IVF Postcode lottery back in the news...

With The All Party Parliamentary Group on Infertility report just released, the unfair and unjust lottery on IVF provision in our National Health Service is in the spotlight once again. Read about it here.


Unfortunately North Yorkshire and York PCT remains one of the five PCTs that offer absolutely no meaningful service whatsoever - along with Warrington, Stockport, North Staffordshire and West Sussex.

Of course now the management of these under-performing PCTs are cowering behind the pathetic excuse that recent tough financial restraints mean they are unable to offer the service.

A spokeswoman at NHS West Sussex said: "In line with NHS trusts across the country, we did have to face some tough decisions last year to ensure that we met our legal duty to break even financially".

North Yorkshire and York also recently intimated that the same financial cut-backs were behind their own withdrawal of IVF provision just a few months after reinstating it following several years of no service.

It still beggars belief that they fly in the face of NICE guidelines to offer three full cycles of IVF to all patients meeting fair eligibility criteria.

Sorry we have been away so long...

Well, as the title says really. We have had a very busy time over the last few months looking after our little IVF twins - who are coming up 20 months old already.

Anyway, as I am sure every single one of you are aware, North Yorkshire and York PCT have withdrawn funding for IVF again so soon after re-instating it. To be honest, it was an expected move with the 'global economic downturn' (I really hate hearing that excuse) but unfortunately it will become the norm for such services to be cut from the ailing NHS across the UK - more and more PCTs are cutting the service every day.

Unfortunately for us residents of North Yorkshire, we never had it good when times weren't as tough.

Let's hope that all of you that go through self-funded IVF are successful and let's keep the faith that, as failure rates continue to drop due to advances in technology, we hear more and more good news stories.

And you never know, there may come a day when technology improves sufficiently that our PCT will have a cost-effective option that they can introduce.

Infertility Network newsletter

Just had this through from the Infertility Network - we thought it may prove useful for anyone wanting to be kept informed of all things connected to infertility.

____________________________________________________________________


Infertility Network UK now has a free e-newsletter to keep you up to date with all that’s happening within the charity, information on new developments within the field of infertility, funding issues, and much more.

The newsletter will be sent out bi monthly – all you have to do to receive your copy is to visit our website www.infertilitynetworkuk.com and enter your email address in the “newsletter” box below the left hand menu. We are sure you will find the newsletter informative and interesting and if you have any suggestions for issues you would like to see covered please do let us know.

Please do pass on this email to any friends and family who may be interested in receiving the newsletter which will ensure they too are kept up to date with news and information from Infertility Network.

AT LAST!

We have just been advised that, as of today, North Yorkshire and York PCT will fund one cycle of IVF for all eligible couples. Not that this should really be a reason to celebrate - they should NEVER have withdrawn this essential medical procedure which is recommended by NICE.

Let's just hope that the (granted essential) Government-led squeeze on spending doesn't give them an excuse to withdraw it again any time soon - it shouldn't because the Government has promised to ring-fence NHS spending. But we have good reason, given what has gone on in the past, not to hold out too much hope here in North Yorkshire.

So - fingers crossed for all you lucky couples out there in North Yorkshire who finally have an opportunity to try for a family and let's hope you are all successful!

If anyone would like any further details, they can call the PCT or call Sue Redshaw directly on 07786 250721

A response from the PCT

We have contacted the PCT to comment on the delay in provision of IVF from April as promised and have had this rather ambiguous response.

We do appreciate that the provision of IVF is an emotive subject and in order to ensure that everyone across the whole of Yorkshire and Humber region has equity of access, we have been working with other NHS organisations as part of the region-wide Specialised Commissioning Group to establish a minimum standard that patients can expect wherever they live within the region.

We had hoped that the change would take effect from April 2010 but in order to ensure a consistent approach across Yorkshire and the Humber, the view is that it is likely to come into effect from July 2010.

We appreciate that this delay will be disappointing for some; however it is vital that we use this opportunity to finally establish a fair and equitable approach to the commissioning of IVF services.

If you have any further queries, please contact PALS on 0800 068 8000.

We don't really believe that any changes will come into effect in July - after all they are very good at not keeping to promises and seem happy to continue to ignore all Government and NICE guidelines on IVF provision. It is also somewhat ironic that they cite 'equity' as a reason to delay the provision after some three years of inequity with the vast majority of PCTs across the country. But, as excuses go, it is one.

Latest from the PCT

I have heard that the PCT has delayed its implementation of IVF provision as it promised it would do starting in April. More from us when we find out more from them.

