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The way we're treated..

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    Originally posted by Robyn Copley-Hirst View Post
    Hello All,

    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.
    I have been told by my local Adult Services that they are overspent and have no funds to provide me with a door entry phone and then told to conatct the MNDA as they are very good at supporting patients and they will get one for me. This is not the first time I have heard this from OT's and PT's. If this is happeneing all over the country one can understand the surge in calls for help from the MNDA. I think we have to learn the legal obligations of the NHS and Social Services and make sure they are not shirking thier obligations. ( I have not asked MNDA for the phone.)


      Hi Computatec, This is one reason why the MND Association is bringing these cuts. A sample letter to complain to Social Services etc. has been sent out to branches. But here I must state, when I first became involved with the MNDA the opposite was true and the MNDA supplied that which social services failed to supply. I know times have changed but claiming or stating social services and the NHS must supply that which they have statutory duty to supply should be done by taking it up with the authorities and not through our volunteers. An official letter to the media explaining the effects felt by people with MND carrying the threat of legal action for failing to carry out statutory duties would do more good than that which is proposed. What is on the table will only make it worse for us with MND.

      All the Best,


        Hi everyone, my husband would like to add a few words so here goes:

        I speak as I find but my local services, OT, hospice and Worcestershire MNDA have all been excellent. I accept some people with MND are finding it hard to access equipment and financial support.

        When I was a young lad my father told me that 'charity begins at home'. I do tend to find nowadays there is a lot of avarice which I find is unacceptable, referring to the 'top 6'. I am not surprised in this day and age they command big salaries. Nothing seems to change where money is concerned - sad but true.


          Originally posted by Jeannie View Post
          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 ;-)
          I'm not even going to lower myself in responding in a negative way,

          I'm just going to carry on being a parent instead


            Hi Everyone,

            There have been some legitimate questions and worries raised within this thread. I hope the statement below goes some way to clarifying a few of those questions for you.

            Best Regards,


            __________________________________________________ _______________________________

            Spend on care and support

            There are many ways the Association funds care and support to people with MND – this came to £8.5m last year. One way is through our financial support service, which we are budgeted to spend £900,000 on this year, and we also use our money to provide other help that people with MND receive directly from us, such as loan of equipment, MND Connect, information, Association visitors and so on.

            We also spend money on care and support where our involvement may be less visible to people with MND – for instance, we fund large services that support hundreds or even thousands of people, such as our 19 MND Care Centres across England, Wales and Northern Ireland (mostly in the form of hospital outpatient neurology clinics) and we educate hundreds of health and social care professionals who then directly support people with MND.

            Staff costs

            We aim to pay our staff in line with the charity market rate. This year our staff have not received any pay rise, in order to help us protect and maintain services for people with MND. You can read about how we set this budget at our Board of Trustees meeting in January.

            Financial support

            Many of you have commented here on changes we’ve made to the way we provide financial support. These changes are to make sure we use the finite resources we have available to help as many individuals as possible.

            Last year we awarded five times more financial support payments than three years earlier. Meeting this increase in requests has put our finances under huge pressure, despite ongoing success in fundraising. The result is that over the past three years, we have spent more money each year than we raised – in effect, running a ‘deficit budget’. If we continue to do this, it will put at risk our longer-term financial viability, and therefore all of our care and research activities.

            One way to limit the pressure on our resources is to make sure we do not replace statutory services’ legal obligation to help people with MND. We have begun putting much greater pressure on social services and the NHS to step up – every time they meet their own obligations, it frees up Association resources to help more people.

            In addition, we are now more likely to make financial support decisions based on recommended limits of funding for specific items – for instance, up to £600 for technological aids and support. We do have a process for dealing with ‘exceptions’ where there is a clear case for funding outside of our normal approach. However, each time we do this, it reduces the amount available to help everybody else.

            We now have much more information on our website about financial support, including what we fund and don’t fund, and where else support can come from. We accept there is more we can do to make this and other information about financial support more accessible, and we are redesigning our website to help with this.

