Cerebral Palsy
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Hello my name is Emma

EmmybedEmmybed Member Posts: 7 Connected
Hello, I'm Emma, I'm 37 and I have mild right hemiplegic cerebral palsy. I only discovered this for myself aged 22 when I was a medical student and the paediatric consultant I was studying under noticed it - I had just accepted I limped slightly and that was normal for me. I've also always been dyspraxic (although never formally diagnosed) and I have a poor sense of direction when I'm tired or upset.  My muscle tone also gets higher at these times and I get visual inattention. 

I quallified as a doctor in 2005, but struggled to stay in clinical practice, left and retrained as a teacher. I'm now back in higher education working as a lecturer in a medical school. 

I have recently developed urinary incontinence, which is upsetting. I'm having pelvic floor physio and my physiotherapist thinks that I have a spastic pelvic floor and that my CP is the cause. I'm making some process but it is slow. 

As I age, I'm experiencing much more joint pain and muscle stiffness  and I tire easily. I'm working full time but I'm finding it increasingly challenging. It would be good to get some advice re: employment. I find occupational health very unhelpful - they seem to only be interested in you if you are actually off sick!  They don't seem to be able to make any helpful suggestions to keep me in work. 

Thanks for reading!  


  • Richard_ScopeRichard_Scope Administrator Posts: 2,105 Scope community team
    Great to meet you and welcome to our community. It looks like you have had an awful lot to deal with. The changes in your mobility, increased joint pain and tiredness are common with ageing and CP, unfortunately. However, this can be managed.
    Have you spoken to your employer about 'Reasonable Adjustments' to your place of work?

    Specialist Information Officer - Cerebral Palsy
  • EmmybedEmmybed Member Posts: 7 Connected
    I'm having My Professional Development Review on Monday with my line manager, I'm planning to discuss reasonable adjustment then. The difficulty is, I don't know what to ask for!  What sort of things could I ask for? 
  • EmmybedEmmybed Member Posts: 7 Connected
    Also I should have said thank you for reply @Richard_Scope

    It is good to have place to talk and ask questions. 

    It speaks volumes that I'm a doctor and I don't know a lot about this! 
  • Richard_ScopeRichard_Scope Administrator Posts: 2,105 Scope community team

    The Equality Act 2010 creates requirements on your employer to provide reasonable adjustments to you as a disabled person so that you are not at a substantial disadvantage compared with non-disabled people. 
    The three requirements are: 
    1) to adjust their provisions, criterions and practises 
    2) to adjust physical features 
    3) to provide aids 
    Here's the law I'm talking about: 
    The situation you describe leaves you at a substantial disadvantage compared with non-disabled people because they have not adjusted their provisions, criterions and practises, adjusted physical features, or provided aids.   
    I suggest that (if you haven't already) you talk to them, citing the equality act 2010 above, and requesting that they make reasonable adjustments to prevent you from experiencing disability discrimination.  To coach them on what 'reasonable adjustments' means, you might like to explain the barriers you're experiencing in their current set-up and highlight the ways in which they need to change. 

    Lots of people ask us at the helpline "so what does 'reasonable' mean then?" 
    Truthfully, it's a very subjective term.  To get an accurate decision on whether an adjustment is 'reasonable' you need to get the case in front of a judge in a discrimination hearing.... not something most people can, or want to do! 
    But, there is guidance - to help rule in the sensible, and rule out the silly.   
    Generally, "reasonable" depends on things like:  
    • how effective the change will be in avoiding the disadvantage the disabled person would otherwise experience 

    • it's practicality 

    • the cost 

    • the organisation’s resources and size 

    • the availability of financial support. 

    A good summary of this rule here: https://www.citizensadvice.org.uk/law-and-courts/discrimination/what-are-the-different-types-of-discrimination/justifying-discrimination/  
    Apologies for the really long reply!!

    Specialist Information Officer - Cerebral Palsy
  • EmmybedEmmybed Member Posts: 7 Connected
    Hi @Richard_Scope

    Thanks for that - I'm familar with the Equality Act, what I don't understand is working out what my barriers actually are and what to ask for.  I know that I'm tired and work at a much slower rate than I used to so I effectively work longer hours to get the tasks I need to done. I don't know how to help that, other than have less tasks to do and I don't think that counts as reasonable. I can't think of specific aids that would help. What do other people with CP that's like mine at this life stage do?
  • Richard_ScopeRichard_Scope Administrator Posts: 2,105 Scope community team
    I thought would be a useful starting point for you to start thinking about what your barriers might be.
    It's difficult to pin down what everyone at our stage of life does to mitigate the tiredness. Everbody's experience of CP is different.
    What would an ideal outcome look like for you? Once we have established that we can then work out how to get there.
    It could be something as simple as a seat so you sit whilst delivering your lectures for example.

    Specialist Information Officer - Cerebral Palsy
  • EmmybedEmmybed Member Posts: 7 Connected
    Thank you @Richard_Scope - I'm very grateful for your help. I already sit when I lecture and teach if I need to so that does help. Academia tends to be free flowing and informal in many ways - noone will care if I sit when I lecture i.e. there is not rule that says I can't.  
    I think that some of the things I need are actually just to be mentored and managed like any person would need - academia allows a lot of freedom and autonomy in many ways that's good because I can do my own thing and work from home when I like. I have no set working hours or annual leave allowance. I am required to teach some sessions,  attend meetings and complete tasks and projects to deadlines. If I want to go on holiday, I can just make sure my diary is clear and tell my line manager I'm not going to be in work.  As long as stuff gets done, noone is bothered. 

    The downside of this is that we are a collection of lone rangers who were attracted to this career because we like working alone - so teamwork is difficult and management is problematic - I probably have conversation with my line manager once every 8 weeks face to face. Pretty much all communication is done by email.

    I think it would help to know what my week was going to look like further in advance and how events were organised. One example - I recently went to a conference where the lunch was provided in the foyer of a building and there was nowhere to sit or any tables apart from the ones that had the buffet on. It never occurred to me to ask if there would be chairs. Another example - we had an away day and as a 'surprise' we were required to do a treasure hunt around the grounds of a stately home on foot - no consideration to my needs or other disabled staff's needs. I had to stay behind - but I could  have participated if I'd been given more time to prepare, i.e wear my afo, stretch more etc.  So I think a lot of my fatigue happens because I'm not given the chance to prepare. 

    I also think I'm still coming to terms with the 'new me' so I forget to advocate for myself i.e I plan a schedule that the 'old me' could have easily coped with. 

    I think just reflecting on the situation in order to be able to reply to you, has helped me have a few ideas so thank you!  

  • Richard_ScopeRichard_Scope Administrator Posts: 2,105 Scope community team
    Talking something through is something I always find beneficial. I have moved our conversation to the Cerebral Palsy discussions area.
    If there is anything you need to chat about do let me know @Emmybed
    Specialist Information Officer - Cerebral Palsy
  • EmmybedEmmybed Member Posts: 7 Connected
    Thanks @Richard_Scope

    I'll let you know how my PDR goes. 
  • EmmybedEmmybed Member Posts: 7 Connected
    Hi @Richard_Scope,

    My PDR went well. I got the adjustments I asked for. My line manager was supportive. Thank you for all your help. 

  • Richard_ScopeRichard_Scope Administrator Posts: 2,105 Scope community team
    I am so happy to read this! Thank you for letting me know and if you need any help or a chat in future you know where I am.

    Specialist Information Officer - Cerebral Palsy
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