theMNDcharter

Just signed up to this :

The five point MND Charter

1. People with MND have the right to an early diagnosis and information
2. People with MND have the right to access quality care and treatments
3. People with MND have the right to be treated as individuals and with dignity and respect
4. People with MND have the right to maximise their quality of life
5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.

The Motor Neurone Disease Association General Election Campaign 2015 page is here.

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2 Responses to theMNDcharter

  1. Tired & Scared says:

    I hope that candidates (of all parties) are “signed up” to more than just the five headlines.

    The headlines are so “obvious” as to be almost meaningless. Would anyone seriously disagree with:
    1. People
    who are sick have the right to an early diagnosis and information
    2. People
    who are sick have the right to access quality care and treatments
    3. People
    who are sick have the right to be treated as individuals and with dignity and respect
    4. People
    who are sick have the right to maximise their quality of life
    5. Carers of people
    who are sick have the right to be valued, respected, listened to and well-supported.

    For a disease like MND (which killed my father), you have to understand what is behind the headlines and commit to them – which means resources – which means taxes or cuts elsewhere. If you will not commit to those taxes or cuts, your support of the charter is phoney. Some candidates will sign up to such a bundle of “charters” that the implications are impossible or contradictory.

    Looking behind just part of (1) – early diagnosis and information:
    Appropriate tests must be carried out as soon as possible to confirm MND. The diagnosis should be given sensitively, in private, with the person with MND accompanied by a family member/friend and with time to ask questions.
    What is the real situation – and I don’t think it has changed that much since my father’s time.

    His GP was mystified by his symptoms but did not want to refer him.
    Eventually after Sainsburys had insisted that he be taken round the supermarket in a wheelchair, he went private for “tests”.
    His GP then phoned him with the results and told him “nothing could be done”.
    My Dad phoned me (at the opposite end of the country) at about 10 o’clock that night and I spent the next few hours reading parts of the Motor Neurone Disease Association website to him.
    Without private care and the respite assistance of the local hospice (which was 17% NHS funded and 83% charitably funded) I don’t know what would have happened.

    If you think the above experience is “fair enough” sign every charter that you get sent. But if you don’t think it is good enough, don’t sign unless you know that you and your party will do something not just for people with MND but all others who are sick.

    Looking ahead to when I am old, there will be less NHS, less social care – every Conservative Government ratchets away at what we have and Labour Governments do not repair the damage – I don’t think the current political system allows that to happen. I don’t have a child who will fight for me and my savings will not fund decent care (current proposals are so slight that they will have a minimal effect on very few people). If I get a progressive terminal disease, I don’t want to die in a “death suite” in a Zurich Industrial estate, but I don’t want to jump in front of a train driver and yet I don’t want to leave it too late to be able to “look after myself”.

  2. Tired & Scared: I did not write the Charter. If you think it should be re-written you should take this up with the Motor Neurone Disease Association. However, I do put these pledges on this blog so that my commitment does become a matter of public knowledge. If I am fortunate enough to win next May then please come back to me – I am definitely supportive.

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