An ambiguous answer from the PCT

I have just asked whether or not the subject of today's news article would have an impact on the funding for IVF in our region.
THIS IS WHAT I ASKED
Can you confirm whether or not this will have any impact on the PCTs announcement that they will re-instate IVF funding from April 2010?

AND THEIR RESPONSE
All I can say is that it is the PCT's intention at present to commission one full cycle w/e/f April 2010

Make of it what you will.

The PCT is back in the red...

We have just read that the PCT has slid back into the red in the last financial year. We hope this doesn't mean they will renege on their promise to re-instate IVF funding - we will post again when we know more...

So just why does our PCT delay support for IVF?

A very interesting piece of research that confirms the link between Down's syndrome and childbirth later in life begs the question - why on earth does our PCT delay support for those needing assistance until they are at an age where the statistics show they are so much more likely to carry a baby with Down's syndrome? The risk of having a baby with Down's syndrome is one in 940 for a woman aged 30. But by age 40, the risk rises to one in 85. Surely our PCT should see the manyfold benefits (of which a reduced risk of Down's syndrome is just one example) of childbirth at a younger age, not just look at their Balance Sheet?

Drinking alcohol and the effects on IVF results

We just came across this article about drinking during courses of IVF. We took the decision not to drink before and during our treatment and, although I (male partner) found it difficult at times, it was ultimately worth it. Obviously it is impossible to tell whether the alcohol abstinence was a factor in our success but it was a very small price to pay.

Egg screening for IVF

It seems that egg screening success rates are now backed up by real scientific evidence. As yet to be offered on the NHS (well, live in North Yorkshire and you don't even get 'vanilla' IVF, never mind advanced screening techniques) but some private clinics now offer it - it is said to be particularly effective for older women who carry greater risks of giving birth to babies with defects.

Well, how did our PCT fair in the CareQuality Commission survey?

After last year's disasterous results where North Yorkshire and York PCT scored as WEAK there really was only one way up. This year they managed to reach the heady heights of FAIR. Of course this isn't really acceptable. It is certainly not acceptable for those of us unable to get access to a service that most PCTs offer and, yes you've guessed it, NICE and the Government recommend is provided.

Further correspondence from the PCT

After asking for clarification on the impending re-instatement of an IVF service for us unfortunates living in a home with a North Yorkshire postcode, Gill Fox made this statement...

From April 2010, this PCT along with the other 13 PCTs in the Yorkshire & Humber Specialised Commissioning Group, will adhere to a collaborative policy around assisted conception services. This PCT has also agreed that, from that date, all eligible couples will be able to access 1 NHS funded cycle of IVF/ICSI providing they meet eligibility criteria. The age parameters for access will be as per NICE guidance.

As part of on-going discussions, differing PCT eligibility criteria are currently being re-assessed so that all PCTs can sign up to an agreed set, thus helping to dispel any suggestion of a post-code lottery. I have been actively involved in these discussions and I do not anticipate very much change from the present criteria around age of patient(s), previous children by this or other relationships etc although there will be some minor adjustments.

Until April 2010, NYY PCT continues not to routinely commission IVF/ICSI unless the female partner is 39 years and 6 months of age or it is a case of exceptional clinical need. At some point in early 2010, all GPs and consultants will receive further information on the new policy and criteria together with reiteration of referral guidelines.

So there we have it - exact eligibility has not yet been confirmed, but it should mean that a much greater number of couples will now be able to access IVF treatment. They are still some way off meeting NICE and Government targets for proper levels of provision for the service though, but it is a step in the right direction.

Extract from North Yorks NHS board meeting - recommencement of IVF...

So... We have it, in black and white. Finally our wonderful PCT has taken its first tentative steps back on the IVF ladder. At some point in the future they may reach the dizzy heights of meeting NICE guidelines and providing the three courses that are recommended.

Still, it is a start.

10. Provision of Sub- fertility Service
The IVF service was not commissioned from February 2007 and treatment stopped as a result in May 2007. At this point there was a waiting list of patients for 2 years. There were 200 on the list and this has reduced naturally to 100. There is a difficulty with patients meeting the 18/52 waiting list targets and 36/52 would fit the provision of the service better due to the timings and delivery of treatment. There is £400 – 500k left in the funding presently and Gill Fox posed the question to the meeting of whether to commence the service now or to wait until April 2010. It was agreed that the services would be commissioned in April 2010. There would be an exception for patients who were 39 and would have the chance to go through one cycle before they were 40 or patients who had exceptional medical/clinical need.

