The CCNA was originally called the Paediatric Cardiac Nurses Association (PCNA) and was formed in 1990 by a group of London based nurses; the aim being to provide a format for the exchange of information and ideas regarding the work and experience of the relatively small number of nurses involved in the care of children with heart disease.

Over the years there have been many changes within the congenital heart disease specialty that have influenced the remit of the group and the work of the executive committee. Membership of the committee has also changed and now represents the majority of children’s cardiac units in the UK and Southern Ireland. In the last 5 years we have opened up the association to other health care professionals working in congenital services to enhance networking, collaboration and interprofessional working.

Key events such as the Bristol Royal Infirmary Inquiry in the late 1990’s and the subsequent Kennedy Report (DH, 2001); the Victoria Climbie Inquiry (DH, 2003) and the publication of the National Service Frameworks (DH, 2004) had a dramatic impact upon service delivery, professional practice and education throughout the NHS. We have also seen greater consultation and collaboration amongst all professional groups and the children, young people and their families.

Following discussions at the Annual General Meeting in April 2007 a notion was passed to change the name of the PCNA in line with changes occurring elsewhere in the speciality and in November, 2007, the association re-launched as the ‘Congenital Cardiac Nurses Association’ in order to widen the remit to include health care professionals caring for the Adult Congenital Heart population. With this re-launch came a new logo and this website.

The Executive Committee members have a business meeting at least 4 times per annum; these meetings also offer an opportunity for the CCNA to work on national issues affecting children’s cardiac nurses, such as developing the “Children and young people’s cardiac nursing: RCN guidance on roles, career pathways and competence development” (RCN, 2014)
We issue a bi-annual newsletter to members, the aim being to update members on the work that the executive committee have been undertaking; to share local, national and international news and stories and to advertise upcoming events and conferences. If you have anything that you would like to share with other CCNA members please do contact our newsletter editor.
Historically there were 2 conferences or symposiums per year, one in the spring (alongside Cardiology in the Young) and the second in the autumn (alongside the BCCA) however over the last 2 years our presence has mainly been linked to the BCCA meetings in November. This has predominantly been because the executive committee have been busy working on the Safe and Sustainable review and latterly the NHS England review and therefore have not been able to dedicate time to organising separate conferences. In 2016 we were able to hold our own conference again ‘The Force Re-awakens’, held at University of Worcester. We have another conference planned for 2017, details for this have not been finalised yet, so keep checking the website for more information.

The CCNA have been involved in the Safe and Sustainable (S&S) Children’s Heart Surgery programme and subsequent NHS England Review, since 2006 following a national workshop attended by representatives from professional and patient groups, which concluded that the current configuration of children’s heart surgery services in England was not sustainable (Cook, 2010; National Specialised Commissioning Group (NSCG), 2009: 5). The work of the S&S Steering Group additionally considered earlier recommendations made by the Paediatric and Congenital Cardiac Services Review (Department of Health (DH), 2003) following the Bristol Royal Infirmary Inquiry (Kennedy, 2001).

In 2009, the ‘Safe and Sustainable Children’s Cardiac Services’ national stakeholder engagement event, concluded that the configuration of children’s heart surgery services in England were not sustainable (NHS Specialised Commissioning Group (NSCG), 2009: 5). At the end of the four year programme, in July 2012, a joint committee of Primary Care Trusts (JCPCT) proposed a new model of provision for children’s heart surgery in England covering:

the development of congenital heart networks,

service standards,

improving the collection, reporting and analysis of outcome data, and

the configuration of surgical services, which would have reduced the number of centres providing children’s heart surgery from ten to seven, with surgery ceasing at Leeds, Leicester and the Royal Brompton (NHS England, 2013, p. 3)

The decision regarding configuration resulted in two separate challenges: a judicial review (JR), and referrals to the Secretary of State, who in turn asked the Independent Reconfiguration Panel (IRP) to consider the JCPCT findings(NHS England, 2013, p.3)

