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Support Garments

Hi I have lymphadema in my arms and legs. I can manage my leg garments but due to a operation gone wrong I cannot use my left arm very well so trying to put the arm garments on is impossible.  I asked adult care services but they said no ask your doctor to arrange for a district nurse to come in but the last time I ask they said no. So please can you advise me how to get the help I need to put the sleeves on.
thank you
Barbara

Replies

  • feirfeir Member Posts: 396 Pioneering
    Have you no family? That's who i rely on.

     I know they encourage you not to have kids while on benefits but basically my kids are my carers now. i'd be completely stuffed if i'd let poverty stop me having them.
  • BarbaraannBarbaraann Member Posts: 5 Listener
    Unfortunately no my sons are too busy to help me
  • feirfeir Member Posts: 396 Pioneering
    That's a shame.Hope you find some help.
    I wish i knew how to organise a service type thing, where  people who lov ehelping others out could do that and those needing help culd get it.
  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Hi @Barbaraann welcome to the community!

    It might be worth contacting your local authority to ask about a Cre Needs Assessment. You can read about it more here
    Disability Gamechanger - 2019
  • BarbaraannBarbaraann Member Posts: 5 Listener
    I have tried them and they said no because it’s a medical problem but district nurses cannot do it due to health and safety 😞
  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    I can understand how frustrating this is for you.

    Is it all types of upper garments you have difficulty with?
    Disability Gamechanger - 2019
  • BarbaraannBarbaraann Member Posts: 5 Listener
    Yes. I have to buy bigger coats and jumpers because my arms are so big. When they make plus size clothes they make the body bigger but not much on the arms. It’s the same with trousers I can get into a size 20 but because of the Lipoedema and lymphoedema in my legs I have go to size 24/26. 
  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    I am unsure how else to advise, @Jean_Scope will be in contact with you soon! :)
    Disability Gamechanger - 2019
  • Jean_OTJean_OT Member Posts: 528 Pioneering
    Hi @Barbaraann

    Thank you for posting on the "Ask an Occupational Therapist" page , sorry for the delay in responding to you, currently I am only able to check for messages a couple of times a week.

    If you have a clinical need to wear to wear prescribed pressure garments due to lymphoma , and you are unable to get into them without assistance then I would expect this to be classified a 'health need' and therefore addressed by the District Nurses.

    You said that they had refused on the ground of 'Health and Safety' . Is there something about your specific circumstances that would put the District Nurse at additional risk? If so, is this a risk that could be managed or diminished to make the visits possible? This is a discussion that needs to be had with your GP and/or the Head of the district nursing team.

    If you are unable to make any progress you may need to consider a formal complaint or asking for support for an organisation, such as the Patient's Association https://www.patients-association.org.uk/ in trying to find a resolution.

    If you have previously seen a Lymphoma Nurse Specialist it may by worth getting in touch with them against to see if they can support you with this issue. If you have never seen one ask your GP if there is a Nurse Specialist in your area that they could refer you to.

    Your GP could also potentially refer you to an Occupational Therapist (OT). The OT may be able to assess how you are currently trying to get into the sleeve and suggest changes to the sleeve or your technique to try to make it manageable for you to do independently, perhaps with the use of a devise such as 'Medi Arm Butler' : https://www.mediuk.co.uk/products/medi-arm-butler/ Such products can also be purchased online, for example: https://www.amazon.co.uk/Medi-Arm-Butler-N-6900057/dp/B002BEXUJ6
     
    This  may also be something that the Lymphoma Action Helpline https://lymphoma-action.org.uk/ might be able to advise on.

    Hope you are able to get this issue resolved,

    Best Wishes

    Jean
      

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • BarbaraannBarbaraann Member Posts: 5 Listener
    Thank you. I will go back to the doctor and ask again
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