The news regarding the suspension of surgical services at Leeds is very worrying especially to the parents and children who are due to have surgery in the next few weeks. We understand that all the families affected are being contacted individually by the Trust and we hope that by now that has happened – although we realise that the timing of the decision, just before a long bank holiday, made this difficult.

We have contacted Leeds Hospital Trust bout this and they have said ‘’ They have no statement or re assuring message for parents other than any family awaiting surgery will be contacted and sent to unit with capacity- they can not say where as it will depend on the case and capacity of the unit. We have explained that some parents are concerned and were told that they can’t reassure anyone but that they would be contacting everyone on waiting list so families actually affected should not have concerns. Any parent  who is concerned about their child’s treatment should contact their child’s cardiologist who should be able to advise them.

We are saddened that the NHS felt that they had to suspend surgery at Leeds, but recognise their right to do so. We believe that if there are concerns regarding matters that may affect the safety and care of patients, it is better to err on the side of caution and pause whilst an investigation takes place so that that everyone can be reassured that patients are safe or that appropriate action is taken to ensure that patients will be safe.

We realise that for many the timing appears suspicious, however, it needs to be made clear that it came as much as a surprise to CHF as anyone else. CHF played no part in the decision. We have, over the past two years, drawn the attention of the Care Quality Commission to matters of potential concern and have sought reassurance that the practice at Leeds is safe but to date we have not been given that reassurance. Not one parent should be left after their child’s surgery or treatment thinking ‘’what if’’ but all should be certain that their child  was offered that the best surgery and treatment regardless of the hospital they were treated at.

CHF has become a focus for parent’s anger which has been proclaimed loudly, however it has also been a focus for both families and member groups who have had concerns about practice, but who have felt unable to express those concerns themselves and do not want to be identified. We have acted as their voice. We have always respected the right for families to hold views different to those of CHF and simply ask that that approach is reciprocated.  We take concerns raised by families, member groups, clinicians and members of the public seriously and refer these issues on to the relevant organisations when appropriate.

CHF believes that all voices should be heard but we are becoming increasingly concerned that some of the postings on our Facebook page amount to cyber bullying and has the effect of stifling debate and has caused numerous people to refrain from using the page for support (which is what the page is for) because of fear of attack by other users. We urge everyone to respect the views of others and consider the feelings of parents looking for support at this time – even if you don’t agree with them!