More on Safe and Sustainable - proposed changes to children's heart surgery service in the UK

Spent this morning at a Health Impact Assessment stakeholder forum where we discussed the impacts, mitigations and opportunities of the proposed changes.  As many people as possible need to provide their comments using the response form before July 1st, this is your opportunity to feed into the process.

Before you complete the form, you might find it helpful to at least take a look at "Safe and Sustainable: A New Vision for Children's Congenital Heart Services in England - Consultation Document" to increase your understanding of what the process is trying to achieve and how they arrived at the four options that are under consideration.  Although you may have read media reports that suggest this a cost cutting exercise, it's important that you understand that 

professional associations and national parent groups, who take a global
view of these issues, have repeatedly called for a review of children’s heart surgery services.

Although this is a direct quote from the consultation document, I include it here because I know from personal involvement that this statement is true.  The aim of this whole process is ensure that this is a national service, with national standards that ensure that all children get the very best care wherever that is provided.  Whilst the majority of families are already happy with the care their child is receiving, realistically most have no experience of another unit with which to compare, but national support groups are ideally placed to see a more national picture and have been heavily involved in seeking these changes.

 

Parents are naturally concerned about how these changes will affect them personally, but in order to make the best decisions, it is vital that everyone looks at the proposals impartially so that the focus is on the most important issue, that of giving children the very best chance in life.  When thinking about these changes we also need to understand that they are not recommending closure of any units, the proposal is only to reduce the number that actually undertake surgical procedures, which would mean that families will only potentially have further to travel when a child is having surgery and for nearly 98% that will be only once or maybe twice in their life.

We need to ensure that during these times, families are given better support to overcome the difficulties that may be compounded by being further from home but whilst recognising these and other issues, we cannot lose sight of the evidence that supports the need for change.  Evidence that shows a relationship between the number of procedures and surgeon undertakes each year and the outcomes for the children involved, not just looking at mortality but also morbidity.

It's also worth remembering that whilst this is a national process, it will not be the first time that a heart unit has stopped carrying out surgical procedures yet remained as a cardiac centre.  During my 20 years involvement I have seen several similar changes - in Scotland, Royal Hospital for Sick Children in Edinburgh sends patients to Yorkhill in Glasgow for surgery, Manchester Children's Hospital uses Alder Hey Children's Hospital in Liverpool, the University Hospital of Wales in Cariff sends patients to Bristol Children's Hospital and when the Royal Brompton and Harefield Hospitals combined, surgery stopped at Harefield.

So take a look at the consultation document, at the very least read section 2 and then make sure that you complete the response form online or request a hard copy and check out details of the consultation events for one in your area where you will have the opportunity to hear the proposals in more detail and discuss your personal concerns.

 

Safe and Sustainable - proposed changes to children's heart surgery service in the UK

Well I've purposely stayed away from this subject till now because I understand how high emotions are running in many parts of the UK over these proposed changes, but about a week ago there was a comment on the DS UK list that prompted me to write something down.

As I understand it there is a huge national review of heart services being undertaken at the moment.  I'm sure Penny will give you a better idea of  what is happening.  I believe it's about improvement, and giving all children an equal chance of survival and a good outcome, no matter where they live.

So as the bulk of it was already written, I figured I might as well post it here on my blog too.  Hopefully it may clarify the situation for some people, at least as far as my position on the changes and why I have not accepted invitations to sign up to campaigns to save individuals units.  I must stress that these are my personal opinions, but I do not feel it is inappropriate for me as Director of Down's Heart Group to express them here as they are based on a national perspective after over 20 years working and liaising with all of the UK units and not reflective of my own brief personal experiences at one individual unit in 1989.  I have met very many of the medical staff who may be affected by these changes and heard firsthand accounts from parents about probably all of them - they are definitely amongst the most gifted and dedicated cardiac teams in the world and we need to take steps to ensure that the UK retains that expertise.  (only a few days ago one of our surgeons was mentioned in an Olivier Awards acceptance speech).

