Jan 26, 2012)

I know it's frustrating - it's the same with our CCG.

The best thing to do might be to contact the CCG directly and ask if there is anything in their policy that would prevent you going to have tests had get prescriptions to "top-up" your treatment from another provider (I know Dr Gorgy does this for people) - after all, the clinic administer the policy, they don't write it and aren't always experts.

Is it your first transfer? If so it's not unusual to not do any further testing at this stage - my clinic dong advise further tests until 2 or 3 failed attempts (depending on personal circumstances).

Good luck xxx


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## mross (Jul 10, 2012)

I find that so frustrating. Can't the clinic turn a blind eye to it? Not sure if it's the same thing but our clinic told us all about the embryo glue but wasn't covered by oct funding so we just paid separately for it and it just was a non issue. I hope you are able to get this done ok xx


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## Lilypink (Oct 8, 2013)

Hi 
Iv had 1 fresh & 1 frozen cycle with nhs and about to start my 2nd frozen next month. I went to see a private consultant whilst waiting for follow up, and they recommend Intralipid, steriods, gestone & clexane as well as endo scratch as iv got top quality embreyos & 100% fertilisation they feel it's implantation failure. 
The private consultant wrote a letter to nhs consultant explaining advised protocol & my nhs consultant had agreed to prescribe me the steroids clexane & gestone & I have to pay for scratch & intalipids myself. 
Hope this helps, so frustrating that some nhs consultants still won't open their eyes to possible immunes issues xx


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## oscar13 (Dec 25, 2014)

Hey ff1606, just wondering how you are getting on? Did you have any luck with bourn? 
I have just arranged a consultation with Dr G at FGA to pay privately for immunes treatment. Very quick appointments available!


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## Hopefulshell (Mar 14, 2013)

Hi ladies 

Oscar13 - I'm with Bourn hall cambridge 
and I phoned patient mgt this afternoon
and was advised that as an nhs patient I 
wasn't allowed to see Dr Gorgy?! Can I ask
who you spoke to at Bourn please and I'll 
try again! I definitely think I've got an immune
issue and don't want to go through tx again
knowing it won't work.

It's so frustrating!! 

X


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## oscar13 (Dec 25, 2014)

Really?! This is so confusing.....
I'm not sure the name of the nurse I spoke to, it was just whoever  answered the phone.....maybe they all have different opinions or some of them forget to stick to the official line?!? Or maybe i depends on which area you are referred from?

If they are being difficult do you have to let them know? Can you not just investigate issues and tackle the issue of telling them if something is diagnosed? 

Can I ask what has happened with your cycles so far and what bourn has recommended for you?


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## Hopefulshell (Mar 14, 2013)

Thanks  yes it really is all so baffling!
The lady in patient mgt said no but she
said to speak to one of the nurses to check?!
I asked in the past and paid to have a hysto
and scratch at Bourn and that was permitted.
The fact the nurse you spoke to actually
recommended Dr g suggests it's ok to do so
and that it's something she's said to others 
too. As the other lady said (sorry on phone so
can't scroll back for your name!) maybe it's 
ok to have private tests outside Bourn but not
to pay to have their tests? 

My protocols have all been different tbh with
the last one yielding the best quality embryos. 
I had a short agonist protocol (no hcg trigger
shot as prone to ohss) and this got us three
top quality frosties (and a chemical pregnancy).
I did also follow a v strict diet for six months 
prior tho so not sure if that helped too? It's 
my last funded cycle next time and as I'm getting
on a bit and really struggling to keep putting
myself through the endless disappointment I 
really want to do all I can to make it work. I'll 
phone again tomorrow and ask the nursing team
as they seem better informed than patient mgt!

X


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## oscar13 (Dec 25, 2014)

Yes we are the same age and totally understand the frustration! It seems crazy stopping people paying for extras out of their own money if it can help. Have bourn recommended steroids or clexane for you? Have they indicated that they think it could be immunes?  

I have other health issues that indicate I could suffer from immunes issues so that may be why he was recommended? If I had been a private patient there I am certain they would have prescribed intralipids.

