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How to appeal/fight for NHS funding for your IVF

Just thought I would write down what I have done so far to launch an appeal for the IVF treatment we qualify for. Not for one minute do I think this is comprehensive or a guideline. I hoped it might save a little time for anyone else who is sadly in the same position. I will update the thread if we are successful. Stressful enough let alone having to fight the NHS.

What we should be entitled to:
PCT govern what GPs and hospitals do in each particular area, in terms of funding and prescribing etc. Head of the PCT is the Chief Executive.

The National Institute for Clinical Excellence (NICE) are a government body which make recommendations on what treatments/medications should be available and funded by the NHS.

Criteria for Scotland and Wales may be different as local NHS arrangements are vary.

NICE recommend For IVF if you have a BMI between 19-30 and are aged 23-39, some restrictions are made on smokers and couples with existing children you should be offered up to three cycles of stimulated IVF.
Some authorities also state if you have had private IVF treatment that may have preclude you from funding. Not sure if this is enforceable but good idea to check as it may alter your strategy

Link to show how infertility testing and treatment should proceed according to NICE:

Each Primary Healthcare Trust (PCT) carry out these recommendations and make sure treatments etc are available.

What is currently happening (post code lottery)
Practically about t2/3rds of health authorities offer one cycle but some restrict the age range further than guidelines etc or do not offer IVF. The postcode lottery indeed!!!
Link to provision of IVF in 2007 most recent report for all PCTs

It is a good time to appeal as Dawn Primarolo has been pushing the idea that IVF provision should meet NICE guidelines country wide: Two newspaper articles below.

Letter from Dawn Primarolo to PCTs

Process of my appeal so far
If have been referred for IVF and meet the guidelines but have been denied treatment by my PCT. I do everything in writing so much less stressful than the phone and you have evidence of everything from then on'

If you are not sure who your PCT is
Google your PCT website and look on the about us tab (or similar) should be a list of board members and contact details. Look for the chief executive

I have written a letter to the Chief Executive of my PCT setting out ....

why we qualify for IVF briefly not too much medical detail just that we have been referred due to documented medical conditions

the date we commenced testing for infertility

duration of infertility

stating the we meet NICE guidelines for BMI, age, non smoking & no existing children

Incorporating the phrase that the PCT operates a postcode lottery for treatment.

Asking that we will be provided with the IVF cycle which we qualify for and if the PCT cannot provide this would they provide a written reply containing their final decision in this matter. Adding that this will release you to take your complaint to the Healthcare Ombudsman and your MP.

Follow up the letter if you haven't heard within 10 working days as they are required to acknowledge your letter and make a plan to answer your complaint.

It is the ombudsman that will handle the complaint from here on if your PCT deny you treatment but we are not yet at that stage.

Writing to you MP cannot harm your case
Mine will be passing on the information that I get to the Health Minister.

Other useful things:

The freedom of information act 2000, allows us to obtain data etc from the PCT.
I sent the following email to my PCT. They have to provide you the data within 20 working days or be in breech of the act.
Dear Sir / Madam

Under the auspices of the Freedom of Information act I would like to request information regarding NHS funded IVF treatment in xx PCT

Can you give the criteria for NHS funding in xx PCT which are/were applied in 2007, 2008 and 2009 particularly with respect to age. Can you also indicate whether these criteria are in line with NICE guidelines.

How many female patients were treated by NHS funded IVF within xx PCT in 2007, 2008 and 2009 and what was the age range of the female partner treated ie maximum and minimum age treated

How many female patients within xx PCT are currently (April 2009) awaiting treatment at xx Hospital for NHS funded IVF? How long is the waiting list ie if a patient was currently referred how long would it take to receive NHS funded treatment?

Is the waiting list for NHS funded IVF within xx PCT subject to the governments waiting list initiative?

I understand you will be able to provide this information within 20 working days of my request.

Kind regards etc

Useful to find out what is actually happening in your area
Type FOI or freedom of information act into the search section of your PCT/hospital web page to find contact details or email address for that department.

Advocacy service
These people are helping us with our appeal and our advocate is brilliant. It is a free service so I guess it may vary across the country but has been massively worthwhile for us


Are the patient liason service within each PCT and they should help you with complaints but so far ours haven't answered my letters or emails. I guess the service varies


Great information

GOOD LUCK post a thread if you think I can help. Or just want a moan.

[Modified by: J-Jenko on 27 April 2009 13:25:37 ]

[Modified by: J-Jenko on 27 April 2009 15:26:56 ]



    Anyway, JJ, wanted to thank you for taking the time to post this. It could be very, very useful indeed.

