Thursday, 31 July 2014

best foot forward

During the end of May and beginning of June, it became evident that N's splints were hurting her quite badly. Her protruding ankles and the bony prominence at the top of the foot below the ankle were becoming rubbed raw after less and less time in the AFO. N's physios said that she shouldn't walk without the AFOs on because it put extra strain on her foot - her feet turn both in and under quite badly now. She should spend up to an hour each day in her standing frame, to give a good stretch to the legs and feet; and we are doing stretches three times a day for ten minutes at a time.

So, we asked the Orthotics Department for an 'emergency appointment'. The earliest they could book us in was July. I kept ringing, they kept looking in the diary and eventually, we got one on on the last day of the month, which was the day that were booked in to the hospice. We planned to go to the orthotics appointment and then on to Barnstaple.

The regular chap we see at the hospital wasn't there and so we saw a different, less experienced Orthotist. She told us that we shouldn't have been booked in to see her at that clinic, because they run a Paediatric Clinic in the afternoons with one of the Paediatric Physios and we should have gone in to that. I explained that we needed an emergency appointment and had been slotted in. She looked at N's feet and called another Orthotist in to look. They decided they would modify her existing AFOs with some more straps and velcro to pull the foot in to line. They took her splints away and said that they would be back in two weeks and we would be given another appointment to check the new fit.

We went off to the hospice, with N unable to mobilise at all in her walking frame.

It was crap.

We stopped in Barnstaple and bought a pair of boots with the best ankle support we could find, but they didn't really do the job and walking was a huge struggle for her in them.

That was the thirtieth of June.

A few days later, the Orthotist phoned me and said that the earliest appointment we could have to get the splints fitted was in four weeks. I said, could we come in and get them before then because they couldn't be worse than they had been and we could tell when they were rubbing. She said yes.

So a week or two later we got a call that they were ready and went and got them.

They didn't even go on her feet and the shaping for her protruding ankles had been made on the wrong side of the splint.

So we asked for an emergency appointment.

There were no emergency appointments.

Eventually our Physiotherapist sneaked us in to an appointment she had made for another child who had moved away from the area suddenly.

So last week, ten days ago, we went back. This time it was an afternoon appointment and we saw the chap we usually see and the new person. No Paediatric Physiotherapist, though, because she was on leave. The regular Orthotist looked at the splints, said that they were no good and decided that she needed to be in AFO boots and calipers and some soft velcro splints for the night. He said he would rush the kit through and it would be there when we went for our appointment on 4th August. This is the appointment that we *should* have been going to to check the fit of the modified splints.

This morning, Orthotics rang, cancelled that appointment and said that the splints wouldn't be there.

They gave us another date for the 1st September.

I ranted in my head for a bit and then phoned them to find out what was going on. After speaking to the Admin staff and the Orthotics Manager,  I was told that there is a six to eight week wait for the boots to come from the factory in Germany and no chance of them getting here earlier. They have, however (and I was made to feel as if this was a great favour), 'phoned the factory and put pressure on them and the night splints will be available to be collected on Monday'. They even allowed us to keep our appointment with the Orthotist and the Paediatric Physio to have them checked.

In the meantime, I have taken N to Exeter to the shoemaker there to have some boots custom made to try to correct the bend and roll in her feet. They will be ready next week and should help a bit.

And I have done some phoning round and found a company that have a lead-time of three to four weeks for AFO boots of the same make, which come from the actual factory in Spain, not the fictional factory in Germany. Peacocks, who Musgrove Park use as their Orthotist supplies people, do not seem to use the company that I rang; and they are either liars or they are just crap.

I have written a letter of complaint to the Somerset NHS Trust and suggested they try telephoning the company I have found.

I am so, so, so tired of this constant battling, it really is wearing. B is completely head-fucked over all this - for some reason the splints are one of the things that emotionally effect him. We both seem to have different things that press our buttons and this one is his.

For today that is all. I wish there was a Cider Fairy. I'm too tired to drive to the shop.

Monday, 28 July 2014

once more with feeling

I think that you have to be a special kind of person to elect to work with life-limited children.

