Parents, carers and disabled parents
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how can I help my son with scoliosis?

Azaria2802Azaria2802 Member Posts: 4 Listener
Hi, my name is Rachel and l am mum to 3 disabled boys, 2 with mental health issues and 1 with scoliosis and some mental health issues.
I have 7 children in total, 2 girls (31 & 25) and 5 boys (15,21,22,26 and 28). I also have 2 grandchildren, grand daughter aged 1 and a grandson who has just turned 6 months.
I myself have disabilities due to severe nerve damage caused by problems with my spine and l also suffer arthritis. 
I live with my partner (who's only problems are moaning too much and having an addiction to chasing flies around the house with a fly swatter!)
As you can see we are a colourful bunch  :) 
I have begun having problems with memory loss so have joined the community to help keep my brain active but mainly for insight into how l can help my son with scoliosis as l am at a complete loss with any help for him, finding work or benefits he might be entitled too.

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Azaria2802   Pleased to meet you welcome.

    Thank you for joining and sharing.

    I am one of the team of community champions.  We guide, advise and help new members who join the community.

    You come to the right place for friendship, support and information.

    Please have a look at our website for benefit advice and information.

    Sorry to hear about your son.  

    Have you spoken to our helpline for further information and advice.

    0808 800 3333.

    Hope that helps.

    Please ask if we can help with anything. Some one will know from our community or a member of our team.

    Please take care.

    @thespiceman
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hello @Azaria2802 and a warm welcome to the community!
    Thank you for telling us a bit about yourself. I hope we'll be able to help you out. Can I ask how old your son with scoliosis is, does he still live at home, does he claim any benefits currently and what sort of work is he interested in? 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Azaria2802   I have found the Scoliosis Association .

    Have you spoken to them?

    https://www.sauk.org.uk.

    Helpline 020 8964 1166.

    Also have found Evenbreak they are a employment agency who take on members of our community. Looking for employment.

    https://www.evenbreak.co.uk.

    One other point I would suggest is to speak to CAB. For a benefit review.

    Often have wealth of knowledge and expertise on benefits.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Azaria2802Azaria2802 Member Posts: 4 Listener
    Hello again and thank you for the warm welcome  :)
    Sam is 21, lives at home and does not claim any benefits.
    x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @Azaria2802! Great to have you (and the colourful bunch!) here :)
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • Connie00Connie00 Member Posts: 255 Pioneering

    Hello @Azaria2802

    My Name is Connie00   :)

      

    I am one off the community Champion’s here at Scope.  it’s really nice to meet you.

    A very warm welcome to the Community.

    I trust you are having a good day today

     

    I myself suffer with Fibromyalgia, Rheumatoid Arthritis, and FND, (functional neurological disorder)

    So, I live most of my days in pain, I can relate to where you are coming from, sometimes it gets the better of me, and sometimes I’m not sure which one is playing up more, difficult to know, so I really have empathy for you. With Fibro and FND both these conditions cause memory Loss, mind so does age. I have been to the doctors as I thought I might have started the early signs of Alzheimer’s, 

    yes, we are a colourful lot as you put it, I like that, one of my Colleague’s @thespiceman has given good advice to you,

    I would say depending on how bad your son is with his scoliosis, and the fact he has some mental health issues,  may be able to claim PIP; I would defiantly think your son should be claiming some kind of benefits, perhaps have a look at these sites

    https://www.gov.uk/pip

    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/how-much-you-get-and-how-long/

    https://www.scope.org.uk/advice-and-support/personal-independence-payment-pip/

     

     

    if we can be of any further help please let us know.

    Have a good day

     

     

     

    @connie00 :)


  • Azaria2802Azaria2802 Member Posts: 4 Listener
    Thank you so much for your replies, we have had a few weeks of complete chaos following younger sons foot surgery and l have been re reffered to neurology as my forgetfulness has got a little worse. Gp thought it may be due to my taking gabapentin so lowered the doseage, memory still fails me and boy my poor joints are so painful. I feel so lost as my partner just does not understand how worried l am and how much this pain is affecting my daily routine, l get so tired very quickly which annoys me.
    But, l still push myself as lm not quite ready to admit defeat just yet  :)
    We have an appointment week after next (gp is really hard to get an appointment with) to try and get a sick note for Sam, l swear my gp thinks lm just trying to give Sam an easy stay at home and do nothing but rely on benefits lifestyle but lm really not. l just dont want Sam claiming UC and being made to do a job where he would be a danger to himself or to others. Plus lm becoming more worried that when lm no longer around, he would have no income, my other children wouldnt be able to support him nor would l expect them too.
    We also would like Sam referred back to his consultant as his left side is feeling very restricted and sore, Physio can help him no more until she knows his organs are not being misplaced due to his scoliosis. We have looked into PIP but feel we need medical evidence and Sams is years old, l wonder if the fact that this will affect him for life regardless of any evidence would make any difference?

    @Connie00 l have OA but only in my right knee apparently which up until lowering the gabapentin doseage gave me no problems at all, RA in my shoulders, wrists and hands. Im currently crocheting cardigans for the grandchildren for christmas as it will take me till then to get them finished  :D



  • April2018momApril2018mom Posts: 2,869 Member
    edited August 2019
    Welcome to Scope!
    What about asking for a MRI scan to be done? That can tell you more. Have you contacted Remploy or not? They are a organisation that supports disabled people who want to work. Give them a call or email them. You sure have your hands full!
    Is it possible to hire respite care for him? 
    https://www.gov.uk/browse/disabilities/work
    Call your local council tomorrow. Ask about applying for benefits and external assistance for him too. Do you have a social worker or not? If not this is a useful guide to read. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/757816/PIP-handbook.pdf#page10
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