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Stairlifts

GuestGuest Posts: 1,968Member
edited September 2014 in Disability aids and equipment
Hi,
I'm new to the forum and am seeking advice re stairlifts for my 2 year old son, George. He has severe cerebral palsy (spastic quadraplegia, although having said that his tone is quite mixed, sometimes very stiff, sometimes very floppy). Although still very tiny for his age (11.5 kilos) he is getting to be quite a weight to lift, not helped by varied muscle tone and a tendency to throw himself back. I am now 8 months pregnant with my second, going in to have a C section middle of April, so carrying George will be problematic for some time (strong husband and carers on hand at certain times of day, but majority of time just me).

Georges bedroom is upstairs as we just do not have the space downstairs (only option being our conservatory, but very cold in winter and like a sauna in the summer). Our OT suggested a stairlift last year when I told her I was pregnant. We were referred to a social services OT who visited with a rep from a stairlift company to assess George and house etc, this was back in November. Both agreed he would be suitable, we visited their show room, tested George on their stairlift and were told it could be adapted to his needs. It has to be said George wasn't too sure at first, but we are used to this when we try him in any new bit of equipment.

Stairlift was fitted at beginning of January by a 12 year old (slight exaggeration, but a very junior 'engineer' from company) but contained no special adaptions or methods of support we had been initially told about. 12 year old was surprised to see size of George as if expecting bigger child. I got on to the company staight away who told me they had ordered a special harness for George, after 4 long weeks and many phone calls it eventually arrived. Manager of company told me he would deliver and fit it himself, but instead sent another 12 year old. Harness unsuitable, takes 2 people to secure George as he becomes an ironing board once he realises what we are trying to do. It has velcro fastenings but once George arches his back you can hear the velcro opening, not disimilar to a scene from the increbible hulk! Another harness is now on order (a crelling harness) but pictures of this don't fill me with hope. The seat is still too big, the head support is inadequate (he has very poor head control), the space between the seat and the arms is too big...it's just very unsafe and has remained unused since January. As for the OT from social Services, well she has been totally useless, and I found out yesterday has no experience of children, she works for the adult team but was assigned to George in order to reduce the waiting list! I am furious and have told her if the seat can not be made suitable by the end of the week I want it taken away. I also said if it is taken away I want a new carpet fitted as it had to be drilled through to fit the lift, her response was 'oh don't worry, there's plenty of money in the budget for new carpet'!!! She can not see the urgency of the situation and can not understand that this unused stairlift is such a hazard on our stairs, it is not a small bit of kit and I'm worried one of us is going to fall over it.

So I am making a complaint with the help of our normal OT, but this does not solve the problem of getting George up and down the stairs.

Does anyone know of a company who make stairlifts for small children, with a bucket shaped seat like a car seat? Or perhaps a lift that I could sit on with George on my lap? We realise this would only be a short term solution, we hope to move house in a year or 2 and obviously he'll then have a bedroom on the ground floor.George sits in a 'whale' chair during the day (specially adapted high chair) and also still uses a tumble form chair for chilling out moments.

Any ideas or advice would be gratefully received as time is running out! Thank you, sarah.

Replies

  • klixklix Posts: 6Member
    Thanks for your advice, I'll look out for the adverts. We've got the added problem of having a square bend in the stairs, still life's not meant to be easy is it??????
    Good luck with moving that's what I'd prefer to do but not financially possible now.
  • mafalamafala Posts: 72Member Listener
    Square bends are not a problem for chair lifts.

    We thought it would be cheaper to put a chairlift in than move, but the wheelchair service will not provide a power chair for our son unless we live in accessible housing. We have steps outside our building and they are too steep for a ramp. It's never easy, as you say...;-)
  • klixklix Posts: 6Member
    Hi, My son Mason is 3 and has CP and cannot sit up unaided, walk, talk etc etc but he is the happiest little man ever!
    Does anyone know of a company that can provide stair lifts for kids like Mason so that we can avoid having a through floor lift put in?
    I now suffer with a protruding disc from carrying him everywhere and social services think that the lift is the only option but I'm not convinced.
    We only live in a 2 bed terraced so wouldn't have any room to breathe if they go aheads with their plans.
    All advice sincerely welcomed.
  • GuestGuest Posts: 1,968Member
    Hello Playit.

