Safe and Sustainable Surgical Services for Congenital Cardiac Surgery
Where are we now on the 7th July 2010?
Over the last three months the Safe and Sustainable Review and recommendation process has been moving on swiftly.
Following the publication of the minimum standards that will be acceptable at every surgical unit, each of the current surgical units in England submitted a bid to be considered as one of the surgical centres providing a world class service in the future.
An independent Review team headed by Sir Ian Kennedy visited each of those units and reviewed not only the surgical service of the present but also the projected services needed for the next twenty years. The Review team also looked at services for the whole child, PICU, accommodation and parking and some of the support services like the Cardiac Liaison service and Psychology service.
This review team will be presenting their finding and recommendations to the National Specialist Commissioning team in July.
Who are the National Specialist Commissioning Team?
The national specialist commissioning team is an organisation within the NHS that looks at the funding of specialised health services. The treatment of Congenital Heart Disease comes under their umbrella. This national team has representation from each region as there are 10 regional commissioners who represent the need for specialist medical services within 10 regions of England. Their role is to look at both the regional and national provision of specialist services. For some areas of care there needs to be a full service in every region and for others the service will be placed where there is expertise and accessibility.
User Engagement Events.
Throughout the last two months there have also been a series of User Engagement events. These events were arranged so that users of the Congenital Cardiac Services could learn a little more about the process for change and then have an opportunity to express their concerns about the service changes proposed.
I attended every event except the one in Plymouth which was ably attended by Jo Lovell and Julie Fairman on LHM’s behalf.
Although there was some 2,000 miles of travelling over that period it was lovely to see so many of our members attending the events, expressing their concerns and learning more about the process. They were also, in most cases, a really good advocate for their local unit and the services that it provides. It was also good to catch up with the many medical teams throughout the country and very nice to have received a number of complements about our work and invitations to visit the units again over the next year.
At each event there was a panel made up of members of the National Commissioning team representatives of the Regional Commissioning team that commissions services in each of the current areas of care, a medic who had been involved with the building of the new standards of care and, in many cases, a Paediatrician with an interest in Cardiology (this is a growing group of Paediatricians who are based in District General Hospitals. They offer normal general paediatric care but also work with their regional Cardiologists to offer joint cardiology clinics and diagnostic support to patients within their local area. Currently there are 90 of these paediatricians. The long term plan is develop the training and mentoring of these doctors to ensure that there are more paediatricians with a greater understanding of the needs of children with congenital heart problems spread throughout general paediatric care).
Mark Porter, TV GP, facilitated and led the event at each meeting. He ensured that the users had plenty of opportunity to ask their questions or raise their issues and if he felt that questions were not being asked he specifically represented the users to the panel.
At every meeting he and the panel’s standards representative reminded the audience that currently there are 31 surgeons in England doing some 3,600 operations between them spread through 11 units.
The Standards recommendation will be to have 4 surgeons operating on at least 100 patients each in each unit so each unit will be expected to do a minimum of 400 operations a year. There is also a recommendation that there will be a minimum of 7 Cardiac Liaison sisters in each region and that there will be joined up care from diagnosis and throughout life.
If you would like to look at the new minimum standards of care visit.
www.ncg.nhs.uk/index.php/safe-and-sustainable-programmes
What were the common concerns raised by Users of the service?
Highly skilled surgeons.
Parent
Our surgeon/surgeons are all highly skilled and have been able to perform life saving surgery on my child why would it be right to lose surgery at our centre?
Panel
Currently there are 31 surgeons spread thinly throughout the 11 surgical centres. All of those surgeons are needed to maintain the surgical services of the future. However it is no longer safe to expect a surgeon to work every day of the week, be on call every other night, operate on emergencies in the night, train junior staff, take outpatient sessions, conduct research and provide the cover needed when their colleagues take leave.
For the safety of patients, the maintenance of highly skilled and experienced surgeons and the welfare of the doctors there needs to be a larger grouping of surgical services.
Parents
How will the commissioning team ensure that surgeons skills will not be lost abroad if changes are made to the units that they currently work in?
Panel
The Congenital Cardiac Service needs every existing surgeon to maintain their practise in England. The Commissioning team will work to ensure that the specialist teams needed in the England will be able to move easily to the units designated to provide surgical and interventional services.
