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Andrew
14th March 2013, 16:07
Hi everyone,

From today the Association is asking people to take just 3 minutes to sign and share the MND Charter, with friends, family and politicians.

The Charter states that people living with MND have a right to:

1. An early diagnosis and information

2. Access to quality care and treatments

3. Be treated as individuals and with dignity and respect

4. Maximise their quality of life

5. Carers of people with MND have the right to bevalued, respected, listened to and well supported

If you'd like to be a part of the campaign, you can do so here:

http://www.mndassociation.org/get-involved/campaigning-influencing/Charter+Three+Minutes

Best wishes,

Andrew

john
14th March 2013, 16:46
Hi Andrew ,

Any idea how and where Graham is? Your posting about the charter brought him to mind for some reason.

john

Lolly
14th March 2013, 20:09
Wow that will make such an impact .... hats off to the mnda

G60dubber
14th March 2013, 22:11
so what are the MNDA doing to ensure we get this ?

roy
14th March 2013, 23:23
The perfect opportunity to walk the talk was with Grahams situation,
I remember the boys scout pledge delivered a promise.

john
15th March 2013, 01:08
Hi Aide,

I suspect we are pissing in the wind here but no doubt this post will get a response unlike the earlier ones which will be ignored or removed.

John

Graham
15th March 2013, 04:00
Andrew,

Are you having a laugh or what??

You are aware the MNDA have failed me and to add insult to injury you post this??

EIGHT months in hospital and still social services have not sorted my care arrangements!

For people who are not aware, the MNDA gave my care and dignity the thumbs up and brazenly deleted my months of logging abuse in hospital.

The 'cure the NHS' campaign includes 'curing the MNDA'.

john
15th March 2013, 07:33
Hi Graham,
Good to see you back and I share your thoughts. Reading about the NHs policy of paying off critics made me think it was possible that the mnda management were working from the same manual. Seemingly the NHs were surprised to find that such practises are in fact illegal.
Let us hope they will start to do what they always should have done and remedy faults rather than try to bury them - in Staffordshire case all to literally.

John

roy
15th March 2013, 10:52
Hi Graham,

Good to see you, can't help thinking the Government can't manage change,reforms or accountability no more than they can with Banks and media,so I believe the charter is for good intentions but unrealistic, so irrelevant if you make a target that is unattainable it's mealiness,
We have been waiting for months for good news on an outcome for you,with the exception of an IPad and some uncomfortable visits
Nothing changed I remain disappointed and feel embarrassed thinking of you in your situation and mine at home with care and dignity.

My very best wishes.

Roy.

pete
15th March 2013, 11:18
Morning all ,

good to have you back Graham, not so great to hear your still being messed around, though not surprised really, when the instigators of all the real problems are made of Teflon, John as a survivor of the infamous Staffs saga, I still know that it wasn't the front line staff responsible for the Failings ,that in itself is a terrible word to describe what happened over years, it should never have happened ,but with people put in charge who have no feelings whatsoever for human beings and sick ones at that , being driven. By managers and more managers who only ever saw money as the real goal, much the same everywhere else these days , when you see extremely high paid individuals doing what they do best, and that is walking away with a wad of cash for being totally and utterly incompetent and facing no charges, and showing not even the slightest remorse for what they have done , The NHS is by far the worst example to date ,by the very nature it should be responsible to those who need its services most, but we still se the main instigator being left in charge backed by powerful allies , we all know its so wrong but still nothing's done, and I suspect it is the same everywhere ,we live in a culture of greed, and money is the only thing that matters ,what's worse I can't see a solution , for me anyone who sees that take take and I am alright Jack mentality ,deserves no place in any position of responsibility,

As for the MNDA charter I can see my number 1 A cure for MND has been omitted for some reason, and the rest are all that really shouldn't be needed in a charter ,they should be already in place and quite why they are not only proves what we all know , so for me not groundbreaking at all just another poster ,maybe it will do good only that most precious commodity of all time will tell, just my opinion ,you all have as good a day as you can.

