[DnA]

Hi All

I'm having a nightmare getting treatment for my lupus, primarily because none of the docs in my local hospitals know anything about lupus. I've developed problems with my bladder but my urine is never tested! I've got an appointment today and know that all I will get will be 'we'll leave it another x months before we see you again'.

I'm worried because in the last 6 months I've deteriorated rapidly and find that if I do something one day, I'm physically wiped out for the next few days and I'm scared to do things.

I want to get treatment in London, preferably at the Royal Free because it's close and they were brilliant when they treated my late husband for cancer - the radiologist at our local hospital couldn't interpret his scan and missed the cancer My local PCT will only allow referrals to local hospitals, unless it's a tertiary referral. I've got a flat in London and am so deperate that I'm considering using this as my address. Has anyone else used another address to get treatment?

Any ideas?

Thanks
Sammy

 

[Katharine]

Hi sammy,

I'm afraid I'm of no use when it comes to how the English health system works but just wanted to say that I feel for you and it is very clearly time you did something about this terrible lack of care.

I hope someone has a good suggestion. I am just wondering if going "once" to see someone at the London lupius centre privately might not be a good option. I think after one private visit you can usually get referred back onto the NHS for follow up - at least that's what seems to happen quite a lot around here.

Katharine

 

[DnA]

Thanks for the reply Katharine.

I read one of your replies to someone else and I too have decided that this is the year I'm going to get some answers - so god help the medical profession!

Sammy

 

[greenhaggis]

I want to get treatment in London, preferably at the Royal Free because it's close and they were brilliant when they treated my late husband for cancer - the radiologist at our local hospital couldn't interpret his scan and missed the cancer My local PCT will only allow referrals to local hospitals, unless it's a tertiary referral. I've got a flat in London and am so deperate that I'm considering using this as my address. Has anyone else used another address to get treatment?

Any ideas?

Thanks
Sammy

Sam, St Thomas Lupus clinc is available through a tertiary referral system!

Lesley

 

[DnA]

Leslie thanks for the reply.

My PCT has said only referrals from hospital consultants are acceptable! Mine flatly refuse to do this. My dermatologist won't even refer me to a local rheumatologist. Hence the losing battle that I seem to be fighting...

Sammy

 

[greenhaggis]

I have had Nurse Angie/St Thoms tell me that this is rubbish that they do accept GP referrals - if you go on line you can check this out and give your surgery proof of what they will accept!

Even though the PCT has said this to you I suggest you write them a letter of complaint about the treatment you are receiving with your current specialist outlining all the problems and asking them to come up with the solution to caring for your health and finding someone that has knowledge of treating someone with Lupus.
I once had a bad Rhuemi at my local hospital before i was even diagn osed that I had to complain about, although I did not get a referral to St Thoms the PCT agreed to sanction another specialist to investigate my health issues (was then diangosed on symptoms and bloods).

Perhaps they will then come up with someone else at your local hospital (even an Immunologist), or give you a referral to St Thoms.

Take care

 

[Clare.T]

Hello Sammy
I have read over your previous posts and I am sorry to hear about your husband's death. My sincere condolences.
As to using a London address to get a referral, I wonder how this would work but I have never been in such a situation. I thought we can only get a referral from a local GP so you would have to be registered with a GP in your London locality. But we all need a GP nearby, and I don't know how getting GP treatment where you usually live would be affected by being registered with a GP in London.
I see you have been diagnosed for many years but apart from badly affected skin I can't see what the basis for your diagnosis was. But anyway, people with only or mainly skin lupus should have a regular check up- bloods and urine- even when their lupus is stable or even in remission.

I go to St Thomas because I am in a London Borough but I have no special treatment needs and see them once year only, more like every 14/15 months.

I get CBC ANA and urine tests every three months ordered by my GP primarily to check possible side effects of medications. I would have no problem getting him to do them any time if I had any concerns.
The ideal is to have local specialists who will look after you if need be in an emergency as clearly having your sole specialist treatment provider at some distance isn't all that practical. We do have some members in that situation though who might give you some imput.

But I would have thought you can make out a very good case for referral to London on the grounds that you cannot access the necessary specialist care locally and the standard of local lupus care is inadequate. You might have to make a stink of course.

It seems that you have a number of serious health issues and need to see a variety of specialists. If none of the local specialist services are adequate I don't know what you can do to get a better overall standard of care. Certainly you need specialists who are willing to liaise with your lupus rheumatologist when necessary.
I'm sorry I don't have any brilliant ideas but maybe some points to think about and some hope for getting an NHS referral to London. I hope your studies are going well.

Let us know how you get on please
Bye for now

Clare

 

[onetay]

Sammy,
I too have no idea about the England health care and how it works, however did want to say You need to be proactive with your care. I am not saying that you aren't. Have you tried telling the doctor(s) that you see that you feel this is a little out of their field and would like the referral to the other hospital that you need? I am not sure how the address thing works either, but am also wondering what you do if you are at your flat and need medical care while you are there?

I am so sorry about your problem with your health care, but if it makes you feel any better we in the usa have similar problems with insurance companies, doctors, and lack of either that know anything about lupus. I thought I would put a few questions out there in hopes it might also help you to find what you need. I hope that 2009 is the year full of answers for you.
Best of Luck to you and keep us posted please.
Tammy

 

[DnA]

Thanks guys for all the advice. I'm loading my ammunition ready for seeing my GP on monday.

I was furious when I saw my pain specialist yesterday - my GP was supposed to have written to him asking him to see me urgently because of new problems. Guess what, no letter! My specialist wasn't happy either as with the complications I've been having I should have been seen 2 months ago, and he says I'm just too young to be in the state I'm in!

So, I'm going to try to use this as a lever to get a referral to London!

Please think of me on Monday...

Thanks again

Sammy

 

[LolaLola]

Dear Sammy,
Wishing you all the best in getting to London. I am one of those who just goes to London, mainly St. Thomas' but I top up with a private appt. if really urgent.
My local Rheumy is useless with Lupus. It would be good to see someone closer to home, but I am very happy with London and they and my GP both allow me some freedom to adjust my dosages.
x Lola

 

[onetay]

Sammy,
I am not sure about in England but in the usa the doctor can make a note on your chart that says if this patient calls in they should get the very earliest appointment and if cancalations happen they are first called. It happened with my obgyn. He also put a note that I would only see him because of the lupus. If you gp in that upset their are steps they can take to help you get in sooner themselves, even if that means the nurse has to make sure you are seen asap.
Tammy