Active campaign on children’s heartcare standards for years
Children's Heart Federation has been actively campaigning for improvements to the UK heart care system for many years, particularly since the Bristol Baby Tragedy of the late ‘80s and early ‘90s, when it became shockingly clear that an established surgical centre had covered up very poor surgical results for a long time.
Broad view of care across the country
As a federation of 21 member groups, CHF has a uniquely broad perspective on a national reorganisation of children’s heart care services. Some of our member groups have strong links with a particular hospital and can advise on how changes in the network will affect families in that region, others focus on supporting children with a particular type of condition; they hear feedback about all the units that offer treatment to children with that health problem. The adult congenital patients organisation, GUCH, is an associate member of CHF and works closely with us on support for young people of ‘transition age’. Within the federation, there is also particular expertise on fetal cardiology. So, CHF is well placed to take an overview of paediatric congenital cardiac services from before birth to adulthood.
Member of the NHS Safe and Sustainable Steering Group
This broad perspective and the charity’s ‘umbrella body’ status, with a reach through its member groups to thousands of heart families, led to the invitation for CHF to have a place on the Steering Group of the NHS Safe and Sustainable Congenital Cardiac. Within the NHS, It is very unusual for a parents organisation to be part of such a high level group – one which reports directly to the NHS Management Board.
Focus on standards not choosing units
As part of the Steering Group, CHF has played an active role in the development of the standards (View standards at this link) for the children’s congenital heart surgery service and wider heart care network of the future. The charity has had no role in the part of the Safe and Sustainable process that results in the final choice of which units continue to provide surgery and which focus on cardiology – we have not contributed to the work on patient flows or the long term sustainability of any unit. We have worked with the NHS team supporting the Safe and Sustainable process to create opportunities for parents’ voices to be heard and their views understood and taken on board.
Creating dialogue between parents and the NHS
Throughout the Safe and Sustainable review so far, CHF’s role has been to raise issues that are of concern to parents in the discussion about what a good heart care service of the future would look like. We have often been a conduit of information between the NHS and parents of heart children. Unlike CHF’s member groups – and other support groups connected with particular hospitals – we maintain an impartial role in relation to the future of specific units. We respect and support the work of groups to lobby hard on behalf of their unit. However, with the needs of all heart children, wherever they live, in mind, we focus on ensuring the heart care standards are adopted and implemented.
Supporting the implementation of the Safe and Sustainable standards
The main professional bodies working within the children’s heart surgery field endorse the standards and they are backed by CHF member groups. Whilst there is very widespread support for the standards in principle, it is much more challenging to work through the process of applying them, which is where we are in early 2011. The logic of the standards leads inevitably to stopping surgery at some of the current units; this can lead to a difference of position between a local member of CHF and the CHF national team when the future of a particular unit comes under discussion.
Background to the NHS Safe and Sustainable Children’s congenital heart services programme
Having the best and safest surgery in the NHS for children’s heart conditions has to strike a balance between services that are close to home and services with enough specialist expertise to allow the highest standards of care.
For background to the NHS Safe and Sustainable Children's Heart Surgery Services Review Programme:
Recommendation for fewer, larger centres
The NHS Safe and Sustainable programme has explored recommendations made at an NHS workshop in 2006 hosted by the National Director for Heart Disease and the National Clinical Director for Children, Young People and Maternity Services. The clinicians, managers and patient representatives from CHF and several of its member groups who took part in the workshop recommended that the NHS should develop fewer, larger centres of expertise for children's heart surgery.
At the moment, 10 centres in England perform heart surgery on babies and children. Spreading all the operations across this many centres makes it impossible for all of them to do enough operations to develop their skills and expertise to the same level.
Two key issues lie behind previous recommendations for fewer, larger centres:
- Skills of the surgical team - heart surgery centres that carry out a higher-than-average number of surgical procedures perform better, as surgeons become more experienced/specialised;
- Availability of surgeons - to ensure that surgeons do not work excessive hours and operate on babies and children when tired, a new European Working Time Directive limits the number of hours a surgeon can work. To comply with this law and ensure that there is full cover, each centre will need at least three, but probably five surgeons.
Having fewer, larger centres should improve outcomes for children, however, some parents and their children would have to travel further for surgery.
Would you go further for better healthcare?
Read an opinion piece by John Black, President of the Royal College of Surgeons.
Throughout the Safe and Sustainable process, CHF has gathered parents' views on what good children's heart surgery services look like to feed into the NHS planning, by:
- Participating in an exchange of views via the CHF Facebook page and Twitter;
- Holding regular meetings with representatives of CHF member groups;
- Co-ordinating a postal and online survey, distributed via CHF member groups to over 5000 parents and carers;
- Inviting parents to email their views on what a good children's heart surgery service looks like;
- Listening to parents' views in focus groups at CHF's Federation Days and other events;
- Inviting the Safe and Sustainable Programme Manager to speak and answer questions at the Federation Day
Survey
CHF asked Ipsos MORI, the independent research agency, to conduct research into parents' priorities for the future organisation of children's heart surgery services. Member charities of the Childrens Heart Federation sent out postal questionnaires and links to the on-line survey to over 5000 parents. CHF reported the findings of the survey and themes emerging from meetings and contact with parents at an NHS Stakeholder Event on 22 October to which the lead surgeons and Chief Executives of the heart surgery centres were invited. These findings are available as:
