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Thread: The way we're treated..

  1. #21
    Hi everyone, Yesterday I asked the MND Association to come clean on cuts that may or may not be in the pipe line. They have not bothered. Today, like John, I received a document from an unknown person. This document states clearly that cuts are to be made. If the MND Association does not respond and clarify the position by Monday, I will attempt to put on this forum the information sent me. If it is not possible for me to put it on this forum then I shall post it on BULD - UK forum where the MND Association have less control over items posted. I do not like to be in this situation, and feel it is the bound duty of this Association to keep us fully informed of their intentions at all times.

    I feel very sad and let down that the MND Association have not replied to my post of yesterday. It should not be left for the likes of John or myself to be the bringers of bad tidings.


  2. #22
    Bring it on john and countyboy it seems mnda have something to hide we deserve an explanation .

  3. #23
    Quote Originally Posted by Countyboy View Post
    The Salary of the MIND's CEO is now in a band ranging from 100.000 to 109.999. Since taking over from *George Levy (60.000 - 69.999) the salary of the CEO has risen through the band scales to that stated above. So the CEO's salary is somewhere within that banding level. We also have one person in the 70.000 - 79.999 band, and 4 people in the 60.000 - 69.999 band. website.
    I cant understand why any of this should be a problem for members.

    It is quite impossible to run an organistaion like the MNDA as though it were a self help group with most workers giving thier time for next to nothing and all the income going out in support for those in need. We need and must be prepared to pay the going rate for the very best management at the top of the organisation. The entire senior management team is only six strong, which shows great efficiency in my opinion. Has anyone looked at how much money is paid out to fund research internationally, MND care centers in collaboration with the NHS, etc, etc.

    A charity is a special kind of business, but still a business, with the same needs as any other for proper management and stewardship.

  4. #24
    I agree with computatec. I think that we are very lucky to have such a supportive charity to help us. Apparently, the MS Society don't help people as much. We have to remember that everyone with mnd has different needs. The MNDA has the difficult job of trying to prioritise these needs, which isn't easy.

    Most charities are having to cut back now and the MNDA are having to cope with that. Local authorities who used to pay for equipment won't now. How can the MNDA cover all of that extra expense? Don't say by cutting staff and salaries, because that won't help.

    The MNDA haven't always been able to help me, but have whenever possible. I'm very grateful to them and don't think that the witch hunt on this thread is particularly helpful or appropriate. If individuals feel disgruntled, take it up privately with the CEO or senior management. Trying to discredit a charity that is there to help us and does help so many people, is very wrong.


  5. #25
    Crazy girl
    This is a difficult one with different sides to the story....and so many different experiences...

    I would like to say that I enjoy this forum because it is so open and that even if people do have differing viewpoints we should all feel able to post them.

    Personally I judge people how I am treated by July this year we had an instance where the first time we asked Mnda for funding for a piece of equipment we were 'mistakenly' included on some emails where Mnda pushed back on our OT to try a cheaper unsuitable option, having raised 14k in March this year for Mnda and more fundraising events planned this news was not well received by us.

    We did get the equipment but feel that this was because we pointed out the above to our local branch......difficult financial times for everyone but Mnda sufferers are asking for equipment to enable them to function not to live a life of luxury!

    If this offends anyone it's just my experiences!

    I'd still be very interested in knowing details of the cuts proposed.

    Last edited by Crazy girl; 14th October 2011 at 18:26.

  6. #26
    A classic example crazy girl if you can't get funding after raising 14k something is very wrong!!!

  7. #27
    Robyn Copley-Hirst
    Hello All,

    A number of issues have been discussed in this thread which we feel we should respond to, in order to help clarify some of the points raised. If I have this correct there appears to be two issues - firstly financial support from the Association and how much we spend on people with MND and secondly, how we set staff salaries.

    Let me start with our expenditure, I know many of you will have read this in the annual reports and accounts but here is an overview of our spend:

    Charitable expenditure (that is money directly spent for the benefit of people living with MND - including money spent on research) is 11.9 million. This represents an increase of 10% on the year before. Of this expenditure 8.5million was spent on the provision of care and support. This represents an increase of 8% on the year before.

    3.4 million of our spend in 2010/11 was research related. Grants for biomedical research and studentships increased by 20% to 2.5 million. We hold 1.7million of research restricted reserves to continue to fund biomedical research, research fellowships and research studentships.

    The Association's expenditure is set by the Board of Trustees and we continue to streamline our costs and make our operations more efficient to ensure that as much of our expenditure as possible goes directly to benefit people with MND.

    Funding and direct support - In the past when people have made requests for funding we looked at each case individually. In each case we considered needs and all cases were submitted by a health or social care professional. Every case is unique and it is impossible to compare the value of an item from one person to another - because it is not just about the cost of the item but the impact it would have on that person's quality of life.

    The recent cuts to public services have hit us very hard. We have seen an unprecedented rise in requests for financial support. We are continuing to do our utmost to raise funds to meet demand but this increase in demand has meant that we have had to adopt a new approach to providing financial support in order to ensure our limited resources are used to help as many people with MND as possible, and focus on ensuring that statutory services meet their obligations.

    The MND Association is not in a position (and is unlikely to ever be in a position) to take on NHS and Social Services responsibilities - and in the present climate the NHS and social services are struggling to meet their obligations in a timely way. More and more people are coming to us to fill gaps that would have otherwise been met by statutory services.

    This means that where statutory bodies are legally obliged to fund someone's care or support, we must give ourselves the best chance to secure these funds rather than cover what should be a statutory duty. The details of this more proactive approach towards the NHS and social services are available for everyone to access via our website. We will also have tools and guidance on our site to ensure a clear process for professionals and others making applications.

    We cannot comment on individual cases and requests for support but we always do our utmost to support everyone who comes to us in any way we can, and do our best to support people as far as we can with each request.

    Staffing - Like all national charities which provide services the MND Association would not be able to function without paid members of staff. The MND Association has many services that require staff - MND Connect providing expertise, support and advice, managing our 7.5 million research portfolio, our network of MND Care Centres attached to 19 hospitals, educating and influencing health and social care professionals, producing care and research information, campaigning, providing support advice and training for volunteers and of course fundraising. All staff salaries are set by the Charity's Board of Trustees, are in line with charity market rates, and we regularly benchmark salaries with similar organisations.

    I hope that goes some way towards explaining some of the issues raised.

  8. #28
    I have been reading through these pages and John you say you get just income support and child benefit, well you must still be working otherwise you would be on employment support. You should also be getting child tax credit and it`s no good going to your MP about it, your local hospice welfare team will sort it out for you. From what I have read over the last few months London seems a pretty **** place to live (or die). As for calling the MNDA, these people at the top are high profile people and I am sure that they help to bring in alot more money than they are paid. As for calling the rest of the staff, I`m sure that if they wanted they could get a better paid job elsewhere. They do it because they care! I have great respect for the team. If it wasn`t for the MNDA you would all have to get your equipment off the council and with todays climate where would that get you! Thanks for my few months on the forum but I`ve had enough of the moaning.

  9. #29
    I do not have issue with how the charity supports, that I wish to make abundantly clear. MNDA have been of great support to myself and countless others. Therefore I will clarify further on the point I was making.

    In the present climate most employees are receiving less than 3% pay increases (if they are lucky enough not to be on 0% or pay reductions), the posts indicates that a salary increment of 40K (I do not know when this was effective from) was made and this seems rather significant (around 50%). I am open to being corrected on the facts. I would welcome feedback on the merits of this and how it stands in realation to awards received across the business, and would genuinely like to hear the benefits that the higher level roles bring to the charity. The average salaries are wholly irrelevant in this discussion and the work done is not in question, it is only with top 6 that appear quite high with staffing levels of 139 head.

    I do not wish to be party to the aforesaid 'witch hunt', but feel my questions are valid in that limited scope.

  10. #30
    Hi Robyn, You state;
    Charitable expenditure (that is money directly spent for the benefit of people living with MND - including money spent on research) is 11.9 million. This represents an increase of 10% on the year before. Of this expenditure 8.5million was spent on the provision of care and support. This represents an increase of 8% on the year before
    Yet I have a letter sent to branch chair persons this week which states;
    In 2010/11 we provided financial support to 1,615 people worth a total of 900.000.
    How come the big discrepancy in these figures? Surely the letter should have read we provided financial support to the value of the sum you quoted. It is clear that reading this letter and the statement with it entitled Chief Executive's Appeal from February this year 42.950 has been spent on all 58 requests for funds. Can you explain the differences please? Will you also post a copy of the cuts that are being made to grants and equipment supplied by the MNDA? The title of the document is
    and is dated Tuesday 27 September 2011.
    Best Wishes,
    Last edited by Countyboy; 15th October 2011 at 15:05.

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