Knowledge Bombs

Recently I wrote a blog called “Halfway Through” about how the years building up to Nico’s inquest and the actual inquest felt like the first half of our campaign. I saw the Independent Investigation which would follow as the second half.  This second half is about to begin.

I never thought that we would be a family who lost a child, who went to an inquest or needed an investigation. Yes, we had a son who had cerebral palsy, but he was just another piece of the mix which made up our family.  We didn’t feel sorry for ourselves; we thought we were lucky because we had happy, healthy children and a loving family home.

I always knew that when Nico died my world would never be the same again, but I thought (when I ever did think about it) that this scene would play out in a warm, hushed hospital room, with all his family close around him and he would slip away to the angels, peacefully and calmly, knowing how loved he was. A chest infection I thought maybe, or possibly heart problems.  Looking back I don’t know why I could have ever thought that – as he never had either!  But I suppose it was my way of dealing with the thought that he might go before us, but I imagined him to be in his 40s or 50s by then.

But it wasn’t like that at all.

One of the things I learned from our inquest experience was that if I wanted something to be the way I wanted I needed to be far more involved and far more proactive. I mustn’t sit back and let other people do the work for me, hoping that they would do everything as I liked.

So when I was contacted by the Oxfordshire Clinical Commissioning Group to say that they were commissioning an independent review into Nico’s death I knew that I had to make sure that I had a part in this. I asked Beverley Dawkins to be part of it too.  We began initial work within weeks of the inquest verdict and I remember her saying that we shouldn’t write to the OCCG too quickly after the inquest, so our first letter was sent to them in February 2015.

Things moved forward terribly slowly and in jerks with long periods of nothing in between. We were told the panel would sit on 24 March to decide whether to go ahead with commissioning an investigation.

Beverley did her best to speed things up a little behind the scenes but it was May before we heard that we had been turned down for a Serious Case Review but they wanted to go ahead with the Independent Review. Beverley assured me not getting a Serious Case Review was good as they had a far narrower remit and you had little/no influence over who was on the review panel.  She knew of cases where the families had been disappointed and distressed by the outcome, feeling that the panel had no real knowledge and understanding of the issues of their child’s death.

The Director of Quality wanted to start work on the review as soon as possible and asked us to meet with her at the OCCG offices at the end of May. The MN and I went and so did Beverley.  There we met the director, the senior quality manager and the assistant director of nursing from NHS England.  I dreaded the meeting but it was actually so very different from my inquest experiences I wrote a blog about it “Changing Trains”.  Just being listened to and taken seriously was such a very, very big deal for me.

Then I spoke about my hopes for the investigation in a radio interview. For the first time in a long time I felt that good things were going to happen.

Then the wheels came off……………………..

It was pretty simple. The director of nursing left for another job and the senior quality manager fell ill and had to suddenly take quite a long time off work.  In their absence the director became concerned about the length of time everything was taking and sent the terms of reference to various people and asked them to tender to be the investigator for the case.

The problem was that she sent the wrong terms of reference to the wrong people and I had to just watch as the wheels came off and my hopes for the investigation fell into the ditch.

But I had learnt. Beverley rolled up her sleeves (again) and between the two of us we got it all back onto track.  BUT we could not have done this without the director being so willing, so accommodating, so wanting to get it all right.  She suggested that Beverley and I wrote new Terms of Reference for the investigation.  I thought it would be hard, but I wrote swiftly, from my heart and then Beverley tidied it, reminded me of a few things, acronym-ised it, put in the correct jargon and we sent it off.

By then our poorly quality manager was back. She added some more good stuff to the new ToR and we were good to go!  It was/is a stonker when it comes to Terms of Reference and most importantly for me, it’s what I want to say.

Everyone who was approached wanted to tender for it. We had some BIG hitters in the disability justice world to see over two sets of interviews.  People who work at this level are very, very busy (sadly).  There’s a lot of wrongs out there which these people are busy righting or at the very least, shining a bright light onto.

I was invited to be part of the interview panel and for me, interviewing was just a succession of knowledge bombs going off in my head. “Knowledge bombs” are what I’ve learned to call them – those statements which are made to you and which once you hear them, they’re a game changer.  What these people had seen and done and what they had to say were just a barrage of knowledge bombs.

Everyone was great and I would have had them all and made a “super team” (the equivalent of Batman, Spider Man and Wonder Woman all fighting disability injustice together) but this wasn’t allowed. So we chose one.

I think we have chosen well. Fresh from their work on the Saville Enquiry, HASCAS lead by Androulla Johnstone will be heading up an independent review into the death of my son, Nico Reed.

I know they will turn over every stone, look into every corner, no detail will escape them. They have dealt with unpleasant things already, this will not faze them.

I may not like everything they find. I may not agree with all their findings, but I know that it will be very, very thorough.  They have funding for an investigation lasting anything up to a year, though it’s more likely to take 7-8 months.

They will make no statement or comment and nor will Oxfordshire Clinical Commissioning Group, until the review is concluded and the results published.

But I, on the other hand, intend to drop an awful lot of knowledge bombs into this blog over the next 8 months. Because I can and because I know.

And because I’d like you to know too.

Nico's Photos_0011

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4 thoughts on “Knowledge Bombs

  1. Wow wow wow wow wow wow and wow!!! I want to dance around the kitchen for the rest of the evening – I love your tenacity, your graciousness and your vitality, and I have a feeling that wherever he is, Nico is beaming with pride and love for his wonderful mum. What a team he has on his side and so great to know that your experience of the guys at NHS England matches my own. xxx

  2. Rosi very well done for keeping the wheels on and turning. The appointment to head up the review sounds so right. A monumental task to get to the point of interviewing but how positive to have the big hitters wanting to come on board. I think your input is invaluable, any investigations/reviews are pointless when those conducting and participating lack fundamental knowledge of specific health issues and fail to hit on the actual concerns. PHSO was an abysmal example for me of cluelessness. I am always worried about published comment ! I can appreciate it is a review without jurors and as you say nothing will be published until the review is concluded. Are you free to blog meanwhile ? If you are bring on the knowledge bombs, so many people I know have scant guidance and support and operate in half light.

  3. Thanks for a great comment Nic. I put a lot of work into getting this investigation right as I’ve seen for myself what the result can be when so called investigations are badly done. But I haven’t done this alone and could not have achieved what I have without the support, guidance and willingness to achieve of the others. This is very new for me, but it isn’t for them and their expertise has been so necessary. Over the next few months I’ll say everything I can to tell more about our story but I’m going to have to manage it cleverly (not always easy for me!) as I can’t anticipate the outcome of the investigation or it’s findings – if that makes sense! So I’ll tell some stories and keep people interested (hopefully) while in the background the investigation goes on.

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