Update re: Paediatric Cardiac Services Review – Katie Boyd
Thank you so much for all your letters/ email and facebook posts for us to submit to the review panel – the response has been really remarkable and very poignant.
If you haven’t had a chance yet to send in your thoughts and experiences please do – it will really help us present the strongest case and support for the entire scope of paediatric cardiac services offered by Clark Clinic.
We will have the opportunity to meet with the panel on Tuesday morning for one hour, when we will hand over all your submissions. Parents whose children are under the care of the consultants at Clark Clinic and represent different experiences will be there to meet the panel too and share their experiences and thoughts;
Katie Boyd (me) – Mum to Ollie (2) and chairperson of the charity’s parent’s committee/ group organiser for Antrim area. Ollie has received surgery for transposition of the great arteries in Royal Belfast Hospital for Sick Children (RBHSC).
Allen & Rachael McCullough – Parents to Jay (1). Jay has double outlet right ventricle of tetralogy of fallot and Down’s syndrome. Jay has had surgery in Belfast (RBHSC) and his next scheduled surgery will be in Birmingham.
Grainne Curran – Mum to Kate, Meabh and Luke. Meabh (3) has cardiomyopathy and receives all her treatment and care at Clark Clinic.
Jean Hill – Mum to Camryn and Rachael/ group organiser for Belfast area. Rachael (4) had surgery for transposition of the great arteries in Our Lady’s Children’s Hospital, Dublin.
Sinead Campbell – Mum to Shea and Nathan/ group organiser for South Down. Nathan (2) has hypoplastic left heart and to date has had two surgeries in Birmingham Children’s Hospital.
Eamon McLaughlin –Dad to Cathal (6) and member of Omagh family group. Cathal has Down’s syndrome and has had surgery in Belfast for tetralogy of fallot.
Recent correspondance from the Health and Social Care Board who have commissioned this panel states.
“”The independent expert panel will be chaired by Professor Sir Ian Kennedy and will include clinicians with a background in the care of children with complex heart conditions. The panel will visit the centre and meet with clinicians, families and parent group representatives during April. They will also consider all relevant information, including material provided by the Royal hospitals, before compiling a report which will be forwarded to the HSC Board by the end of May 2012.
This review is separate to the Safe and Sustainable review of children’s congenital heart services in England. However, the review will consider the current services provided in Belfast, taking account of the Safe and Sustainable national quality standards, which have been endorsed by the relevant professional associations in the United Kingdom.”"
Our key messages again are;
- We have complete confidence in the medical staff and services which support the treatment of children with congenital heart disease at the Royal Belfast Hospital for Sick Children.
- It is essential that wherever possible, families in Northern Ireland can access surgery in Belfast.
- Surgery must stay in Belfast. We believe that the best care for our children would be the continuance of the network arrangement with Dublin, and ask that more resources be put into an all Ireland surgical service, with surgery carried out over the two sites. This means the surgeon based in Belfast would be working as part of a strong all Ireland surgical team.
- The practical and emotional consequences of stopping surgery in Belfast for our children, families and indeed future parents and families affected by congenital heart disease is incomprehensible and extremely detrimental to overall family welfare considerations.
For more info on the Safe & Sustainable review in England visit http://www.specialisedservices.nhs.uk/safeandsustainable
Thanks so much for your support with this.
Katie