Working with the Royal Brompton

How the Ben Williams Trust has supported the development of Children’s Cardiac Services at the Royal Brompton Hospital – the Consultant’s View

Dr Jan Till, a Patron of the Ben Williams Trust, is a consultant paediatric electrophysiologist based at the Royal Brompton Hospital, London.  She is also Divisional Director of Children’s Cardiac Services and Co-director of Paediatrics.  She leads one of the largest services nationally offering specialist support and provision for children with heart rhythm irregularities. She recently wrote to us to describe how the service at the Royal Brompton has developed, and the role that the Ben Williams Trust has played in this.

“The last decade has seen an increased awareness and understanding of inherited cardiac conditions by the medical community. Sadly, such conditions can result in a seemingly well young person succumbing to sudden death or cardiac arrest. Many of these conditions are treatable, but historically they have been very poorly recognised and consequently unmanaged. High profile cases have increased public awareness and people potentially at risk need rapid access to multidisciplinary expertise to help manage the impact and risk of their conditions.”

“The support provided by The Ben Williams Trust has helped us at the Royal Brompton to build our service during this time from a very rudimentary clinic to a large, comprehensive, multidisciplinary service recognised nationally and internationally for the work that we do.”

“When families learn that they may be affected by an inherited cardiac condition they are often devastated. The psychological impact of suddenly finding a potential life-threatening condition in multiple and often young family members is tremendous. Guilt, anxiety and fear can be overwhelming. It is important that an inherited cardiac condition service is able to offer psychological as well as good medical support. After the initial shock and treatment, rehabilitation back into school and work is necessary. Specialist nurses can be invaluable in helping families ensure safety in the community and dealing with practicalities of returning to their lives.”

“The Ben Williams Trust kick-started funding for a dedicated specialist nurse to work with medical teams and families at the beginning of our journey and our specialist nursing team has now grown from one to nine, serving both children and adult patients. Many families benefit from counselling and psychological assistance and again the Ben Williams Trust has allowed us to welcome a dedicated psychologist to the team. Very few other institutions around the country can boast such a service.”

“In parallel to the development of our team, genetic understanding is progressing rapidly. Our hope is that genetic knowledge will transform healthcare in the future with better understanding of diagnosis, risk and treatment. This vision is particularly pertinent to inherited cardiac conditions where single gene mutations can cause such devastation in otherwise well young people.  To harness the potential, the Royal Brompton has invested in an on-site genetics and genomics centre and as part of the London South Consortium will be one of the four national cardiac genetic testing centres in the UK. As a result, we at the Royal Brompton are one of the first services to offer multidisciplinary working across genetic scientists, specialist nurses and medical staff. This has transformed our understanding and will further enhance the care we are able to provide for our patients and others in the UK.”

“Our next venture will again be innovative and with the help of the Ben Williams Trust we plan to appoint a Nurse Consultant. This would again be the first such appointment in the country. Our vision is that this novel approach to clinical leadership will bring huge benefits to families with inherited cardiac conditions through innovation, backed up by teaching and research, which we foresee driving improvements in care.”

“All this work is vital and makes life once again possible for the many families who find themselves affected with inherited cardiac conditions. We are entirely grateful for the funding raised by you for our service and families we care for. We know it makes a huge difference to the quality of care we can offer.”