    Have you contacted the Disabled Living Foundation? They may be the best source of information on this subject. You can call their helpline on 0845 130 9177, or go to www.dlf.org.uk.

    Kind regards

    Forum Moderator
  • mafalamafala Posts: 72Member Listener
    Hi Playit,

    Have you seen your son's OT about the stair lift? It should really be under their remit to investigate for you and get reps to come and have a look and talk to you about funding. I understand that the disabled facilites grant is now available to all families with disabled children, although when I spoke to the person responsible for that in our borough they were not sure, hmm. We are in the same predicament as you as we live in a first floor flat, but we have decided to move instead. I have to say that the only trouble with stair lifts is that if your child can't sit unsupported, it's hard to find appropiate seating as they only make seats for adult. If you look at the back of Disabled Now and other magazines you can see lots of adverts for stair-lifts, if you want to pursue it yourself and pay for it yourself.


  • domdom Posts: 5Member
    We were told by our SS OT that they wouldn't put a stairlift in for a child that couldn't self-transfer as their aim is too eliminate all lifting to prevent injury to parents and carers.

    We are looking at moving as their plans will mean that we have no family living space (not their problem), so are having to grovel to everyone to raise the cash needed!!

    I am not convinced on through floor lifts either. I know another family locally with an 8 year old daughter with cp who won't be able to get her next size wheelchair into the lift, so are also having to move. A through floor lift is the last option as far as I'm concerned.

    Dom
  • klixklix Posts: 6Member
    It seems so easy to know what you need but what a pain to get it. We're now thinking that maybe a structure of hoists around the house would be better or more available.
    If I get anywhere I will pass on all info - thanks for all the input,

    Sam
  • CarolineDesRCarolineDesR Posts: 1Member
    We currently use a hoisting system. They put the structure up in each room this is the best way to discribe them they are quite a eyesore but serve there purpose. If you have a funny room shape it might be hard to fit as i am currently waiting to get a system for the bathroom.

    The O.T called them portable hoisting system so i can easily take the tracking with me when i move house. My son enjoys being in a standing sling as he can glide across the room on his own.

    Have you thought about putting some sort of seating system on to a stairlift for your child to be fastened on to as i know my son wouldnt be able to sit unaided and this option was suggested to me once i was offered a house with a lift
  • klixklix Posts: 6Member
    Well, we've finally had two companies round to do estimates. Once was Acorn and one was Dolphin. The Dolphin one seemed much better and was nearly
  • sarahksarahk Posts: 2Member
    Hi,
    I'm new to the forum and am seeking advice re stairlifts for my 2 year old son, George. He has severe cerebral palsy (spastic quadraplegia, although having said that his tone is quite mixed, sometimes very stiff, sometimes very floppy). Although still very tiny for his age (11.5 kilos) he is getting to be quite a weight to lift, not helped by varied muscle tone and a tendency to throw himself back. I am now 8 months pregnant with my second, going in to have a C section middle of April, so carrying George will be problematic for some time (strong husband and carers on hand at certain times of day, but majority of time just me).

    Georges bedroom is upstairs as we just do not have the space downstairs (only option being our conservatory, but very cold in winter and like a sauna in the summer). Our OT suggested a stairlift last year when I told her I was pregnant. We were referred to a social services OT who visited with a rep from a stairlift company to assess George and house etc, this was back in November. Both agreed he would be suitable, we visited their show room, tested George on their stairlift and were told it could be adapted to his needs. It has to be said George wasn't too sure at first, but we are used to this when we try him in any new bit of equipment.