            While we are managing our current financial challenges, we still want you to come to us when you need support – we will always try to help wherever it is possible, whether it’s by providing finances ourself, or by lobbying statutory services to meet their legal obligations.
            __________________________________________________ ______________________________


              Hi Robin, Had this peen posted earlier then a lot of worry might have been averted but there is still the question of cuts to be answered.
              For example: Washer/dryer WC The funding limit is up to £800, and the statement is as follows
              We would pay £800 towards Wash/dryer WC which for bio toilets would cover the purchase of it and for clos-o-mats part of the installation only and no monthly rentals. Therefore encourage moving away from clos o mats to bio bidets
              Now I know cuts have to be made for the Association to be able to continue its work but, why keep silent? There is then the question of how the bio bidets work? Do they have to be emptied by a carer? IF so, is the age and health of the carer taken into account? It is in all our interests to be told the truth, as thing stand it might be seen by some as playing on the feelings of those with MND. Please don't think I'm nit picking, I am not but, I do have the care and welfare of those with MND together with their carers at heart.

              I will not post further details on this forum as a gesture of goodwill but, I sincerely hope more details are forthcoming if only because we need to know what to budget for.

              Best Wishes,


                Evening CB,

                The concerns in this thread have been noted - especially the desire for greater clarity and reassurance over some very specific questions - as you say, to minimise any worries. As we've already said, we are looking at a number of issues at the moment within a changing climate.

                I absolutely know you have the welfare of everyone at heart and your thoughts have been listened to on this. Obviously a forum (which not everyone uses) is not the best place for us to address all of these concerns at once, but as and when I get any further details on this, or we post anything related on our main website I'll make sure I add them here, as I always do, to update you all.

                Best Regards and enjoy the rest of your evening,



                  Thanks Robyn...I noticed certain post has been removed from this thread.

                  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 have one question regarding the above; are these 'similar organisations' receiving the same income as the MNDA?


                    Originally posted by Jeannie View Post
                    Thanks Robyn...I noticed certain post has been removed from this thread.

                    I have one question regarding the above; are these 'similar organisations' receiving the same income as the MNDA?
                    Hi Jeannie,

                    They would be a fair comparison yes, but I can't enter here into discussing any further in-depth details of other organisations. Other charities do release details on their own websites very often.

                    I believe Barefoot John has removed some of his posts after asking me if it was possible for his thread here to be removed in full. Anyone has the right to delete their own posts whenever they want so it's completely fine that he's done that. I hope all of this still makes sense with John removing what he could, he completely understood why it was left up as you've all added to it, too, and he's always welcome to pop back in

                    It even took me a while to realise, Jeannie - you don't miss a thing

                    Very best wishes,



                      Originally posted by john View Post
                      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.

                      Well said John!


                        Originally posted by Crazy girl View Post

                        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 good your OT, physio etc is?

                        Hi Tracy

                        Did you ask the MNDA directly, or did you get your OT to make a formal request with all the reasons why it was necessary? Also, did you approach your local branch first or go straight to Head Office. The reason I ask is that I think the way you present your request may affect the outcome.



                          Hi Robyn,
                          Very many thanks for your reply and taking on board my concerns for others. I will leave this in the knowledge that my point has been listened to, and if possible acted upon.

                          Best Wishes,


                            I removed the my postings as i felt fit to do so

                            If you still have a problem with that then its your problem not mine


                              Hi Clive,
                              Perhaps it would help if everyone understood how bad the situation in Wales really is. There is no "NHS Care in the Community" and no free health care in the home. The latter was done away with by The Welsh Assembly Government in November 2009. Health care in then home is now under the title of "Social Care" which is means tested. This year The Welsh Assembly Government did put a cap on health care in the home, or should I say Social Care, of £50 per week. Last week a report on health care throughout the UK put Wales at the very bottom, this despite claims by WAG that they were misleading. Regardless of what WAG say I can honestly tell you that Health Care in Wales is now worse than at any stage of my life, and it is all due to the lack of basic knowledge by the ruling Labour Party, a party that has been in power since the Welsh Assembly was established. I feel I should say here and now, that as the son of a coal miner, I am ashamed of what has been allowed to happen to a once great country and its people. I would also advise those visiting Wales to ensure they have good Health Care Insurance. Only by having good health insurance will they receive the care needed should something go wrong.

                              Best Wishes,



                                Hi John,
                                I for one know the pressure you have been under, and fully respect your action. I know life can sometimes be a bummer but try to keep smiling. You know I am with you for as long as possible.

                                Best Wishes,