# NICE calls for an end to postcode lottery of IVF treatment



## Rudolph101

https://www.nice.org.uk/news/article/nice-calls-for-an-end-to-postcode-lottery-of-ivf-treatment

I have just emailed my local Healthwatch to ask for their response to the above NICE press release.

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Squiggly

Let us know their response!


----------



## deedee_spark

Rudolph - Is your email suitable for a template so that we all start bombarding our LA Healthwatch with a response?


----------



## Squiggly

Inspired by you, I've just written an email to my local CCG asking for their comments. I think the more that all of us raise the question, the better the chance of something changing.

This is what I wrote. You would need to personalise quite a lot of it, but it still might be helpful to those not sure where to start. I don't think it's necessary to go into all your medical history, but I did want to thank them for what I had received so far as I genuinely do appreciate it.

"Dear West Devon CCG,

All being well, my husband and I will shortly begin our IVF/ ICSI treatment at ------ Suite in ----. Whether it succeeds or not, it is a great relief that the financial burden has been lifted with this first cycle. All medication, injection training and scans are being provided by the NHS. I thank you for arranging this -and for every test and operation that I have undergone since being referred to ------.

However, with just one cycle, failure is still the most likely outcome. It would take around 3 cycles to have a good chance of success, which is no doubt why NICE has said that this is one of its quality standards for infertility.

I wonder if you might comment on what changes Western Devon CCG will be making to meet this quality standard?

https://www.nice.org.uk/news/article/nice-calls-for-an-end-to-postcode-lottery-of-ivf-treatment

Thank you.

--------"

It would be good to get the local press involved, too. If I can, I will try to send emails to local radio/ newspapers.

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Cloudy

A good idea may also be to cc the letter to your local MP, and the potential parliamentary candidates for your area, and also ask for their stance on this practice. There is an election coming up and in my experience this is a really good time to stoke their fire! They want to get in the local papers with any "cause" they can, but they aren't campaigning at full speed yet so they will have time to actually look into it.


----------



## Squiggly

That's a good idea and smart thinking.

Just found this on the NHS Map of Medicine that is used to advice doctors as to the treatment options. (Click on the bit that says IVF.) http://healthguides.mapofmedicine.com/choices/map/infertility4.html

It says there that 3 cycles should be offered.

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Rudolph101

Whoops, didn't get notification of any replies ladies, sorry! Well I wrote a very basic email to start, saying...I would be interested in Greenwich council's response to the NICE  press release bearing in mind it offers only 1 cycle. 

My usual approach to having a moan is to go in very gently at first, then have a huge moan depending on the response.

I am with you on the MP approach. I have moaned to mine before about other matters and got a reply. Let's face it, NHS is a talking point for MPs at the mo and there is a general election coming sooner rather than later so they will either promise the earth or do  nothing. 

It's worth a try though and I will be following this up with my MP! Really annoys me! The more of us that do, the more impact we will make surely?

I am going to the Fertility Show tomorrow, hopefully there will be someone there willing to shout loud on behalf of people like us. Will be investigating...will report back. X


----------



## TraceySainsbury

A counselling client has asked me to share these with you as she found them helpful in securing funding:

There are template letters for CCGs and MPs on the Funding for Fertility section of the Infertility Network UK website http://www.infertilitynetworkuk.com/nhs_funding_2 and the National Infertility Awareness Campaign has changed its name to 'Fertility Fairness' http://www.fertilityfairness.co.uk/

Hope that helps

Tracey

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Squiggly

I copied the CCG email to my MP and added this:

Dear ------ ------,

I wondered if you were aware that NHS patients with infertility are only being offered one treatment of IVF. This is despite the National Institute for Clinical Excellence (NICE) - which sets the quality standards about cost-effective treatments - making it clear that 3 cycles of IVF (or ICSI) should be offered.

I am forwarding a letter that I am sending to the body that decides on the funding for our local area, Western Devon CCG.

