The Children’s Heart Federation (CHF) has written to the Care Quality Commission seeking reassurance that children’s heart surgery at Leeds is managed and delivered to consistently high standards to ensure that the long term quality of life outcomes for the children under the care of the unit reach the standards appropriate for UK paediatric cardiac units. We have been aware of concerns about the outcomes at Leeds for some time, based on information shared by parents through helplines and support provided by CHF member organisations, discussions within the context of the Safe and Sustainable programme and also by clinicians within the field of paediatric congenital heart care. Taken together, these pieces of information led us to the conclusion that there may be a problem with surgical care at Leeds. It is entirely within the remit of CHF, as a charity that works to ensure the best possible care and support for families affected by congenital and acquired heart conditions, to raise concerns in this way. We have asked the Care Quality Commission, as the appropriate authority, to look into the matter, and it is now for them to do their work.

Letter 1 – 10th June 2011

Chief Executive
Care Quality Commission
Finsbury Tower
102-105 Bunhill Row
London EClY 8TG

10th June 2011

Dear Ms Bower

Following our correspondence with you last year about paediatric cardiac services at  The John Radcliffe Hospital, Oxford we would again seek advice from your organisation about where to address Children’s Heart Federation’s concerns about potentially unsafe practice within the children’s heart surgery service.

In our role as the leading parent organisation representing children with a heart condition and their families, Children’s Heart Federation has been present at all the consultation events for the NHS Safe and Sustainable review of children’s heart surgery.

We were most concerned at the Leeds event to hear parents referring to the high number of operations that their children have had – this concern was shared by some of our member groups who have asked us to contact you about this and also their worries about morbidity linked to surgery.

We are aware that according to the CCAD database Leeds is not an outlier, and we are also aware that CCAD records neither repeat surgery nor the morbidity associated resulting from interventions.

Many parents of children treated at Leeds express a very high level of satisfaction with the service their children have received. However, as we have stated previously, as a national charity, we have access to a broader set of comparator information than individual parents and some local groups and, with this knowledge, feel morally obliged to flag up patient safety concerns to bodies able to take action to ensure the highest possible standards are reached.

Publicity linked to the Safe and Sustainable programme is generating an increased level of calls and comment on our social networking page, so we would therefore be very grateful for an early response so that we can give confident assurances to parents that there are no unsafe practices at the unit.

Anne Keatley-Clarke
Chief Executive
Children’s Heart Federation

Letter 2 – 30th June 2011

Cynthia Bower
Chief Executive
Care Quality Commission
Finsbury Tower
102-105 Bunhill Row
London EClY 8TG

30th June 2011

Dear Ms Bower

I refer you to my letter to you of 10th June. I have heard various comments to the effect that it is believed that our concerns relate to the procedures considered in autumn last year and reported on in the document ‘Response To The Analysis Of Mortality Data Of NHS Trusts In England Providing Paediatric Cardiac Surgery 2000-2009’, so I feel I need to write to you again to explain that this is not the case and to clarify CHF’s position.

Our concerns are linked to aspects of surgery that are neither currently reported on the CCAD website nor covered in last year’s Pollock review and are:

• Whether the level of repeat surgery at Leeds is at an acceptable and safe level, because parents at Leeds, who are very loyal and supportive of their unit, describe heroic numbers of operations on their children? I have heard them talk in terms of children having up to 15 operations, which seems excessive. I am mindful that these comments are similar to those made by parents of children treated at the John Radcliffe Hospital in June last year when we also wrote to you.
• Whether the full range of treatment options, including referral to other units, are offered to parents? We have heard from parents seeking information on how to get a second opinion because surgical treatment has not been offered by Leeds and they have not been supported in seeking a second opinion elsewhere. I believe that surgeons have been asked to keep a record of the cases that are deemed inappropriate for surgery.
• How morbidity is monitored and recorded because some of our member groups have concerns about the quality of life outcomes after surgery for children with complex conditions?

I have written to you now because of the increased interest in paediatric cardiac surgical services due to the Safe and Sustainable Programme in the hope that you will be able to provide a positive response to our concerns so that we can reassure parents that there are no unsafe practices at the unit.

Anne Keatley-Clarke
Chief Executive
Children’s Heart Federation