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raised, and have had no reasonable response to, relate to out of date data,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 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
worlds leading ECMO units. ECMO or Extra corporeal membrane oxygenation 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 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. Rather 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 Corporial 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 spouse’s career 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 you 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 failed to be 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: http://epetitions.direct.gov.uk/petitions/35788
http://www.mum-me.co.uk/2012/07/how-to-save-a-life.html