There has been an growing public awareness about the post code lottery for IVF. It can range from 0 - 3 cycles being offered, depending on where you happen to live.

https://www.nice.org.uk/news/article/nice-calls-for-an-end-to-postcode-lottery-of-ivf-treatment

My husband and I have been struggling with infertility for over 3.5 years and will shortly be having our first IVF cycle - all being well. It is a great relief that we do not have to fund this, but we are very worried about what will happen if this doesn't work. The cost privately ranges from £6,000 to £10,000 (which includes scan and medication). I need not tell you that this represents a serious cost for each cycle. We are confident that we will make excellent parents, if only we can get that far!

It says on the NHS's Map of Medicine that 3 treatments should be offered http://healthguides.mapofmedicine.com/choices/map/infertility4.html (Click on IVF).

I would be delighted if you would get involve with this issue to make infertility treatments fair for all, as per the NICE guidelines. It is not clear to me whether there are any consequences for CCGs who do not meet these quality standards. This seems to be what is needed to make the change.

I would like to get the local press involved to help raise awareness and push for change, though I will need to keep some anonymity due to my professional role as a --------.

Thank you for your time.

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Rudolph101

Got this today from my Healthwatch.....

Thank you very much for your submission to our website regarding the NICE fertility guidelines and for bringing this to our attention. We will be bringing this issue to our meetings with the CCG and asking for more information regarding their policy.  We will also be engaging with service users and members of the public through our ******* pages and e-bulletin to understand how this is affecting the residents of Greenwich. We know that there are other Healthwatches in London who are doing some work on this and I will be contacting them to find out more about their work in this area. 

If you have any more questions for us, or have any information we would find useful, please let me know. 

....I will follow up with them. Seems as though there is a lack of awareness of this??


----------



## Rudolph101

My email to MP today. I have a bee in my bonnet about why the NHS still sends letters through the post as well instead of email!

Squiggly, I based it on yours! No response yet I'm guessing?!

I am writing to you with regard to the recent press release issued by the National Institute for Clinical Excellence (NICE) which sets quality standards regarding healthcare under the remit of the Department of Health. The press release states that the postcode lottery for IVF funding must cease and all those in need of this service should receive the same level of service, that being 3 cycles of IVF or ICSI.

https://www.nice.org.uk/news/article/nice-calls-for-an-end-to-postcode-lottery-of-ivf-treatment

My CCG is Greenwich which offers only 1 cycle. I have already contacted my local Healthwatch to hear their thoughts on this issue.

They have responded that this issue will be raised at the meetings with the CCG and they will be liaising with other CCGs in London to ascertain their policies on this matter.

My husband and I have discovered that we require this service and we have been referred and are waiting for a letter which will start the process for us.

It appears very possible that our problem was a result of earlier treatment that my husband underwent for an unrelated problem, however at no stage was he advised of the potential consequences and now we find ourselves in the position where it is impossible for us to conceive naturally and with only 1 chance to do so on the NHS.

I would be delighted if you would get involved with this issue to make infertility treatments fair for all, as per the NICE guidelines. I understand they are just guidelines and therefore not mandatory. I am also aware that the procedure is expensive and NHS funding is a hot potato but surely there should be some consistency and fairness across the UK?

Further to this, I would like to hear your thoughts on a move to introduce the use of email by the NHS rather than traditional post. The whole process undergone by my husband and I to date has been convoluted and slow due to lack of information, and letters either not being sent to us or to our GP. Email would surely expedite the whole process. I would suggest that email is now more secure than post. I would also suggest that as more than 85% of people use email it would benefit the UK population to no end. It would also save the NHS millions of pounds.

Thank you for your time and I look forward to receiving your response on these matters.

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Cloudy

That's really good, fingers crossed you get a positive response  

Although with regards to the email: in my experience (working for a local authority) we only have about 10% of our constituents who use email as their form of communication and less than 5% want us to use email. The cost/logistics of sending encrypted email, and the lack of interest (plus the 30-40% of our population who don't have access to email) means it's not going to happen anytime soon, especially when we have such a reduced IT budget. I know what you are saying, but there are loads of email sticking blocks at the moment. 

Xxx


----------



## Rudolph101

Thanks Cloudy, that's really interesting. For me (and prob loads like me) even run of the mill email is more secure than post. I reckon we should have choice of how we receive communication. I live in a flat where post is a lot less secure than email so if it's not encrypted then it's probably still safer than a letter. In fact, I would say the only letters I receive (sometimes!) are NHS letters these days. 
I take your point and I get that long term investment isn't on the agenda as it doesn't win elections but still does my head in. Seems such an obvious thing to do to ultimately save money (and spend on IVF!) 

