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Care Packages

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  • October 14, 2011 at 9:48 am #73999
    Care Packages

    Hello, I’m a Paediatric Occupational Therapist working in Bedfordshire. I would be really interested in finding out about what levels of service other teams provide to children with MD.
    We currently offer an assessment, provision of a block of treatment, monitor equipment needs. We then discharge however the case can be re-opened at any point at the request of the parent without waiting.
    Can anyone let me know about their service?
    Many thanks
    Helen

    helenrobinson
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    Joined: 14/10/2011
    November 12, 2011 at 12:52 pm #82531
    Re: Care Packages

    Oh dear Helen – looks like you may have been lost in the lists.

    I’d love to tell you about the care package I receive but, well, I don’t have one. I have not seen a hospital medico since 2004 nor my GP since 2006, even physio gave up around 2005 and occ Health call me on the phone once a year. Their concensus of opinion is “As there is nothing we can do, there is no need to keep making appointments, so … umm …. yeah …. like …. bye”.

    The only person I see regularly is the Orthotics Consultant for new braces and splints when I feel the need.

    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
    December 4, 2011 at 9:53 pm #82532
    Re: Care Packages

    Hi Helen,
    My son is 3 and has Md. I was an OT before I had my kids ( but not in paeds) so luckily I feel a bit more in the loop than maybe a lot of parents do! We don’t see an OT yet but I’m sure at some point in the near future – whether for equipment at home or input at school, we will. I would like to think that we would always be in some kind of contact once that happens as i’m sure as he grows, things will keep changing so he would need to be monitored. It always seems that no professional we meet is any kind of specialist in MD as the conditions are so rare – and as a parent it can feel a little like you are just left to your own devices. Not that it should be your role necessarily to combat that. Just thought it may help to see the other side a bit.
    Amy

    amymorris
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    Posts: 24
    Joined: 30/10/2011
    January 26, 2012 at 3:37 pm #82533
    Re: Care Packages

    Hello I am Lucy of Ark Complex Care, our care packages for children and adults with MD are developed on an individual basis and are provided by paediatric, ITU and specialist RGN nurse-led teams. The packages encompass: 24 hour clinical and operational support, allocated carers that are trained for the specific needs of the individual and continuously competency assessed, plus the management of all equipment, stocks and stores.

    I hope this is helpful – there are more details about our services at http://www.arkhealth.co.uk

    Lucycarey
    Participant
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    Joined: 18/01/2012
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