There was a statement going to be published in the Sunday Telegraph from David Cockayne regarding NHSNYY funding 1 IVF cycle from April 2010 to patients who met the criteria.

IVF Postcode lottery in the news again

Yet again the disparity of service the NHS provides is in the news - here is a link to several reports - but the nation's PCTs still seem reticent to do anything about it. What continues to puzzle us is that the Government and NICE (the National Institute for Clinical Excellence) both advise our PCTs to provide three course of IVF for all qualifying couples, yet each PCT sets its own set of criteria for who qualifies. For example, age restrictions which would exclude a couple from treatment in one PCT would be the age restrictions required to get treatment in another! And in one PCT the couple may be able to get the recommended three courses of IVF (the average required for success) yet in another they will get only two. Or one. Or, as is the case in North Yorkshire and York PCT, none at all.

We say, yet again, we have a NATIONAL Health Service so let's have a set of national guidelines which all PCTs are required to follow. And this goes for ALL NHS services, not just IVF. A Postcode Lottery is unfair, unjust and indefensible.

North Yorkshire and York PCT to reinstate funding for IVF!

Yes - we have it on good authority that the PCT has finally accepted that its restrictive policy regarding IVF treatment was unacceptable and they have stated that they will offer ALL COUPLES one course of IVF treatment via the NHS as of April 2010.

Whilst this is of no direct interest to us now, we are delighted that all the other couples in North Yorkshire we have heard from who were unable to afford privately-funded treatment may finally be able to receive IVF treatment and we hope they are all as successful as we have been.

And you never know, our little campaign may just have been partly responsible for bringing to their attention the outrage many of us have felt over the last few years.

In the press again

A very well written and beautifully communicated piece by The Sunday Telegraph.

The Sunday Telegraph would like your help!

We have just been contacted by Laura Donnely, health correspondent for the Sunday Telegraph. They are wanting to talk to couples effected by the restrictive policy on IVF in North Yorkshire and the so-called postcode lottery.

She, is very keen to talk to couples who have been affected by the restrictions, who are either paying for IVF privately, or are forced to wait until reaching the age where North Yorks PCT will consider them. She needs to do the interviews, by phone, as soon as possible - today (Thursday 25 June 2009) or tomorrow (Friday). The phone interview should take no longer than 20 minutes. If you can do it, and are happy to be named and photographed to run with the piece, contact her on 020 7931 3562 or laura.donnelly@telegraph.co.uk.

It's a girl! It's a girl!

Our two beautiful IVF babies were born on June 8. Evie Grace (5lb 7oz) and Isabelle Cara (4lb 7oz) are at home mother and both babies are fine and well.

The good news is no thanks to North Yorkshire and York PCT though - their inability to provide the standard of service as recommended by NICE meant we had to pay to have treatment privately.

And this comes in a week where official figures show a strong increase in the provision of IVF treatment. Read about the findings on the BBC site.

Although that news means nothing for any of us living in North Yorkshire. The people charged with providing our healthcare services in North Yorkshire should be thoroughly, utterly and unequivicably ashamed of themselves.

No news

All remains quiet at North Yorkshire and York PCT regarding any further decisions regarding recommencement of any IVF facility for its beleaguered residents. I wish we could be posting to announce that they have finally found the funds to be able to offer the same level of IVF support as almost every other PCT across England (ie at least one course of treatment) but alas no.

Of course we will post as and when we hear anything...

Trying to secure funding for IVF in North Yorkshire

Unfortunately we didn't manage to extract a single penny from our finacially destitute PCT, but Infertility Network UK have just released this useful guide to approaching PCTs to attempt to secure funding for IVF. We did something similar ourselves to no avail, but please, please, PLEASE do not let this put you off contacting them. The more people's lives they realise they are destroying, the more likely they will be to finally change their stance. The more exposure their woeful provision gets, the more chance we have of forcing them to finally do something about it.

North Yorkshire and York PCT simply cannot be allowed to continue to ignore Government and clinical guidelines on provision of such an important service just because they wasted millions in the past - if almost every other PCT in England can budget for the service, just why do NY&Y PCT think they can get away with not providing it?

Failing at every level

With an ironic smile on my lips I read this article...