“On 12 June 2013 the Secretary of State announced in Parliament that the safe and sustainable proposals for children’s congenital heart services could not go ahead in their current form. He went on to say that “it is right we continue with this process, albeit in a different way”. Following the outcome of judicial review, the report by the Independent Reconfiguration Panel (IRP) and the Secretary of State’s announcements relating to the safe and sustainable review of children’s congenital heart services, NHS England is now the responsible body for taking forward the process” (NHS England, 2013, p. 3)

In 2011 the CCNA in association with the Royal College of Nursing published the first edition of “Children and young people’s cardiac nursing: RCN guidance on roles, career pathways and competence development” to enhance and standardise the clinical care received by children and young people with congenital heart disease. This document has since been updated to ensure that the original nursing standards developed in 2011 remain fit for purpose. Additionally, it now includes the future vision for children and young people’s (CYP) cardiac nursing career pathways and a competency framework. The second edition was published in October 2014 and can be found at the link below:
http://www.rcn.org.uk/__data/assets/pdf_file/0010/594658/004_121_web.pdf

This publication sits alongside “Adult congenital heart disease nursing: RCN guidance on roles, career pathways and competence development (Griffiths et al. 2015)” and can be found at the following link:
http://www.rcn.org.uk/__data/assets/pdf_file/0010/594658/004_121_web.pdf

Moving into 2016, NHS England have published an updated ‘Congenital Heart Disease Standards & Specifications’ document based primarily on the final report of the ‘New Congenital Heart Disease Review’ (NHS England 2015). We must all be striving to meet these standards over the course of the next few years, the CCNA are committed to advancing practice and ensuring these standards are implemented within our centres. Unfortunately the new standards of staffing mean certain surgical centres are under threat of having this provision removed, however a lower number of centres providing surgery results in a higher quality, more concentrated skill mix leading to the best possible outcomes for the children and young people we care for.

As of February 2017, NHS England has launched public consultation on how it will put in place new standards for hospitals providing congenital heart disease services in England. This runs until 5th June 2017. More information can be found at the following links:

https://www.england.nhs.uk/2017/02/chd-consultation

https://www.engage.england.nhs.uk/consultation/chd

References

Cook K (2010) Safe and sustainable paediatric cardiac surgical services, British Journal of Cardiac Nursing, 5 (7), 350-352

Department of Health (2003) Report of the Paediatric and Congenital Cardiac Services Review. DH, London

Gaskin, K. (Editor) et al (2014) Children’s and young people’s cardiac nursing: RCN guidance on roles, career pathways and competence development. Second Edition. London. RCN, available at: http://www.rcn.org.uk/__data/assets/pdf_file/0010/594658/004_121_web.pdf, accessed 03/10/14

Gaskin K (2012) Children’s Congenital Cardiac Services, Journal of Paramedic Practice, Vol. 4 Issue 3, p129

Gaskin, K. (Editor) et al (2014) Children’s and young people’s cardiac nursing: RCN guidance on roles, career pathways and competence development. London. RCN

Griffiths, L. et al (2015) Adult congenital heart disease nursing: RCN guidance on roles, career pathways and competence development. London, RCN.

Kennedy I (2001) The Bristol Royal Infirmary Inquiry. DH, London

National Specialised Commissioning Group (2009) Safe and Sustainable Paediatric Cardiac Surgery Services. NSCG, London

National Specialised Commissioning Group (2010) Children’s Heart Surgery. The Need for Change. NSCG, London

NHS England (2013) New review of congenital heart services, available at: http://www.england.nhs.uk/wp-content/uploads/2013/07/180713-item13.pdf, accessed 03/10/14

NHS England (2015) New Congenital Heart Disease Review: Final Report. London, NHS England. Available from: https://www.england.nhs.uk/wp-content/uploads/2015/07/Item-4-CHD-Report.pdf

NHS England (2016) Congenital Heart Disease Standards & Specifications. London, NHS England. Available from: https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/chd-spec-standards-2016.pdf