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?

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?

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 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

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.

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.

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.