Let's see what my MP says! X


----------



## Cloudy

I totally agree, they should give people a choice, especially given how much post is lost or misdelivered. I think our stats say something like 6p per automated (online) interaction vs £6-£9 per telephone/mail interaction. The way around it we have is to have a on-line database with good password protected access so people can access their "account" and interact with services, deal with their financial transactions, and communicate with departments/book appointments etc.

Sadly i worry that ivf (which is often seen as being received by the non-voter) may be sacrificed for the benefit of other spending which They don't want to affect because it affects the "average" voter. You would be surprised how many authorities have scrapped support services for adults with certain learning and mental health problems, but haven't touched the stuff that voters complain about: graffiti removal, grass and tree cutting, certain areas of transport.

I really hope I'm wrong!


----------



## Squiggly

Okay, sorry for the delay. My email was passed to and from several different people within my CCG, with several updates about who it had been passed to. Then, finally, I got this response today:

Dear Mrs --------,

Following my email to you last week I am now in a position to forward the response (as below) I have received from our Complex Care Policy Manager in answer to your query:

Thank you for your enquiry about IVF provision. Unfortunately the need and demand for healthcare services will always exceed the funding available to the NHS. The challenge for NHS commissioners is to arrive at fair decisions which balance competing needs. In assessing treatment options, the Northern Eastern and Western Devon Clinical Commissioning Group (NEW Devon CCG) needs to consider the clinical effectiveness of the treatment option and the cost benefit of the treatment. This consideration then needs to be set against a comprehensive view of other existing services and potential services to ensure a robust and fair resource allocation process. In the context of limited resources, the Northern, Eastern and Western Devon Clinical Commissioning Group's approach continues to be that treatment should be targeted at those with the most need and the greatest chance of success.

As you are probably aware there is, unfortunately, substantial variation in the criteria which local NHS organisations apply to the eligibility for NHS funding of fertility interventions. A summary of these can be found on the website of the infertility network UK http://www.infertilitynetworkuk.com/ccg_details. This shows that local determinations have been made with variance in the number of IVF cycles funded, the definition of a cycle , age ranges funded, the length of relationship of the couple, the time trying to conceive, criteria applied for couples with previous children, smoking status of either partner and any body mass index criteria that need to be met.

The CCG's current policy is that up to 4 cycles of IUI (Intrauterine insemination) and 1 cycle of IVF (In vitro fertilisation) may be funded per couple, who would be expected to have more than a 10% chance of live-birth per cycle. All couples must meet the eligibility criteria which is clearly set out in our policy. This commissioning position has also been adopted by our two neighbouring Clinical Commissioning Groups - Kernow Clinical Commissioning Group and South Devon and Torbay Clinical Commissioning Group - to ensure equity across the South West Peninsula. For couples that do not meet the criteria set out in our policy, there is also the option of seeking exceptional funding through our individual funding request process. Details of this process can be found here: http://www.newdevonccg.nhs.uk/partnerships/nhs-funded-patients/exceptional-individual-funding-requests-ifr/100115

In response to the question you pose in your email, our local policy is currently under review, prompted by the release of the non-mandatory clinical guideline by Health and Care Excellence(NICE). This is occurring in consultation with providers of local hospital based investigations and treatments and also the specialist IVF providers in Devon.

It must be recognised that the estimates from NICE are that adoption of the guideline would cost the Clinical Commissioning Group in excess of £1.4 million. We therefore have a responsibility to assess the priority the Clinical Commissioning Group wishes to give to using its funds for this treatment, given the competing demands it has for the funding of healthcare. Please rest assured that the Northern, Eastern and Western Clinical Commissioning Group will give careful consideration to the recommendations made by NICE and will endeavour, wherever possible, to implement best practice guidance and ensure equitable and fair access to NHS treatment.'

Please may I take this opportunity to wish both you and your husband all the best for your future treatment.

