Parents, carers and disabled parents
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Support for my sister - what can I do?

bartybarty Member Posts: 1 Listener
Omg, where do I start.....?
My sister has haemeploega (Not sure about the spelling) after a hit and run accident nearly 50 years ago 
My parents have kept her Molly coddled and won't hear about any help for her in terms of physio or any kind of walking aid, they've basically kept her more disabled cos it's easier for them to keep her that way. Social Services  can't do anything cos my parents are her main carers and can say no to everything that's suggested 
What can I do? I'm desperate for a solution .....


  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    You can take a horse to water but you can’t make it drink yeah? Welcome! Just be there for when she needs you and treat her like the person she is to you. You will have to wait till she is ready 
    I am a fibro warrior !💜♏️
  • GeoarkGeoark Member, Scope Volunteer Posts: 1,375 Disability Gamechanger
    Hello @barty and welcome to the community.

    Unfortunately there may be very little you can do, other than being there for your sister. 

    I assume the word you are looking for is hemiplegia? Usually damage to one side of the brain causing weakness down one side of the body, but can have other affects. If your sister is unable to express what she wants with regards to treatment or does not have the capacity to make a decision then as you say your parents can mostly veto anything suggested. 

    Have you spoken calmly with your parents why they won't accept help or therapy for your sister?

    As an individual I stood alone.
    As a member of a group I did things.
    As part of a community I helped to create change!

  • fishingmumfishingmum Member Posts: 562 Pioneering
    Depending on your sisters communication levels, there will not be much you can do, however if your sister can show interest in something maybe look for things on youtube that your sister can watch and maybe show an interest in a certain therapy or something she would like to join in with. If your parents see that your sister would like to try these things it might make the difference in their decisions.
    I hope you find something that can help.
    life is too short to let others make you miserable.
  • Jean_OTJean_OT Member Posts: 528 Pioneering

    Hi @barty

    Thank you for raising this issue 

    Preventing people from accessing the medical care (i.e. in this instance Physio) or necessary mobility equipment is actually a very serious matter, that shouldn't be allowed to go unchallenged.

    If your sister has the mental capacity to make her own decisions on these matters and your parents are denying her wishes, then she really needs to (at the very least) have an independent advocate appointed to support her in communicating and achieving what she wants.

    If your sister doesn't have mental capacity to make her own decisions on these matters and so  your parents are making decisions on her behalf (either informally or formally appointed by the Court of Protection) then they still have a duty to make decisions that are in her best interest.

    Denying a vulnerable adult access to things that are necessary to maintain their health may potentially constitute either neglect or psychological abuse and should, therefore, be treated as a serious concern.

    Often in these situations parent carers have been working really hard to do what they think is best for their adult disabled child, often with very little support. Sometimes they feel exhausted or over-whelmed and don't feel able to support the disabled person to access things that may make them more independent.

    Certainly I have had contact with many well-meaning parents who have become insular as a result of their caring role and not realised that legislation and expectations have moved on.

    Unfortunately, in becoming insular they can also inadvertently deny the person they care for opportunities. One unfortunate consequence of which is that when the parents die or become too frail to continue in a caring role, the disabled person is unable to cope with the change. It is better for all concerned that transitions are planned and opportunities for individuals to practice making decisions and gaining greater independence are introduced and increased over time.

    It sounds as if you have tried talking to your parents and they are not listening. It also sounds as if you have tried talking to social services and not been taken seriously. Unfortunately in the current era of under-resourcing and social workers carrying huge case loads there are some professional that may choose not to see a problem or not listen to a concern being raised, these professionals may well be in breach of their organisations safeguarding policies and legislation.    

    If you have a serious concern about your sister you may well have to assertively escalate the matter to get your concerns investigated. The next step would to be contact the Adult Safeguarding Team at the local authority which covers the area where your sister lives and explain to them that you believe your parents are failing to allow her access to the treatment and mobility aids that she needs. I appreciate that this may feel like a very difficult thing to do and if necessary you could choose to do it anonymously.

    Best Wishes



    Jean Merrilees BSc MRCOT

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