Hi, I'm Richard - ask me questions about CP

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  • ClareWilliams
    ClareWilliams Online Community Member Posts: 19 Connected
    I feel helpless an it’s out of my control
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    edited May 2018
    It is completely normal to feel like that. From what we've discussed you are doing a fine job! You have already mentioned that he is a happy little boy and that is the most important thing. Fantastic things can be achieved with love and a bit of hard work. Please try not to be hard on yourself. I'm here to talk to @ClareWilliams .
  • afaf
    afaf Online Community Member Posts: 7 Listener
    Hi Richard it is me again. Can you please tell me what suitable toys are for CP children. My husband’s nephew is 1 year and 2 month. 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @afaf
    Good to speak with you again. Depending on the level of the child's mobility, children living with CP can play with the same toys as children without CP. If the child's mobility is low, there are sensory toys that are available that are age appropriate.

  • afaf
    afaf Online Community Member Posts: 7 Listener
    Ok thank you so much Richard.
  • ferret
    ferret Online Community Member Posts: 3 Listener
    My daughter is 9 and has a right sided hemipareses. I would like to get her more active but am struggling to find any sport or activity groups anywhere close to our area where she can do this - would you have any advice as to where I should look?

  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @ferret
    Great to meet you and welcome.
    What type of sport or activity would your daughter be interested in? 
  • ferret
    ferret Online Community Member Posts: 3 Listener
    I'm not sure really as she has only really tried dancing, and some gmynastics at school, and wasn't particularly enamoured with either! To be honest, it's as much about getting her to meet other kids with similar issues as it is getting her moving about, so as long as there is a social aspect to it, I'm willing to look at anything.
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Our friends at CP Sport offer a range of activities that your daughter could try and there is a massive social aspect to everything they do.

    If that is not suitable, let me know and I will do my best to help find something.
  • ferret
    ferret Online Community Member Posts: 3 Listener
    Wonderful, thank you very much for your help.
  • VidaT
    VidaT Online Community Member Posts: 1 Listener
    Hi Richard,
    I am a GP practice manager in Brighton who has a 36 year old friend with Cerebral Palsy. He is very sociable and integrates with us very well. However a lot of the pubs and restaurants in Brighton do not let him in because he appears drunk. I am working with another close friend, and a member of our clinical commissioning group, to think of a way in how to prevent this. By perhaps having a card to carry and raise awareness in pubs and restaurants in the local area, and then if successful, maybe to expand the area. A couple of pubs are happy to trial our ideas. It seems there is not much support for adults. I am wondering if you would have any idea who could help with this, or whether you would yourself? Thanks so much for your time. 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Hi @VidaT
    Thanks for getting in touch.
    Unfortunately, this is fairly common with CP and Dystonia. There are some schemes that are already in existence.

    My understanding is that both cards work in similar ways and both require you to provide some sort of evidence that you are disabled. The access card costs £15 for three years and the DID card costs £10 a year, or £13 for two years if this is made online.

    Here are the links to both websites and their FAQS:
    http://www.did-card.co.uk/faqs.php 
    http://www.accesscard.org.uk/faqs/ 

    I hope this helps,
  • Katharine
    Katharine Online Community Member Posts: 6 Listener
    Hi Richard

    My brother, who lives in Worcester, has CP.  He is interested in going swimming but I do not live nearby and I am struggling to find someone who would be able to take him.  I was wondering whether this type of support was available.  He is a keen swimmer but would need transport, assistance with changing, and support with getting into and out of the pool.  Once he is in the pool he can swim unaided but isn't very good with crowds or being out of his depth (he is confident in water that is roughly 1.5 meters deep).  If this opportunity was available, I could arrange to go with him initially to see how it goes.  Any pointers in the right direction would be most welcome.  Thank you for your time and support with this query.

    Katharine 
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    Does your brother have a PA @Katharine? Swimming pools and leisure centres don't tend to provide a changing service but Perdiswell centre in Worcester has a hoist to get him in and out of the pool safely. It might be an idea for you or your brother to give them a call.
  • Katharine
    Katharine Online Community Member Posts: 6 Listener
    Hi Richard thank you for your reply.  My brother doesn't have a PA.  The problem that we have is that he would love to go swimming regularly, but he lives in a care home in Worcester and I do not live close by.  He can only go if someone picks him up and supervises him for the duration.  I thought Scope might be a good starting place to see what support might be available.  Thank you Katharine
  • Katharine
    Katharine Online Community Member Posts: 6 Listener
    Going on from your question about whether my brother has a PA, is this something that we could arrange for him?  I hadn't really thought about this as a possibility.  Could you give me some guidance on this please?  We would only need someone to take him swimming and maybe out for short walks occasionally, so this would only be for recreational purposes.
  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    edited October 2019
    Have you discussed this with the care home, as part of his care package and promoting his well-being @Katharine? 
  • Katharine
    Katharine Online Community Member Posts: 6 Listener
    Yes but only informally and they didn't really volunteer any suggestions.  Is this something I need to do and will it effect his funding?  I do not want to jeopardise his place at the care home (he likes it and is settled there) but equally I want him to have a quality of life that involves a wider support network.  Do you have any suggestions/advice as to how best to approach this?  Sorry if this sounds like a basic question but this is a new experience for me.

  • Richard_Scope
    Richard_Scope Posts: 3,740 Cerebral Palsy Network
    @Katharine it's not a basic question! I would expect that the care home would provide regular trips and activities like swimming, to help promote physical and mental wellbeing. If he is funded to live at the care home then it would depend on the level of care he receives. I think that your first conversation should be with the care home and discuss the feasibility of regular swimming.
  • Katharine
    Katharine Online Community Member Posts: 6 Listener
    Thank you, this is helpful.  It sounds like I need to find out what his package should include but I will also speak to the care home.  Thank you for your  help I will let you know how it goes, or be in touch if I need any further advice about this.

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