In Response to Roger Boyle

Well it would seem that my guest blog on Alastair Campbell's website has rattled a few feathers and he has posted a response written by Roger Boyle. Those of you who live in the South may have seen him in the local papers last year: http://www.dailyecho.co.uk/news/campaigns/have_a_heart/9047018.UK_s_top_heart_expert_backs_children_s_heart_unit/
Well if you would like to read this response then you can by going to: http://www.alastaircampbell.org/blog/2012/09/06/a-response-to-guest-blog-attacking-review-of-childrens-heart-surgery-services/
My response to this will, I hope, be published on the page shortly, however in the meantime here it is.

I am extremely grateful to Alastair Campbell for offering me this platform to generate a discussion. It is interesting to read the response, as both statements, from Sir Ian Kennedy and Prof Boyle, are defending the need for change, something I too understand and support.  My blog is NOT a criticism of the review aims, but an attempt to raise awareness of the difficulties in getting issues such as this, into the public domain, where questions and concerns can be addressed. The clinical concerns about the outcome should be raised in an appropriate forum, and I understand that yesterday the Overview and Scrutiny Committee in Leicestershire and Rutland followed the example of Lincoln OSC and referred the matter back to the new Minister of State for Health.

Having read the response from Prof Boyle, and without getting too bogged down in the clinical aspects of the review, I would like to raise a couple of points.

Firstly I find it disconcerting that there appears to have been a large element of “picking and choosing” which aspects of the public consultation to listen to. The case for “quality” as a measure of determining which centres to commission is fully reliant on the public consultation results. And yet 60% of the respondents supported Option A – a configuration of Newcastle, Liverpool, Leicester, Birmingham, Bristol and 2 London units, with the remaining 40% divided between 3 other options. Why then was this aspect not taken into consideration as option B was finally presented as the option of choice?

Secondly I remain confused by the apparent contradiction of the case for quality and the closure of world-renowned centres. The Brompton has a history of research and development second to none, while Glenfield offers one of the best ECMO units in the world. According to the case presented at the OSC, the mortality rate for patients requiring respiratory ECMO is 20% lower at Glenfield than any other unit in the country, and comparable to the lowest in the world.  In an open letter to Andrew Lansley, from the international ECMO community, they warn that closure of Glenfield will lead to patient deaths. The doctors, from North America, Asia, Australia and Europe, led by James Fortenberry, chairman of the international Ecmo Leadership Council, said: "We are united in our dismay at the proposed move of ECMO services from Glenfield. While not citizens of the UK, we are citizens of the greater ECMO community and we offer our experienced observation. Movement of an established unit as that at Glenfield in the manner described will have profound negative consequences on the outcomes of patients needing ECMO. Providing ECMO requires a small village of physicians, surgeons, nurses, perfusionists, respiratory therapists, blood bankers and multiple other vital cogs in care. The institutional memory and expertise coherent in the team cannot be quantified. It's clear, however, that the Glenfield team exemplifies the results of this expertise". They also said the Glenfield programme was "recognised as one of the finest ECMO programmes in the world.” Surely this is quality?

 

In their letter, the doctors said: "We are disappointed, as the community of ECMO experts, that more extensive consultation was not requested. We would all have been glad to have offered experience and we all remain willing to do so.”

This final statement from the international experts only serves to fan the flames of my concerns. The same responses are repeated in support for the need for change, while the true concerns continue, unheard and unaddressed.