Congenital Heart Disease – Leaders of the new review talk about the proposed standards

Congenital Heart Disease – Leaders of the new review talk about the proposed standards


Tony Salmon – Chair of the review’s Paediatric
Standards Group: The Paediatric Standards Group represented
every centre in England and Wales. The group included doctors, nurses, psychologists and
parent groups. Sir Bruce Keogh gave us a mandate asking us to make no compromises and to try
and create an ideal set of standards. We took the adult congenital heart disease standards
that had been previously accepted and together with Safe & Sustainable standards we added
significantly to the combination of those standards. Professor Deirdre Kelly – Chair of the review’s
Clinicians’ Group: The new congenital heart disease review is
designed to ensure that we have national standards which will provide consistent support and
service right across the country for children and adults with congenital heart disease.
This will make a huge difference because it will ensure that where ever you are you can
be certain that you will be getting the same quality service. Norman Williams – Past President of the Royal
College of Surgeons: As you will see from the consultation document
we have spent a considerable amount of time considering the standards that are required
for this delicate surgery and we have made appropriate recommendations which I believe
are very important for the future of children and adults with these problems. Michael Wilson – Programme Director for the
new congenital heart disease review: At the time that the review started there
were already a number of pieces of work on standards that existed so there were standards
developed by Safe & Sustainable, there were some standards which had been developed on
behalf of the then national Specialised Commissioning Team and there were another group working
on standards to supplement the Safe & Sustainable standards particularly looking at cardiology,
particularly looking at services in local hospitals. The work we have done as a review
is to bring together all of those pieces of work to ensure that all of them have been
reviewed and refreshed for how things are now. That’s involved a very large number of
clinicians, clinicians from all of the specialist units providing congenital heart disease services
as well as a number of representatives of patients and the public and having developed
a set of standards that we thought were good, those have then been discussed quite widely.
We have taken them to each one of our engagement and advisory groups for discussion, we talked
about them on our visits to each of the hospitals that provide the specialist service, we have
published them on our website so there has been an opportunity for a much larger number
of people to comment and engage with them. Having done all of that we then took the result
of that work to our Clinical Advisory Panel who reviewed not only the standards as they
came to them but also what we had heard during all of those pieces of wider engagement and
helped us to take a view particularly about some of the tricky issues. So I suppose it’s
fair to say that there were a small number of issues on which everyone didn’t agree and
a very large number of issues on which everyone did agree and on that small number of issues
which have been tricky for a very long time the Clinical Advisory Panel needed to make
a judgement call because if there are two views about something in consultation you
have to put forward your preferred view and that’s what they helped us to do. Graham Stuart – Chair of the Congenital Heart
Services Clinical Reference Group: This NHS England review had involved the development
of a number of clinical standards which we feel will be helpful in developing congenital
heart services in England. These include standards for staffing and equipment and standards for
facilities and a blueprint for organisational structure which will allow as much care as
possible to be provided close to home while ensuring that major procedures such as cardiac
surgery will be available 24/7 at top quality units which will be available irrespective
of where patients live, of what non cardiac medical problems they might have and of what
time of day they may present. Peter Weissberg – Chair of the review’s Patient
and Public Group: The whole objective of this process is to
get the very best care for children with congenital heart disease firstly when they’re born with
their condition, when they have their condition treated and when they grow older as adults
with congenital heart disease and it’s not just about the children, it’s about the families
and it’s not just about the surgery, it’s about all the other clinical services that
depend on the congenital heart disease services being the very best that is possible within
our health service. I have been very heavily involved in the Patient and Public engagement
side of this process. We have tried extremely hard to talk to as many people as want to
listen and as many people who want to talk to us about this process to understand the
