Fairly low under the political radar, a review has been going on into the issue of children’s heart surgery. Thankfully, the number of children likely to require heart surgery is small, so it is not an issue directly to affect the majority. But to those it does affect, nothing could be more important.

So with all the other big stuff going on politically, particularly with regard to the economy, health secretary Andrew Lansley may think he can get through this without quite the trouble he had over earlier reform plans.

But it is clear there are concerns not just about the issue, but also the way in which his department is handling it. Teacher Kathryn Batten has been cajoling me via social media to get involved. It is easy of course to generate outrage at the planned cut or closure of any health service, and often things may be more complicated than they seem. So I wanted to brief myself a bit first, and look into it a bit more deeply.

As a result I have asked Kathryn to post a guest blog here because I think it gives a measured and reasonable analysis, but clearly draws attention to issues and difficulties the government needs to do more to address. A link to Kathryn’s blog, and to the petition she wants people to sign, are at the end of the post.

As a politics teacher, who unsurprisingly has a special interest in children’s services, I have watched the review into children’s heart surgery unfold with interest.
Although the aims of the review, (to concentrate or centralise services, in order to create higher volume centres) is essential in order to improve outcomes, the manner in which the review has been performed and the lack of accountability and responsibility for the outcomes is extraordinary.

Closing services will always be a political hot potato, and Andrew Lansley has surpassed himself in his attempted to distance himself from the outcome.

As with all nationally commissioned services, the final ‘sign off’ is the responsibility of the Minister for Health, and was a decision that Mr Lansley took on the 13th July. Interestingly, local MPs had secured a meeting with him the following Tuesday, but he took the decision not to wait to hear the opinions or concerns of the MPs but to go ahead ‘on the advice of clinicians’. This group of clinicians represented the hospitals commissioned. NONE of the units decommissioned had a representative on the panel.

Their findings were presented to the Joint Committee of PCTs, who concurred with the recommendations and submitted them to the Minister. The fact that this group will be disbanded in the near future, under the reconfiguration of the NHS, could be interpreted as a clever manipulation of outgoing organisations to deflect the heat from a decision truly made by the Minister for Health.

There are many issues arising from the consultation, which demonstrate lack of consultation and lack of insight.  Of greater concern is the increasing realisation that no answers to these issues are forthcoming and no responsibility for the decision is being accepted by the Minister and his Department.

Briefly, some of the issues that I have repeatedly raised, and have had no reasonable response to, relate to out of date data, capacity and ECMO (Extra Corporeal Membrane Oxygenation i.e. heart and lungs) mortality rates.

This review should have been set up to look at Congenital Services; instead, there are two reviews, one for the paediatric (babies and young children) component, and another for these same patients as they grow up. This is despite the obvious inter-relation between the two. They are operated on by the same surgeons, cared for by the same team and reviewed by the same cardiologists. This is a move that has been accepted as a major failing by all those involved in the review.

Cynically, I could suggest that this will mean that all those involved get paid twice.  £750,000 was spent on PR alone in preparation for the initial review. The remaining costs have been withheld, despite repeated requests under the Freedom of Information Act. The impact of failing to incorporate the two reviews is being completely overlooked. How can there be any form of consultation for the older patients, when the reconfiguration of services has been agreed and signed off?

The consultation document that was made available for public comment is based upon flawed data.  The data relating to actual operations is derived from the period 2002/03 to 2006/07, which is stated to be the “last available data” [p206]. Underestimation of number of births, failure to incorporate the patients who will be flown over from Belfast (oh yes, that review was kept quiet, and separate) and failure to look at the increasing complexity and requirement for surgery in particular ethnic groups, all points to a significant underestimation of the number of cases which will be performed in the next 20 years.

This entire argument is flawed from the start, as the data represents neither current activity nor the true need. The data used to determine the recommendations is flawed. Patient flows in particular,show a lack of insight, and are being used as an argument against the review down the East of the country (where no service will be offered, following recommendation of closure of both Leeds and Leicester).

Would you travel past a commissioned unit 30 miles away from your home to another 90 miles away, because it has been determined that is where you need to go to ensure that the unit further away has sufficient patients to maintain adequate service provision?

Within the new patient flows, this will be the case for some Midlands patients who will bypass Birmingham and travel to Bristol. If you refuse, and stop at the commissioned local unit, what will happen to the waiting lists there? Surely patient choice is a founding principle of the NHS?

Of national concern is the closure of one of the world’s leading ECMO units. ECMO  is a bypass for heart and lungs, which allows them to rest while recovering. Glenfield in Leicester has a survival rate of over 50% higher than any other unit in the country, and is comparable to the best in the world.

