R’s not well again. She’s pale and tired – except overnight, when she is hardly sleeping at all.  Her breathing is laboured. She’s shaky on her feet, frequently struggling to put one foot in front of the other. She’s losing weight.  None of this is new but she’s just that bit more poorly than usual.

I struggle to know what to do when she is like this.   It could be “just a Rett thing” but I really don’t want to take the risk that it’s not.  Unfortunately, there isn’t a clear pathway in place for managing R when she is unwell.  The lead clinician for R’s care is her neurologist and it is outwith his role to manage acute episodes such as this.

I could, I suppose, take her to the GP.  My relationship with the GP has, however, been rather strained since I made a complaint. (R had collapsed on the school run. As I was very close to our GP practice, I stopped the car outside.  I ran in, R stretched deeply unconscious across my arms, and begged to see a doctor.  The receptionist glanced up at us briefly before declaring that it was only possible to see a doctor by appointment and if would I like to come back with R later in the day, she might be able arrange for us to see one then.*) Even if our relationship were better, the fact is, that unless R showed signs of an infection, and right now she doesn’t, there is little that the GP could do.  In any case, GPs find R very difficult to examine and we invariably find ourselves referred to the hospital emergency department as a precaution.  The doctors there make no effort to hide the fact that they feel that their time would be better spent dealing with a proper emergency.

I can’t imagine that this problem is unusual.  In fact, I know that it’s not.  NHS Fife have piloted an excellent scheme aimed at helping parents of children with complex healthcare needs.  They have employed (and trained) an Advanced Nurse Practitioner whose job it is to liaise with parents, offer treatment at home as appropriate and provide a bridge between families and consultants.  Part of the role is to accompany parents to appointments where that is required and even to arrange hospital appointments for different specialities to be booked on the same day.  This last sounds like a blindingly obvious thing to do, but in our experience it’s never ever done.

This scheme is brilliant but there is no sign that it will be rolled out here.  If the reason for this is cost, then this is short-term thinking.  By keeping children like R out of hospitals and by managing their care at home by Nurse Practitioners rather than doctors, the NHS could provide a better service at lower cost.  And its a great shame that, apparently, no-one administering these budgets can see this or even that there is a genuine need for it.


*Incredibly, only a matter of weeks later, and apparently after the reception staff had received further training, it happened again.  On this occasion, the receptionist asked me to take a seat and then didn’t alert the doctor.  This time, other patients who witnessed the events complained too.  I know, I really should change GP.

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