patient’s perspective in particular and the family’s perspective so that we can come up
with standards that fit the processes that families want to see happen and are not just
guided by what the clinicians feel are most important. Graham Stuart – Chair of the Congenital Heart
Services Clinical Reference Group: The standards have been produced by experienced
clinicians all working in the NHS in these specialties. They are designed unlike previous
standards to cover the full age range of patients with congenital heart disease from fetal life
right up to old age. They’re based on a collaborative network where there will be close links between
cardiac surgical centres, between specialist cardiology and local cardiology centres. Our
aim is that there will be a network of services covering the whole of England to provide care
for patients in England and also interventional care for our colleagues and patients in Wales. Hilary Cass – President of the Royal College
of Paediatric and Child Health: Most importantly for babies who need complex
surgery we want to have the very best outcomes no matter where you live in the country. So
we want every single one of our surgical centres performing to the highest possible standards,
we feel that by making the changes that we are proposing we will improve survival across
the piece. Tony Salmon – Chair of the review’s Paediatric
Standards Group: We have strengthened the areas around mentoring
of surgeons and cardiologists; this is recognising the issue of continuing life time learning
for all professionals from our senior colleagues. How joint operating and joint procedures with
two consultants benefits all, especially the patient. We have stopped short of designating
centres for certain conditions for a number of reasons, every centre should have the experience
required to undertake any procedure that they propose to do. The standards make it clear
that they should be open to families about their own institutions experience and outcomes
and also experience elsewhere in the country. Norman Williams – Past President of the Royal
College of Surgeons: This form of surgery is extremely delicate
and I come at this as a surgeon, not a cardiac surgeon or a heart surgeon but somebody who
has represented the profession very recently. I do believe that the recommendations are
extremely important for the sustainability of this form of surgery in the UK. It is very
important that in appropriate centres there is critical mass, that is, not just enough
surgeons to carry out these delicate procedures but also supporting staff, such of course
as nurses, perfusionists etc. and the centres must have sufficient through put of cases
so that both the consultant surgeons maintain their skills and the trainees, the young surgeons
coming through are trained appropriately and get the experience that’s necessary. The centres,
it’s very important that they are part of a network that looks after the whole patient. Tony Salmon – Chair of the review’s Paediatric
Standards Group: The opportunity for second opinions should
be embedded in the culture of all the units, indeed the NHS at large. All centres should
work as part of their own local networks with the vast majority of decision making being
undertaken in multi-disciplinary teams. These networks of care should also be a functional
part of a wider national network to facilitate referrals to and opinions from anyone who
may have more or a different type of experience. Using telemedicine technology a local network
should be able to discuss individual cases with another network. Surgeons and cardiologists
from other centres should also be free to assist in other surgical centres when appropriate
so that learning is promoted between institutions. Hilary Cass – President of the Royal College
of Paediatric and Child Health: Our children’s services are now matched by
excellent adult services and the very important thing is that discussions about transition
start at an early stage, that there isn’t an abrupt switch from children’s to adult
services but a gradual handover. Although on a whole we expect transition should be
completed by 18, those teams should have such good communication that the transition should
be quite seamless from the young person and their family’s point of view. It’s really
important that services are age appropriate and developmentally appropriate and taking
into account both those aspects both in childhood and through into adulthood. Dr Jackie Cornish – National Clinical Director
for Children, Young People and Transition to Adulthood, NHS England:
The transition from child centred services to adult delivered services is a difficult
one, it’s difficult because not only is this the time when young people are growing into
maturity when they’re changing, when they’re developing, when they’re on the brink of everything
that life holds for them but in addition they have a long term condition which will have
demands on their life and the way they grow up. In every centre that we visited during
the review period groups of young people said how worried they were about transition and
for those who had experienced it, how poorly planned this was and how poorly executed.