In a statement by the Leicester University Hospital Trust, they demonstrated that over the past 10 years this would have equated to the additional deaths of 62 children, if they had not performed at this high level and performed at the acceptable level of the other units in the UK. Respiratory ECMO, under the new plans, will be moved to Birmingham Children’s Hospital. Although this hospital is internationally renowned, by their own admission they “have not done a respiratory ECMO case to date”.  How, therefore can this move be positive? How can a decision like this be made without so much as undertaking a risk assessment or health impact assessment?

These clinical issues are being highlighted by clinicians, however the political responsibility to facilitate their discussion in an open forum. Following the MP scandal, we are repeatedly reassured of the new transparent system. How can we then explain this failure to answer our questions? Why is the identical letter being circulated from the Department of Health, irrespective of the questions asked? How is this democracy?

The planned termination of the paediatric heart services at The Royal Brompton, Leicester (Glenfield) and Leeds General Infirmary raises further concerns.  It appears that there is a general assumption that the surgeons operating in these centres will remain in post until such time as their centre is closed, at which point they will either transfer across to one of the other centres or they will leave the NHS on termination of their contracts.

I know that this will not be the case and that these highly-skilled paediatric specialists will view such options with disdain and seek to move at the earliest opportunity in order to further their careers within their specialisation.  They are not going to move sideways into another centre; they are certainly not going to move downwards; and they will definitely not remain to perform adult services.  In the event that these surgeons receive a lucrative offer elsewhere and move before the scheduled closure of their centre, what contingency is in place to cover the subsequent hole in service provision?

Addressing Leicester (Glenfield) specifically, the population within the city of Leicester alone has increased by 16% since 2001; more than double the national figure.  The majority of that population are of Indian sub-continent ethnicity, a group which, statistically, is more likely to suffer congenital heart disease than any other.  Consequently, the decision to terminate paediatric services at a hospital strategically located within the community makes no sense.

Demographics have been ignored in a review process that has focused too closely upon a narrow set of clinical criteria thus overlooking the wider picture. It is akin to a London veterinary practice devoted solely to the treatment of sheep.

One assumes that the majority of Leicester (Glenfield) patients will be referred to Birmingham Children’s Hospital, which will require expansion in order to accommodate the increased numbers.  Some of the Birmingham Children’s Hospital’s buildings are magnificent examples of Victorian red brick construction and enjoy the protection afforded by being Grade A listed; the downside of which is that alterations and extensions are subject to restrictive planning consents.  The entire complex is located within the busy centre of the country’s second largest city and in the stranglehold of  two major dual carriageways, the Victorian red brick Law Courts and a number of multi-storey buildings.  Expansion outwards is nigh impossible.

Leicester (Glenfield), on the other hand, is located within a very large green-field site with more modern buildings that would enable major expansion. At present, the Freeman (Newcastle) and Great Ormond Street (London) have Extra Corporeal Membrane Oxygenation (ECMO) beds but Leicester (Glenfield) is unique in that it is the only one with a complete ECMO unit providing cardiac and respiratory facilities to children and adults.

Closing down the unit at Leicester (Glenfield) and transferring the service to Birmingham Children’s Hospital removes the only facility within England to provide respiratory ECMO to all ages.  Its importance to adults with respiratory problems cannot be overemphasised in the light of its criticality during the 2010/11 outbreak of H1N1 influenza (colloquially called swine flu). After closure of the Leicester unit, where would adults receive respiratory ECMO treatment?

Historically, ECMO was brought to the UK by a Leicester charity, when the NHS refused funding. It has been developed over the past 20years and Glenfield is now one of the world leading experts of ECMO with a mortality around 20% lower than any other unit in the UK (ELSO database).When relocating any specialist provision it has to be borne in mind that its assets are composite.  It may be a relatively simple operation to move the physical assets (equipment) but persuading the human assets (staff) will be a different problem.

I have already stated the position with respect to surgeons and a similar situation may prevail with respect to support staff, especially the married ones who will have their spouses’ careers and the stability of their children’s education to consider (among many other things). Expertise can be lost quickly – unfortunately, it takes much longer to regain it afterwards.

An international ECMO expert, Kenneth Palmer, has already advised of the possible clinical consequences of this closure action, to which I can only say amen. Mr Palmar also claims his recommendations were not only ignored, but that he was misquoted when asked for information by the panel. Furthermore, there has been no risk assessment or health impact assessment of closing the ECMO unit down.

These are just some of the issues which have not been considered, in a review which international experts are stating will cost the lives of many children. The final “decision’ was made by the JCPCT, which will be disbanded in the near future. This in itself demonstrates the clever manipulation of an outgoing organisations to deflect the heat of a decision truly made by the Minister for Health, and as was demonstrated by his failure to wait and discuss with MP’s, it shows a  disregarded for colleagues as well as the public. I feel strongly that the public must hold the government to account and this can be done by signing the petition to ensure that it is debated in Parliament.

The petition can be signed here

Kathryn’s blog can be found here