Campaign for better disabled medical care

durhamjaide2001

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

Can Scope please get involved and advise?

Alex_Alumni

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

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

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

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

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

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

I hope that you and your wife manage to work through this disagreement @wibbles  

SueHeath

Bless that's a difficult one @Wibbles as i know the appointments are like gold dust at the moment x

Wibbles

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

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

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

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

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

Hopefully this consultant will have a better route than surgery for you 🤞

durhamjaide2001

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

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

Also that I am content with my urinary symptoms!
What are they claiming with this comment? 

Wibbles

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" ?