    We are not currently going through IVF but are pretty much resigned to the fact that we will need to.

    Have been TTC for 2 years. DH's SA results were not great. Have been to clinic and have another appt in August assuming we are not pg and following further SA tests, blood tests and HSG.

    I have BMI of under 30, no kids on either side, non smokers, aged 31 and haven't been private.

    We do NOT currently qualify for IVF in our PCT!!! Ours (Bucks and I believe it also covers Oxon and one other local county....?), only offer IVF for those as above but that are between 35-39. They are currently in a consultation to reduce this to age 30-34 and are expected to agree to this by the end on May 09.

    Even so, and assuming they change things, they will only offer ONE cycle of treatment.

    I am, of course, hoping that I need not appeal but thank you so much again. It's so helpful.

    Can I ask, have they told you why they will not offer you IVF??

  • hey Mrs H
    Your PCT should give you 3 between 23-39. So even the outcome of the consultation is not what should be happening.

    I am pretty realistic on the 3 cycles but think I should get one!

    We are declined because our PCT fund you if you are between 36-37 !! Big age range and this is to save money as the PCT is way over spent. I have seen the reports and have copies to wave if necessary

    Fingers cross will update if and when we get anywhere

    Am hopeful we
  • Hi J-jenko
    I just wanted to say thanks for sharing all this info. xx
  • Jenko, thanks so much, this will certainly come in handy...

    It is all such a hard slog, I know they rely on people being so bloody worn down that we wont fight their outrageous decsions..

    I cant believe youve got a 1 year gap... how are they getting away with that?

    My local authority (wessex, hampshire, southampton, iow etc) currently only offer to ages 36 - 39 but have told me i wont qualify until im 39 (why, thats 8 years away!!!) Also if i consider 8 years to be too long and im in a "rush" (yes thats what she said) then i could always pay privatley but, you guessed it, i would forfit any free go...

    we have diagnoised infertility, both female and male factoer, and have been told ICSI is practical our only option. Grrrrhhhhh.

    Out of interest, where is the best pct?

    Gemma x

    [Modified by: GEM78 on May 02, 2009 05:13 PM]

  • Hey Gem
    The best area for funding is currently Essex etc they currently have directive for 3 full cycles and 3 frozen transfers for all!
    In terms of efficacy I recommend a snoop on the following website which shows all clinics and enables you to compare sucess rates
    I think it is INSANE that you should be made to wait until 39 when the potential efficacy of the procedure is declining. Madness!!!!!!!
    Good luck
  • hi laides, we judt had our letter from the PCT yesturday they have denied us funding on the grounds that i am 21 not 23, they ssid they will fund us when im 23 but until then they can do nothing.
    hubby and i are devestated but theres not another option for us, i know we are young but its all we want, we have achieved so much in the last 3 yrs (been ttc) we are married ,in oureo wn home, great jobs with great pensions and maternity rights.
    so now just the baby.
    we are heart broken, and to top it all off after reading the letter 3 of my friends announced they are pregnant!!!!
  • Oh Mrs E thats really tough. Am guessing you have had all the infertility assessments and everything. For once the PCT are following guidelines you can try to appeal if you can bear the process?
    The one good thing is that when you do get a cycle you will have a brilliant chance because of your age.
    Crossing fingers that you might get a miracle BFP in th mean time

  • Hello,

      My name is Nicola Keaney. I work for ITV. We are trying to get in contact with a woman (40/41 y/old) who has previously been rejected for IVF treatment because of her age but is now eligible because the guidelines have raised the age to 42. We would need to speak to her today and interview her for the news.    I don't know if this is something you can help us with but if so please give me a call on 07903 757811   Best regards,   Nicola Keaney
  • Hi me & my partner ( Husband now since 1st Oct 2011 ) have been together since 7th march 2002. My husband doesn't have any children of his own but i have a son from a previous relationship who is now 12 but my husband wants a baby of his own & my son also wants a brother or sister but in 2005 i had pid & my tubes are now blocked & we have to go for ivf if we want any children together but because i already have a child we have to pay which i don't think it is fair on my husband who has no children of his own & its not fair on my son who would love a brother or sister.


