Hi

Hi everybody.
 My name's Paolo, an italian thalassemic (major) guy 39 years old.
 I found this forum looking for some information about thalassemic centers in UK or Ireland: indeed I'm going (actually I'm looking) to relocate to one of this countries.
 Anyway this forum has tickled my curiosity about thalassemic life, treatment, law (etc. etc.) in others countries.
 I'm still feel quietly fine, anyway I've several typical Thalassemic "ailments": for instance, some years ago I had a Ventricular fibrillation, and since that day I take amiodarone everyday (fortunatly, this event has been the only one in my life).
 I leave a nomal life:  I'm happily married, I pursued a master degree in engineering, and now I work hard every day 8 hours (and more) as engineer: Italian state doesn't give any (decorous) subsidy for Thalassemic.
 Anyway, at the end of the day, I feel really tired: I think that my 8 works hours are like 16 works hour of a "normal" guy.
 The worst thing I've to challenge is italian NHS: I've to intercat with at least 5 different centers... one for my heart, one for transfusion therapy, one for endocrinology... with rally blood shortage. Thalassemic centers are overcrowded, and with rally strict working hours. So is really difficult to balance every day life with therapy and treatment.
 I've to speak with two different hospitals even for my Exjade tablets!
 My dream is to have a single center where to have all care I need! And possibly in one day!

 So that's all...

Hi Medici,

Very glad to meet you. Welcome to Thalpal!

-P.

Welcome!

Hi Paolo,

Where are you located in Italy? In the UK there is one excellent thal center at Whittington Hospital. This is a comprehensive care center. I do not believe there is anything like it in Ireland.
Thalassaemia Care Centre in London

Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)

The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF

Phone Number
02072723070

I will let you know if I learn anything about Italian centers, as I have emailed an old thal friend to see if he is aware of any.

Ciao Paolo,

if you need to find Thalassaemia centres all over the UK, you can find this link interesting:

http://www.sickle-thal.nwlh.nhs.uk/Information/NationalSickleCellThalassaemiaCentres.aspx

You can also be in touch with the UK Thalassaemia Society (UKTS), www.ukts.org,
they have been very helpful with me when I first moved to the UK.

As Andy said, the Whittington hospital has got a very good Thalassaemia Unit.
I used to have transfusions there and I can give you some more details about them
if you need. However, if you are not going to live in north London,
I know there are some other good hospitals around the city.

Where are you originally from, in Italy?

Hi Algol,
 My parents are from Sardinia, but I was born in Rome.
 At present I live in the neighborood of Rome.

 Actually I don't know where I will live in London (and actually I still don't know if I will move to London, even if it seems probable)
 I'd like to have more information (if someone has) about blood availability in London. I mean... in Rome there's a chronic lack of blood... so often my next appointment for    transfusion therapy move forward day after day... till blood is available. I've to call the day before my  appointment just to know if my therapy is confirmed or not. That's obviously make my life really hard to organize (for instance for work sick leave).
 Also, I would know working hours and days of centers: it would be great if I can have my therapy on Saturday or maybe Sunday, or late in the afternoon... I'm worried to ask for too much work leave...

What I am going to write, will sound like I am describing the Heaven.

In 4 years, in the UK, I never experienced shortage of blood.
Very many people donate blood. I have been asked a few times to do it myself
and "embarrassed" I had to say that I cannot.

The Thalassaemia Unit, was open from ~9:30 to 17:00, all the week long (including Saturdays and Sundays).

They had many patients, but you could generally find a spot for your blood test and transfusion (all booked in advance).

At beginning, I was a bit concerned since I was always under the nurse's care (I had doctor appointments every 4-6 months),
but nurses could deal very easily with much of the work (cross-match, transfusions, bookings, prescriptions and much more).
Unfortunately, they were often overloaded with work. This is because also the NHS (the UK health system) is suffering
with founding cuts (as it happens).

You will have to move around London, to get your visits done, because not all the things we need are in the same hospital.
However, at wittington they have the MRI and DXA the farmacy supplying the drugs you need (you'll need to pay for the prescription)

I have only experience about one hospital and things might be different in other parts of the UK, far from London, but I doubt it.

Hi Algol,
 you are right! It seems like heaven!
 Just for cuoriosity, can you descrive a tipical day in wittington?
 Just another question: you wrote you have to pay for prescriprions... have you to pay for medicines too? I mean... should I have to pay for Exjade, or for Eutirox, or amiodaron... or for blood transusion?

 Thanks!
 

 

Hi Paolo,

I guess a typical day there wasn't very different from any other hospital.
You get there, wait for your turn and then leave when you go in for the cross-match.

If you go for transfusion, you'd need to take into account how long it will take, since
they had to shut down by 5pm. Generally, for 3 units of blood they advised you
to stay around 6 hours. The very good thing, which I loved, is that they use a small
cannula for the transfusions, so that you can wander around, eat your lunch, use the toilet
without being afraid of the needle passing through your vein.

Being European citizens, the health care is free. Of course you'll have to pay for the prescription
if you're not exempted from that. It means, you pay around £7.65 for each time you get
medicines such as Exjade, or calcium tablets, etc... that need prescription.
You don't pay for the blood.

I came back to Italy for a while and I like it here (Napoli), since I like my home town
Doctors are good and nurses as well. Unfortunately, as you know the system is slow and too ancient.

It looked much easier in the UK, even when if I had to drive for quite a while in order to reach
the hospital even for just a cross match lasting for only 5 minutes.  However, a thing that I missed
in the UK was the chance to talk to a doctor more frequently (even if I didn't actually need it!).

Nevertheless, we can't have all we want.

Hi,

just to let you know I moved up north to Coventry.
I will go to the hospital in a couple of weeks,
if you need any info about it.

Welcome!