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

Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team

Hi, my name is Richard and I work for Scope in the role of Specialist Information Officer - Cerebral Palsy. I will be providing specialist support to various aspects of Scope's work including the online community, helpline and information teams.

I live with my wife and our daughter. I have spastic quadriplegia and use a wheelchair. As some of you may know I volunteered as a Community Champion in my spare time. To date my career has been varied and I even tried my hand at running an Amusement Arcade! I join Scope from the Higher Education sector, where I worked for a Russell Group University for four years. I am passionate about removing barriers to Higher Education and that disabled people can realise their aspirations whatever path they choose.

Whatever your experience of CP, I am keen to work with you to improve the information we offer to people living with CP and their families.

Scope
Specialist Information Officer - Cerebral Palsy

Replies

  • grannieanniegrannieannie Posts: 2Member Listener
    Looking for support for my daughter.Her daughter Eryn has RH Hemiplegia.She is 14 months old
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Hi @grannieannie 
    Thanks for posting and good to meet you! What kind of support are you looking for, for your daughter?   

    Has your daughter already had an appointment with a Paediatrician?

    I will include a link to a webpage that lists local groups and Disabled People's Organisations (DPO).
    https://www.scope.org.uk/support/disabled-people/local/about 

    I will also include a link to some information about when your child has received a diagnosis.

    https://www.scope.org.uk/support/families/diagnosed 

    I hope that helps. 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    So good to have you on board @Richard_Scope

    Scope
    Senior online community officer
  • MarkinsuttonMarkinsutton Posts: 82Member Pioneering
    Hello @Richard_Scope and welcome

    I have CP myself. Do you feel that attitudes to people with CP have changed over the years? When I was younger I was written off and was told I wouldn't achieve much, so everything I have achieved has been an inspiration to others. Now in my 40's I have found it is best to reduce my expectations on what I can achieve. I want to set example to others with my type of CP and run a small group find it hard to as some people say, their son or daughter would never achieve what I have done but I don't have the case studies to back it up. Do you have any resources so show the trend of what support people can achieve. 

    I understand this could be a complex answer so no worries if it is too much. 
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    edited April 2018
    Hi @Markinsutton 
    Good to talk with you. 
    I had a very similar start to you in so far as my Mum was told that I would never speak, or sit up on my own and that she should give me up and place me in an institution. Thankfully, that medical opinion fell on deaf ears. 
    I do think that attitudes have improved slightly, particularly in the medical profession in terms of diagnosis for children but that is not to say that further improvement isn't required especially around the provision of care for adults with CP.
    I'm not sure I have fully understood your question. Are you asking for data on what people living with CP can achieve if given the right support?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Hi @Lucysam25 

    I'm so sorry to hear that you're feeling this way. You are a member of our community and we appreciate you.

    If you are having thoughts of suicide, it is important that you discuss them with someone who is qualified to help. Please call the Samaritans on 116 123 (free) or email them at [email protected] You might also benefit from reading MIND’s information on how you can help yourself.

    I'm am going to move your post to the https://community.scope.org.uk/categories/talk-about-pip-dla discussion. There is a lot of useful information within there.

    Please stay in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    Hi Iv been talking to you on my post but seen this link where I can ask you about cp..
    I have been told my son has high tone in back leg muscles, but won’t say if it’s co til he’s had his mri scab which we are currently waiting for. 
    He started off with knees bent constantly even when standing an cruzing, he did start taking steps independently an whole holding our hands but then stopped walking then was able to do few steps again after physio started, but now he’s stopped walking altogether an can’t bare any weight. Does this sound familiar to cp? I have no experience in this at all an there is a lot of mixed references online and different people saying different things.
    Hope this is ok?  
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Hi @ClareWilliams 
    Thanks for getting in touch and it is great that you have joined the Community. Please always feel free to ask questions. Remember there is no such thing as a silly question and we are here to support each other.

    Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your has cp. 

    By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters.