Sorry to be nosey but do you mind me asking what diet you followed? 
Wishing you the very best of luck!


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## Hopefulshell (Mar 14, 2013)

You aren't being nosey at all  we're all
in the same boat trying to find the answers 
I actually saw a fertility nutritionist in London
who prescribed me a diet based on age, pcos,
Bmi etc. In essence it was what is termed a 
clean diet - lots on google about them which I
found after I'd paid to see her! Lots of oily fish,
nuts, seeds, green leafy veg, eggs, white meat,
pulses etc. No white bread, rice, caffeine, bad 
sugars eg chocolate, cakes, alcohol etc. Her advice
to me was eat like a cave woman! Ie stay away 
from anything tinned, packaged or indeed anything
that can't be grown or produced naturally. It was 
hard at first but I think it helped and I tried out
different recipes to make it a bit more interesting!
I pretty much cut out gluten for six months and
lived on green tea! Dh lost a stone (I lost a pound!!)
It felt worth the hard work at EC ... 

After my first mc bh put it down to bad luck which
I was willing to accept. After four failures and a chemical
I wanted to find out more. After reading the fga thread 
on here and reading about Dr Beer's ideas about immune
issues and tx failure so much of it rang true for me. I've
never been prescribed clexane etc but will ask at my
follow up. I know bh will treat empirically but I don't want
to take things 'just in case'. I want to know everything that's
wrong with me!! 

Sorry about the age comment  I just feel like the process has
aged me rather than the passing of time! I've never felt old 
before I kept failing!! 

Best of luck to you too x


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## oscar13 (Dec 25, 2014)

This process has made me far more conscious of my age as I now feel I really need to hurry....I would find it less stressful I think if I was in my early 30s. 

Your diet sounds very similar to how I have been trying to eat sicce the new year.

I've always suffered with allergic reactions  and sensitivities to every day things and was told in my teens I had a hypersensitive immune system. I don't know what that means for me fertility wise but aince reasing these forums it is something I would like tested before I waste too much time.


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## oscar13 (Dec 25, 2014)

Hi...just wondered if you had better luck with bourn?


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## oscar13 (Dec 25, 2014)

Has anyone been contacted by bourn to say nhs policy has changed??


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## LittleStampede (Jul 1, 2014)

Hi Oscar,

What do you mean NHS policy has changed? We are awaiting referral to them (Cambridgeshire) so your post has panicked me!

x


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## oscar13 (Dec 25, 2014)

Sorry that post was meant for the ladies who wanted to add extra treatment to their NHS cycle! Originally if you were funded previously you weren't allowed to pay for extras like intralipids but now you are.....


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## Cloudy (Jan 26, 2012)

As far as I'm aware it's not a national policy change, it's more something that more CCGs are starting to do. Some areas have allowed top-ups for a while now, other areas are starting to allow it, and sadly some areas are still not allowing it.

Little Stampede - if you aren't sure of your local CCGs policy regarding treatments/top-ups then it's worth contacting them directly. They often have the details on the Internet, if not they should respond quite promptly to any enquiries.

Xxx


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## LittleStampede (Jul 1, 2014)

Ah, phew, thanks for clarifying - had me panicking then!! We're still in limbo land and haven't been officially referred to Bourn Hall yet. Good that we have options to top up treatment there though - hubby and I are of the same view that we'll do everything we can to be parents. Apparently our next appointment letter should be with us early next week, which should be (if hubby has lost enough weight) when we get referred. Fingers crossed - just want to get started!


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## oscar13 (Dec 25, 2014)

Sorry for causing distress! The staff at Bourn are lovely, very easy to talk to and always answer all my questions without complaint! You will be well treated there. Good luck x


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## LittleStampede (Jul 1, 2014)

No problem - you know what IF does to women! Glad to hear positive reports from Bourn. We actually got ahead of ourselves and went for an open day there and it was really nice, felt really relaxed (and yummy cakes). Praying so hard that we get on our way soon, and that everyone gets the babies they deserve xx


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