Not able to have powered wheelchair?

[chrissie57]

Good morning, everyone.

After MANY months of waiting, Doug's wheelchair arrived this morning. Unfortunately it is a manual and we were expecting a powered chair.

I rang the OT immediately and she says Doug is unable to have a powered wheelchair with MND at his stage and she was quite clear that they provide the chair and the carer is supposed to push it. Well that would be me. I have a heart condition, which is not a huge deal day-to-day but which make it impossible for me to contemplate pushing a wheelchair plus occupant. I have mentioned my health problems occasionally but it seems a bit churlish to make a big deal of what is a minor issue compared to MND.

So is our OT correct (she is coming round this afternoon to talk about it) and we have misunderstood what is available to Doug? The chair is his last hope of any independence. We could also have purchased a manual chair privately months ago instead of hanging on for what we thought would be something better - they have kept him waiting for months (which he may not have to spare&#128549 only for him to be disappointed.

I do hope this makes sense, I am really upset about this

[Gillette]

Hi Chrissie

Oh no, what an awful disappointment! I can’t imagine why it should have taken so long to get a wheelchair.

Have you thought of ringing MND Connect to ask for advice?

It’s not at all churlish to mention your heart problems - it affects both of you. After all, if you’re not able to push Douglas in the chair, it’s not going to be much use to him.

I’m not sure what else to suggest.

[chrissie57]

Hi, Dina
I did think about ringing the MNDA - especially when I found there is a version of the Salsa Mini which they helped design for sufferers of the disease.
Is your chair powered? What will you do later if you are unable to 'drive' your own chair?
We are just disappointed, really. If it is a matter of financing it we would probably be able to manage it so all not entirely lost, just wish we hadn't lost so much time

Chrissie x

[Ellie]

I don't blame you for being upset Chrissie and your health issues *should* be taken into account - your ailments are just as relevant as Douglas's, especially if they impact on your ability to safely care for him.

Have a read of this before you see the OT.

https://static.mndassociation.org/app/uploads/2012/04/19135721/information-sheet-p2-wheelchairs-for-people-with-mnd.pdf

I rang the OT immediately and she says Doug is unable to have a powered wheelchair with MND at his stage ...

Did she elaborate as to why?

Also, there are 'manual' chairs with a battery pack, so the strain is taken out of pushing.

Love Ellie.

[Gillette]

Hi, Dina
I did think about ringing the MNDA - especially when I found there is a version of the Salsa Mini which they helped design for sufferers of the disease.
Is your chair powered? What will you do later if you are unable to 'drive' your own chair?
We are just disappointed, really. If it is a matter of financing it we would probably be able to manage it so all not entirely lost, just wish we hadn't lost so much time

Chrissie x

Hi Chrissie

Yes, mine is powered: it’s the Salsa Mini 2. I’m beginning to find it difficult to drive it so am going to ring the Posture and Mobility Service (the Wheelchair Team) who provided it, to see if something can be done to help.

I understand completely about the time that’s been lost.

[Sportingmac]

Seems that getting a truthful explanation for refusal from NHS services is a common compliant. The OT would have to apply to a 'nameless' NHS Panel that seems not to publish minutes of meetings - ask for a copy of the application and a copy of the minutes or decisions from that meeting.

I have done so via my local CCG and my Rehab consultant - CCG says OT can supply the info - nothing yet - only been 8 weeks though.

The OT should be looking at future needs and working to meet those on your behalf.

I'll let you know how I get on. In the meantime ask the OT for decisions/minutes that offer an explanation - not from the OT but the NHS Panel.

Best of luck

Chas

[chrissie57]

Thank you, Ellie and Dina

Ellie - I took her to mean that Douglas would not be able to operate the chair. He can still move his arms but has no real strength in them now and his hands are curled inwards so he finds it difficult to hold anything.
If there is a chair with a battery pack to make pushing easier, I hope that could be a solution.

Dina - I hope they can do something to make sure you can continue zipping around in your chair.

To be fair I have only ever mentioned my health in passing - until today, it didn't seem to have a huge impact on Doug's situation; I guess I should have made myself clearer😕

[Ellie]

Chrissie, you're right to say the special MNDA Neuro Spec powerchairs are best suited to Doug.