Kind Regards

-------------

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Squiggly

I'm sure you can all read what the letter above says, but for those in a hurry, I shall paraphrase it (and add a bit of subtext):

1) As a CCG, there is a limited amount of money in the pot and we have a lot of different things we need to spend money on. Some of it is urgent and life-threatening.
2) We're fully aware that there are major discrepencies throughout the UK.
3) It would cost us £1.4 M to follow what are essentially non-mandatory guidelines.
4) We'll discuss it, but I wouldn't hold your breath.
5) Best of luck with your one cycle.


----------



## Squiggly

My response if you're interested:

Dear ------- and the Complex Care Policy Manager,

Thank you both for your reply.

It must indeed by a complex challenge to try to balance competing needs within the NHS with the funding available. I appreciate what you write about the NICE quality standards being non-mandatory. This of course, may make it hard to motivate CCGs to work together to make a fairer NHS.

I am pleased that you will be looking into what changes can be made and I look forward to hearing the outcome of these decisions. This does need addressing. Where you live can make a difference of thousands of pounds, no small matter.

Thank you also for your kind wishes. Sadly, our IVF was cancelled today due to poor response. I'm told we will start a new cycle with an adjusted protocol, which will still be counted as our 'one cycle' and so be funded by the NHS. Thus, our worries about what we might do next are temporarily postponed as we still have this first hurdle to get through.

For your interest: http://www.tearsandhope.com/emptyarms_video.html

Warm Regards,

Mrs -------------------

This post contains an unconfirmed link/information and readers are reminded that FertilityFriends.co.uk or its owners are not responsible for the content of external internet sites


----------



## Rudolph101

Here's the response I got -

Thank you for your email to Nick Raynsford MP about IVF treatment. Nick was involved with the IVFYes campaign earlier this year, and lobbied Greenwich Clinical Commissioning Group about access to IVF treatment for all women, regardless of where they live. Please find attached a copy of the response he received. I am sorry to send you what will no doubt be a disappointing reply, but I hope you find it useful.

Regarding your point about NHS using email rather than post, your reasons make sense, but this would have to be looked at in more detail, with particular attention paid to ensuring that those without email (especially the elderly, or low-income families) are not at a disadvantage. At a time of swingeing cuts to funding, I am sure that Greenwich CCG is looking at all options for reducing costs without putting patient safety at risk.

If you would like Nick to look into your personal case and the individual experience of the NHS you describe briefly below, please let me know, and he would be happy to make representations on your behalf.

----------------------
The attached letter basically said that all CCGs in SE London agreed the same policy (1 round) and other patients' welfare needed to be considered so due to limited funding they are unable to implement NICE guidelines. (Sorry, I can't attach the letter.)

Squiggly sorry to hear yours was cancelled. Until they are in the same boat as us, these policy makers will never understand how we feel. 

My response -
Thanks for your response. It's heartening to heat that my local MP has already been involved in this issue. I completely understand the challenges faced by the NHS but when you hear of operations such as unnecessary cosmetic surgery being undertaken on the NHS it is galling. One thing I don't understand is why there is such a discrepancy across the country. Some CCGs offer 3 rounds, some offer zero. Perhaps I am being naïve but there should not be such a difference across the UK. 

With regard to my personal issue, I doubt there is much that can be done. My husband underwent 3 operations for a hernia as a child, having metal mesh inserted to stop the hernia from recurring. Our consultant specifically asked if he had had a hernia operation when we found out that there was a problem. Having looked into this further, we suspect that these operations and the mesh may be the reason for our problem - possibly being the cause of a blockage. However, this is unlikely to be proven and we are not in the business of attempting to sue the NHS although it is sad to see that in certain parts of the country others have 3 chances of success when it should be equitable across the country. I am not sure that anything more can be done with regard to our particular case.  

I hope in the future there can be more parity across the country and this issue needs to be addressed. It does make me wonder why the government bothers to fund NICE if their recommendations are ignored?! I absolutely appreciate the work that NICE does but perhaps policy should be reviewed so that CCGs work with NICE to at least strive to meet the guidelines.


----------



## itsonlybridge

Good on you ladies for challenging the authorities. I shall be joining you tomorrow with a letter to both my local CCG and MP (Staffordshire area) so I'll keep you posted


----------

