The life of a PID pacient in England

[anamaria]

Hi all,
I am Ana, 38 years old, two children, I am from Eastern Europe, I have CVID since 2008, (IVIG every four week since than). I am very glad to find you,  I used to read the ..old PIA forum and I was very disappointed when it disappeared.
I have a .....big question...for you. A while ago we decided to move in Germany, we are still, but few days ago, my husband received an offer to work in London so...we were thinking to change direction (!!) and move there with him, I would work too. But I would have some questions for you....

How does the  National Health Sistem support a PID pacient? and..
What is the life of a PID pacient in England? Do they have easily acces to treatment, specialists, are they beeing put on very long waiting lists in order to get to a specialist if needed, are they able to choose or change the hospital, doctor, if problems would appear, and so on....

All these might seem to you ....crazy or stupid questions but I need to know all these before making any decision. I would really appreciate your opinions!
Thank you so much!
I send you a lot of health and sunny days!

[s162216]

Jun 15, 2014 19:11:30 GMT anamaria said:

Hi all,
I am Ana, 38 years old, two children, I am from Eastern Europe, I have CVID since 2008, (IVIG every four week since than). I am very glad to find you,  I used to read the ..old PIA forum and I was very disappointed when it disappeared.
I have a .....big question...for you. A while ago we decided to move in Germany, we are still, but few days ago, my husband received an offer to work in London so...we were thinking to change direction (!!) and move there with him, I would work too. But I would have some questions for you....

How does the  National Health Sistem support a PID pacient? and..
What is the life of a PID pacient in England? Do they have easily acces to treatment, specialists, are they beeing put on very long waiting lists in order to get to a specialist if needed, are they able to choose or change the hospital, doctor, if problems would appear, and so on....

All these might seem to you ....crazy or stupid questions but I need to know all these before making any decision. I would really appreciate your opinions!
Thank you so much!
I send you a lot of health and sunny days!

Hi Ana,

Welcome to the forum, I actually started this forum because the PiA one was closing (the PiA at the end of 2012 closed due to no longer being able to financially support itself), and am happy that you've found us. Quite a few people who were on the PiA forum are members here as well so you might hear from some old "friends".

In the UK the provision for PID patients by the NHS is generally very good. Waiting times to see a clinical immunologist are generally not too long, and you able to choose which hospital you want to go to. Immunologists will put patients on immunoglobulin infusions if they are clinically necessary - the IgG is centrally funded by the government so there are no financial/political reasons for patients to be denied immunoglobulin if the doctor feels it is needed (we also get priority in case of a shortage). There are usually infusion clinics within a reasonable distance of most large towns/cities, and home therapy is also available from most of the hospitals after the patient has the necessary training. There are ~5 hospitals with a clinical immunology department in London so if you move there you definitely won't have a problem accessing treatment.

I've always found myself to be well supported by my immunology teams, and they will do their very best to help if there are any problems etc. 

I'm sure some others who might remember you from the old forum like john, mali42 etc will chime in soon as well, but if you have any other questions then we're all happy to help!

Thanks,

Sam (Admin)

[john]

hi Ana,
I was the webmaster for the PiA forum until I left in 2009, and I think I do remember you as we had very few Eastern European forum members!
I hope you are staying well with your IVIg treatment, and moving to London should be a great experience for you.
You should have no problems with registering with an Immunology team here in London....I have been at the Barts/Royal London clinic for many years and now do home therapy usiing subcutaneous infusions, which may well suit you specially if you want to work and don't want to take time off work to attend clinic.
Let us know how your move is going, and ask any questions you think we can answer.
John ( Admin)

[anamaria]

Dear John and dear Sam,
I thank you a lot for your answers! You just don't know what it means to me...a great relieve! I will sure contact you when I am about to arrive there to ask you more...advises. Now, I understood that the national insurance pays back only after one year of contribution. I don't know if this is just a false information or not. This would mean I would be left outside for one year and this seems just hard to believe. Maybe you know more about this.

Congratulation for the new forum! It means a lot for all of us!
Ana

[s162216]

Hi Ana,

In the UK National Insurance payments don't pay for the NHS, which is funded through ordinary taxes - National Insurance is paid in order to access certain state benefits against unemployment, being unable to work when ill etc. Any person permanently living in the UK can access NHS treatment from the start, it doesn't matter if they've paid any taxes or accumulated any national insurance credits (as their not used for healthcare); I am assuming that you're an EU citizen though?.

See here for more details: www.nhs.uk/chq/Pages/1087.aspx?CategoryID=68&SubCategoryID=162

Hope you find this helpful,

Sam

[anamaria]

Hi Sam,
Yes, I am EU citizen. Thank you for the link, very useful!

[s162216]

Jun 16, 2014 16:28:37 GMT anamaria said:

Hi Sam,
Yes, I am EU citizen. Thank you for the link, very useful!

If you've got any other questions feel free to ask, we'll try to help!

Sam

[anamaria]

I will, thank you!