For us, a wheelchair is NOT about getting from A to B, but needs to provide comfortable seating, back support, foot support, head support, tilt in space and recline function as our bodies wilt. That's why the MNDA collaborated with 3 wheelchair manufacturers...

There are alternative drive methods such as head controls - I saw someone driving using switch controls at the knees - and attendant controls whereby a carer drives the powerchair (these may be hard to get but maybe something worth buying IF the OT cops on and provides a powerchair)

My hands can only grip, so someone physically places my hand on the drive joystick, of which there are various shapes and sizes, and I use my shoulder strength to drive with very little effort.

Hope the OT sees sense and, as Dina suggested, ring the Helpline if you're getting nowhere.

Love Ellie.

[Deb]

Hi Chrissie, This seems so unfair ! I'm not surprised you are upset and low.

Your health needs, like Douglas's are so important and a manual wheelchair is really physically hard to push, especially uphill or over kerbs. It is also really uncomfortable as there is no suspension. My husband used to really struggle with his back pushing me and I am fairly slight and I wasnt mad keen on relying on his driving !

I spend all day in my Salsa mini powerchair so it needs to be comfortable and supportive. As Ellie says it is not just to move around. Wheelchair services have been really patient with me as I had them to our home to change the backrest, head and foot support (and then back to the original one !!) They are now sorting a new air rotating cushion. I guess you dont know what suits until you try it although they have assured me they have had more demanding clientele !

I can work the hand control Ok but it is very sensitive so it only needs the slightest movement. At clinic I have seen the same powerchair with eye, or attendant control .

I was referred to wheelchair services when I was diagnosed by the MND nurse and in Leeds they have an MND wheelchair specialist. It wasn't an OT and it seems so unfair that this service is not available to everyone.

Everything I can is crossed for you both,
Love Debbie x

[JAY TEE]

Christie, I have been lucky my MND down my left side and now cannot walk and talk. Luckily right side ok. I was given a Salsa M2 wheelchair by Local Council Dudley in the Black Country. I have had it for four years now and I sit in it all day. They upgraded the seat pad as well it very comfortable. You could try your local authority. Best wishes John

[Lynne K]

Chrissie, I'm flabergasted by the refusal to give your Doug a powered wheelchair. I got mine through the local wheelchair services after my OT referred me. She had told me how difficult it was to get a chair. They would not give them for just outside. People had to be unable to safely walk inside too. I only got mine because of the amount of falls that I'd had at home. My OTs reason for requesting a powered chair was to avoid falls.

I wish Doug and yourself have luck on your side on overturning this seriously wrong decision. Having problems with his hands doesn't mean Doug can't make use of a powered wheelchair. As was said above other means of driving a wheelchair are available.

A word of caution. You probably won't be allowed to add a power pack to the manual wheelchair Doug was given. I asked my wheelchair provider and they refused. I had searched online for how to change a manual chair to a powered one, and this can be done, but it'd have to be a chair that you bought. That would be only a temporary measure because manual chairs do not give upper body and neck support. Nor are they a comfortable ride because no suspension.

I hope that you have good news soon. Lynne xx

[Jude11]

Hi Christie
I waited four months for my power chair but they can supply one with a easy to use ball control and also control on back that you can use when your husband is too tired. Keep nagging them and you must mention your own health problems.

Good luck
Judy x

[miranda]

I would definitely contact MNDA to progress this for Doug (and you!). They used to have a specialist wheelchair person but I'm not sure if they still do. This is a totally unacceptable situation for you both. I know someone with "curled" fingers who can operate the joystick if someone places her hand on the control. Another person operates the control with a sponge ball under his chin!

[Kayleigh]

I would definitely contact MNDA to progress this for Doug (and you!). They used to have a specialist wheelchair person but I'm not sure if they still do.

Hi Chrissie and Miranda,

The MNDA have a Wheelchair Support Service:-
https://www.mndassociation.org/suppo...chair-service/

Love
Kayleigh x

[Barbara236]

Can a person in a bad MND stage still use electric wheelchair? They able to move their hand properly?
I'm asking as we need to buy one for my dad (he only received used, basic one, with no head support from our social services and it's been taken away after they gave my dad special bed - saying that since he needs the bed, they consider him to be a patient who doesn't move at all). Has anyone tips on some good manual wheelchairs suitable for MND?