I am writing to you in the hope that you, or someone in your team, may be able to do some digging in to some seeming inconsistencies and potential compromises and half-truths regarding the Safe and Sustainable Review and the direct review of the Paediatric Cardiology Unit at the John Radcliffe Hospital following the 4 fatalities there.

I was passed your email address by Mark Brayne, with whom I regularly sing, and I have also copied him in this email. He suggested that you might be able to help.

My daughter has had five operations at the JR, and continues to be looked after by Nick Archer, a Paediatric Cardiology Consultant there, she is currently on the waiting list at Southampton for her sixth operation, so we have been following this story closely. I went up to Oxford for the consultation meeting, and have long held misgivings about the proposed new model of care. The announcement this week was an unexpected shock and I really felt the JR would now loose its surgical unit.

This was until I read the press release from Young Hearts, the support group for families involved in the Paediatric Cardiology unit at the JR. Some of the information contained in it I feel casts new light on the review and raises questions about its credibility. This I believe should be subject to further investigation.

For instance, one member of the independent review panel, Mr Brawn, was also Mr Calih Salih’s referee when he applied for the post at the JR, and presumably also for his subsequent appointment at Guy’s. Mr Salih was also Mr Brawn’s registrar at Birmingham in 2005-06. How can Mr Brawn therefore be independent when he has such close links to the surgeon involved? (Mr Salih was the surgeon involved in the 4 fatalities)

I attach a link to the full press release, HERE in the hope that it might inspire someone to take this rather further than the Today program did on Friday morning. I should also add that my husband Mr Neil Marshall has already commented to the Today Program that the interview on that subject was not as in depth as it either could or should have been and was one sided as it failed to cover any point of view other than that of the review panel. As regular regular Today programme listeners and radio 4 addicts we were disappointed by this.

Obviously we are unavoidably partisan in this matter but do believe it should be subject to objective investigation.

I am afraid that although I am happy to give my own views, I do not know anything more about the points brought up in this press release. I can however give you contact details for those that do.

With thanks in advance

WOO HOO THANK YOU GOD!

Firstly he denies the links between the 2 reviews – it would have been impossible for them to not have been influenced by the other review.

Secondly – they are not supposed to have made any decisions yet but they have already said that no possible configuration involves the JR.

They claim that the centre would not be closed but only the surgery service. However how many world class cardiologists will stay at a cardiology centre with no surgery service? We will be left with second best – which is not good enough.

He also talks about surgery being a once off event – but for many children (including Isla) it is not a once off event – these children need continuity of care.

They claim they want to make the network of care stronger, but they don’t say how they are going to do it. With no national NHS computer system, what planet are they on? Isla’s consultant makes a trip once a fortnight to Southampton to meet the surgeons there. What a waste of time. Is this going to be done now by all cardiologists? Travelling up and down the country when they could be treating patients? Obviously it has to be done while there is no surgery at the unit, but is one of the reasons that consultants and surgeons should work at the same unit.

It appears that as parents we have no say at all – despite the Conservative championing choice, and the PM being MP for part of the JR’s catchment.

You can hear other people talking about this on other programs here approx one hour in, and here approx 2 hours in. Kim is especially vitriolic!

The local family support group Young Hearts have released a rather good press release here

There’s a BBC Oxford article here

As for Isla – still no news on a date I’m afraid. We had a call from Southampton asking us to make an appointment to see the surgeon. We have questioned if this is really necessary, though will of course take the surgeons advice, since it would be a whole day trip for all of us. The Nurse (I think?) I spoke to will confirm with the surgeon and get back to us, hopefully with an idea of a month as well.

I have spent tonight making chutney – very therapeutic!

Thank you for everyone’s support

Deep joy – oh well onwards and upwards.

Our family are certainly getting their money’s worth from the NHS!

I am still feeling as if I am in a different time zone.

We all went at the beginning, Isla had her photo taken with all the groups of donors and met them, and then Neil took the children home. I then stayed for a yummy dinner and to present the awards.

Although my arm ached at the end, it was more than worthwhile, to tell Isla’s story, and to tell them all how amazing I think they are. They seemed genuinely touched by Isla’s story, and I know it took all my effort not to cry. I even met one lady who was moved to donate while working with the man who invented the heart and lung machine, inspired by the “blue babies” she was working to save. So glad to have been able to thank her from a “not blue any more baby”!!

I really was overwhelmed with gratitude. Several of them took leaflets about bone marrow donation as well. I feel really honoured to have met these every day saints.

Thank you National Blood Service.

Continued prayer please for correct treatment and a bone marrow match should one be required. I will add a link for signing up to be a donor!

Nathalie

Children back at school, Neil’s students back, and Nathalie working as hard as ever.

Isla sees Dr Archer on Wednesday to discuss the next bout of surgery.

On Tuesday we are guests of honour at an awards dinner for people who have given blood 75 or 100 times to tell Isla’s story.

We continue to geocache! And though obviously worried about Naomi we are all well and healthy.

We would be grateful if you could pray Neil’s niece Naomi, 13 years old, who is in hospital.

Naomi was unexpectedly diagnosed with Acute myeloid leukemia (AML) last Thursday when she collapsed at home in Aberdeen. She has been taken to the Scottish specialist pediatric leukemia unit at York Hill Hospital in Glasgow. A ten day intensive chemotherapy course was started on Saturday however as her white blood cell count was extremely low doctors have not been able to us a general anesthetic to investigate her condition further.

Naomi is obviously extremely ill and the outcomes for leukemia are not good. Please could you pray for her during what will be a very long and difficult recovery process. For her parents Alison and Alan who will have to juggle being with their daughter with work commitments.

The support of your prayers can not be underestimated.

Thank you

Neil and Nathalie

Today was the day Daddy took Isla shopping and then to a cafe for a drink and cake. Thing is, will she be able to keep Callum’s present a secret for long enough??

Can I try again??

I have loads of photo’s to link to – will do that now!

1. Glad to still have a job

2. Glad that no one has been sacked (lets not mention those who supposedly were leaned on to take the deal offered…)

3. Glad that production is still due to start 1st June

4. Glad of the extra holidays

5. Narked that the 4 months which was supposed to be quiet for us and a chance to get some stuff down has been so manic

6. Annoyed that we didn’t get any of the time off, when people who were off all the time banked most of the hours but got 120 hours written off – essentially 120 hours extra holiday.

7. Annoyed that busy as we were we still got pulled off to decorate the mens locker rooms when there were people sat at home being paid to sit at home.

8. Still annoyed that we had to work those snow days, and we even got pay docked for being late when the police were advising people not to travel.

9. Worried about manpower levels and how we are going to cope when production restarts – there is no way we have enough people to do this…

10. Tired.

‘snuff