Not only does North Yorkshire and York PCT fail it's sub-fertile residents with utter contempt, it (and its parent organisation, Yorkshire and the Humber SHA) is striving to show equal levels of bad service for those fortunate to get pregnant. Of all the nation's SHAs, Yorkshire and the Humber SHA is the ONLY SHA not to show any improvement on current staffing levels for midwives - the current guidelines say that a maximum of 32 births per midwife is acceptable. Our SHA is AIMING FOR 33.8 births per midwife. By 2012.

Which of Yorkshire's residents actully receive better than average care?

In a similar position to us?

We have just been asked to promote this very worthwhile Support Group series of meetings....

------
ADVERT
------

Have you been trying to conceive for over 12 months without success?

North Yorkshire Infertility Support Group meets at:

Sovereign House (next to Jewsons), Kettlestring Lane, Clifton Moor, YORK. YO30 4GQ

This year’s informal support and information evenings will be held on:
• Thursday 12th March 2009 from 7pm to 9pm
• Thursday 18th June 2009 from 7pm to 9pm
• Thursday 17th September 2009 from 7pm to 9pm
• Thursday 10th December 2009 from 7pm to 9pm

At the beginning of each meeting an invited guest will talk to the group about a topic related to infertility.

So please come and join us. Take this opportunity to:
• Meet others in a similar position
• Look through our books and leaflets
• Share experiences

Tea and coffee will be available. Free parking!

For more details contact:
Sue Redshaw, Subfertility Nurse Counsellor for NHS North Yorkshire and York
on 07786 250721

Will this compell North Yorkshire and York PCT to change it's stance on IVF provision?

An article in The Times

Hopefully they will finally accept that they have a duty to provide treatment although, seeing as they ignored NICE guidelines from 2004, I doubt they will. They have too may car parks to build, too many over-paid and under-performing directors to keep in their expensive cars and comfortable houses...

In the news again

Last week we were contacted by the Yorshire Post to pass comment on the situation we found ourselves in - that we received treatment in an NHS hospital with the same NHS consultants, NHS doctors, NHS nurses and in the same NHS unit as NHS patients. And we had to pay for our treatment in full purely because of our North Yorkshire postcode.

There is a brief article here

The full article was published in the Yorshire Post dated 13/02/2009.

Finally - a response from Jayne Brown, Interim CE of North Yorkshire and York PCT

In September 2008 we forwarded this Blog and the list of comments everyone kindly left. Almost four months later they decided to respond. Of course it is not good news and we had already found out for ourselves (and posted here) regarding the current situation.


15/01/2009

Dear Mr and Mrs (Postcode Losers)

Thank you for your email dated 23 September 2008 with regard to IVF and sub fertility services, and for enclosing a copy/print out of your blog, which I have read with interest. Please accept my apologies for the delay in responding to you.

As you are aware, in May 2007, the PCT took the very difficult decision not to routinely commission assisted conception services for the majority of couples (other than those where the female partner was approaching 39 years and 6 months) and at that point, the waiting list held by Leeds General Infirmary was closed to new patients. We do regret that this is a far from ideal situation but unfortunately, as Janet Soo Chung's letter to all patients pointed out, it was felt necessary to take this action in the face of the severe financial deficit which the PCT faced at that time.

Since then, I am pleased to report that the financial situation has improved and we have now been able to re-assess the situation for financial year 2009/10 with regard to funding of assisted conception services. Unfortunately, it is not yet possible to re-open the waiting list to new patients. However, we have been able to agree to treat all those patients who were placed on the Leeds General Infirmary NHS waiting list on or before May 2007. From next month onwards, patients will begin to be called through in priority order of having been placed on the waiting list for a review clinic outpatient appointment with a view to treatment following as soon as clinically appropriate.

Once all the waiting list patients have been treated, the PCT will review the position with regard to whether or not new patients can once again be added to the waiting list.

You may be interested to know that two senior members of PCT staff recently met with Clare Lewis-Jones, Chief Executive of Infertility Network UK, for a full and open discussion about infertility services for North Yorkshire patients.

I hope you find this information helpful, however if I can be of any further assistance please do not hesitate to contact me.

Yours sincerely

Jayne Brown OBE
Interim Chief Executive

Some great news (for us at least)

As we couldn't get funding for IVF via our local PCT, we decided to fund a course out of our own pockets and it worked first time! We are over the moon!!! On top of that, we have been fortunate enough to conceive twins. Yes - after all the heartache that 2008 brought us, 2009 looks set to be a much, much better year! We are due at the end of June.