And I'd like to thank the surgeon who kept my baby daughter alive: Choreographer tells the harrowing story behind his awards acceptance speech

Getting back to 'Safe and Sustainable', I think I have a pretty good understanding of what this is all about, having been involved in much of the consultation process that has been going on (for far too long now) and attended all the general meetings.  What you have to remember is this is not something that happened overnight, originally it all started about 10 years ago and the whole point is not a cost cutting exercise as it has been referred to.  It is not actually something that has been government led, it came out of some of the parent groups asking why a few of the recommendations that came out of the 'Bristol Inquiry' had still not been addressed, particularly in relation to ensuring the best clinical outcomes for children undergoing heart surgery. 

 

One of the facts that had been established from research was that there is a correlation between the success rates (both mortality and morbidity) and the number of procedures a surgeon in involved in - basically you need to keep practising to keep up your skills. In some units there is not the capacity for an agreed minimum of operations to take place in a year, so these surgeons are not getting the opportunity to fulfil the criteria and maintain their skill levels.

There were also issues around units with only one surgeon and the problems encountered when they were on holiday or off sick as well as training and progression - with a team of 3 or more surgeons in one unit, it is possible to have one very experienced who mentors other colleagues of varying experience and there is a continual progression as the more senior ones retire. There is a real lack of paediatric cardiac surgeons here in the UK and a few of the really excellent ones have recently retired or will soon do so and if things continue the way they are we will be looking for more and more surgeons from overseas.

The consultants and cardiac teams themselves recognise all of this and whilst naturally none of them wants their own unit to close, they have pretty much all been on-board with the rationale behind 'Safe and Sustainable' since the beginning.

So why has it taken so long? Well one of the reasons was the last General Election when non of the politicians wanted to rock the boat in their own constituencies and since then it is because there has been so much work undertaken in consultation and visiting units etc. to find the best way forward. In an ideal world the Commissioners would agree how many units were needed, what facilities they needed and how to distribute them geographically and we would build 6 or 7 brand new hospitals to meet that need. But of course that's not an option, so a great deal of work has gone into looking at all the possible different options and finally coming up with 4 for further consultation. I attended the meeting about a month ago where there was an hour long presentation explaining the whole process that was gone through and there is a document you can view on-line that details it all (but I'll warn you it's about an inch thick).

So to cut to the chase and clarify - some units will stop providing surgery, but they will continue to do everything else they do and there are also plans to increase knowledge locally with designated paediatricians with cardiac specialist training. In making the suggestions they have, they have taken into consideration many things including:

       * number of procedures
       * access to other services as many kids have other medical
         issues too
       * retrieval times for sick kids
       * national specialist services such as transplantation and ECMO
         and whether these could be relocated
       * population density

and many more. Whilst we would all like to have a specialist centre on our doorstep and being close to home is desirable during such a traumatic event as your child having heart surgery, there are many parents, who for varying reasons, have travelled the length of the country for their child's operation. Some defects are so rare that only one or two units have experience of repairing them, that some families already have no option - if your child needs a transplant they currently go to the Freeman in Newcastle or Great Ormond Street in London. Cardiac surgery on congenital defects is quite different to that in older patients with acquired issues and then you have to add the size of the heart into the equation and the specialist intensive care required afterwards and it becomes obvious that this is not a procedure that can be done in all local units, so depending on where you live you may already have to travel some distance to a cardiac centre.

I don't doubt that these changes will sadly result in some children dying who might otherwise have survived if their local unit had remained, but I believe that we have to weight against this not only the number of children that will survive who wouldn't without these changes, but also the quality of life of those who survive, because it's a harsh fact that whilst some kids survive as a result of surgery, during the process they sustain neurological damage.

The whole idea of 'Safe and Sustainable' is to build on the fantastic service that we already have, but to look to the future and how we can ensure that the service not only survives for future generations but also improves. We have to take what was learnt from the Bristol and Brompton Inquiries, recent issues surrounding Oxford and do everything that we can to ensure that these mistakes cannot happen again - we cannot be complacent and say "it's working well so leave it alone", we have to be constantly looking to develop and improve in-line with the progress constantly happening in the field of congenital heart disease.


Well that's me off my soapbox - I hope that perhaps it helps explain a little more to some parents.   Yes a move will be disruptive I know and you have an affiliation with your unit and it's staff (I fully appreciate that - I feel the same about the cardiologist and surgeon that treated my son), but if you can step back and take a more national perspective, hopefully you will see the rationale behind these changes.

if you want to read more check out

Safe and Sustainable website

Children's Heart Federation website

Central Cardiac Audit Database