  • i agree kim, myself and partner have been trying for 2years, i have one blocked tube and his sperm isnt great, wev had 3 rounds of clomid we had to fight for! have been told we need ivf but as i have a son from a prev relatonship we dont qualify which i thinks horrible that my partner is being punnished for loving someone who has a kid ... its horrible x
  • I'm having the same problem, my fiance has a daughter who I have no contact with but I have been infertile for 5 years as a result of 2 ectopic pregnancies when I was a teen. I'm now 23 and ready to have a child with him and was really excited about giving IVF a try but have since been told we won't qualify because he already has his little girl. I feel its unfair because I'm the one with the fertility problem and I have no children but have to live without having them. It is so frustrating what gives our government the right to dictate who gets to have babies and who doesn't! Its a natural thing and believe evry person deserves a chance to be a parent as it isnt our fault we have these problems! x

  • im also going through same thing im 30 I have a daughter from a previous relationship, my husband has had cancer so has had a testicle removed therefor his sperm isn't that great, we tried to conceive naturally for 3yrs to no joy. We have been told ivf (icsi) is the only way we could get pregnant but we don't qualify for ivf as I have my daughter. I think its so unfair they should give people a better chance to have a family.

    the best of luck to you all

    steph x


  • hi all, i am in a terrible state. me and my partner have been trying to conceive for over 6 years and have had no luck due to me having only 1 Fallopian tube ( the other had to be removed due to being blocked with fluid ) i can not ovulate with out treatment which i have been taking chlomid for but i am comin up to my last month of this. me and my partner have been refused ivf due to my partner having children from a previous relationship but i do not have any of my own i think this is a disgrace and we are going to appeal for ivf treatment as there is no other way we could afford to pay for this at this moment in time. i dont think the government should be able to play with peoples lives and emotions like this. I have become very very depressed as i know there is no other way of me conceiving, i also have endometriosis. if there is any1 out there with similar problems and situation who have appealed this decision and won could you please reply with what i should expect. 

    thanks in advance 

  • me again sorry. if anyone could give me some advice on where to start with an appeal for ivf and some idea of what to include as i am no good with words in a letter i am much better at explaining if you know what i mean. thanks in advance again x

  • Hi, i am totally new to forus/chats like this, but guess im hoping to get some help and also help others who are slightly behind our part of the 'IVF appeal journey'.

    Due to medical negligence when i had an appendicitus 7 years ago, i have since had to have both my fallopian tubes removed. My partner and i aware the only option for us to conceive would be with ivf, have over the last year been trying to appeal for NHS funding. You see, i have an 8 year old from a previous relationship therefore we do not qualify for funding, even though we qualify in every other way.

    How can you penalise my partner by not classing him as 'childless'!?

    Where is his support to give him the opportunity to be a father?!

    SO where are we up to??....

    We wrote to our MP initially, the health minister, we have the support of our GP (who submitted an IFR - individual funding request) and chief officer of the CCG for our area who all have helped in one way or another. This was not centered around the fact we already have a child, but due to the medical negligence. I wont go into details but its been terrible treatment spanned over a 4 or so year period.

    Yet on Friday the panel met to review our case and we were declined. devastated. declined on the grounds that our case is not 'exceptional enough' ! What qualifys 'exceptional' ?? 

    SO we fight on and have already begun out reappeal with further evidence.

    Is anyone in or know anyone that has been through a similar situation? We want to gather further information to understand consistency across the country. Are the same appeals being turned down or not? Have reappeals been successful?

    Also, if anyone wants any help of questions about starting an appeal, please ask. We have made so many contacts and found so many different routes so far image


  • hi there.

    i have been through a similar situation. to cut a long story short, we have no children between US, initially did one cycle nhs ivf due to sperm issue, when it came to egg collection all my eggs were non viable, very poor quality, there was 12 eggs, so they was no transfer, Dr said was very rare, they gave me another go and the exact same thing happened. . no transfer, so i never had one full cycle. they said nothin more they can do. my only option would be donar eggs costing 7500. that's where we were left. we applied for the individual funding request, my Dr said he not saw anything like this in his 30 year career, however he filled out the form quite vaguely, we were declined for not having exceptional circumstances. after year and a half of taking time out we took out a loan and had private treatment abroad, and now have twins on board.

    i do understand your frustration, i also know of a couple who have a child between them and been declined, until that if that rule is lifted they won't agree it, sometimes its worth saving your heartache and time and pursuing other avenues, good luck! xx
  • Hi,

    I wonder if you can help me..

    My husband and I had our first 1VF ICIS cycle in December 2013. I have Lupus SLE and I had Chemo in 2006 and my husband has low sperm count. The only way we can conceive is throuh ICIS. Due to our CCG the funding currently is 1 fresh and 1 frozen - unfortunately we didn't have any frozen embreyo's at the time and we feel we have not had the same amount of trials which are available for patients on NHS.


    What could we do to appeal? You help will greatly be appreciated.



  • hi there,

    do you mean you didn't have any to freeze from your fresh cycle? did you get to transfer stage?
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