When you have a physically disabled child, you get a referral to the Orthotics and Prosthetics Department at the local hospital. They organise fittings of splints, casts, specialist shoes etc etc.
My daughter needs specialist shoes, amongst other things. Without them, she cannot bear her weight at all, as she needs the extra support that they give her round her ankles.
These days, she received the Orthotic Service through school. Last summer, when her supportive sandals became too small, we asked for a pair of winter boots to be ordered. These boots cost about £80, but you are not able to buy them in the shops, or even online.
We were told that she no longer needed supportive footwear and that we could just buy any old pair of shoes off the peg.
Well, we didn't believe that! For one thing, we need her to weight-bear to assist with transfers - on and off the loo, in and out of her wheelchair etc. Another is her comfort and of course her dignity.
So, we had to pay £120 and travel to London for an independent assessment, by a private orthotist who, of course, recommended specialist footwear (and splints, for that matter).
So, £120 of our money, in order to get £80 of the NHS's money. Great.
The boots are on the small side and it will be Spring soon ... just gearing myself up to go through it all again.
Monday 24 January 2011
Tube Feeding
Before I had my daughter, I didn't know anything about tube feeding and I suppose your average person wouldn't.
It turns out that she is unable to eat anything, or drink anything, by mouth. That has always been the case, since she was born over nine years ago.
At first, she was fed by a naso-gastric tube, which we had to put up her nose and down the back of her throat up to five times a day as she kept pulling them out. When she was seven months old, she had a gastrostomy fitted, which is a tube directly into her stomach, accessed by a tube from the outside. You put the food in with a big syringe.
These days it has become a normality for us. We get a monthly delivery of tubes and syringes and a new gastrostomy 'button' every three months or so.
There have been times when we've run out of equipment before the next delivery is due and we have had to fight hard to get what we need and it is still tightly rationed. I know these things are expensive, but it is the ONLY way we can feed our daughter!
It turns out that she is unable to eat anything, or drink anything, by mouth. That has always been the case, since she was born over nine years ago.
At first, she was fed by a naso-gastric tube, which we had to put up her nose and down the back of her throat up to five times a day as she kept pulling them out. When she was seven months old, she had a gastrostomy fitted, which is a tube directly into her stomach, accessed by a tube from the outside. You put the food in with a big syringe.
These days it has become a normality for us. We get a monthly delivery of tubes and syringes and a new gastrostomy 'button' every three months or so.
There have been times when we've run out of equipment before the next delivery is due and we have had to fight hard to get what we need and it is still tightly rationed. I know these things are expensive, but it is the ONLY way we can feed our daughter!
Sunday 23 January 2011
Wheelchair Clinic
I actually count my daughter's current wheelchair as one of my successes. However, I think it is important to explain how we got it and all that we had to go through.
My daughter is at risk of hip displacement and curvature of the spine. Many severely disabled children are the same and there are plenty of children of a young age with dislocations and looming surgery.
Obviously we want to avoid this, or put it off, for as long as we possibly can.
Up until about six months ago, my daughter's wheelchair was 'off the peg'. She was unable to sit in it properly and slouched, sitting on her sacrum, rather than her bottom. Her top half was also slumped and her feet were not properly secured.
It was very obvious that she needed a moulded seat for her chair. This process is done up in Oxford at the wonderful Oxford Centre for Enablement where they place your child in a giant sized bag of polystyrene balls, position her, then suck all the air out, leaving a perfect supportive mould.
Four appointments, each of about three hours later, we had our beautiful new chair! My daughter sits beautifully in it and it has helped her every day function hugely.
However, the whole process took well over a year from realising we needed it to actually getting it. I had to find out about what was available myself and have several rows and hundreds of phonecalls to chase up in the process. For one thing, we needed the referral of my daughter's consultant - someone we only see once every six months!
My daughter is at risk of hip displacement and curvature of the spine. Many severely disabled children are the same and there are plenty of children of a young age with dislocations and looming surgery.
Obviously we want to avoid this, or put it off, for as long as we possibly can.
Up until about six months ago, my daughter's wheelchair was 'off the peg'. She was unable to sit in it properly and slouched, sitting on her sacrum, rather than her bottom. Her top half was also slumped and her feet were not properly secured.
It was very obvious that she needed a moulded seat for her chair. This process is done up in Oxford at the wonderful Oxford Centre for Enablement where they place your child in a giant sized bag of polystyrene balls, position her, then suck all the air out, leaving a perfect supportive mould.
Four appointments, each of about three hours later, we had our beautiful new chair! My daughter sits beautifully in it and it has helped her every day function hugely.
However, the whole process took well over a year from realising we needed it to actually getting it. I had to find out about what was available myself and have several rows and hundreds of phonecalls to chase up in the process. For one thing, we needed the referral of my daughter's consultant - someone we only see once every six months!
Incontinence
I thought I'd start with something pleasant!
