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'.