I was just wondering if anyone had been successful in getting a DFG? We have now got to the point where our shower is no longer safe for my husband. We were advised by the OT that a wet room would be more appropriate.We were told that a DFG may be available but on doing the assessment it looks like it's pretty impossible to get.
Another example of once you reach state pension age, financial help appears unavailable.
We're feeling pretty disheartened at the moment but you never know, I guess. We might be lucky...
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SRUE
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Mum is getting a ramp installed (it requires new lowered door and some paving), I think the works total about £8k. I think this was through the DFG but the council managed it. Mum owns her own home and I think she needed to have less than £16k in savings for them to finance it all. I recall someone from the council coming out for a review of what was needed following her discharge from hospital.
Try Sam at MSA trust who knows many financial routes for disability use.
We had work done quite a few years ago. We were assessed financially and they put a charge on the property for 7 years so if you sold your property they could recoup the investment. After 7 years it disappeared.
Don't know what the current rules are as I am sure they've changed.
We have just recently had an assessment for DFG by an OT. She was lovely. However we were just a couple hundred pounds over the limit so no grant given. The OT told us that they are working on figures that are years out of date. Apparently In today's current climate,if the figures were up to date, we would have been well within the limits and would have qualified for the grant. !
The MSA Trust welfare advisors will be helpful on this. Part of the confusion is that different geographical areas (and even different London boroughs) apply their discretion differently .
We live in N London and our borough gave an element ofDFG that was not means tested. It really helped us to install an adapted wet room downstairs. Our builder worked with the council throughout the process and they approved it at the end. Their input on adaptations was very helpful because they had seen so many
I am infuriated by the current legislation around the DFG. I'd go so far as to say that it's actively discriminatory. It doesn't take into account age, dependents, where you live (we're in London, so costs much higher) or the nature of the illness.
We also applied, but because our savings were over the limit, we were rejected. We are now embarking on a very costly extension and wet room, for which we will have to take out another morgage. It's bonkers.
We need urgent policy change and serous advocacy at parliamentary level for MSA !!!
I totally agree! We have a small amount of savings and I have a small pension from work so I fear we'll be rejected. The only way forward I can see is either he doesn't shower (!) or we have to release equity from the house.There is absolutely no understanding of MSA and the costs involved, heating, constant washing etc.
Yes I agree Srue. My husband hasn't got MSA but he has PAF, Pure Autonomic Failure, which is unfortunately rarer than MSA, so we struggle to get anyone to understand. Although UCLH in London are fantastic medically wise.
For example our heating bills are astronomical as he is cold all the time and we are all electric.
His main symptom is extremely low blood pressure. So I worry about him going up the stairs when I'm at work and using the bathroom, we haven't got a downstairs wet room or toilet.
It's just awful isn't it? Our heating is on all the time too, but luckily our bathroom is downstairs so there's no need for him to go up on his own.When you think of all the high profile charity fund raising (quite rightly though) for conditions such as MND, it does make you so dispirited. As one of the LOROS palliative care nurses said, we need someone famous to get it, not that you'd wish it on anyone of course. X
We're in North Yorkshire and were assessed by OT for a wet room. We were told that if the quote was below £7000 we would get it. If over, we had to pay for it in full. (You can't accept the £7000 grant and pay the difference, under or not at all)
sorry! were allocated the project. When they ripped off the old tiles it took all the plaster off the walls, thus putting the project overbudget, but we were still allocated the money for the job (unforseen circumstance)' we got our wet room.
Like every one else we could not get a grant but we were given details of builders which the council used. Their advice was brilliant, they were a great help in planning, their quote much less than a local plumber/builder and they did a really good job.
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Apomorphine pump; does anyone have any experience?
My heart is aching...
Another beautiful person taken by this horrible condition
Speech
Appalling Treatment by medical professionals 
