Tuesday, 22 July 2014

tube feeding chaos

Stuff just keeps on happening. It feels relentless. Bristol Royal Children's Hospital phoned just after my last post, saying that they had a short-notice appointment to change N's PEG to a button. She has been on the waiting list since January. The idea of going for a button is that it is much neater and less obvious and doesn't hang out of her tummy like the PEG, so the risk of her kneeling on it as she is crawling around reduces to zero.

The bit bottom left is what goes inside.
From a clinical point of view, the button is changed every three or four months, by either us or a community nurse and is held inside her by a little balloon that is inflated with water via a port outside. The PEG usually lasts for a couple of years but needs a general anaesthetic in order to get it out of her. They have to cut the tube outside the stomach then fish the thing that holds it inside the stomach out via her trachea. For a variety of reasons we chose to change to button - a sense of having more control over it ourselves if it comes out by accident being one of them. The other reason is that we want to feed 'blended diet' - ie, squooshing up what the family is eating in the blender, adding liquid and syringing it down the tube.

Currently, she is having four feeds  of 'milk', a bit like Complan, every day. It is perfectly nutritionally balanced, 1.5KC per ml and is vile, sticky stuff that is hell to get out of clothes and carpet. We have agreement from our dietician to feed BD for two of her 'meals'. The risk is that if we don't whizz it up enough, it might block the tube. Having a button that we can replace without a general anaesthetic is therefore a plus in that situation.

Button, held in place
with a water filled balloon.
So, Wednesday last week, N and B trotted off to Bristol to get it done - it all went well without a hitch and N insisted on going back to school on the Thursday. This was good, in a sense. But it was bad because school hadn't had their training updated in order to be able to use the new kit. So B or I have been going in to school in order to feed her. Previously school were doing two milk feeds, one at mid morning and one early afternoon, in order to keep her energy levels up. We made the judgement call that for these last four days of term we would go in at 12.15 and do one feed. It's worked okay; but I am pleased term has now ended.  School has training in place for early next term and it should all go smoothly from now on.

However. Getting it all sorted is a nightmare. We are under the care of the terminally ill children's team at Musgrove Park Hospital. They are called The Compass Team and are a group of skilled, patient and talented Community Nurses, with additional support staff - counselling support for families, that sort of thing. They weigh N, they are our point of contact for the medical stuff and we rate them highly.

They cannot train us to use N's button, because that has been outsourced.

The training has to be done by the Nutricia Nurse. Nutricia also make the 'milks' that we feed down the tube and we order our milks and our syringes and feeding gubbins from them on a monthly basis. The Nutricia Nurse was unable to arrange to go in to school at short notice for training and so far she has also been unable to come out and show us how to check the fluid levels in the balloon that keeps the button inside N's tummy. We tried to meet yesterday, however, she was unable to book a room at a local GP surgery to hook up with us and SHE CANNOT PRACTISE AT MUSGROVE PARK HOSPITAL, which is where we were, sorting out N's splints, of which more in a separate, equally frustrated post.

It is *insane* that this has been taken away from the competent, involved, local Community Nurses and given to a private company who have staff that cover an area from Gloucester down to Devon and it is *insane* that there is demarcation that prevents them offering feeding support at local hospitals and that technically, the local Community Nurses cannot offer that support to us. I am not implying that the Nutricia Nurses are incompetent - quite the opposite - it's the system. The Nutricia Nurses should be part of the Community Nursing Team, not employed by a private company that is making money out of my child's inability to eat.

Because, in addition, the Nutricia Nurses are not allowed to train people to feed Blended Diet. They are only allowed to train people to use the 'milk' formulae that Nutricia sell.

And school don't want to put blended food down the tube unless they have been specifically trained to do so by a professional - understandable because of their insurance and H&S issues. But the training professional is not allowed to deliver that training, despite the kit N now has being rated to use for Blended Feeding. Because in the US, Blended is the way most families go; because their insurance doesn't cover the £6,400 per year it costs to feed a child the size of N on the milk formula. With older children, it can be twice that amount or more. Here's the link to the Nutricia website where you can see the prices.

The cynic in me thinks that Nutricia has a financial investment in preventing their Nurses training for BD.

I am deeply angry that Nutricia are putting barriers in place that prevent my child eating what we, as a family, want her to eat. Nutricia are controlling N's diet because they refuse to deliver that training. If we want to feed her BD at school, we can go in twice a day to school to feed her. But that's just not practical. The brief period between 8.30AM and 3PM four times a week is all the time that B and I have to sort our lives out; that includes all the admin associated with N's condition, co-ordinating the thirty-plus professionals involved with her care; catch up on our sleep; and, god forbid, earn a living of some sort.

So at the moment, our compromise is that we are going to send in two milk formula feeds for her to school and feed the BD morning and evening. I don't have it in me to fight this battle at the moment - there are other parents out there that are doing this and trying to get NICE involved. I still want to register how ticked off I am at the sheer inefficiency of the system.

I have upcoming posts about Orthotics and Make A Wish. Just putting that in here as a mental note to self.

For today, that is all.

1 comment:

  1. #Sigh

    But I do think that your solution re school is the best one for the moment for you, N and everyone else. Keep fighting :)