The Children’s Heart Federation represents 23 UK-based voluntary organisations working for children and young people with congenital and acquired heart disease and their families. We cover the full spectrum of CHD, whilst our individual member groups concentrate on specific conditions or provide support in specific locations.
We act as the voice of the CHD carer’s community, often working as the bridge between parents and policy makers and service providers – not always a comfortable place to be.
We know that that the overwhelming majority of parents whose children have recently or are currently receiving treatment are very satisfied with the care that their child has received. However active and informed parents know that current services are not always as good as they could or should be.
They are aware that the current surgical service is dependent on the goodwill of existing surgeons and their teams to work demanding rotas beyond their contracts in order to provide cover – particularly for emergency surgery. We don’t believe this can continue and have been campaigning for a sustainable service. We feel that the new standards go a long way to providing what parents have been asking for and are supported by them.
We realised early on in the review process that the adoption of the standards would mean that fewer centres would offer surgery and that the resulting change would be difficult, in the short term, for some parents and clinicians.
It is important that those affected are supported through the change, but it is equally important that parent’s and clinicians natural affinities with their local unit do not hold-up the necessary improvements to a national paediatric cardiac surgical service.
It needs to be understood by everyone involved that an overwhelming majority of parents support these changes and welcome the fact that the long term cardiology-care will be provided through local networks where clinics will often be closer to their home.
Indeed half the children with congenital heart disease will never see a surgeon and many more will have just one surgical intervention. For these, the fact they will not have to travel so far for their ongoing clinical care is a vast improvement.
And, of course, we believe the proposed changes will result in much better outcomes for those children who do have surgery particularly because there will be reduced waiting times and fewer cancelled operations. As this will enable more children to have surgery at the right time for them, there will be less complications following surgery.
We believe that the new configuration of the paediatric cardiac service as agreed by the Joint Committee of Primary Care Trusts on 4th July will provide much better care for all heart children, now and in the future, and we urge everyone who cares about children with heart conditions to get behind the decision and work together for their early implementation.
Statement Issued 17:05 24/07/2012