The way we're treated..

[Crazy girl]

£8.5million spent in care and support....for around 5,000 people living with mnd in the uk at any one time....means £1700 available to each mnd sufferer per year?

Anyone benefiting that much? Or am I just being completely thick in what is being quoted?

I wasn't getting wound up by this topic but come on quoting millions of pounds being spent when people are asking for a few hundred pounds support seems very antagonistic to me!

Tracy

[john]

£8.5million spent in care and support....for around 5,000 people living with mnd in the uk at any one time....means £1700 available to each mnd sufferer per year?

Anyone benefiting that much? Or am I just being completely thick in what is being quoted?


Tracy

So far in 18months my wife has had a riser/recliner chair, clos o mat toilet and a computer,adaptive software and training to use this provided. If all these come with a price below £1700 I'd like to know where they shop.
I do not understand this thread and the critisms being levelled at the MNDA. I could write pages on the failings of the NHS and local Social Services but the MNDA deserve all our praise and support.

John

[Crazy girl]

Barefoot john - Thx for your response. My response was aimed at Robyn really to reiterate what county boy is asking?

John - my husband has had riser/recliner chair and various other equipment funded by nhs and for us, the one time we asked Mnda for support it was declined. I'm not saying the Mnda does not help people clearly it does! But I can only go on my experience as I said before. We personally have had to fund an extension, wet room, lift, profiling bed, expensive advance payment for a car as my husband does not fit into standard WAV's and so we have not asked for a lot from Mnda and I'm not saying they should give us what we want! We were advised that they would fund this particular piece of equipment for us by our OT.

My point was the figures quoted by Robyn don't really make sense.

Reading back through this thread and reference to our experience it looks like one of the main things coming out of it is that there is such inconsistency in what the Mnda funds for who? and I do think this process is something the Mnda is responsible for.

It's not right that certain people get more as all mnd sufferers require help at some point or other.

If there is anything to question I would say it is how the Mnda decide who gets what which shouldnt depend on where you live, who you know....how good your OT, physio etc is?

Also - I want to make it clear that I support Mnda, I'm just asking? Isn't that freedom of speech?

Tracy

[Crazy girl]

Robyn - a suggestion if I may offer it - would it be good to separate each point being asked in this thread into separate threads so that people can just read up on the point they are interested in?

I.e.,

Clarity of funding spent on care and support
Process for Mnda funding requests
Increase in top salaries from 2010/11

Just think it might help separate some of the points being made and stop people reading bits of this if they don't want to?

Tracy

[Guest]

Of this expenditure £8.5million was spent on the provision of care and support. This represents an increase of 8% on the year before

I assume the amount above includes MND clinics etc...and not sole funding direct to mnders.

Apparently there are approx 2500 or less mnd members of the MNDA. Robyn, could you please confirm how many patients mnda has on their books?

John aka barefoot, the MNDA does provide software as stated on the website: My laptop, software and equipment cost in the region 2k provided by them.

The loan bank will be free to people with MND who have completed an AbilityNet assessment and will enable access to a range of hardware and software solutions such as:

• specialist communication software, for example EX Keys, The Grid, Dragon
• keyboards
• pointing devices
• switches and switch mounting
• interfaces
• laptops – where the current laptop or PC is not compatible with the required software and hardware
http://www.mndassociation.org/news_a..._computer.html

I was going to keep my mouth shut but people who know me know that's not possible. I don't agree that sufferers who work darn hard for what they have achieved and own ie home, nice car, nice clothes, saving etc...should not get funding. Those people do not get benefits apart from DLA, they HAVE to pay their mortgage/rent, council tax, Home Improvements/Adaptations, advance payment on Motability and a whole lot more, while people on benefits get it all paid.

My feelings are the same as Adie's aka G60dubber and I await answers from the mnda regarding high salary and pay rises. I am also not liking how sufferers are being refused minor funding requests.

[Guest]

Fund-raisers can specify exactly where they wish the funds raised to be spent ie research, direct to sufferers or both.

[Crazy girl]

I didn't know that Jeannie, great info, thanks.

Tracy

[Guest]

The MNDA provided 2k computer and software on LOAN not to purchase directly.

[Guest]

PS, people on benefits DONT get everything paid as you can see that people with nice homes, nice cars etc who work dam hard DO get funding but as i know of a few on benefits who have got very minor funding for items.

Funding from the MNDA and being in receipt of benefits are two completely different things. Those who have savings do NOT get their rent, council tax, dfg grants etc paid whereas people on benefits do.

[john]

ps, they do provide a "loan laptop depending on stocks and only if a referral from a OT and the OT is responsible for any adaptions, software etc

All this equipment comes on loan with obligations to look after and return when no longer needed.

[Guest]

John aka barefoot, I don't know what your gripe is but to me your attitude sucks at times. I for one am not one of those people you refer to and I don't seem to recall anyone else on this forum looking down their nose at you? you must be paranoid to even contemplate saying the things you do or did I miss something?

You are NOT the only single person in receipt of benefits raising young children who has mnd. Get a grip and stop with the ME ME ME whining. You seem to be holding a grudge against those who have done well for themselves, it isn't their fault that they worked and saved for what they have.

I do not understand why you are taking your anger out on other sufferers and sometimes with personal attacks which are so uncalled for. You are pissed at the MNDA take it out on them...If you do not like peoples opinions then don't post on a public forum.

I don't mind helping anyone whether they are fat, thin, poor, rich, black, white, bald or whatever but I don't like those with a f**ked up selfish attitude.

I hope we can still be friends after this little debate ;-)

[Countyboy]

Hi Jeanie, If I can intervene, John has the proposed cuts and mistaken them for what is being paid now. I have been sent a copy of that document and under the new criteria only £600 will be available for computers, computer aids etc.
I hope this clarifies the matter.
CB.

[Guest]

Hi Stuart, you know you're welcome to intervene any time ;-) I am unclear of this new criteria of £600. Are you saying the loan service now has a limit of £600 max?

[Barefoot John]

Thanks CB.

[Countyboy]

Hi Jeannie, and John,
There is a new set of criteria on cuts that are to come into force, and some of the cuts are in my eyes big. As you both know life through inflation, higher taxes, and the price increase on food etc. is hard. Then comes the news that the MND Association are cutting back on items we all need. For instance they are now advocating chemical toilets and not clos-a-matics (Spelling). I said in an earlier post I will list the changes tomorrow if the Association fails to do so. It seems to me that they are leaving all the dirty work of informing members of the changes to the branches, instead of facing up to the deed themselves. Here I would state most, or a lot of voluntary help comes from people with full time jobs, this includes AV's and committee members. The question is will they start standing down because of the changes and the way they are coming about. It would have been better for the MND Association to have written to all members detailing the changes but they have not. Instead details have been leaked. This causes misunderstanding plus a lot of ill feeling, especially when you read that the CEO has had her salary put into an new banding £10,000 higher. When all is taken into account it leaves a very sour taste in the mouth.

John, There is no need to thank me, we are all in this together, so all help is given out of friendship. We are all members of a club that none wanted to join. There will be differences from time to time but they can be, and usually are quickly put aside.

Best wishes to you both,
CB.