Tomorrow is the day

That we tell Isla the date of her operation. Lets hope she doesn’t get too stressed out about it!

Dates

We now have a date for Isla’s surgery – in on 8th Nov surgery on 9th. Then home eventually! The children don’t know yet – we thought we’d let them enjoy the half term first without worrying about it. So please don’t tell!!

My letter to BBC’s radio health correspondent

Mr Brimelow,

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

Great news about Naomi

from Alison her Mum:
Dear all,
More good news. Naomi’s neutrofil levels have rocketed up to 2.5 so that means we are nonneutrophenic. This means we are out of strict isolation and are able to have visitors again. She is also trying to eat again and has been taken off the morphine. So a good result for our 18th wedding anniversary.

WOO HOO THANK YOU GOD!

Geocaching

We had an amazing day today. Neil was off helping friends move house (boo hoo boo hoo) so I and the children did washing homework and piano practice in the morning, and went off geocaching in the afternoon. We ended up down a cold war bunker, exploring a neolithic burial chamber, and seeing a double rainbow. Photo’s are up on facebook now so I’ll put a link up here next.

Oxford and surgery

Many of you will have heard the news about the Oxford Surgery unit. Obviously we are not very impressed with this. I have been making my feelings known on the local radio station here You can find me 45 mins in. Do keep listening and also listen to Kim Homewood who says so much more of what I wanted to say – she is on just after the hour mark. Then there is some sort of reply from the commission (at 1h43) – that I have a huge number of issues with.

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

Update on the girls – Naomi and Isla

We had the following email from Naomi’s Mum this evening. I have no idea what it means but that it is good news – thank you all for praying!

Just to share with you the exciting news that today Naomi’s neutrophil levels went up from 0.0 – 0.2 which is cause for a minor celebration.  However the lumbar puncture and bone marrow test next Tuesday will give us a better clue as to whether or not she is starting to produce the right type of cells or not.  Still lots of platelets and blood needed most days.

Love Alison

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

 

 

Mid life crisis hair??!!

Isla

Went to see the consultant today, and as we suspected she needs more open heart surgery, probably before Christmas certainly before next Summer. Probably in Southampton, given the current Oxford Politics.

Deep joy – oh well onwards and upwards.

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

Update from Naomi’s Mum

Today Naomi has actually put some clothes on.  Still getting platelets of blood chemo, and loads of antibiotics.  Probably another bone marrow. lumbar puncture on Friday at the end of the first set of chemo. So far no major infections.  Doctors seem quite pleased.

Glasgow city council have a schools service so teachers have already been in to chat.  Today we had an English lesson.  Tomorrow its maths!  Naomi is being very good and spoke to her friend Lucy last night.  She hopes to visit at the weekend.

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