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Building work

Just venting my spleen - again!

ive got a builder coming today to quote for work at the front door to improve accessibility and safety for me.

in April last year my GP referred me to the community OT team who arrived late July and promised me help. I’ve had four visits and been provided with a bed handle which I didn’t ask for and didn’t think I needed, but all contributions gratefully received!

My last visit was early December when they measured the step and vestibule for the third time, I’m pretty sure the measurements hadn’t changed, and was promised a portable step which wouldn’t solve the problem, but might help a bit, and at least it’s cheap.

The work required is means tested, and with out actually knowing what my income is, or savings (I don’t have any savings) they decided I’m too wealthy.

Can’t even begin to guess how much it is going to be, but if I can’t get it done, I’m going to be housebound, so ive got to find the means somehow.

All this when I read in the papers of large families living in specially extended houses and in receipt of tens of thousands of pounds in benefits each year, which I, in the form of income tax I am contributing to.

ive explored every avenue of getting assistance with the work, but as I’m not in receipt of any means tested benefit I’m not entitled to any help. I even approached my MP who, whilst he was very nice was, to use a phrase my husband is fond of, “as useless as tits on a bull!”

I could go on and on and on and on, but you get the message. Grrrr

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I’m sure there is a rational explanation but it is very confusing to me. Why does someone on income based ESA get prescriptions, dental work, help with fuel bills, boiler replacement etc, whereas someone on contribution based ESA is expected to fund all of this themselves.

Good luck with the work

Jan x

Have you asked your local ms group for help? I had their help twice.

Poll

Hi Poll

No, I haven’t . I don’t like to!

About seven years ago I got a grant from them towards a mini mobility scooter, and about the same time they paid for my gym membership. They don’t pay gym memberships any more, but I feel I’ve had a lot of money from them and it isn’t right or fair to ask for more.

I still haven’t received the quotes, so I’ve actually no idea how much it is going to be yet.

We are not exactly poor, I get DLA at the highest rate for mobility and middle rate for help with personal care, whether I will get PIP remains to be seen. I am deemed to be wealthy as I have an occupational pension, (which I worked and contributed to for over thirty years) so I’m not in receipt of any means tested benefits.

it seems a little unfair, although many might disagree, that my taxes go towards paying for others who can’t afford to have this kind of work done, while I have to do without, or get a loan.

Oh well c’est la vie!

Have u got over 6k in savings? I think that was the amount before you can get the council to pay. We never have savings, as we seem to be constantly forking out for my needs.

Try to get to know the costs of the work. I don’t think your local ms group would be funny about another application. But what about this site…ask a mod about their criteria for grants.

Pollx

Thanks Poll. We don’t have any savings, unless they count the value of our modest bungalow and being retired it’s quite hard to replace savings.

We save all year for a holiday, enjoy that then start again.

We save to get jobs around the house done, when we have enough money we get work done and start again, so there is rarely very much in the bank.

Maybe it won’t be as bad as I fear - fingers crossed!

xx

Xxx

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Hi

I had my downstairs converted to accomodate a showeroom, lowlevel enterance, wider doors and lowlevel kitchen.

It was all done with a DFG (disabled fasillites grant), which is done through your OT and will be means tested.

I have a small occopational pension and had to pay towards it but you need to weigh up do you want the money in the bank or an easier life.

You say you had a mini scooter so how did you manage the step when you had that.

I also had extra work which I had to pay for and to tell the truth it skint me but it was well worth it.

Ronin

I’m under no illusion I want an easier life and I am going to have to pay for it. you mentioned choosing between an easier life or money in the bank, what money in what would that be then?

As for the scooter, it is kept in the garage, I have never used it indoors, there isn’t room. When I got it, I could get to it in the garage walking with one stick, and my husband would load it, or my wheelchair into the car for other outings. Now he brings it to the door for me, if I’m going anywhere, though it’s too damned cold to go anywhere much just now.

Now I get around home on crutches, our bungalow is tiny so I don’t have far to go at any one time. My balance is rubbish, I can’t lift my legs from the knee or hip, and if I carry on deteriorating at this rate (I was diagnosed in 2006 with “mild” MS) I soon won’t be able to walk at all, then we’ll have to look at widening doorways and converting the bathroom into a wet room. Currently there is a shower cubicle with shallow shower tray, but I’m beginning to struggle with that. I don’t expect any help with that either.

The OT shouldn’t have given me assurances I could get help with the work. She wasted her time and mine and NHS resources on four visits when she should have said at the outset it wasn’t going to happen.

I’m resigned to the situation now, I should’ve known better.

If/when the time comes for us to be taken care of in our old age they’ll snatch our assets to pay for that too, but if we’d spent a lifetime being supported by the state, the state would continue to support us and no doubt cover funeral costs too.

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Do hope you get some help - life isn’t fair is it. l hope someone comes up with the answer. Do not be too proud to ask for help. There are so many folk who cheat the system and seem to get away with it.

We had the same problem - OT came out and told us we were entitled to a groundfloor extension to house bedroom/wetroom - doorways widen - the lot. And all we got was a frame around the loo as they had exhausted funds for that year.

The OT told me the work would be means tested and that Social Services would have to be involved.

However AT NO TIME have I/we been asked what our income is or whether we have any savings, or if we are in receipt of any means tested benefit. The only question in relation to what we might have was, “do you own your home?” The answer to that being yes, with a mortgage.

So it appears the OT has made the decision based on that.

It shouldn’t have come as any surprise. The NHS has abandoned me, my neurologist discharged me, not being able to do anything for me, he said there’s no point wasting time seeing me again. I don’t have an MS nurse.

My friend and her husband had a similar experience with another NHS trust. The OT declared her husband who has hereditary spastic paraplegia needs a wet room, but, and I quote, “looking at this house you won’t get any help.” They’re both retired, and he’ll have to do without until they can save some money.

i have neither the energy nor inclination to fight this decision, but I do think it’s grossly unfair.

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I get what you are saying, but it seems to me the OT has not referred this to Social Services, no one from Social Services has been in touch with me.

No money left perhaps.

Ive no fight left. They win!