The process to improve future NHS services for adults with congenital heart disease (ACHD) in England is underway. The NHS is currently working closely with ACHD patients, clinical staff and other relevant stakeholders as it reviews services currently provided and develops standards for future provision. This process will lead eventually to centres being designated to provide ACHD care.
ACHD Advisory Group
The NHS has convened an ACHD Advisory Group to oversee this process. The ACHD Advisory Group includes ACHD patient representatives, clinicians and representatives from professional associations. The Group is chaired by Professor Sir Roger Boyle CBE, the former National Director for Heart Disease and Stroke. The ACHD Advisory Group’s role is to endorse the development of a process to assess potential ACHD centres, oversee the development of plans for public consultation and advise on implementing potential changes to ACHD services. The NHS recognises the importance of effective transition arrangements between children’s congenital heart services and ACHD services. The ACHD Advisory Group will therefore take account of emerging findings from the separate Safe and Sustainable review process.
Developing national quality standards for ACHD services
The first task for the ACHD advisory group is the development of national quality standards. The NHS is working with ACHD patients, clinicians and others to develop standards for all hospitals wishing to provide high quality ACHD services in the future. The standards will include an appropriate model of care for the service as well as minimum surgical procedure numbers and staffing levels. The NHS will take account of the initial ACHD standards that were published in 2009 under the management of East of England Specialised Commissioning Group, which can be found here. The ACHD Advisory Group held its first meeting in July 2011. Details of revised membership and terms of reference can be found by visiting ACHD process and terms of reference.
Engaging the public
The NHS is currently seeking views on the existing draft national quality standards from ACHD patients, clinicians, relevant stakeholders and other interested parties. The views of ACHD patients are very important and understanding their experiences, hopes and concerns at this stage will help inform the review as it develops. Members of the NHS team attended, in listening mode, the annual conference of the Grown-Up Congenital Heart Patients Association (GUCH PA) in Cardiff in October 2011. A report of the feedback received from participants is available here. The NHS would also like to hear from any patients or members of the public over the coming months. Updated information about the process will be published on the NHS Specialised Services website and will highlight ways in which people can contribute their comments and suggestions.
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