Cost of the proposed changes
Parent
Can parents be reassured that the changes being made are not just a cost cutting exercise?
Panel
Until the proposals are presented for consultation in October it is difficult to know how much any changes in the service might cost but any building of the service to ensure a higher standard of care is more likely to need a great deal of investment rather than any cuts in costs.
Personal, friendly, service.
Parent
Will the new services be able to offer the caring and personal service that we have been able to get from our current local unit?
Panel
The reconfiguration of the service will still allow for families to receive most of their medical care and support from their current unit. They may have to travel for surgery or Cardiac Catheter intervention.
The new service will necessitate that communication between units is a key priority.
A network of care will be created in each region this will include the Cardiology service, the surgical and interventional service, district hospital services and care and medical treatment in the community.
Emergency travel with a very sick child.
Parent
If my child became very sick and needed to be seen at the hospital quickly what care would they receive under the reviewed service?
Panel
All the Cardiology services will remain in the units as they are now. There would be a cardiac Doctor and a cardiac ward where a sick child could be managed. If they needed emergency surgery the cardiologist would then stabilise their condition and transfer them to the surgical team that could offer them the best care for their specific treatment.
Parent
My baby was born with a heart problem that needed an intervention straight away; if the local hospital can’t treat quickly then babies like mine will die?
Panel
There were a number of replies to this at different events.
Cardiologist
The cardiology team would still be able to perform some emergency interventions such as creating a septostomy between the top two chambers of the heart for children who have conditions like transposition of the great arteries.
Surgeon
There is only one surgical procedure that requires an operation to be done that swiftly, for most conditions the surgery is better done after a period of time stabilising the child’s condition.
Cardiac Anaesthetist – Special Hospital Transfer team.
It is possible to transport children many hundreds of miles safely.
(There was another anaesthetists who had more concerns about transfer times).
The panel agreed that this area of care had to be a priority.
Regional Commissioner
The commissioning team reassured the audience that travel between units, especially in the case of an emergency, would be one of their top priorities during the reconfiguration service.
Joined Up services from antenatal through to adult care.
Parents
Will our child be able to have all of their care, even into adulthood within the same unit?
Medical Question
Will all a child’s care from diagnosis to adult care be available in one unit?
Panel
Although the current review process is looking at children’s surgery it is the commissioner role to ensure that all services will be available within each region allowing for joined up care from antenatal diagnosis through to surgery, hospital care, outpatient care and transition into adult congenital cardiac services.
Not all services will be available on one hospital site but clear medical, social and care links will need to be formulated to ensure the smooth movement between all clinical areas and teams.
Community teams understanding of the services needed by each child and family.
Parent
Currently we have free access to speak to the team at the hospital because our local hospital and community team have little understanding of our child’s heart condition or the treatments needed. How will we be able to ensure that we can get the best care for our child if we are worried about their condition?
Panel
General Paediatrician with a Cardiology specialism.
The number of Paediatricians with extra training in cardiology id growing. The long term plan is to ensure that every district general hospital has a paediatrician who can offer specialist support to a child in their local area. They will also develop strong links with the Congenital Cardiac service offering joint clinics close to home and a clear communication path for advice and information if a child becomes ill in the district general hospital. They will also be able to link with local GP practices.
Review and standards team
Communication between the surgical unit, to ongoing cardiac care, through local paediatricians and into the community team is an area of care that must be improved to ensure that all clinical teams have an understanding of the clinical pathway for a child and the possible problems that may arise with their medical care along the way.
It is planned to increase the number of Cardiac Liaison sisters so that each family has a names nurse that will follow them throughout the path of treatment into life at home. These nurses will be able to link with all members of the clinical, educational and social care team to ensure a growing knowledge of each individual child’s needs where ever they may be cared for.
Accommodation and costs of travel.
Parent
How will parents afford to travel long distances for surgery and where will they stay?
Parent
If a child is in hospital for long periods of time will there be accommodation for not only the parent but also siblings?
Panel
One of the units review priorities is to ensure that any unit receiving surgical status has high standards of parent/family accommodation on their site or has plans in place to improve the facility.
The regional commissioning team will be looking at the travel costs of movement for care and treatment within their region.
Care in the local Cardiology Unit
Parent
If our child has had to travel to the surgical unit for an operation do they have to stay there for all of their recovery? Travelling long distances takes parents away from their other children.
