Working Together

The last quarter of 2001 was very hectic for Groups associated with Paediatric Heart Services as it saw the lmination of the Review of Paediatric and Congenital Cardiac Services following many months of hard work.

Children’s Heart Federation co-ordinated the valuable input from users of the service (both users and their families) which kicked off with the Conference on 15th September at Regent’s College, Regents Park.

The conference looked at the future provision of Paediatric Cardiac services with relevant issues such as “Pre and Post Natal Screening”, “Care of the child on the Cardiac Unit” and “Care of the Child with long term health needs” being addressed through a series of workshops. The feedback obtained from the workshops into the report to the Department of Health being compiled by the Review Team.

Guest presenters at the conference included Ruth Evans, Chair of the Brompton Inquiry who spoke emphatically about the concerns raised by the Inquiry. Many recommendations for change and improvements were made as a result of the Inquiry with measurement criteria also detailed. This Inquiry (together with the Bristol Inquiry) has resulted in the Review process of all Paediatric Cardiac Care.

The closing session was presented by Prof. Aynsley-Green, who is National Director for Children’s Heart Services heading the improvement of services for children and young people. He spoke about the plans for the future and his commitment to achieve them.

The conference was very well supported by both families and professionals with over 200 delegates on the day and really catapulted the start of the Review process. MaxAppeal members attending the day included Susan Maher, Des Taylor, the Yapp Family, the Groves family and the Cheek Family.

The Children’s Heart Federation note in their final conclusions from their conference that “What is required is a genuine partnership of care between staff, heart children and adults, and their parents [and] a commitment is needed from central Government to ensure children’s heart services are given the funding necessary to underpin substantive changes”.

Leading on from the Conference saw the start of the meetings between parents, users, support groups and Review Team representatives at each Paediatric Cardiology Unit in England Wales and Northern Ireland. These meetings looked at experiences specific to each unit, highlighting both recommendations for change and good practice.

Max Appeal representatives attended meetings at Alder Hey (Liverpool), Freeman's (Newcastle upon Tyne), Manchester Children’s Hospital and Birmingham Children’s Hospital.

The feedback from the Children’s Heart Federation regarding our involvement has been very positive with relevant issues being raised and noted by the Review Team.

The last section of the process was held during December where Specialist National Group representatives met to look holistically at future requirements and discuss a blue print for effective services. Again, Max Appeal attended this meeting and were first out of the hat to go through their presentation (much to the dismay of Gary and Julie who did the presenting!).

Feedback from all strategies undertaken during the Review should be available during the first part of 2002 — watch this space!

To all of the families who supported our representation a huge thank you for sharing your experiences. Your views are highly valued and will make an impact on the future of Paediatric Cardiac Services.

NOTE: Proceedings from the 15th September Conference can be ordered through CHF tel: 0808 808 5000 or downloaded from the link below:

More information from:
http://www.childrens-heart-fed.org.uk