Dialysis in England

[dizzypt]

If I can help anyone coming over to England with information about diaysis please ask me. I would be happy to help with any question, not medical please, that I know the answers to.

Cjrissie

[Hanify]

Are you allowed to look at home haemo where you are Chrissie?

[Yvonne]

Hi we live in the UK and John was under the QA in Cosham near Portsmouth and we could read his figures on the Satalite system.
We have just moved from West Sussex to Bracknell in Berkshire and have to somehow obtain John's hospital notes. Also what happens about the appointment he had at the QA. This was the only thing that has been worring me about the move.  We are booked into the new Dr. and are hoping he will arange everything.

[billybags]

We also live in England and we are on a site called Renal Patient View. when my husband has his monthly bloods taken we can go on site the next day and see his bloods. We can then say " whew your potassium has gone up or your BP is low, it helps to know what is going on.

[kristina]

If I can help anyone coming over to England with information about diaysis please ask me. I would be happy to help with any question, not medical please, that I know the answers to.

Cjrissie

Thank you for your kind offer, Crissie.
In your introduction you say you live in Wales.
I know they have re-adjusted their NHS
& it has become again a good health service.
Unfortunately no such luck for me here in London, I have no NHS-doctor to go to.
I receive no NHS-medical-care for my Lupus/MCTD-flare-up which destroys my kidneys.
I am without a NHS-GP to go to & without a NHS-nephrologist/rheumatologist.
I am entitled to NHS-medical-care but instead I have received by post a letter (dated 11th April 2005)
stating there is no specialist to be found in the UK to treat my Lupus/SLE/MCTD.
I cannot find a solicitor/lawyer willing to assist me either.
I cannot afford it but I am forced to pay for all my regular blood-tests (Creatinine and Urea).
I have applied to all possible organizations/charities/PCT/Healthcare Commission/
NHS-Authorites/Ombudsman/MP's/ in England. No luck, no answer, no help, no assistance.
If by any chance you know of a bona fide organization/charity etc.,
where I could apply for assistance to receive medical care I would be very grateful.
My kidneys only function ~10% now.

Thanks, Kristina.

[billybags]

kristina,If you have been in this country for nearly 5 years, why are you not receiving NHS treatment?

[kristina]

billibags, I mentioned in another post that I have not seen any NHS-GP for over 6 years.
I received a medical letter (dated 11th April 2005),
by the Medical Chair of my PCT (PCT=NHS-Health Authority)
stating there is no specialist in the UK
to treat my Lupus/SLE/MCTD.

Why have I not seen a NHS-GP for over 6 years?

Because the NHS-GP with whom I am registered with
told me over 6 years ago that he cannot assist me medically
but no other NHS-GP allows me to register with them in my district,
& as I have mentioned above, my PCT is not helpful either.

I have tried to see another NHS-GP in a medical emergency & I was told that:
"with a rare disease like yours you are anyone's game"
& I did not receive any NHS-medical care there either.

If by any chance you know of a bona fide organization/charity etc.,
where I could apply to receive medical assistance to receive medical care
I would be very grateful. My kidneys only function ~10% now
and I have no NHS-doctor to go to.

Thanks, Kristina.

 

[dizzypt]

Are you allowed to look at home haemo where you are Chrissie?

Yes if the specialist agrees.  You just need to have some adaptions done to yiur property and have training to use the machine.  Iam workiung on it!

[Maxridex]

Kristina, I'm sorry to hear that. It must have been some hard times for you.

Best wishes from me.

[dizzypt]

billibags, I mentioned in another post that I have not seen any NHS-GP for over 6 years.
I received a medical letter (dated 11th April 2005),
by the Medical Chair of my PCT (PCT=NHS-Health Authority)
stating there is no specialist in the UK
to treat my Lupus/SLE/MCTD.

Why have I not seen a NHS-GP for over 6 years?

Because the NHS-GP with whom I am registered with
told me over 6 years ago that he cannot assist me medically
but no other NHS-GP allows me to register with them in my district,
& as I have mentioned above, my PCT is not helpful either.

I have tried to see another NHS-GP in a medical emergency & I was told that:
"with a rare disease like yours you are anyone's game"
& I did not receive any NHS-medical care there either.

If by any chance you know of a bona fide organization/charity etc.,
where I could apply to receive medical assistance to receive medical care
I would be very grateful. My kidneys only function ~10% now
and I have no NHS-doctor to go to.

Thanks, Kristina.

I think this is absolutely terrible!  You are entitled to treatment - it is your right and I think you should cause a stink with your doctor until you get something done!  I know that sounds like I am being millitant, but yoiu can do it 'nicely'.  There is no need for shouting but you cn be firm and unyielding about treatment until you get something done.

Having a rare disease should not exclude you from basic medical treatment.  Please try again.  You are entitled to change your GP, all you do is tell one practise you are moving to another and visa vera.

Good luck

[kristina]

Thank you for your kind replies.
I have tried to register with other NHS-GP's in my district but they gave me no chance.
I have spoken to other NHS patients who - like myself - suffer from a rare disease.
They also receive no NHS-medical care. It is not personal.
Over the past 30 years I never experienced that the NHS as a health-care-system really exists.