Panel
A surgical care and the recovery from surgery will take place in the regional surgical unit. If a child is Cardiac Safe, their heart condition has recovered well, but they still need longer to recover in other ways e.g. feeding or a chest infection, they can be transferred to their local cardiac or district general unit. This will take parents closer to home and all of the support from their friends and family.
Siblings
Parent
My cardiac child is just one of my children. If I want to stay with her at the surgical centre I will have to leave my other children at home possibly for long periods at a great distance from home. Moving surgery will not be fair on my family.
Panel
It is always difficult for families to have to travel away from their children for any reason but 70% of the families interviewed for the CHF Mori poll agreed that they would always travel for the best treatment possible for their child. It will be important that a child who has had to travel for surgery only remains at a surgical centre for the time it takes to have an operation and then to recover. They will then need to be transferred back to their local unit as soon as possible.
One of the areas of service that will be looked at as part of the review will be the services available for families at the surgical unit. Good family accommodation, affordable places to eat, play areas and in some cases access to schooling.
Concerns about the Down Grading of the Cardiology Centre.
Parent and Clinicians
If surgical services are removed from a Unit how will the review team ensure that the Cardiologists and nurses are retained and keep up their knowledge base and enthusiasm for work?
Panel
It is important that the Cardiology Centre remains the hub for most of a patients care. All diagnosis, ongoing medical treatment and inpatient medical care will remain at the current cardiology centres. This makes up a majority of the children’s care needs and must be led by well qualified teams of carers. The whole of the regional cardiology service must keep up skills in all areas of care with the movement of doctors and nurses between units to ensure that high standards of ongoing training are maintained and through this new service plan enhanced as there will be less unit isolation and more team working.
Concerns about other medical service provision
Parent
My child has many more medical conditions than just her cardiac one. How will the panel ensure that she has access to all the clinicians within one unit?
If she needs surgery hope will the panel ensure that a cardiac anaesthetist will be available to support non cardiac surgery?
Panel
Most children with congenital cardiac conditions only need cardiac surgery a few times in their lives. A majority of their care is conducted by the medical teams who will be based in the cardiology units as they are at present in most cases these units also have access to other medical teams such as feeding, general surgical, developmental, neurology, ophthalmology and dental.
With an increase in the number of paediatricians with specialist knowledge of cardiology many of these care needs will be met in the local district general hospital.
If surgery is needed for non cardiac problems then it will be organised in a Cardiology unit where there will be cardiac anaesthetist who support the cardiac catheter diagnostic work of the cardiologists.
10 Engagement Events
Each of the engagement events had a different flavour and differing numbers of participants. In all areas parents and local clinical teams were offered an opportunity to raise their concerns. Sadly in some areas it was difficult to hear participants because they did not use the recognised question and answer format that had been set out for the event.
Each event was recorded and a transcript of the events will be available on the Safe and Sustainable website.
The Next Step
Jeremy Glyde, Director of the Safe and Sustainable review and recommendation process, set out the remaining timetable for this service change.
July
In July the Independent review team led by Sir Ian Kennedy will present their recommendations for the cardiac service provision of the future to the 10 regional specialist commissioners. The commissioners will take these recommendations and together they will look at the national provision needs throughout England.
October
In October they will present their recommendations to ministers and interested parties, e.g. the medical team and users of the service.
October – January
There will be a period of consultation. All interested parties will be able to give their input into the service plan.
During this time the Little Hearts Matter team will be seeking its member’s views about the plan for care which it will formulate into a report to be sent to the National Commissioning team.
January – February
The final plan will be presented and the work to implement it will begin.
Westminster Debate – Paediatric Cardiac Surgery
I was invited to attend a Westminster Hall debate on the 7th of July.
Liz Kendall (Leicester West) had raised a debate on the potential changes to Cardiac services provision within Leicester.
She was joined by fellow ministers:-
Andrew Smith – Oxford east
Nicky Morgan – Loughborough
Peter Soulsby Leicester South
Their Questions were answered by Simon Burns Minister of State for Health.
A full transcript of the debate can be found at:-
www.theyworkforyou.com/whall/?id=2010-07-07a.136.0
The debate questioned the need for change and the potential risks involved in the change. The Minister for health answered all of the questions with the exception of those that the independent review team held the information for which is not as yet with the government.
Suzie Hutchinson 13.07.2010