Now we have a particular standard that will devote itself to transition, to making sure
that young people are in the centre of these plans to actually ensuring that we start this
process in children’s services in a timely fashion and that we actually communicate with
adult colleagues, perhaps holding joint clinics so that children and young people are not
transferred until the service is robust enough to deliver the very best care for them and
we continue to look after them as they develop into adult life with their chronic problem. Professor Deirdre Kelly – Chair of the review’s
Clinicians’ Group: One of the huge successes of modern medicine
and surgery has been that children who would otherwise have died in infancy now survive
to become teenagers and adults and that’s really fantastic but it is important that
we ensure that the support that they have received through their paediatric care is
transferred with them into adult services – so they are cared for by people who understand
their condition and understand their emotional and psychological needs at that time. Dr J-P van Besouw – President of the Royal
College of Anaesthetists: In the modern day practice of medicine, patients
and their relatives rightly have high expectations of the standard of clinical care afforded
them. In order to effectively deliver quality care we need to be sure that we develop a
set of standard’s that meet these expectations and that centres are benchmarked against them
or reorganised to ensure that they can be met. The standards outlined for the provision
of staffing attempt to ensure that staff delivering care do so in a supportive environment which
facilitates shared learning and career development. They include the provisions for enhanced multi-disciplinary
working. Particular emphasis has been put on the size of professional groupings which
allow all groups of staff to learn from peers and others not only in the ongoing provision
of the service but also future proofing service provision by ensuring that staff in training
have access to the full range of experiences necessary to become confident, capable and
comfortable. Recommendations reflecting this include those on the minimum number of consultants
within a unit, mindful of the requirements for 24/7, all year round access to care. Effective
care is also multi-disciplinary and the co-location of medical, nursing and other staff as well
as those involved in the provision of educational and social support have been at the forefront
of developing these standards. Equally the requirement for the best and most advanced
diagnostic services and medical equipment to support service provision is vital but
also requires appropriately trained staff. The overarching aim of this standards document
is to provide a framework for developing the provision of children’s and adults congenital
heart disease services, to maintain the highest standards of care with optimal outcomes and
to provide an environment for learning and research for the future benefit of all. Professor Deirdre Kelly – Chair of the review’s
Clinicians’ Group: I have had a great privilege of being chair
of the clinicians’ group. We ensure that anyone, any clinician that worked in England or who’s
hospital did work in congenital heart disease was able to join us and indeed they did and
we have huge enthusiasm, motivation and dedication from those clinicians who have been fully
involved in the process and extremely helpful. Dr Jackie Cornish – National Clinical Director
for Children, Young People and Transition to Adulthood, NHS England:
I am particularly pleased that we have decided, as the clinical advisory panel, to actually
recommend that all critical adjacencies are together on one site. The reason I say this
is not just for having them actually available, it’s actually to enable the daily or several
times daily interaction between teams which is so vital when you are looking after a child
with a complex problem and I think that is going to add so much now to the standards
and to the quality of service that we are able to give to these children and to their
families and carers. So to me, I find this absolutely vital. It’s not just a simple matter
of, as I say, having these adjacencies on site, it’s recognising that why for these
most vulnerable services would we chose to do something completely different from any
other specialist service for children that we are currently doing within England. Just
to explain what critical interdependencies means, it actually means having on site as
part of an interactive team all the other paediatric specialities which are necessary
to deliver the total care to a complex patient. We are thinking of things like paediatric
surgery, paediatric anaesthesia, paediatric gastroenterology, respiratory medicine all
together on one site to enable not only dialogue but also close interactions throughout the
course of the day when the situation demands it for these patients. This is invaluable
in terms of the standard and quality of care that we are now going to be enabled to deliver
to children, their families and all of their carers. Peter Weissberg – Chair of the review’s Patient
and Public Group: We also have been keen to make sure that services
don’t stand still. We want to see that a good centre can develop for the future, can do
research in a safe and effective way. Only by doing research can we advance the whole
process of treating children with congenital heart disease and improving their lives. So
it’s important that centres not only provide good clinical service but are able to assess
new technologies in a safe and effective way and look at innovations that might improve
the care of patients as they grow older with their condition. James Palmer – Clinical Director, Specialised
Services NHS England: One of my key jobs is to ensure that we contract
from providers the really best services that are available in the resource package that
we have. Now clinical standards are brought to life through what we call a service specification.
A service specification is a document that can be used by a commissioner going to a provider
and saying we want you to provide that level of service, so a service specification is
a key bit to the matrix of making all this happen. A service specification will therefore
connect the money to the quality. Specialised services covers a whole range of different
service areas from paediatric cardiac surgery here to renal transplantation, heart transplantation
and a significant number of mental health services. We know that all of those services
grow in terms of money growth at a rate much higher than any other part of the NHS. So
it is very difficult each year on year to ensure that we can deliver an increased level
of service with an increased quality where that costs additional money. Any new change
that needs additional money nowadays needs us to find the resources from other services.
