OH/council refusing hoist installation

[A_Owl]

Hi everyone,

Hoping someone might have some advice. My mother has has lost her use of hands, arms and ability to stand/walk - though can still move legs and has speech and swallow).

She and my dad (her carer) live in my childhood home, which obviously has stairs. My parents paid for a stairlift at their own cost about 18 months ago when mum started to have trouble going between floors.

They are currently awaiting the installation of hoists at various points around the house (via our local council) as mum is almost at the point where she cannot get herself on and off the toilet, out of her wheelchair and into her riser-recliner/in and out of the stairlift - even with help.

The issue is that the apparent "gatekeeper" of the hoists (someone from occupational health within the council) is blocking the entire thing because "MND patients shouldn't be using stairlifts" i.e. because she doesn't want hoists installed by the stairlift on the ground and first floor - no hoists can be installed at all.

Mum's presentation of MND is fairly unusual, she has no issue maintaining an upright position whilst seated and hasn't for the duration of her symptoms. I'm not sure how the OH woman thinks mum should be getting to and from her bedroom apart from suddenly learning the power of flight.

Needless to say I'm rather furious about this as my parents have funded an enormous amount of my mum's equipment themselves (including the stairlift, a van, a hoist for the van, a riser-recliner, a wheelchair and more). All they're asking for is the hoists and this officious woman is blocking them because of some pre-conceived notion of what MND patients should and shouldn't do.

Has anyone had any experience of something like this? Or any advice on whether this woman can withhold necessary equipment in this way?

[Ellie]

A_Owl A warm welcome to the forum.

I used a stair lift for 11 years and, although I still have relatively good core strength and have no issues holding a seated position, but it did come to a stage when I found the seatback was so upright which, in conjunction with a weak neck, started pushing me forward and I could see the writing on the wall - I'm not saying this will happen with your mum, but there is more to using a stair lift than sitting alone. (We moved house, to a bungalow, but I was only one factor in the need/decision to move)

So, this jobsworth of an OT is an expert on MND, I see 🙄😏 Many people use stair lifts without issue and I would say that retaining enough core strength to use a stair lift isn't that unusual.

Can the OT's decision be appealed?
Is their house suitable suitable for a through floor lift?
Could her Neurologist give an opinion to the Council re your mum's ability to continue using a stair lift?

Hypothetically:
Could your mum use a portable hoist for the stair lift transfers if ceiling hoists were fitted for other transfers?
If all requested ceiling hoist were installed, would their positioning cover every transfer your mum needs to make or would a portable hoist also be needed?
If your mum had to live downstairs, is there space for a bed room and bathroom facilities?

Love Ellie xx

[Tabbycat]

I'm not sure why the Occupational Therapist (OT) would block this. I would definitely ring them up and discuss it with them to understand what the reasons are and ask what they suggest as an alternative?

Did they discuss the type of hoists available?
Did they do a home visit to see the space available and flooring type for using a hoist next to the stairlift, both top and bottom of the stairs?

I could see they may feel using a mobile hoist (most likely hoist to be issued) at the top of the stairs could be a potential hazard, but again they should be happy to discuss this with you and state their reasoning.

Sorry for all the questions or if I've misunderstood.

[TinyLady]

A_Owl - can't help with the hoists, but I too got an OT who was an "expert" on MND who was clearly against stairlifts. We tried to muddle through and I ended up in a hospice from falling. So we paid for our own stairlift when I got out of the hospice. We then got a rude phonecall telling us off for getting one (we had no alternative, I cannot get up even one step).

Since then she has made recommendations on the basis I am a generic disabled person, I might become bariatric and has totally failed to help. I wrote to the council and refused to have her involved in my care any longer. Listed the reasons. Got a new one now and yet to find out how willing she is to listen to what I actually want....

I really hope you can get the hoists sorted. It isn't fair we are not given personalised, expert care and advice.

[Sarahw]

I now have 3 ceiling hoists and love each and every one! Initially they were v reluctant to give me a stair lift as I wouldn’t last long enough (!) but these ceiling hoists have fantastic staying power! We didn’t qualify for local authority funding but they are worth every single penny. Probably the best piece of equipment we’ve invested in. Stick to your guns!
good luck! X

[denise]

I put our stairlift in as OT wasnt keen. I think Stephen would be able to use this for sometime to come, after all everyone's mnd is different. Not sure how I'd cope once his legs had a problem and I would have to get him on and off. Mobile hoists would have been the option we would have needed to use.

