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.

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