Campaign for better disabled medical care

2

Comments

  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,809 Championing
    I would be interested in campaigning for this as i and other people with disabilities face so many problems when it comes to the NHS 
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    Can Scope please get involved and advise?
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    edited December 2022
    Hello @Wibbles it's frustrating to hear your latest news!

    If you'd like some guidance on complaining to the NHS you'll find all the information you need on the website.

    You might also like to look into advocacy services provided by other organisations, which I hope will be of help to you. 

    If you'd like to run through things with one of our advisers then you can email the Scope Helpline on helpline@scope.org.uk.

    If you need any support with the impact this could be having on your mental health, then please reach out, and we'll do what we can to help :)
  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,809 Championing
    Alex_Scope said:
    Hello @Wibbles it's frustrating to hear your latest news!

    If you'd like some guidance on complaining to the NHS you'll find all the information you need on the website.

    You might also like to look into advocacy services provided by other organisations, which I hope will be of help to you. 

    If you'd like to run through things with one of our advisers then you can email the Scope Helpline on helpline@scope.org.uk.

    If you need any support with the impact this could be having on your mental health, then please reach out, and we'll do what we can to help :)
    Thanks for replying to us Scope even though you are on holiday. 
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited December 2022
    My hospital is generally an extremely good performing one
    It was in the top 20 in the country last two years
    It is let down by a few departments that appear believe that the disability rules don't apply to them
    Urology are going nowhere near my private parts until they confirm that they know what the problems are.... 
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited January 2023
    stormy said:
    Wibbles said:
    I have a sigmoidiscopy next Tuesday and the hospital department carrying out the procedure refuses point blank to email me with details 
    They know that I don't /can't speak on the phone. I have told them many times yet 
    They insist on phoning me - which they did on Friday (again) 
    Would this be classed as breaking the equalities Act 2010 not to allow a disabled person communication as they prefer and require? 

    Interestingly I just made a similar complaint to my local NHS about them not properly making adjustments to account for the fact I cant talk on the phone. My complaint was upheld. I said it was indirect Discrimination in their contact PCP. They have put a note on my file not to ask to talk to me on the phone and put my email address as a contact instead.
    I'm not the only one then
    They seem to think that if THEY speak slowly and loud - there is no reason why I should not be able to reply
  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,809 Championing
    Wibbles said:
    My hospital is generally an extremely good performing one
    It was in the top 20 in the country last two years
    It is let down by a few departments that appear believe that the disability rules don't apply to them
    Urology are going nowhere near my private parts until they confirm that they know what the problems are.... 
    mine to its named the best children's hospital in the North but we still do have problems with the NHS
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited January 2023
    I have been given a face to face appointment with urology on Jan 16th via a phone call - why can they not understand "poor speech" and insist on speaking to me? 
    This is almost 2 months before the original planned phone call consultation

    My wife is not very happy about this & is giving me the silent treatment! 
    Because I failed to tell her that I had requested a face to face - due to a previous argument and the date is a problem - we had planned to visit her parents (we've not been able to do this for over 3 years due to covid!) 
    Married life is not easy even after 20 years 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    I hope that you and your wife manage to work through this disagreement @wibbles :( 
  • SueHeath
    SueHeath Online Community Member Posts: 12,388 Championing
    Bless that's a difficult one @Wibbles as i know the appointments are like gold dust at the moment x
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited January 2023
    Had my long awaited urology face-to-face this morning
    Nothing has come of it
    I was told that my prostate is normal sized but my bladder muscles are weak
    They are willing to do an op on my prostate - to reduce its size) but it may cause it to constantly dribble - which I dont want
    So - after over 10 years of bladder problems - I am back to square 1 again - no idea what I can do to stop having "accidents" (just had one again - 1/2 hour ago)
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    edited January 2023
    Oh @Wibbles I'm so sorry, it must be so frustrating. Did they give you any advice on what other route you could take other than surgery? Forgive me as it's not my area of expertise but I understand there are different medication routes, unless you have tried them all already? 
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited January 2023
    Hannah_Scope said:
    Oh @Wibbles I'm so sorry, it must be so frustrating. Did they give you any advice on what other route you could take other than surgery? Forgive me as it's not my area of expertise but I understand there are different medication routes, unless you have tried them all already? 
    He is referring me to another consultant 
    I have tried 2 or 3 different meds with no sucess 










  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,809 Championing
    Wibbles said:
    Hannah_Scope said:
    Oh @Wibbles I'm so sorry, it must be so frustrating. Did they give you any advice on what other route you could take other than surgery? Forgive me as it's not my area of expertise but I understand there are different medication routes, unless you have tried them all already? 
    He is referring me to another consultant 




    That's no good my question is why didn't you just see that consultant in the first place.
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    durhamjaide2001 said:
    Wibbles said:
    Hannah_Scope said:
    Oh @Wibbles I'm so sorry, it must be so frustrating. Did they give you any advice on what other route you could take other than surgery? Forgive me as it's not my area of expertise but I understand there are different medication routes, unless you have tried them all already? 
    He is referring me to another consultant 




    That's no good my question is why didn't you just see that consultant in the first place.
    I don't know 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hopefully this consultant will have a better route than surgery for you 🤞
  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 13,809 Championing
    Wibbles said:
    durhamjaide2001 said:
    Wibbles said:
    Hannah_Scope said:
    Oh @Wibbles I'm so sorry, it must be so frustrating. Did they give you any advice on what other route you could take other than surgery? Forgive me as it's not my area of expertise but I understand there are different medication routes, unless you have tried them all already? 
    He is referring me to another consultant 




    That's no good my question is why didn't you just see that consultant in the first place.
    I don't know 
    Which drives me mad they should of got the right consultant in the first place.
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    edited January 2023
    Update on my Urology problem
    I received a letter from Urology yesterday re: Mondays consultation (face to face)
    They have a number of things incorrect

    Namely "Wheelchair bound due to cerebral palsy after head injury" - This is from the consultant
    Totally untrue - I believe that CP cannot be aquired later in life anyway ?
    I do have some of the symptoms but NOT CP !
    I simply suffered a head injury that damaged my basal ganglia 33 years ago !
    Oh yes and Parkinsonism

    And why do they keep on assuming that I have problems with STARTING TO pee AND KEEPING A FLOW - I keep on telling them that I pee TOO MUCH - I have an overactive bladder.

    I can see a legal case developing ?

  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    Also that I am content with my urinary symptoms!
    What are they claiming with this comment? 
  • Wibbles
    Wibbles Online Community Member Posts: 2,574 Championing
    Would YOU trust a consultant, who believes that a person can develop CP when they are in their late 50's -  to operate on your "private bits" ?

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