We've just had a check-in with N's Paediatric Consultant - the one who is the case lead, that co-ordinates all the care that she receives. He checked her over, we talked about the Neuromuscular Clinic appointment at Bristol last month; we told him that we have, this morning, received acknowledgement from Great Ormond Street that they will be sending us out an appointment; and then he had to look me in the eye and say that even if GOS *do* find something, it'll pretty much certainly be untreatable.*

He must do this every single day, several times a day - his speciality is neuromuscular stuff. He's still engaged, kind, informative and really, really good with N.

I knew what he was going to say when we went in there. We both did. It didn't make it any easier though.

I am so grateful to all the people who work with N and with us. They are truly amazing on all sorts of levels and although it's all shit, the fact that they are so good makes it very slightly less so.

We go back again in six months, to do the same thing again.

* unless there's something they can do with Co-Enzyme Q, which is a stonkingly small possibility.

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.

Wednesday, 9 July 2014

transport resolution

We had a week of respite at the hospice last week and this time I think it has actually allowed me to recoup some of my energy. I have been meaning to write this update to the transport battle since before we went away but events got away from me a bit.

A fortnight ago, we finally got some resolution. The Transport Commissioning Manager, the Fleet Co-Ordinator and the SEN Casework Manager came out to our house for a meeting. The solution they proposed was that one of the SCC fleet of minibuses would come and pick N up in the morning and drop her home at night, fitting the run in before they did their other routes. N went off on Monday morning in the bus, with her escort, waving to us all like the Queen. She's absolutely delighted with herself being grown up enough to go on her VERY OWN BUS TO SCHOOL.

I have learned various things from this whole experience.

Firstly, I estimate I have easily put forty hours of my time in to sorting this out. This is time that I could have been using to parent or to work. Or even rest, maybe! If I hadn't been able to carve that time out, we would have been stuffed. We would also have been stuffed if I wasn't articulate, well-educated and bolshy. In my opinion, a way for parents to exchange information about this sort of thing would be really helpful - I have set up a fb group aimed at parents in Somerset for this reason. Linky on the right sidebar at the top.

Secondly, why did I have to raise a formal complaint, get my local councillor and my MP involved? I also threatened SCC with the media. I am not sure which of these, if any, had any effect.

Thirdly, and most importantly in my view - all the other issues fall out of this - why is Somerset County Council's SEN system so inflexible that one person out of commission means the entire system grinds to a halt? It transpired during the meeting that our SEN Caseworker has been dealing with a close family bereavement and has not been in work very much. This explains why they were so difficult to get hold of. It's simply wrong for a public service funded by the tax payer to support vulnerable children and their families to be so fragile. For a senior manager to sit in my living room and say (paraphrasing) 'Yes, it was all a bit of a mess, we couldn't get in to the SEN Caseworker's inbox and when we did there were all these emails!' is simply unacceptable. All along, their communication with me has been pants.

I know budgets are tight and I know that councils are having to tighten their belts all over the place. But I think that a case can be made for Somerset having gone to far. And if they have gone too far in the SEN department, where else have they pared the system back so far that it is simply no longer robust enough to cover staff having time off?

I don't want to live in a society where we don't look after our most vulnerable members. I don't want to be part of a community that has been so divided by biased media reports and government spin that a large number of it's members actually believe that all people on benefits are scroungers. I also don't want to live in a community that doesn't support the unionisation of workers for better pay and conditions - some of the rhetoric on the Bishops Lydeard facebook page in response to a bulletin about the school being closed for strike action tomorrow is mean and spiteful.

I am grateful that this issue is now resolved. But I have no faith at all that I am not going to have to fight similar battles on N's behalf again and again and again over the coming years. My friend N, who blogs at Colour It Green said to me some time ago that 'being the parent of a child with special needs shapes you as a person. This is not necessarily a bad thing'. I don't like the person that I am becoming and I need to find a way to change that.

In other news, my rabbit bite has healed and a long-time blog-friend is coming to visit us for the first time ever, in August. So there are some good things happening.

For today, that is all.