what do you think to this?

pollyanna1052
pollyanna1052 Online Community Member Posts: 2,015 Championing
edited October 2019 in Coffee lounge
Hi, I recently posted that after being discharged 2 years ago from my regular neurology dept....I had got the opportunity of a 2nd opinion/fresh look at my 20 year old non diagnosed condition.

My appointment was for 6th Nov...great.

Today I get a letter from (name removed by moderator) which says the clinic I was referred to doesnt think I should be seen by them.
They are considering my case and I will hear from them at some point.

Strange?
Feel a bit deflated.

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    That must be frustrating @pollyanna1052 - did they say any more about why they think this? Is there a number on the letter to speak to someone to find out more?
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    I can see why you'd feel deflated @pollyanna1052, you must be annoyed! I really hope you get seen, please let us know how you get on.
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    I`ve rung them this morning and it`s been passed to someone else. I`m waiting for a new appointment.
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @pollyanna1052, I really hope you don't have to wait long for this appointment! 
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    thanks x
  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing
    Hello @pollyanna1052   Thank you for sharing. Sorry to hear this. I can imagine right now feeling emotive, angry and upset.

    We are here as a community to be supportive.  

    You mentioned your condition as undiagnosed.  Sorry to hear that and it must be frustrating and also  annoying if no one can help and give you some answers.

    I have an list of organisations and charities as all community champions do.

    Would this help there is a organisation called Undiagnosed UK.

    https://www.undiagnosed.org.uk.

    If that helps with any support or guidance. 

    Always here anytime to listen and be a friend.

    Wish you well.

    Please keep in touch.

    Take care.

    @thespiceman
  • EricaMcD
    EricaMcD Online Community Member Posts: 32 Contributor
    Hi @pollyanna1052  

    I am sorry to hear what you are going through.

    I know some trusts are setting up multiple disciplinary teams to see people with nuerological conditions.  I would ask or write to them asking them who they suggest you see instead and why they think seeing someone else is better for you in your case.

    Let us know how you get on when the appointment finally comes through. 


  • Ails
    Ails Online Community Member Posts: 2,237 Championing
    Sorry to hear this @pollyanna1052.  I can understand your frustrations with this and hope your new appointment comes through soon.  All the best.  :smile: x
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    thespiceman said:
    Hello @pollyanna1052   Thank you for sharing. Sorry to hear this. I can imagine right now feeling emotive, angry and upset.

    We are here as a community to be supportive.  

    You mentioned your condition as undiagnosed.  Sorry to hear that and it must be frustrating and also  annoying if no one can help and give you some answers.

    I have an list of organisations and charities as all community champions do.

    Would this help there is a organisation called Undiagnosed UK.

    https://www.undiagnosed.org.uk.

    If that helps with any support or guidance. 

    Always here anytime to listen and be a friend.

    Wish you well.

    Please keep in touch.

    Take care.

    @thespiceman
    Thankyou Spiceman...you are always so kind and thoughtful. I have been advised to ring the hospital on Tuesday and will be given an appointment.
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Been advised to ring the hospital on Tuesday and will be given a new appointment.
    Thanks everyone for your kind comments xx
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    thespiceman said:
    Hello @pollyanna1052   Thank you for sharing. Sorry to hear this. I can imagine right now feeling emotive, angry and upset.

    We are here as a community to be supportive.  

    You mentioned your condition as undiagnosed.  Sorry to hear that and it must be frustrating and also  annoying if no one can help and give you some answers.

    I have an list of organisations and charities as all community champions do.

    Would this help there is a organisation called Undiagnosed UK.

    https://www.undiagnosed.org.uk.

    If that helps with any support or guidance. 

    Always here anytime to listen and be a friend.

    Wish you well.

    Please keep in touch.

    Take care.

    @thespiceman
    Hi again, I clicked on the link you gave me and SWAN came up. It is a charity to do with children`s undiagnosed conditions. I imagine there will be something similar for adults. Thankyou x
  • thespiceman
    thespiceman Online Community Member Posts: 6,283 Championing
    Hello @pollyanna1052   Thank you for kind words. Sorry about that.  The link I gave you.

    I did not know that it was a children's charity.  Should have double checked for you.

    I know must something for adults.  Some where.

    I have myself a genetic condition.  If you do not mind me sharing.  Only found out around twenty years ago what it is.

    I did contact a charity think it might have been Genetic UK.

    Long time ago.

    Wish you well for your next appointment. Hope you get a positive outcome.

    Please take care.

    @thespiceman




  • April2018mom
    April2018mom Posts: 2,863 Championing
    Hello @pollyanna1052. Is there a contact number or not on the letter? I think you need to request another opinion on your condition. Ask to see another specialist in the team. If there is a contact number, ring in the morning to see if they can help you. 
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Yeh, I will ring tomorrow for a new appointment
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @pollyanna1052, were you able to get another appointment?
  • pollyanna1052
    pollyanna1052 Online Community Member Posts: 2,015 Championing
    Yes, got a call today...it`s 19th November. I am being taken by my sis and bro-in-law. The appointment is at  11am so I`ll have to be up and ready by 9.30 to set off to Liverpool. It`ll take about an hour and a quarter to get here and find where I need to be.

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