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?

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.

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.

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?

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...

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...

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.

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.

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.

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.

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

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.

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.