We will be keeping this blog running and will update it as and when we hear any more news from North Yorkshire and York PCT with regards to any changes in their stance on their provision of the service and we both hope that anyone else finding themselves in similar circumstances to us are as fortunate as us!

It is such a shame that North Yorkshire and York PCT continue to refuse to accept that they have a duty to provide this treatment to ALL couples without their petty restrictions. I hope that some day soon they will finally follow almost every other PCT in England and provide at least one course of treatment on the NHS. By the way 'NHS' is an acronym for NATIONAL Health Service...

Most debt, least services

I am at a loss to add anymore...

Have your say...

The HFEA is the national authority that oversees all IVF and associated treatments/research in the UK. If you would like to have your say please visit their site.

It's progress I guess. But not much....

Earlier this year we spoke to Jill Fox, Senior Commissioning Manager at North Yorkshire and York PCT and she said that the PCT would be reviewing its position on Assisted Fertility Treatment in the autumn of 2008.

Having just got off the phone to her, we have found out that they have started to offer IVF (whoo hoo).

But only to those people who were on the waiting list when they closed it in 2007 (boo).

Anyone who found they required IVF after the spring of 2007 and missed out on the current waiting list will have to wait until at least April 2010 before they can join the new one!

So realistically, anyone requiring this important treatment in North Yorkshire will still have around a two year wait before they could have even a hope of being treated.

The NHS offers Top-ups...

So - the NHS is considering adopting mobile phone operatoresque payment plans. Top-up payments for your NHS care no less! No word about whether this will effect IVF provision in North Yorkshire yet - and we won't be holding out any hope that it will have any effect any time soon.

In fact, several weeks ago, we took the liberty of asking our GP whether any of the drugs would be available to us via the NHS (our own little form of Top-up payments). But of course they are not. Not only is IVF treatment not available to the vast majority of residents in North Yorkshire, but none of the drugs that make up any the treatment are available either. Because of our postcode.

Need I say more?

When this says it all..

No surprises here...

Well, it seems Dr Janet Soo-Chung's stewardship of our under-performing PCT has come to an end. Whether or not she can be held entirely or partially liable for the dreadful ongoing debts, withdrawal of services and inability improve their financial position is open to question and probably beyond our means to ever find out. But hopefully whoever takes charge of the PCT will recognise that, first and foremost, the PCT is there to provide healthcare at a local level, steered by Government and NICE guidelines on what should be provided.

And of course that means they should finally open their eyes and provide the Assisted Conception services that 148 of the nation's 151 PCTs already provide.

Don't hold your breath though - it seems North Yorkshire and York PCT have the financial competence of an Icelandic savings bank.

A sorry state...

Well, the Audit Commission has deemed "inadequate" North Yorkshire and York PCT's financial performance.

Read about it here.

The also said "Patients and the public deserve better from the poor performers, who must learn from the strong performers."

Yes we do, but we aren't important are we? Whilst the vast majority of the nation's Primary Care Trusts are turning around their financial performance, we are shafted. Left with poorly managed and under-funded services.

Managers of North Yorkshire and York PCT - you should be thoroughly ashamed of your collective performance in your mismanagement.

Public oration by Professor Allan Templeton

Professor Allan Templeton is delivering a public oration entitled 'Human Infertility in the 21st Century' at the York Medical Society Rooms, 23 Stonegate, York on Friday 3rd Ocober 2008 at 2pm.

If you would like to attend, please call 01904 750 791 or email yms@york-medical-society.freeserve.co.uk to inform them of your attendance.

The oration will not be addressing any of the local issues regarding North Yorkshire and York PCT's position on funding for IVF, but I am sure it may be helpful for anyone who is about to, or is currently undergoing, IVF treatment.

Regarding the funding issue, the latest we have heard is that the PCT's financial situation is not as positive as it had hoped at this stage, but it is still awaiting re-evaluation by North Yorkshire and York PCT's Chief Executive Janet Soo-Chung.

Let's hope she has read the letter sent to her by the Government's Health Minister, Dawn Primarolo over a month ago.

No news is bad news

It is over two weeks since we emailed every member of North Yorkshire and York PCT's Clinical Leadership Programme with details of our situation and giving them the list of comments left on our petition.

Not one person, not a single solitary person had the good grace to reply to us, to give us feedback on the current situation.

It is one thing being in this dreadful position in the first place, but it is another thing entirely for every member of the team charged with running our PCT to completely ignore us.

It sums up just what these people think about dealing with the public they are paid to serve.

