Campaigning for heart families and services.
Children’s Heartbeat Trust has been at the forefront of representing heart families across Northern Ireland to ensure that children and young people receive the best care and treatment possible. So much so that the charity recently won a leadership award for leading on political impact and highlighting health issues.
The charity ran the HANDS UP campaign to protect and enhance children’s heart surgical services on the island of Ireland (read more under Hands Up section). In February of this year the Health Minister Jim Wells MLA told the NI Assembly that he is accepting the recommendations of an Independent Working Group led by Dr Meyer, that children’s heart surgery should only take place from the Our Lady’s Hospital, Crumlin in Dublin, and is working with the Republic of Ireland Health Minister Leo Varadkar to establish an all Ireland service.
Although the charity campaigned for a networked solution with surgery across Belfast and Dublin, we recognise that for the first time Dr Meyers’ recommendations have clearly detailed how surgery can safely be delivered from Dublin for children in Northern Ireland, and we are relieved that England as a long term option for all children’s heart surgery is now firmly removed from the table.
However, there is still an interim period of up to 15 months while the new all-Island structure is put in place and during that time families still face the upheaval of travelling to England for surgery. Ministers from Belfast and Dublin need to work to reduce that time period as much as possible. Although we have received assurances that when emergency surgery is required this will happen in Dublin, we are pushing for the investment needed to improve PICU capacity in Dublin to reduce the amount of babies, children and families having to get on a plane to access planned care.
The all-island Congenital Heart Disease (CHD) Network Board, comprising of patient representatives, clinicians, service providers and commissioners is now meeting monthly. Children’s Heartbeat Trust sit on the Board to represent the views of children and their families from Northern Ireland.
Children’s Heartbeat Trust are also Co-Chair of the Family Engagement Group which will feed into the Network Board. This group focuses on family and patient experiences, gathering and presenting feedback as well as communicating changes to the services and important information for families. The first meeting is scheduled for September and is a key way that we can shape the network service from the outset. It is really crucial that we take this opportunity to share your experiences, thoughts and ideas on what is working well and how the service can be improved. Please keep an eye on our website and facebook for ways you can get involved.
Since May 2015 catheterisations for paediatric patients have moved from Belfast to Dublin and are undertaken in Dublin by the Belfast team. By all accounts, both clinical and from families, this transfer has worked well which is testimony to the hard work and collaboration of a large number of clinicians and nurses from both the Belfast and Dublin teams. If you are awaiting a cath appointment you should be contacted by the team in Clark Clinic with all the information you require.
Children’s Heartbeat Trust are here to support and represent our heart families during this transition period, so if you have any concerns or questions you can call us on 028 9031 2228 or email firstname.lastname@example.org