Now that’s a challenge and this will be a challenge for paediatric cardiac surgery which
will have to demonstrate as a specialty that they can be as efficient as possible in providing
the services but also meeting the quality standards at the same time. The review is
covering both paediatric and adult congenital heart services and the combination of those
two services working together do have real potential in terms of improving service efficiency
and helping deliver the change that’s needed in monetary terms. There is no new money for
delivering these standards but we are delivering new standards across all of our services and
that’s achieved by a really well constructed programme of savings across all the portfolio
of specialised services so it’s not just required of an individual service area. Michael Rawlins – Chair of the Clinical Advisory
Panel: The panel is composed of a wide range of people
and we have consulted widely on the standards that we are proposing should be incorporated
in the future arrangement for congenital heart disease. The panel includes both patients,
providers that’s the hospitals that provide these services and also health care professionals,
particularly of course heart surgeons. Chris Hopson – Chair of the review’s Provider
Group: The NHS England new congenital heart disease
provider reference group, a bit of a mouthful, what’s that – effectively what we have done
is we have brought together senior executives from each of the acute hospital trusts that
provide congenital heart disease services in England. We think it’s an important group
because if you look back over the history of the NHS’s attempts to review congenital
heart disease services it’s very clear that the views of the senior executives at each
of the hospitals that provide these services really does need to be fed into the process.
Over the last 15 months we have met 4 or 5 different times and our work, in particular
more recently, has really been focused on commenting on and inputting into the draft
standards that we have now started the formal consultation on. We think that it’s a really
important point to have reached because we think that we need real clarity on what standards
the service and each service provider needs to meet going forward. When we have finished
this consultation there will be real clarity on what it is that each hospital trust that
wants to provide these services needs to deliver, that will then provide a very clear path for
NHS england to commission against. We are really pleased to have had the opportunity
to contribute to those standards alongside then provide a very clear path for NHS england
to commission against. those standards. Of course it would be a bit
sad if people waited until April 2016 before starting that process so we have said to providers
that we hope that they will use the year 2015/16 to start to work towards the standards in
shadow form. James Palmer – Clinical Director, Specialised
Services NHS England: Having published standards and then having
those standards integrated to a service specification, patients and their families, children and
others can see what their local hospital is on a local basis.
Michael Wilson – Programme Director for the how do we make sure on the ground that we
are getting what we have said in the specification. The first part of that is that commissioners
use the service specification in their discussions with providers and they will ask for evidence
that the specification is being met. That will be supported by the very important role
of networks. One of the key functions of networks is making sure that all of the providers within
that network are meeting the specification many of which require a networked approach.
In addition to the network there will also be a system of peer review, this is built
into the standards and that’s a process by which people from different providers visit
each other and ask for the evidence that shows that the standards are being met. Supporting
the work of networks and commissioners, the for hospitals and our analysis shows that
for the country overall we think the changes consultation on the standards? Once the consultation
has finished we have engaged a company to analyse all the responses to consultation
on our behalf and we will look at that analysis and NHS England will then construct a response
to that analysis. The principle thing that we will be considering is do any of the standards
that we have put forward in consultation need to be changed as a result of what we have
heard in consultation. Certainly the analysis will be a really important factor in that
but we will also be looking at things that we have heard through other routes as well
– if we do some special engagement with particular groups we will bring that in as well. In the
first instance we will take that to our Clinical Advisory Panel, the panel that signed off
the standards for consultation but the final decision will be taken by the NHS England
board. Having taken that decision we expect to spend next year so that the year starting
in April 2015 running a commissioning process. That’s the process by which we will make sure
that the standards which we have set and the specifications for service will be used in
all of the services that are provided all across the country. In that process providers
will be asked to tell us how they will meet the standards and we will want to see convincing
evidence that they can meet the standards. We expect that in some places providers will
need to work in groups rather than individually in order to make that happen and we can’t
predict, as commissioners, exactly what responses providers will give us. It really is the ball
in providers’ court to show us how they will meet those standards.

Leave a Reply

Your email address will not be published. Required fields are marked *