I'm always surprised at how many professionals know nothing about mnd and I'm always surprised at those who are experts. (Think we should just stick with Ellie said.....) 😘

[Banned]

...tut tut my Queen of Pain...

What else can peep do apart from ask Ellie?

...and before you ask, I am doing after care...

The Cramps Queen of Pain - YouTube

Cuddles and venomous hugs xxxx

[denise]

Think I can just about do that dance routine. Dance all my troubles away.

Thank you my prince
😘💕🤭

[A_Owl]

Thanks everyone for your very helpful replies, and thank you for the welcome to the forum - apologies for the delay in response!

To answer some questions from Ellie and Tabbycat:

Can the OT's decision be appealed? - I hope so! I'm assuming this has to be done in writing, I'm concerned that a lot of this hasn't been in writing so perhaps the OT can get away with being more difficult than she should be.

Is their house suitable suitable for a through floor lift? - yes I should think so, however the cost of this would be enormous (I assume!) and presumably not covered by the council?

Could her Neurologist give an opinion to the Council re your mum's ability to continue using a stair lift? - this is a great idea actually, I'll look into this

Could your mum use a portable hoist for the stair lift transfers if ceiling hoists were fitted for other transfers? - yes in theory, although the hallway and landing are fairly narrow which would definitely make things difficult

If all requested ceiling hoist were installed, would their positioning cover every transfer your mum needs to make or would a portable hoist also be needed? - yep it would cover all transfer needs (5 hoists in total)

If your mum had to live downstairs, is there space for a bed room and bathroom facilities? - yes there would be (again with significant building works), however her and my dad are keen to avoid this as long as possible due to the impact on my mum's already fragile emotional state

Did they discuss the type of hoists available? - as far as I know this was purely a discussion RE ceiling hoists.

Did they do a home visit to see the space available and flooring type for using a hoist next to the stairlift, both top and bottom of the stairs? - yes, two very nice OTs visited to carry out the assessment, they actually agree with installing all hoists regardless of the stairlift but the Chief OT has overruled them!

I could see they may feel using a mobile hoist (most likely hoist to be issued) at the top of the stairs could be a potential hazard, but again they should be happy to discuss this with you and state their reasoning - yes agreed, it's the total lack of discussion that really bothers me!



My dad has just bought a collapsible mobile hoist which arrived yesterday and can do some of the (literal) heavy lifting in the interim, but obviously this is a) at large personal cost and b) my dad is 71 years old so I do worry about the huge amount of physical work involved in mum's care - and wheeling a hoist around doesn't help!

Very interesting to hear that this has been experienced in some way by a few people, TinyLady can't believe you've had almost the exact same thing! It beggars belief how many "experts" like to weigh in on MND without any consideration for the human at the centre of it all. Would be very interested to hear updates on how your new OT listens to you!

Thank you denise and Sarahw for your comments. Hugely appreciate all the kind words and advice, it really is invaluable.

[Madge]

A_Owl I’m sorry to read about all your issues with your m&d. I just wanted to say that I have recently had delivered a mobile hoist and OT came again yesterday to show us how to use it. My concern is that you said your dad will be wheeling the hoist around … we was told not to wheel me in the hoist it is just for transferring from chair to commode and back, only saying as I would hate for something to go wrong x I had two stairlifts fitted (2 staircases) and can’t use either as the seat backs are too upright and they are curved stairs !! I hope you get the help your m&d so deserve. I’m

[Ellie]

Notwithstanding a successful appeal for the ceiling hoists 🤞🤞 here's some thoughts on lifts:

Is their house suitable suitable for a through floor lift? - yes I should think so, however the cost of this would be enormous (I assume!) and presumably not covered by the council?

If all requested ceiling hoist were installed, would their positioning cover every transfer your mum needs to make or would a portable hoist also be needed? - yep it would cover all transfer needs (5 hoists in total).

If, in theory, the council were prepared to fund 5 ceiling hoists, they should be willing to consider funding a through floor lift, negating the argument over physical ability to use a stair lift, and potentially saving the council thousands on funding future ground floor building adaptations.

A reconditioned lift is about half the the cost of a new lift, or even less than half - a past forum member paid £6500 18 months ago - so, like ceiling hoists, there is a residual value on the equipment when no longer needed (sorry! x) and the council can't use this as an excuse.

It would mean portable hoists would be needed upstairs and down, unless ceiling hoist is provided, for example, bed to bathroom.

The MNDA does offer some grants towards purchasing equipment, which is something to bear in mind, and IDK if it is available retroactively for the hoist already bought.

Best wishes xx