The way we're treated..

[Barefoot John]

I must say that i'm very disappointed in the way i have been treated,

I try to do good things for others and even they are sort of stopped,

try to get people to do the chasing up on matters for me and all i get is "we will look in to it" but nothing happens.

Told i will get some help to buy things that will help me have a better life and be able to help out my kids and still nothing.

I am not just having a windge but have had enough now that i had to instruct my solicitor to do the chasing up as its wearing me out now and causing me great stress.

My GP is getting very concerned at my stress levels now that he is getting involved big time.

Lots of phone calls that i have been doing will now be done by her including contacting charities that dont pay out and getting my local MP to do things, which is great as we used to be neighbours so she knows me and my boys very well,

Its about time that some one legal started to check out charities to find out where there money is really going and my solicitor is very very good at her job !!

Seems like its a Robin Hood in the charities side or the donations are going somewhere they should not be????

All will be sorted very very soon trust me she is very good and always gets to the bottom of things very very quickly.

[Chris]

I hope everything gets sorted for you John. The sad news is what you say is very true, I too would like answers to some things you have said! Our biggest battle is not MND it's getting help. I'm loosing the only person that really helped and it's annoying, also in mid argument with the council OT who is as much use as a chocolate tea cup!

[Batty]

CHARITIES-Some businesses register as charities for their own benefits, the latest is British waterways-who do they help? Nobody.
Regards Mark

[Guest]

I thought the MNDA were the only charity that helped pals?

[sarahezekiel]

Hi John

I was thinking today how angry and stressed I used to be. Getting anything is always an effort and some health professionals are really unhelpful. My reclining wheelchair has been broken for a month now. Wheelchair services said they'd repaired it and brought it back. It was still broken, so my carer had to phone them and get them to take it back. They phoned today when my friend was here and said they're bringing it back. I explained what had been going on to my friend. He was really angry and wanted to phone them for me and to help. I told him not to worry, this kind of thing happens all the time! It's sad that I've become complacent, but I'm pleased that I don't get stressed out any more.

So, John, try to stay calm. It's not worth letting the idiots get to you and make you feel more ill. I know it's easier said than done.

I agree that the MNDA are wonderful. They've helped me so much.

Take care

Sarah

[Countyboy]

Hi John, Everyone,
Have a look at the MND Financial Statements ending in January 2010 and 2011. I'm sure you'll find some interesting comparisons.
Best Wishes,
CB.

[Guest]

Hi John,

Could you please enlighten me about this 'charity' that you talk about as the only charity I know of whom help mnders is the MNDA? It would be nice to know if there is any other help out there or not in your case.

PM if you prefer ;-)

[icingoncake]

As for these charities that say they can help either by means of support or financial help, well i can only say that they must have some really healthy bank balances as so far the only people who have been helping me in so many ways is here "THE MNDA" and MNDA connect have done so much for me, even helping with a bit of finance to get a phone that i can use..

I am so pleased with these guys that i truly will be leaving them something in my will as if it was not for them, then i would be getting no where.

Thank you so much to MNDA for all your help and support...

Hi Jeannie,

I wondered this. The only one we know about is the MNDA and they have been fantastic to us so i agree with Barefoot John and Sarah. I'd be interested to know any other charities that support people people with mnd as i'm with you, i only knowthe MNDA and speak as I find - they have helped us massively as far as they are able.

Jenny

[miranda]

Hi John. I too have been concerned that you might be including MNDA in the group of charities you are unhappy about. We have been impressed by the support they have given us and in order to try to give something back, I have recently joined the local branch committee and also help out with admin type tasks through National Office ( I know I am lucky to be well enough to do this).

I worked in the 'charities' sector for over 25 years and know that people often are surprised that so much income is allocated to staff salaries etc. But why should staff not get a decent salary? and if there were no staff how would the charity function? For the responsibilities I had in the early days of my career, in very stressful situations, I was paid far less than I would have been in other jobs. Sorry, I digress.

Your frustration and anger at the fight you are having is understandable and it sounds as if much of it is justifiable but it must be taking its toll on your ability to cope with day to day life. I do hope you get help to resolve these issues soon so that your stress levels can be reduced.

[Guest]

It's all well and good staff getting a decent salary but a majority of staff are volunteers who do not get paid. I was actually shocked and appalled to learn that the chairman of the MNDA gets over £100,000 salary when the Prime Ministers salary is £142500 and he runs the country WTF? God knows what salary the MNDA CEO is on?

Earlier on in the year I approached my local MNDA branch for funding for a holiday as I have done once or twice in the past. I was told that there wasn't any funding available nor was there funding available from head office, this I had to accept. However, I was pissed off to learn that a few months later holiday funding was issued to another sufferer who didn't even ask for it grrr...don't get me wrong I was happy for this person but pissed at the MNDA but grateful of past funding.

If I were smart enough I would volunteer for the CEO or Chairman job free of charge ;-)

[Norman]

Hi John.
it's the same here in Sussex, you can't get an OT to respond, when they do they have no budjet, It's a constant fight to get anything done, you end up having to ask friends or family to do anything. I am becoming convinced that officialdom , whether in the NHS or government see things as qwick targets to be resolved and recorded on lists and then to move on. If you break your leg sking , it will be fixed and you are entitled to 6 visits to aquatherapy, target is achieved, list looks good. In the case of a long term sufferer ,they may benefit from a session of aqua every week, but the system is not set up for us!!!!!! Norman

[Chris]

It's all well and good staff getting a decent salary but a majority of staff are volunteers who do not get paid. I was actually shocked and appalled to learn that the chairman of the MNDA gets over £100,000 salary when the Prime Ministers salary is £142500 and he runs the country WTF? God knows what salary the MNDA CEO is on?

Earlier on in the year I approached my local MNDA branch for funding for a holiday as I have done once or twice in the past. I was told that there wasn't any funding available nor was there funding available from head office, this I had to accept. However, I was pissed off to learn that a few months later holiday funding was issued to another sufferer who didn't even ask for it grrr...don't get me wrong I was happy for this person but pissed at the MNDA but grateful of past funding.

If I were smart enough I would volunteer for the CEO or Chairman job free of charge ;-)

£100,000 the one thing I asked for I got told times are difficult and we are looking at other options. Clos o mat! Oh well I'll just have to carry on being dirty! Maybe the chairman can buy me one.

[elle]

What a shower of S--t these charities are making out of the vulnerable absolutly discraceful they should be named and shamed.

[Robyn Copley-Hirst]

Hi Everyone,

All of our financial figures are publically online on our website. The 2011 report is here. It's pretty long but I think pages 12 and 30 touch on the areas you're discussing and these pages give details of what percentages we spend on which areas. It also details increases in our charitable expenditure, providing care and an increased percentage towards research. I hope this report in full is of interest to the thread.

Best Regards,

Robyn

[Guest]

Thanks Robyn

I did browse through the report earlier this morning but was unable to find a break down regarding staff salary. Are staff salaries available to view online?

cheers