    Have you been given a date for his MRI scan and are you in contact with a paediatrician?

    You can also ask the physiotherapist to give you stretching exercises to do at home. If you are not already.

    Sometimes the online environment is not the best place to seek out medical information, it can increase your concerns in my experience.

    Keep in touch.


    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    @Richard_Scope Thank you for messaging me back. Yes we are in contact with consultants/ general paediatrician. Due to his age there’s apparently only one hospital in our area that would do it so waiting for phone call with date. He does already have physio an she’s given my some things to do so I do my best to do them with him. 
    My doubts are because he’s so up an down but now got worse. 
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    I'm certain you are doing your best @ClareWilliams and that is all you can do. The important thing is that you have made the appointments and you are already ahead of the curve in terms of physiotherapy. When I was younger physio was crucial to keeping me as mobile as I could be.
    Your son will have 'better' days than others. Tiredness can make muscle tightness worse. Do you have heated swimming baths near you? Swimming is fantastic for doing those stretches without him realising he is doing it and obviously he is not putting the added strain on his legs by weight bearing whilst in the pool. 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    @Richard_Scope We have just been told about swimming so that’s now a weekend family thing.
    he don’t seem to get tired he just can seem to bare his own weight now, he’s getting very frustrated tho, because he really wants to do it an he try’s all time but falls 😢
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    edited May 2018
    The feeling of frustration is very common, I still get it on occasion! Gentle consistent encouragement is the key. Your son will adapt and find his own way of doing things. The swimming will be of great benefit to him. You are obviously blessed with a very determined little boy @ClareWilliams!
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    He is very determined, happy an very cheeky lol
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    They are the best qualities to have @ClareWilliams :) 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    It definitely is. Sorry can I just ask another question. 
    On quite a lot of sites of not all of them it says you don’t get worse with cp is that correct?
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Yes, of course, you can. The current level of understanding about cp is that the impairment does not worsen. However, I have to add that ageing and life choices can make the effects of cp worse over time. What I mean by that is it is important to exercise and keep up with physiotherapy. As this will help maintain the greatest level of mobility.  
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    Can you also move the effect areas tidy sometimes with no problems and then nothing against? So he was able to walk and bare weight an then couldn’t do anything then he could an now he can’t again. Is that common? 
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Good morning @ClareWilliams 
    I'm afraid I don't understand the first part of your question. For the second part; He will have better days than others. For example, If I had, had a busy day physically chances are the next day my legs would be particularly tired.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    Sorry I mean he was able to use legs but now he can’t do anything other than crawl. 
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Hi @ClareWilliams 
    He is probably doing that because it is the easiest way for him to get around, requiring less effort. I personally would not be too worried by that at this stage.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ClareWilliamsClareWilliams Posts: 19Member Connected
    I feel helpless an it’s out of my control
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    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 .
    Scope
    Specialist Information Officer - Cerebral Palsy
  • afafafaf Posts: 7Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    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.

    Scope
    Specialist Information Officer - Cerebral Palsy
  • afafafaf Posts: 7Member Listener
    Ok thank you so much Richard.
  • ferretferret Posts: 3Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Hi @ferret 
    Great to meet you and welcome.
    What type of sport or activity would your daughter be interested in? 
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ferretferret Posts: 3Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    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.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • ferretferret Posts: 3Member Listener
    Wonderful, thank you very much for your help.
  • VidaTVidaT Posts: 1Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    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,
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KatharineKatharine Posts: 6Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    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.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KatharineKatharine Posts: 6Member 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
  • KatharineKatharine Posts: 6Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    edited October 29
    Have you discussed this with the care home, as part of his care package and promoting his well-being @Katharine
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KatharineKatharine Posts: 6Member 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_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    @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.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KatharineKatharine Posts: 6Member 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.
  • Richard_ScopeRichard_Scope Posts: 1,717Administrator Scope community team
    Please do let me know. Be prepared to argue your point @Katharine
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KatharineKatharine Posts: 6Member Listener
    Thank you and will do :-)

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