Terry
15th March 2013, 12:05
Welcome back Graham. So good to hear from you even if the situation hasn't changed.
Love, Terry

john
15th March 2013, 13:13
Hi Pete,

As you say to draw up a charter to provide for the things which should be automatically available to all is a sad reflexion of the state of our society.
I am still awaiting Dave's big society to begin. I thought he was going to make us into an all in it together organisation. Yet another cop out with properly regulating the gutter press. What did the Leveson enquiry cost - millions What do we do with his recommendations?.Pop them in the bin. Let us hope the Labour and Lib Dems conspiracy gives him a bloody nose. Same with the bankers. What happened to them for their behaviour - business as usual. And the guy in charge of regulating them - about to retire with a pension to make your eyes water. The things all these people have that Dave needs to keep him in power are the money to finance his party and the publicity machine to get him back in office. I like you can see no way of changing the system that promotes the overall supremo at the Stafford PCT to be in charge of the nhs. It can only be bad news. I think they should always be clamouring for value for money in the nhs but NEVER at the cost of customer care.

john

pete
15th March 2013, 14:59
John

Did you think it would be a different outcome, I don't think you did, your much the same as i am , sick to death of the almighty politicians saying how hard they working on our behalf, helping to get us back to a black figure in the economy, well who the hell was responsible, it certainly wasn't us poor sods ,the public who work all their lives and go to the polls thinking anything will change, I watch our beloved leader standing in the Jokes are us gallery and just wonder hearing all the your fault and your party did this and that,He is the one who promised us a return to prosperity but so far a list of incredible blunders wasted money, Promises to assist unlimited students from India to further their studies in the uk, while handing them millions in aid,He and his gang of cronies cant even get a terrorist deported who has lived here for twenty years on benefits and his extended family,while preaching his vile messages of hate for us English, Yes john your right jobs for the boys in our club, stinks it really does ,millions wasted ,but never anyone faced charges,cant wait for the budget, i bet your looking forward to another round of excuses ,oh well I am still waiting for us to find a party who does what they promised when elected ,I know it will not happen in my lifetime but one day I do hope UKIP gets voted in at least they are not afraid to tell the truth about the reality in Britain today.unlike the main parties who all are much the same just some more believable than others when it comes to telling porkie pies

Robert
15th March 2013, 15:09
Hello Graham my friend,it's good to hear from you,if only the nurses and doctors attending you could experience your torturous suffering
things would alter instantly.I think my own progression is on a par with yours the difference being I can still shout the odds and of course I have Saint Pat.
This is to all of you whom are nursing Graham PLEASE BE THE PATIENT,put yourself in his place,imagine yourself being put in a straight jacket and your mouth gagged.He dosen't want to there,he didn't ask for MND and I am sure like me, he wouldn't wish it on anybody.
Warmest Regards Bob

pete
15th March 2013, 15:51
Bob,

So right matey, if only they could experience it for a short time , let alone 27/7 for the rest of your life , and we all know it does get much worse but then again who really cares, it's a job for most and a few really do it for the right reasons , lets hope that one day nursing will return to how it should be to take the best care of those who need help at a time when money shouldn't influence the level of care you get .

Cheers
Pete

Rory
15th March 2013, 16:08
I have no objection to signing up to rhe charter.
It would be better as a NHS guarantee so we can get our money back if not strictly observed by all !
The MNDA perhaps would be better in circulating all the GPs, hospitals, etc to say what we expect and must have. My local GP to their credit have taken on themselves to learn about the illness as I am a sufferer and they need to know what i need - they have visited Kings in London for education - I can't ask for more. I know that reaction to this illness varies but you need a ' MND champion' in every surgery and several more in every hospital alongside specialist nurses - as with other illnesses. Consistency of awareness, support and help is needed for all.


Rory

Graham
16th March 2013, 00:42
Hi Guys,

Your warmth of feeling is enough to stave off the next ice age!

I find it hard posting here cos it takes so long to compose messages only for Andrew to delete the message in a flash.

Pete, there is some very interesting research going on at present. It seems as though MND has a strong impact on our immune system, our astrocytes. Could this be why NP001, sodium chlorite has an impact on disease progression??

Sherrif Bob, yowee sir! I ain't pushin up daisies yet, not till they find a cure that is.

Lolly
16th March 2013, 00:47
Lovely to hear from you Graham. Im so glad you are keeping your spirits up. We are your friends :) xxx

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