My daughter is partially continent. When she is at home, that is. She wears pull-ups, just in case, but mostly manages to indicate when she needs the loo, so that we can take her. She has a specially adapted toilet seat which works pretty well.
Unfortunately, because of lifting regulations and because my daughter is not able to wait very long, school have asked that she goes back into nappies. That way they can change her when there is enough staff available, rather than taking her to the toilet when she needs to go.
This, as you can imagine, is very upsetting and an insult to the progress she has made in this area.
However, it has meant that we are not in the uneviable position of liaising with the Incontinent Team in order to get nappies for free. A child in this area is allocated FOUR nappies (or pull-ups, but four in total) per day. It is just tough if you need more. You cannot buy them from the shops, because they don't sell them big enough, so you just have to manage.
The nappies that my daughter has been assessed as needing are the adult size 'extra small'. They are huge and bunch up underneath her, causing a rash. We were sent a different one to try, on the strict understanding that this was the only alternative available, but they leak badly.
So what do we do? I am honestly not sure. We are limping along with the awful ones that cause a rash and bunch up and using highly expensive 'Dry Nites', which we buy ourselves, at home. Her toiletting is not going to improve much when school have put her back in nappies - or 'pads' as they call them if you are still using them after infancy.
I guess we keep pressing the Incontinence Team to seek out alternatives that are comfortable and do the job. Also keep pressing school to encourage toiletting skills, rather than discouraging them.
Two more jobs for the list this week. And neither of them will be solved overnight, I can tell you.
My daughter is partially continent. When she is at home, that is. She wears pull-ups, just in case, but mostly manages to indicate when she needs the loo, so that we can take her. She has a specially adapted toilet seat which works pretty well.
Unfortunately, because of lifting regulations and because my daughter is not able to wait very long, school have asked that she goes back into nappies. That way they can change her when there is enough staff available, rather than taking her to the toilet when she needs to go.
This, as you can imagine, is very upsetting and an insult to the progress she has made in this area.
However, it has meant that we are not in the uneviable position of liaising with the Incontinent Team in order to get nappies for free. A child in this area is allocated FOUR nappies (or pull-ups, but four in total) per day. It is just tough if you need more. You cannot buy them from the shops, because they don't sell them big enough, so you just have to manage.
The nappies that my daughter has been assessed as needing are the adult size 'extra small'. They are huge and bunch up underneath her, causing a rash. We were sent a different one to try, on the strict understanding that this was the only alternative available, but they leak badly.
So what do we do? I am honestly not sure. We are limping along with the awful ones that cause a rash and bunch up and using highly expensive 'Dry Nites', which we buy ourselves, at home. Her toiletting is not going to improve much when school have put her back in nappies - or 'pads' as they call them if you are still using them after infancy.
I guess we keep pressing the Incontinence Team to seek out alternatives that are comfortable and do the job. Also keep pressing school to encourage toiletting skills, rather than discouraging them.
Two more jobs for the list this week. And neither of them will be solved overnight, I can tell you.
Saturday 22 January 2011
Fightback Mum Opens
This blog has been set up following the Riven Vincent case. Riven has a six year old daughter who is severely disabled. This week, Riven told her Local Authority (Bristol) that because they were unable to provide additional respite hours for her daughter Celyn, that she was unable to cope and that Celyn should be taken in to care.
I have a severely disabled son. I live in Berkshire. On BBC Radio Berkshire this week, this case was highlighted by Andrew Peach on his Breakfast Show. Lots and lots of us mums spoke on the show about our various situations.
The one word that all of us came back to was FIGHT. The Fight being what we have to do in order to get the merest basics for our children. I am not talking about luxuries here, I am talking about feeding apparatus, footwear, chairs, toilet seats etc.
We cannot change the fact that our children are disabled. We cannot change the amount of money that is available. But the fighting that we do needs to stop. That is something that CAN change.
I intend to use this blog to highlight the fighting that I have to do on a weekly basis. I can promise you that none of it will be exaggerated or fabricated.
I hope that as many mums (dads, carers) of disabled children who feel so inclined will contribute to it. That way we can really show society what is going on and pressure the service providers into at the very least making it easier for us.
I have a severely disabled son. I live in Berkshire. On BBC Radio Berkshire this week, this case was highlighted by Andrew Peach on his Breakfast Show. Lots and lots of us mums spoke on the show about our various situations.
The one word that all of us came back to was FIGHT. The Fight being what we have to do in order to get the merest basics for our children. I am not talking about luxuries here, I am talking about feeding apparatus, footwear, chairs, toilet seats etc.
We cannot change the fact that our children are disabled. We cannot change the amount of money that is available. But the fighting that we do needs to stop. That is something that CAN change.
I intend to use this blog to highlight the fighting that I have to do on a weekly basis. I can promise you that none of it will be exaggerated or fabricated.
I hope that as many mums (dads, carers) of disabled children who feel so inclined will contribute to it. That way we can really show society what is going on and pressure the service providers into at the very least making it easier for us.
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