    Stairlift was fitted at beginning of January by a 12 year old (slight exaggeration, but a very junior 'engineer' from company) but contained no special adaptions or methods of support we had been initially told about. 12 year old was surprised to see size of George as if expecting bigger child. I got on to the company staight away who told me they had ordered a special harness for George, after 4 long weeks and many phone calls it eventually arrived. Manager of company told me he would deliver and fit it himself, but instead sent another 12 year old. Harness unsuitable, takes 2 people to secure George as he becomes an ironing board once he realises what we are trying to do. It has velcro fastenings but once George arches his back you can hear the velcro opening, not disimilar to a scene from the increbible hulk! Another harness is now on order (a crelling harness) but pictures of this don't fill me with hope. The seat is still too big, the head support is inadequate (he has very poor head control), the space between the seat and the arms is too big...it's just very unsafe and has remained unused since January. As for the OT from social Services, well she has been totally useless, and I found out yesterday has no experience of children, she works for the adult team but was assigned to George in order to reduce the waiting list! I am furious and have told her if the seat can not be made suitable by the end of the week I want it taken away. I also said if it is taken away I want a new carpet fitted as it had to be drilled through to fit the lift, her response was 'oh don't worry, there's plenty of money in the budget for new carpet'!!! She can not see the urgency of the situation and can not understand that this unused stairlift is such a hazard on our stairs, it is not a small bit of kit and I'm worried one of us is going to fall over it.

    So I am making a complaint with the help of our normal OT, but this does not solve the problem of getting George up and down the stairs.

    Does anyone know of a company who make stairlifts for small children, with a bucket shaped seat like a car seat? Or perhaps a lift that I could sit on with George on my lap? We realise this would only be a short term solution, we hope to move house in a year or 2 and obviously he'll then have a bedroom on the ground floor.George sits in a 'whale' chair during the day (specially adapted high chair) and also still uses a tumble form chair for chilling out moments.

    Any ideas or advice would be gratefully received as time is running out! Thank you, sarah.
  • mafalamafala Posts: 72Member Listener
    Sounds like you're having a complete nightmare.

    We investigated the possibility of a stairlift for our son, but the OT came to the conclusion, having checked with several companies, that they don't do specialised stairlifts for children. You might be able to find a company willing to adapt one, possibly. In the end we decided to move to a flat with a lift on one level. Sorry, I'm sure you didn't want to hear this, but that was our experience of stairlifts.
  • squirrellsquirrell Posts: 2Member
    If you weren't planning on moving house in a couple of years I'd suggest you enquire about a DFG. I think it's
  • sarahksarahk Posts: 2Member
    Thank you for your suggestions.

    Amazing what can happen in a week when doing own research and by passing rubbish social services. Last week I started phoning around stairlift companies and have found out that Stanna provide a childrens stair lift, it sounds like it might be suitable. I have rep coming out today to meet us. He is then coming back early next week with another guy from a company called R82 who actually manufacture the seat (I think both companies work closely together), it is a panda seat. Apparently the seat itself takes up quite a bit of space but can be taken off when not needed. I have arranged for our usual OT to be here during both visits.

    Thank you for advice re making a complaint, I have been so angry and upset about all this but since taking matters into my own hands I feel calmer and more able to write a sensible letter (am still angry but not in an hystrerical head spinning way). Just wish I hadn't been so naive and put all my faith in social services, a lesson well learnt I suppose. If the stair lift dilema was the only stress in my life then I probably would have been more on the ball, but we have so much else to deal with at the moment, life is so frustrating.

    Thanks again x

  • Boro4215Boro4215 Posts: 1Member
    edited June 2015
    I had similar issues finding a stairlift for our overweight son, you may find the following liks useful when deciding which product to purchase. Good luck

    http://www.stannahstairlifts.co.uk/

    http://www.stannahstairlifts.co.uk/site/product_indoor_curved.asp
  • Raine3Raine3 Posts: 2Member
    If you earn under
  • Sarah001Sarah001 Posts: 1Member
    I haven't read all the previous comment, so somebody may already have mentioned this company, but have you tried:

    http://www.topflightstairlifts.co.uk/
    http://www.topflightstairlifts.co.uk/stairlift-ranges/heavy-duty-stairlifts.html
    http://www.topflightstairlifts.co.uk/stairlift-rentals.html

    They offer heavy duty chairlift options and rentals, hopefully they'll be able to help you with your query.

    They were extremely helpful with my circumstances and are very competitively priced.

    All the best.
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