The report of shame

I have just come across this interesting report (you can download the full report at the bottom of the article) - it was completed on 23 June 2008 and shows just what IVF provision each of the nation's PCTs offers. It seems that us in the North Yorkshire and York PCT area really are the poor relations when it comes to the provision.

We really do not see how our PCT can sit back and do nothing - surely they must feel ashamed that almost every other PCT across England offers at least one cycle of treatment.

In fact, the exact wording of their statement shows that the treatment they may offer is even more restrictive than they have led us to believe - they say they have a 'financial contingency for patients on waiting list reaching age 39 who are deemed exceptional'. So - they told us they will treat women between 39.5 years old and their 40th birthday OR in exceptional circumstances when, in fact, they MAY treat them if they decide the circumstances are acceptable.

So the tiny crack in their creaking window has been pushed shut even more.

North Yorkshire and York PCT - you should be ashamed of your inaction.

A response from North Yorkshire and York PCT

Earlier this week I wrote about the Government's letter to all PCTs regarding their provision of IVF and other assisted fertility treatments. I said I would be speaking to our PCT and I finally managed to get through to the right person yesterday (name withheld). I was told that they have yet to receive the letter, although they are aware of it.

The person I spoke to about it was very candid and open about their position and said they would have to wait until they receive the letter, read through the details of the proposal in full and decide on a way of implementing things. She was quick to admit that it will take some time before things can be changed and that we should not expect any quick decisions.

So, here we are, still not even able to get onto a waiting list, never mind get any treatment. The PCT will not even give us a target date for the re-provision of the service. This is simply because our PCT overspent so wastefully and shamefully which led to them withdrawing a treatment that the Government and NICE have repeatedly said should be provided on the NHS. This is also in spite of them being aware that the Health Minister has, just this week, written to them again to tell them they should be providing a full three cycles of IVF including frozen embryo provision. But what do residents under the juristiction of North Yorkshire and York PCT get? A new car park at York hospital.

The comment I found particularly surprising was 'I will be the happiest person in the world when I can tell couples they can have IVF treatment in North Yorkshire'. Somehow I do not think she will be happier than the people being told they no longer have to find countless thousands of pounds to fund the treatment that 95% of the UK gets access to on the NHS.

Fresh pressure on PCTs to provide IVF

Following a meeting by the Expert Group on Commissioning NHS Infertility Provision, the Government's Health Minister, Dawn Primarolo, has written to all PCTs to recommend that three courses of IVF should be provided to all eligible couples, rather than the one course that 95% of PCTs now offer, writes The Times. It us such a shame that North Yorkshire and York PCT remains one of three PCTs to offer no IVF treatment whatsoever.

I will be contacting them next week to see if this new recomendation will finally make them shift from their position, compel them to act positively and think with compassion towards couples struggling to conceive rather than looking into their collective wallets.

The postcode lottery on Panorama

We watched the very interesting Panorama programme last night. Although it focussed on a slightly different issue to the one we are experiencing, it still exposed the huge flaws in the localised spending on the NHS and the lottery of care that follows.

Perhaps it is time for the Government to become actively involved and ensure a fair and centralised system is put in place. Then we can all be assured of receiving parity in our healthcare needs, rather than finding ourselves unable to receive help whilst someone else, sometimes living on the other side of the street, is able to receive it.

We pay into the system equally - we should be able to benefit from it equally.

IVF on the NHS - the facts

To put the situation in North Yorkshire into perspective on a national scale:

There are 151 PCTs in England, each receiving their budget directly from the Department of Health.

In February 2004 NICE (National Institute of Clinical Excellence) recommended that three cycles of IVF should be provided by the NHS if the woman is between 23 and 39 years old.

At that time the then Health Secretary, John Reid said that he expected all Primary Care Trusts to be offering at least one cycle by 2005, with the longer term aim of full implementation including three cycles of IVF per appropriate patient.

- In August 2008 only nine of the 151 PCTs offer three cycles.

- 138 PCTs offer just one or two cycles.

- North Yorkshire and York PCT remains one of the four remaining PCTs to refuse to offer ANY cycles of NHS funded IVF.

They should be ashamed.

An update

Well perhaps not the news we had been hoping for, but as a result of the last round of tests, Professor Balen has decided that the best course of action to take is IVF with ICSI. So now, more than ever, we will be feeling the full impact of North Yorkshire and York PCT's decision to not fund IVF.

The minimum charge for a single course we have found so far is £3,320, and prices can go up to an incredible £10,000. For a single attempt.

