The NHS is proposing to change how heart care and services are given in England. An Advisory Group (made up of patients, clinicians, and NHS commissioners) think that currently the system is very inconsistent, and would like to have services more organised. Together, they wrote and published a proposed model of care, which would see networks of care established, led by specialist units with clear referral pathways and communication links. They also wrote a series of draft minimum standards, which each centre (and network) would have to sign up to.
Both Suzie and Jon travelled to the professionals' engagement event, and then Jon travelled to a further stakeholder engagement event in London. As we represent children with single ventricle heart conditions, a group that needs much more specialist care, we brought a different perspective to the proceedings. We were able to discuss with the team worries and reservations that we had with the proposed plans, and record these for the team to see. With hundreds of professionals and stakeholders at the events, it has to be said that the overall response to the plans was positive, but this is not to say that there are not problems that need to be identified and rectified.
Over the last few months, Jon has contacted over 50 families who have an older teenager with half a heart. Over a fifth of these families spoke to Jon at length, and gave their experiences and expertise. LHM recorded these chats and identified common themes. This report, along with our analytical critique of the standards documents, can be found here:
Although the deadline for feedback has now passed, a more formal consultation with patients and their families will follow in the summer/Autumn of 2013.
Thanks to everyone who contributed and gave their views.