Hi All, just had wheelchair delivered nhs standard variety with brake which is good for husband. Whilst the need isn't urgent I can see decline and need just around the corner as the wobby walker only helps for short distances. BUT... how do you manage??😩 We've just had a practice and I can just about push 6ft and 14.5stone but not a cat in hells chance of tilting him and it to get over any kind of lip in road or pavement..even dropped curbs has some undulations. Funny the wheelchair service avoided speaking about this during all instructions🤨 Because of my height 5ft nothing and weight 7.3stone we were advised to investigate and buy a power-packed but my logic says that will be even heavier to tilt over curbs and different surfaces. Any advise on how to get better wheelchair on nhs I know they do sometimes provide more than standard (apparently I was lucky to get brake addition) or one you have bought yourself. Or any hints and tips using the chair. Can you tell I'm a bit frustrated today thanks all x
Bl--dy Wheelchair advice needed: Hi All... - PSP Association
Bl--dy Wheelchair advice needed
I understand your anger & frustration. I had the same problem. I took their advice & bought a power pack which was as you described. It made the chair heavier, wasn’t powerful enough to get my husband up steep hills & fell off in the middle of the road. I asked social services for an electric chair. I had a 45 minute interview with forms to fill in. I told them my back hurt pushing C around and he’d already spent 2 weeks in a home when I was immobile. All seemed to be going well until she said she would have to come to our home to see him using it himself. She could see he was unable to do that & said if I had asked for one earlier he could have propelled himself but when he became unable to do this, I could pay £150 to have the controls moved so I could ‘drive’ it. They aren’t given for the carers benefit. I ended up paying a huge amount and bought one. It was the best piece of equipment we had. We could then go to parks, NT properties, coast anywhere, which we did several times a week until 3 weeks before he died. With his PEG feeder on the back of the chair we went to restaurants & the theatre. I hope you find a satisfactory solution to this awful situation.
Best wishes.
NannaB, thank you. Its so frustrating when they fob you off with standard equipment and tick the box and away without truly considering needs. I think it really shook me today I'm quite fit and flexible but being small and thin I can't do weight and lift so it frightening thinking about what's coming. Your I fo about self propelled then adjusted later is useful as Glenn could propell at moment so I will investigate. In meantime if you have any further info on what you bought I would be very grateful. We are going to visit mobility centre to look and I've just been looking on line but it's a bit of a minefield there are so many that say electric carer controlled and its hard ploughing through the advertising hype when you don't really know what you are looking for and what needs we might have next week, next month and so on. Thanks for your help x
Hi this is exactly the situation I’m in! I’m four foot ten and Phil is five foot ten and weighs 17 stone. He got a wheelchair before Christmas and the lady from wheelchair services said it’s not the chair that’s hard to push, it’s the person in the wheelchair. I’ve only been able to take him out in it once because I discovered that there are no dropped kerbs where we live and I darent risk try to get him off the kerb because of our weight/ height difference. You can buy a battery pack for the wheelchair which will make it easier to push, but again, the lady from wheelchair services told me that they are not easy to fit. So at the moment we’re at a standstill.
Thank Redjune1, it's frustrating isn't it . I'm going to do some research and questioning and if I find a better solution I'll let you know.
Please do let me know. We bought a power chair for Phil last year costing £3000. We didn’t try it out straight away but when we did it was obvious that he couldn’t cope with the joystick and he couldn’t steer it at all. I wanted to return it to Eden Mobility but when I looked at their terms and conditions it said you had to return goods within a week of purchase and unused! So I tried to sell it without any luck and we ended up giving it to charity.
I’ve been told that a wheelchair with the big back wheels is much easier to push than the ones with small wheels like we’ve got.
Hi I think we have the bigger back wheels buts it's so heavy and with a person in like you have found getting over any kerbs is dangerous as you have to tilt. I am going to challenge to see what we can get in a carer controlled power assist variety. Like you have found I don't want to buy something unsuitable or something that only works for a while. Looking at the Internet there are so many light power assist and carer controlled chairs my thinking is surely the nhs can provide something better so that's my mission. I'll keep you posted xx
Good luck I hope you get somewhere with your mission. I’ve decided that I’m going to ask the OT if we can have a carer assisted wheelchair. I’ve now been out twice with Phil in the wheelchair recently. We had hospital transport to two appointments and I pushed him once we were in the hospital. It was ok but of course it was flat which made it easier. I don’t know how successful I would be just taking him outside for a walk.