We wonder if they actually care that every resident of their district has to find the funds to privately proceed with treatment?

We wonder if they care that just 12 miles away, residents in West Yorkshire can get assistance with the costs?

We wonder if our tax and national insurance contributions are being distributed fairly so that they can be used to treat other people but not us?

We wonder if the 'postcode lottery' is alive and kicking?

Yes it is - and it's kicking us in the teeth, and the administrator's of our PCT sit there and continue to have the audacity to state that they do provide IVF as their ruling 'does not apply in some cases of exceptional clinical need'.

So if my wife was in the six month window between 39.5yrs and 40yrs old or had a terminal disease, we may be eligible, otherwise we have to remain one of the 5% of the entire UK that does not have access to NHS-funded IVF treatment.

Can you stop kicking us in the teeth now please?

A response in the Harrogate Advertiser

The Harrogate Advertiser has run a letter in response to the article they ran last week. It is a very well argued point and really shows the PCT's decision as being ill thought out. No doubt the PCT will do all they can to avoid providing this vital service although they keep trotting out the line that 'women in real need will be given treatment'. It strikes me that they have not grasped the concept that any couple struggling to conceive ARE in real need.

Still they know how to spend money...

Well bless 'em. The PCT can't afford to provide IVF treatment as recommended by the Government and which 95% of the UK has free access to, but they can afford to build a new hospital car park at a cost of some £5.2 million (which equates to around 1,300 courses of IVF). Of course car parks are very important. They really help patients get better, help cure their illnesses, help research into new breakthroughs in medicine. But I don't suppose that matters when they aren't actually providing a Health Service, just a revenue-generating car park.

No doubt they will argue that it is being funded by York Hospitals NHS Foundation Trust, not North Yorkshire and York Primary Care Trust (still with us), even though it was York's hospitals that caused in part the huge (£24 million) budget deficit that resulted in IVF treatment being withdrawn.

Smoke and mirrors, being wafted and angled by some self-serving bureaucrats it seems.

Our campaign in the news

As mentioned in a previous post, we spoke to the Harrogate Advertiser regarding North Yorkshire PCT's position on providing assisted fertility treatment. We were very pleased to see this article in the newspaper - and on the front, at the top, in big bold type! Hopefully it will get our campaign really going and get a few more people leaving their views on our petition. So if you haven't left a message yet please do so now.

The one thing that made us smile (we have to keep smiling) was the official line from North Yorkshire PCT that 'the policy did not apply in some cases of exceptional clinical need'. So - as long as the female partner is aged between 39 years 6 months and 40 years old, she will be allowed one course of IVF, even though the average chances of success are just 10% at that age (compared to 25% at my wife's age now) or if she has exceptional clinical circumstances. The one example we were given of exceptional clinical circumstances were 'if the woman has a terminal illness which meant she would be dead before she reached the age requirement'. This is simply madness - North Yorkshire PCT are prepared to help bring a child into the world when they know the mother has a low life expectancy, but they are not prepared to help when both the parents are young, fit, healthy and wanting to raise a family together.

Priorities? The only priorities North Yorkshire PCT appear to have are to remove the little red lines on their balance sheet, not to actually help people in need, to follow Government and NICE guidelines on provision of treatment or to consider a thoughtful and sensible approach to providing the services that 95% of the UK has free access to.

In the papers

To help raise awareness of the situation regarding the lack of funding for IVF and other assisted conception methods in the North Yorkshire PCT area, I had a telephone interview with the Harrogate Advertiser yesterday. They have said that they are very surprised to hear about the lack of provision and were very happy to run an article about it in this week's edition. They also said that they will consider running more stories about it over the coming months.

Of course we are not naïve enough to think that things will happen overnight and that we will suddenly get to the front of what will be a long waiting list should it ever be re-opened, but we strongly feel that something needed to be said. infertility is often something couples are ashamed of and they will not stand up to have their voices heard. We fear that it is precicely for that reason that the PCT decided they could afford to withdraw the service in the first place.

We will post up next week once we have seen the final piece and we hope that it may help us and all the other couples in similar situations across North Yorkshire

Professor Edwards (the pioneer of IVF treatment) on the provison of IVF by the NHS

"Every couple should be allowed to have three babies on the health service because this is the greatest gift that you can give any man or woman."

That says it all doesn't it?

IVF on BBC Breakfast News

We are clearly more conscious of it at the moment, but IVF news seems to be eveywhere. Just this morning I switched on the television to be greeted with a piece regarding IVF treatment in the UK.

