When entering the unknown world of watching your child slip slowly on to the path that leads towards death and the finality of non-existence, there is little comfort to be found, particularly if you are an atheist. Consequently, any support that can be identified, which enables you to go on and face each day, making the most of every moment that your son or daughter is still with you, becomes a lifeline.
For our family, such support came in the form of the paediatric outreach nursing team (PONT) from our local hospital (Kingston). This is a team of nurses who, as the title suggests, visit families in the community, providing certain nursing services for sick children. This means that families do not have to journey to hospital every time they need for example a dressing changed or a line flushed. The nurses work around the family’s schedule. They disrupt family routine as little as possible, fitting in with your convenience, rather than expecting you to fit in with theirs. This is in great contrast to the experience of being in hospital, where almost everything seems to be done at the hospital’s convenience and patients can wait endlessly, with no apology given. In other words, the PONT service is family-centred and providers of other hospital services could learn a huge amount from them.
I cannot stress enough the value of this service to families like ours. The PONT figured in our lives from the beginning of George’s treatment – changing dressings, flushing lines, offering help and advice – but it was during the final stages of our son’s cancer that their presence became invaluable.
Four nurses, permanently attached to the team, plus one other nurse seconded to the team for a number of months, visited us. In the last months of George’s life, they turned up every day, not just as professionals ready to take on any of the many nursing tasks for which they are trained and are awarded the status of ‘Sister’, but as friends, counsellors and strong shoulders to cry on. They came with a smile, with reassurance, a sympathetic ear and with plenty of jokes and banter. I looked forward to their visits, a part of daily routine, a safety net in dealing with the unknown. And we knew that they would be there any hour of the day or night to support unexpected events. They looked after us as much as they cared for George.
This is not to say that we always agreed with their actions or advice: they were not perfect, not angels. Sometimes we felt they were too hasty in increasing pain relief or in dismissing our suggestions, but they were also working within the constraints of the NHS. Overall they respected our role as parents and supported our way of doing things. More importantly they respected George and did their best to allow him some dignity in his last months of suffering. I feel it is no coincidence that they were the first people he talked to about dying. It was a sign of the confidence he had in them. They attended George’s funeral and they continue to keep in touch, from time to time ringing to see how we are doing.
It seems that the PONT are a nursing team of the old school – not only a job, but also a vocation. They are a service that is family-centred and they are a shining example of good practice in an overloaded, over-bureaucratic, system-centric NHS. Thank you Jackie, Kate, Ruth, Jane and Julie from Kingston Hospital.