What support can my friend get? — Scope | Disability forum
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What support can my friend get?

Boots174 Member Posts: 4 Listener
We have a friend with micromelia. He is 58 years old and can do little for himself. He lives in council accommodation which has been adapted for him. He now needs full time care and has little money..He can now no longer get on to the toilet and has been reduced to using a bucket until the council can get round to installing a wet room and low toilet. We get passed from department to department trying to get things sorted for him. Does anyone have any advice. 


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @Boots174
    Welcome to the community! Sorry to hear about your friends situation, it might be worth getting an Occupational Thrrapist involved to find out things that would really benefit him :)
    Disability Gamechanger - 2019
  • angel137
    angel137 Member Posts: 51 Courageous
    Does he receive Pip? If not, he needs someone to help him apply for it.
  • Boots174
    Boots174 Member Posts: 4 Listener
    Hi Angel, as far as I'm aware he receives DLA Care Higher, DLA Mobility High and ESA  he also get his council rent and tax paid. He has to pay £45 per week for Home care in order to help him bath twice per week. There is a new vehicle in the wind which means he will lose his mobility allowance.

    How can I get him PIP?
  • amiramohammod18
    amiramohammod18 Member Posts: 5 Listener
    edited September 2018
    Welcome to this community.


     PIP is split into two components.The first one is daily living component which is for people who need help to take part in everyday life and the second is mobilty component which is for people who find it hard to get around.

    These 2 components both have 2 levels which are standard or enhanced. Which level he is in will be assessed by 12 activites ( 10 for daily living and 2 for mobility). For both components you need 8 for standard rate and 12 for advanced rate. A PIP test must be done. This will be found in the link above.The PIP award can last for up to 2 years or much longer. If his needs are likely not to change then awards maybe ongoing.

  • Boots174
    Boots174 Member Posts: 4 Listener
    Thanks for that. His condition is so rare there is little knowledge of it in the medical community. When we try to get help no one seems to have any idea of what to do or help. He basically has no limbs, the are hands attached to his shoulder blade and flippers on his hips that means normal mobility aids are of no use. He has to be physically lifted on to a toilet etc. normal lifting straps are of no use.
  • amiramohammod18
    amiramohammod18 Member Posts: 5 Listener
    Then I would also advice you  to contact the local social service department or GP. Occupational therapy will help him with ; Adaptation (environmental and equipment ), Health and safety advice and management of risk , Moving and handling , Postural management , Self-care skills , Sensory modulation and integration , Specialist equipment ( for personal needs such as tolieting and bathing)  and Upper limb orthotics/hand splinting.
    This will be  accessed via the GP or Social Services.
  • Boots174
    Boots174 Member Posts: 4 Listener
    Thanks for your help.
  • amiramohammod18
    amiramohammod18 Member Posts: 5 Listener
    Glad I could help.
  • Jean_OT
    Jean_OT Member Posts: 513 Pioneering
    Hi @Boots174

    Thanks for posting in my " Ask an Occupational Therapist " section of the online community.

    Sorry for the delay in responding, I only work part-time for Scope so it sometimes takes a few days before I can post a reply.

    I see that in the meantime a few others have kindly attempted to assist but not all the advice you have been given is correct.

    Firstly, I would advice AGAINST trying to claim PIP at this time. Your friend is already getting the highest possible amount of DLA (which is the same amount of money as the enhanced rate of PIP). He can not get DLA and PIP, it is one or the other. PIP is the benefit which is replacing DLA for people of working age, due to his age your friend will be invited to migrate soon anyway. Disrupting his current DLA claim by attempting to claim PIP instead would be very unwise and may well lead to difficulties with the new Motability contract he has already arranged.   

    If he is "awaiting" an appropriate toilet and wetroom being installed  by the council this means he has already had a recent OT assessment, as the work can not be agreed without that assessment happening. From your post it isn't clear what the timescales are here, how long has he been waiting since the adaption was agreed?

    @Ami2301 has already sensibly suggested that you contact the Community OT. If adaptations are already in the pipeline it is likely that he has an open case with a specific OT.  Your friend can check with them what is happening and when the work is due for completion. If the wait is outside of the guidelines he may have grounds for complaint.

    If it isn't practical for him to make a complaint himself he can authorise someone to act on his behalf or seek the support of a local disability support/advocacy organisation, if there is one.

    The scope helpline can offer professional advice and signpost to any local services which may be able to assist:   helpline[email protected]

    Best Wishes



    Jean Merrilees BSc MRCOT

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


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