I too had a problem with the wheelchair service. We already had a standard type but it was becoming unsuitable for my husband. They came with a couple if types but at 5ft I found it virtually impossible to manouvre them in the house, let alone outdoors. I asked for an electric one that I could steer and they said they would get back to me. A year later I had a call from the OT who had come to see me to see how we had got on. As I'd had no contact in the meantime I told her it was too late as by then my husband had been bed bound for a week. He died a couple of weeks later. We had had ramps fitted and every other modification done as required. The NHS had been wonderful supplying kit as and when required but the wheelchair service, sadly came up short.We were fortunate that my husband wasn't interested in going out due to the apathy that goes with PSP & CBD. We have a lovely garden and he was happy to be able to sit out when he could.
Hope you find a solution, keep pn keeping on.
AnneandChris, I'm so sorry you faced this and it isn't acceptable. Glenn does want and can go out and I get him walking as much as possible but using the walker is tiring and I feel things are changing so a wheelchair would allow us to go out for longer. I am going to request a better walker as the one we have is flimsy and provides little support. The more I hear and read makes me feel i should set up a campaign for the 5 foot nothing warriors. 😅 there are many in the same situation where standard equipment is dished out without thought to users. I am going to do some more digging to find what other solutions people have found and then get my stroppy head on for phone calls. Our OT is helpful and will come out so as she's also slight in build I'll let her try it. 😉 If anyone out there has info on Attendant controlled lightweight and maneuverable wheelchairs please do share
Take care
Just a thought, have you spoken to British Red Cross? I believe they have a wheelchair service.Hope you find a solution.
Hi Millidog
My husband is over 15 stone and with a slight incline difficult to safely push. We applied for an electric wheelchair with attendant controls as he gets tired and is not able to use it over long distances, though he’s fine using it around the home. It takes time getting use to the controls, they are quite sensitive but there are different shapes and types of joystick control, to suit the wheelchair user. The attendant control also takes some getting used to but does help when out and about. It was also a safety issue as he can’t turn his neck, crossing roads were dangerous. As soon as he is unable to use it in the home, I think we lose it and have to get our own.
I have heard about the battery packs that can be attached to a manual wheelchair but have not tried these out.
Hi thanks for your info. This sounds more like the chair we need. Why would they take it away if you can still use it outside. Our neurology assistant said use isolation and restriction of liberty as arguments for this type of chair. Xx
It is also useful getting the assisted controls, I thought a key point would be because he couldn’t move his neck and see dangers from the side but tiredness for the user is a key issue for eligibility here.
It appears if the user can’t operate it then he isn’t eligible for it. It’s the carer who wants it so you then have to pay for one!
Hi thats really useful information thank you
Same here. My husband is 19st and I’m 5ft and 65 years old, We have an NHS wheelchair which is used inside and outside the house but due to steps at the front of our bungalow and an extra wide sill on our back door, I cannot get the wheelchair out of the house. Even if I did, we live on a hill and I just cannot push the chair up the hill. Brian only goes out now if the children are here to lift/manoeuvre him in and out of the house. He can’t use an electric chair or scooter as his cognitive state plus difficulty with his grip, cause him to hit anything in his way! Consequently he hardly gets to leave the house and I only get out when someone can sit with him. Without making huge modifications to outside the house, getting a WAV car and then a wheelchair which pushes itself, I can’t see things improving any time soon
I understand the problems you're having. It's not great facing these struggles. Glenn can walk with walker at mo but gets very tired quickly so neurologist assistant advised we get a chair early. With no family and only a few new friends as we moved from nw to sw just before Glenn's problems became evident and psp diagnosed I am trying to get best things in place. I'll post again if I get any progress or solutions to share with others xx
With the WAV, we hire one. I’ve always driven small cars and not enjoyed driving that much, my husband mostly drove. He couldn’t get into my small low car, easily. When it was necessary to use the wheelchair, folding and lifting it into the boot became difficult. Fleximobility were really helpful. I now drive an automatic Fiat Doblo, hired from Fleximobility. It has an electric pulley to help get the wheelchair in.
(Sorry for the delay in replying)
Hi, me and my mum had the same issue with my dad’s wheelchair. They came and changed the tyres to a different sort which were bigger and more robust than the small ones it came with. This did make it a bit easier to push so that might be worth trying, but it was still a bit of a challenge although his carers were helpful in showing us better techniques to manoeuvre it. He’s now in a care home and keeping upright is now a challenge so going to now see if there is a different sort with more support. Good luck, it’s a horrible disease for everyone involved x
Hi thanks for your info and experiences..I think we have the larger wheels which are meant to help. My issue is more about the weight. The chair seems heavy and with a 14 5 stone man in it I haven't the strength to push on anything that isn't absolutely flat and smooth and with slight lips in pavements you have to tilt the chair and I m not able to do this
Hi All, we have a specialist neuro nurse who keeps in touch. She rang yesterday and on hearing about the chair problems is going to speak to the wheelchair service on our behalf. I'll let you all know how we get on xx
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