They were concerning themselves with the fact that 30 years after Louise Brown, the first 'test tube baby' (the common term for IVF, given because the egg is fertilised in a test tube) was born and how the UK lags behind the rest of Europe in the provision of treatment. They were discussing how it seems amazing that the country that pioneered the treatment cannot provide a clear and unambiguous policy on the provision across the country's 105 Trusts. In some areas (nine in total) patients can get treatement that follows Government and NICE guidelines (three courses of IVF). In many others patients can get one or two courses, some with restictions on eligibility such as insisting that one or both partners are non-smokers or that the female partner should be under 35 years old. Others insist the female partner must be OVER 36 years old.

It is utter madness - insist the female should be over 36 years old before she is allowed the treatment - the time of her life when she is becoming, statistically, much less likely to actually succeed wih treatment.

Let's hope that the media attention will make North Yorkshire PCT, along with the other four PCTs that do not provide the service, to sit up and take notice.

I can't say I am holding out much hope though.

My meeting with our local MP, Phil Willis

This morning I had an apointment to see our MP, Phil Willis, to discuss the issue of North Yorkshire PCT's refusal to fund any form of assisted conception.

It was an interesting meeting, interesting in that I heard what I already expected to be the case - that he had already lobbied the PCT over their position on behalf of other constituents unsuccesfully.

The PCT continues to state, in a rather non-committal manner, that it will review its position on funding later this year. Mr Willis stated that he would be contacting both the PCT over the non-committal wording of the last correspondence he received and that he would also be writing to Rt. Hon. Alan Johnson, Secretary of State to put the question to him that the so-called postcode lottery still exists and that his constituents have found themselves in the tiny minority of the UK's population that cannot receive any help towards the cost of IVF treatment simply because other districts covered by the PCT mis-managed their budgets in the past.

What are we doing to help ourselves?

We know that we can't just sit back and expect things to be handed to us on a plate. Since we started trying for a family we have altered our lifestyle in the hope that we conceive naturally. We have changed out diets (more fresh fruit and vegetables - all organic) and cut out alcohol completely. For my wife it was easy as she doesn't drink regularly, but for me it was a bit of a shock to the system as I do enjoy my regular nights out both socialising with mutual friends and with 'the lads'. I have also started taking regular vitamin supplements like zinc and vitamin C - something I have always been cynical of in the past as I believe we all get the vitamins we need in a balanced diet - but at this stage I feel we have to be open-minded about anything that may help us achieve our goal and improve the results of our final test due later this month. I will write a post after we get them to let everyone know if all our changes have made any difference.

Our first thoughts...

My wife and I are trying for a baby. Insofar we have been unsuccessful and have enquired about assisted fertility treatment in case we find that we need outside help to conceive. After an initial consultation with Professor Balen at Leeds Nuffield Hospital we have found out that North Yorkshire PCT will not provide funding for any form of assisted conception.

We have since contacted Jill Fox and Sue Redshaw, both who work for North Yorkshire PCT, and they have confirmed that due to budget deficits, they do not give help to couples who, like us, are struggling to conceive. This is in spite of Government and NICE (National Institute for Clinical Excellence) guidelines stating that at least one course of IVF should be provided via the NHS (the ideal being three courses).

Jill Fox did advise that the PCT will be reviewing their position in the autumn of 2008. Should they decide that they will start supporting treatment again, it will only open up the existing waiting list (some people have been waiting for two years since the service was suspended). Anyone requiring treatment in those last two years will only be able to join the back of that existing list. She wouldn't say how long they estimated the list to be if and when it is re-opened.

On Monday I am going to see our local MP, Phil Willis (Lib Dems) to discuss the matter and I shall post up once we have spoken.

I will also be posting as the weeks and months pass with details of our progress.

Our petition to North Yorkshire PCT to fund IVF

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INSTRUCTIONS
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Click on the 'Comment' link at the bottom of this page to register on our petition - we shall pass the results on to North Yorkshire PCT.

Please feel free to post any comments, experiences and thoughts along with your name and home town if you wish.

Remember that the decision by North Yorkshire PCT was a purely financial one. 95% of the UK are able to receive assisted fertility treatment on the NHS. An official recommendation was made by the Government that it should be provided and this was backed up by the National Institute for Clinical Excellence. Yet North Yorkshire PCT remains one of four PCTs that refuse to offer the service unless the patient meets a very strict criteria - the female must be between 39 years 6 months and 40 years old or have 'exceptional clinical circumstances'.