Dear Magenta - It sounds like you have felt rather let down by the community care you have received. I understand it is difficult when you are worried about your son and want the best possible care for him. I am pleased that the you have been able to speak to the Matron for Children's Services and hope that this has given you some sense of peace after your experiences. I do however feel the need to share some of my experiences with you. Life in the today's world means that there are only finite budgets available. The community paediatric nurses that were unable to come out to you were the same amazing handful of nurses who cared for my son at home in the months before he died. They visited him as often as was needed, managed his pain, comforted him and us as he deteriorated, liaised with all the other professionals involved and supported us as a family during an incredibly difficult time. In his final weeks he could not be moved from his room, was attached to oxygen to help his breathing, syringe drivers to manage his pain and seizures and had numerous other tubes and bags attached to him. I would have given anything for us to be in a position to leave his room let alone get on a bus. Without the team's care and time, this awful period in our lives would have been even more intolerable. Caring for a child with palliative care needs at home is I guess expensive and time consuming for the NHS, but being able to keep my son at home in his final weeks with the support of the Colchester paediatric nursing team around him was priceless to us as a family. In an ideal world there would be the money and resources available to meet all the needs our children have in the community, but as I have learnt through my son's death life is not ideal. I feel that CHUFT have to make the best use of what they have available to them. Personally I could not have asked for a more responsive and caring package of support. It has made me appreciate the service that the NHS offer when it is really needed most. I hope that your son has made a full recovery.

I have spoken, this afternoon, to the Matron for Children's Services, and will be writing to the PCT about the situation we have encountered with our son and the deficiencies in Post operative care outside of the hospital. I thank PEBL for allowing me to bring this to the public forum, and hope that anyone else encountering similar issues will raise them with the Hospital and their GP surgeries - they only know there is a hole in the service if someone tells them and makes a stand about.

“I have been asked by the Matron for Children’s Services if this mother could contact her so that the issue can be resolved.” (Note from PEBL:- the names, mobile number and email of the people from the Trust were included in the response and these have been passed directly to “Magenta”. Under PEBL rules, we don’t put personal details like that on the website. Also: Thanks to the people at the Hospital Trust for using PEBL to respond to a patient’s experience.)