Survey reveals shocking lack of specialist care

Viewing 4 posts - 1 through 4 (of 4 total)
  • #73192
    Survey reveals shocking lack of specialist care

    The Muscular Dystrophy Campaign has published a shocking report today, following a national patients’ survey, which reveals an alarming lack of specialist multi-disciplinary care for people living with muscle disease.

    Watch Newsnight report on our findings.

    Sam

    mesamb
    Participant
    Posts: 166
    Joined: 16/08/2010
    #75720
    Re: Survey reveals shocking lack of specialist care for peop

    I feel that the problem also lies with the GP’s, also most Nurses who I have worked with throughout my Nurse Training do not have any knowledge of MD neither.
    To be able to access specialist services, GP’s and Healthcare professionals need to know what the general needs are of individuals with MD and also the specialist services available. Having a huge lack of knowledge which is most certainly the case, impacts on optimal care that could be provided and as we know all too well, can impact quite siginificantly on life-expectancy.

    These people need to be educated in order to help improve care all round, it is no good a Consultant Neuromuscular Specialist liasing with the local GP and local Nursing team if they have no idea on likelihood of progression of Neuromuscular Conditions, this again impacts of the care they receive.

    I for one cannot sit there and let this happen, I joined the Greater Manchester Neurological Alliance in the hope that we can increase the awareness, which is fundamental to an individual living with MD.
    Nicci.

    nicnic
    Participant
    Posts: 9
    Joined: 15/09/2010
    #75721
    Re: Survey reveals shocking lack of specialist care

    The medical profession is a one-size-fits-all establishment but each patient must be individually tailored for, it almost sounds contradictory. As research and understanding of the human body moves ever forward and different styles and types of afflictions are discovered, catalogued and diagnosed the wealth of knowledge has to be more than any one human can have at instant recall. It must be impossible for a GP, Nurse, General Medic to know within a blink of an eye whether a patient is MD, MND or MS or something else let alone the sub-types and as every patient travels their road differently there are an infinite number of variables to equate [can you tell I’ve been watching Numbers, lol].

    I have always thought, I am the expert in my FSH, it may not be the text book version . I need this and either you get it for me or find out who I go to [stroppy madam alert, lol]. I always ask at a first meet, do you know much about MD and/or FSH and I know the answer from the glazed eyes staring back at me,and I always tell tem”You need to look here” and pass www details or leaflets.

    The problem is reaching that balanced compromise point, where the medical person knows medically best and the patient knows intimate first hand best and between the two proper, reliable, efficient, effective care can be given maintained and amended as symptoms/needs shift.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #75722
    Re: Survey reveals shocking lack of specialist care

    I wanted to let you all know about a planned demonstration in Birmingham on October 3rd to coincide with the Tory Party Conference, i aim to be there to express my outrage at the proposed cuts to the weak and the sick, fancy going along?

    http://enilwest.wordpress.com/2010/08/27/join-us-to-protest-at-the-tory-party-conference-birmingham-england-by-debbie-jolly/

    Ranald.

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
Viewing 4 posts - 1 through 4 (of 4 total)

You must be logged in to reply to this topic.

Keep in touch