Help for my son with CP — Scope | Disability forum
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Help for my son with CP

leeCal
leeCal Community member Posts: 7,550 Disability Gamechanger
edited October 2020 in Housing and independent living
Hi, my son lives independently and does a part time job with difficulty as he uses crutches to get about. Recently he has experienced various problems with life in general but refuses to see a doctor about them. He lives in one room in a house share but there’s rarely any company for him. He doesn’t cook either so relies on take always or an occasional,meal for one cooked in his microwave. And of course the lockdown has been pretty awful for him and he has experienced depression and some degree of hypochondria. Are there any services at all which may or may not require a doctors referral as he is quite distrustful of them to be honest. I feel he needs a social worker or support worker of some kind. 
Thank you in advance.

“This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
― Dalai Lama XIV

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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi i am sorry to hear of your sons struggles I dont have any advice but will tag in @Richard_Scope

    He should be able to help and offer some advice
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thank you @janer1967

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @leeCal, there is the Adult CP Hub which might be a useful.

    Also, he might benefit from a needs assessment which can offer a range of support. Please let us know how you get on. :)
    Scope

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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thank you @Chloe_Scope
    he is very resistant to help and quite bitter about services available as he feels let down by everybody and has done for some years. He’s thirty two and wants what everyone else has, full time job, own house and a family. These are his perceptions anyway of course not everyone has these things. I’ve tried to get him to have counselling because I don’t think he’s ever come to terms with his disability but he won’t see anyone. Very difficult. 

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @leeCal, sorry to hear he's so discouraged. Perhaps a needs assessment would give him control to ask for what he wants? Whether that is support to be independent or join groups within the area?

    It also is a self-refer service and would put him in touch with a social worker who will manage his case.

    I'll tag our CP officer @Richard_Scope to see if he has any further suggestions.
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Hi @leeCal
    It can be incredibly difficult when you have been let down or feel you have been let down by the medical services. Chloe has given some really good points of contact. It would be useful to break down his difficulties one by one, so they can be addressed. Does your son have access to the internet? If he would like to talk to me, I would be more than willing to see what areas we could improve. There is no quick fix and the desire to change things has to come from your son. This is what we can work on.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thanks @Richard_Scope unfortunately he’s not trying to get help though he needs it badly. It’s hard to explain but he’s now gone back to his part time work and uses that to escape his problems. The biggest problem we’ve had is trying to get him to seek help.

    I will continue to monitor the situation closely because he has spoken about taking an extreme measure and of course we’ve all been very worried about him. If I can I’ll get him to come online and speak to you. Thank you for offering to help.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Well, I'm here to support your son and you. You're not alone @leeCal
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    edited August 2020
    What is a social care referral made by scope?

    and would it need to be requested by me or by my son for my son?

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Hi @leeCal
    It wouldn't be a social care referral made by Scope. You or your son can contact your local Adult Social Care Team through your local authority and then an assessment will be carried out.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    You are able to make a self-referral for a needs assessment. I hope this helps. :)

    You'll need to have this assessment before the council can recommend a service such as:

    • equipment like a walking frame or personal alarm
    • changes to your home such as a walk-in shower
    • practical help from a paid carer
    • day care for your child if either you or they are disabled
    • access to day centres and lunch clubs
    • moving to a care home

    The needs assessment is free and anyone can ask for one.

    Scope

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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thank you for the information @Richard_Scope and @Chloe_Scope.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Hi @leeCal
    How are thing going? How is your son doing?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Hi @Richard_Scope my son still has the same problems, he thinks he has a life threatening malady, but they differ from week to week, last week it was encephalitis. He hasn’t I’m almost 100% sure of that.
     I was just wondering if there were any National clubs that he might join which are specifically for people with cp. I’m not saying he will join them, in fact he probably won’t but I feel I must try to do something to take his mind off himself. He has become self obsessed especially with regard to his health. 
    Many thanks.

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Hi @leeCal
    I'm sorry to read that things have not improved for your son and it mist be worrying for you too. Has he always been obsessive about his health or do you think that the current times we are living in have magnified these feelings? At your son's age, a group I can recommend is https://www.outsiders.org.uk/outsidersclub/club/the-outsiders-club/ I have heard lots of positives about this group in terms of meeting new people and building self-confidence.
    You mentioned in your first post, that your son has a mistrust of doctors and would rather seek therapy without a referral. If this is still the case then the therapy would have to be paid for by your son or you. I have found a therapist in Colchester http://www.cbt-colchester.co.uk/ that you might want to consider. Failing that, I would be more than happy to talk with your son, on the community or over email. Perhaps he would benefit talking to another man with CP and similar life experiences?

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    @Richard_Scope thank you for your help. He was reasonably fine until we had the lockdown and then he became obsessed with his health.
    i have suggested the outsiders club but he’s not interested.
    he would also not engage with yourself or anyone else at the moment so we’re a bit stuck. 
    But thank you anyway. Well just have to muddle along. 

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Richard_Scope
    Richard_Scope Posts: 3,556 Scope online community team
    Okay, @leeCal I'm always around should you need support. I would recommend that you take a look at the therapist's website that I have found and discuss it with your son.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thank you @Richard_Scope the therapist sounds good. 

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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  • Scottyboy
    Scottyboy Community member Posts: 47 Courageous
    leeCal. I hope that you and your son are ok? If you can get him to come on here there is plenty of friendship and support, and chat, I'd be happy to talk to him
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  • leeCal
    leeCal Community member Posts: 7,550 Disability Gamechanger
    Thank you @Scottyboy that’s very kind of you, sorry I missed your post, you have to put the @ sign before a name that way the person gets a notification.

    very kind thanks, I’ll try to get him to come online. ?

    “This is my simple religion. No need for temples. No need for complicated philosophy. Your own mind, your own heart is the temple. Your philosophy is simple kindness.” 
    ― Dalai Lama XIV

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