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been left to it

827 Views 23 Replies 16 Participants Last post by  hattycat
Hi all, just when I was starting to come to terms with all of this got my new appt for the London Lupus Unit. They have scheduled to see me end of July 2010 :eek: I thought it was 2009 when it arrived and was ok with a few months to see how the meds were doing etc. if they had then left me for over a year I wouldn't feel so bad. I am completely heart broken, don't know how I will cope. I have just been prescribed the plaq and my GP knows nothing about it, don't even think he knew what it was when I mentioned it on the phone....He is fed up with me as it is

They never spoke to me about my illness at the Lupus unit. I didn't realise because I was coming online and this site has helped me so much. I had so many things to ask the specialist. I feel completely robbed. After struggling for al these years to get there only be doled out one drug and left again for 18 months is unbelievable :sad:
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My disappointment in your extremely late appointment goes deep. As a former health care worker, I understand that people are living longer due to some very smart minds and inquisitive brains that have found cures, treatments and medications. I realize there was a babyboom several years ago and I am one of those late babyboomers. I know getting into medical school be it nursing or physician is difficult as there are not enough educators to teach the willing students in waiting. HOWEVER, I wouldn't hink that would mean that someone with health issues and major ones at that would have to wait so long. I am really at a loss of words.

Now, I do not know about your form of health care other than it is like a national health care, or at least I think. I know that President Obama and prior to him, First Lady Hillary Rodham Clinton wanted to create a national health care system. Now, my personal opinion is that the less involvement of the government in my business the better, but I could be wrong. I understand that there basically isn't any cost, etc but I am concerned that I would have to give up some of that wonderful freedom granted to me in the First Amendment..........basically, my right to chose pretty much whatever. I would however like to see a cap on medications as well as on physician appointments, procedures, etc. ANYWAY, if you would take a moment if you would and explain it to me. I would appreciate it.

Again, I understand and feel your frustration. I also hereby promise to no longer complain when I have to wait a couple of days to get into see one of my docs.

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Hi Pollianna

As you have only just been put on Plaquenil, it would be normal for you to be called back in some 4 months (ie July 2009) to check how you are doing on the drug and to adjust the dosage if necessary. For this reason, you may want to check with the hospital whether perhaps there is a typo in your letter!

Take care

Hello Polliannna

This is the desperate state of affairs at St Thomas Lupus Unit and I am really sorry that somehow this situation wasn't made clear to you. I had to call to find out when my appointment this year was which had been given to me in May last year. I realised that the day wasn't very convenient for me but was told that if I couldn't keep it the next available would be July 2010, another 13 months.

About a year's wait between check up appointments is standard but it seems to be getting even longer. It isn't only St Thomas though: stories of cancelled appointments and long waits between are commonplace throughout the country. In some areas there are no specialists available.

We should always make it clear that going to London either privately or on the NHS to get diagnosed is one thing but the next step is getting adequate follow up locally in case you need expert opinion meanwhile if you get worse or have medication problems

The lupus unit is grossly underfunded. Many of the salaries are paid for from funds raised by the St Thomas Lupus Trust. I'd say underfunding is commonplace throughout the NHS and especially bad for chronic diseases that people are most unlikely to die from but suffer awfully. All we can do is be active in raising awareness at every opportunity writing to our MP's and signing any petitions such as Martine Mockford's current one.

I dont know that doctors ever spend much time explaining the disease. If you say what sort of questions you have I should think we can answer them for you.

Many Hugs
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If this appt issued for 2010 is a 2nd appt something may have been done wrong at time of a person inputting your details.

When I went to St Thoms for my firsts appointment and given new meds my foolow-up was 4 weeks later! Since that 2nd appointment I will now have local care and SOS Emergency for St Thoms as and when required.

Give your specialists secretary (St Thoms) a phone call today querying this appointment date (dont bother calling the appointments department).

Good luck and let us know how you get on!
Hi Polliana

Im sorry you are so distressed about this. The only words of comfort are that it isnt personal - its caused by the strain St. Thomas's is under at the moment.

I think this would have been your third appointment, is that right? You had one in January and then in February?

I think the most important thing to do now is to get a referral to your local hospital via your GP. There should be no issue with this because you have a diagnosis and are on medication. Your local hospital can continue to review you and you can still keep your appointment in St. Thomas next year.

Most GP's havent a clue about things like Lupus and while its important to have a good relationship with them, its more important that you have a local specialist contact if things go wrong or you need to be reviewed.

Best of luck. Remember you dont have anything to 'prove' to your GP at this stage. That part is already done. You just need him to do his job and get you a local referral.

Take care
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Thanks everyone. I know it's not personal but it was a terrible shock to not know and then get a letter for 18months down the line......I have no idea of the financial situation of the London Lupus Unit and why should I as it's supposed to be the NHS...

I will ask my GP to send me to a Rheumy closer to home to keep an eye on me if I need any specialist help. I came to the conclusion last night that I got this far on my own I can learn some more about the illness and tell my GP to prescribe now cause if the Plaq doesn't work i need to move on to another or I may need to increase the dose. I will ultimately apparently have to decide these things for myself

I called them today and was told that this was standard practice. The lady did apologise that there was no warning. Even the letter to my GP from them said they would see me in due course....

I just feel completely at a loss with the whole thing
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Hi Pollianna :hug:

Sorry you have yet another hurdle to get over. It is true though that you do absolutely need a specialist closer to home and maybe even a change of GP if yours isn't going to start listening.

You have learnt a huge deal over the last few months. You have got through those huge, difficult steps and now you will be able to take on the rest. It isn't easy and I think many people have been through similar and it has often taken them time to find and feel comfortabe with their doc team but you'll get there.

WOW, this is unbelievable and hard for me to wrap my mind around. 18 months to wait for a appointment is un heard of in the USA. This is just mind boggeling to me.

I am sorry that you have to wait this long to be seen. I agree that you need to find a doctor closer to your home so that you can get treated sooner. So much can happen in 18 months and you need treatment now. Then you deal with GP doctors who know nothing about Lupus which just adds to the frustration level.

I wish I had a lot of money. If I did I would put the folks on a plane and fly them across the pond to be seen here by some wonderful doctors......then no one would have to wait while being sick at the same time.:(:(:(

There are pros and cons to everything in life but the more I read here the more I think I prefer the US health care system. I will NEVER COMPLAIN again about having to wait to see a doctor. I really feel badly that your sick and cant get immediate help.

Try and locate a doctor near you who is knowledgeable and can help you. Let us know how you get along moving forward and know that my heart goes out to you.:wink2::wink2::wink2:
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Hi again all,

I think we need to remember the context here. We are talking about a very specialised clinic with very limited means.

One can only compare what is comparable and even then, it is not particularly helpful to know that things are done in a different way elsewhere. Every country/system has its advantages/disadvantages.

Within the English health system when seeing a more local rheumatologist, that wait would not in any way be the norm. People should always have a more local specialist. It would be like comparing your local US rheumy to going to the very top clinic and research centre in the US. I should imagne that the wait there would be pretty hefty and also unlikely to be covered by your insurance.

As readers from the other side of the pond, we too are sometimes shocked by individual situations where people don't have access to the care they need, for example, due to insurance issues or because they simply live too far away/can't get referred to the right person...

I don't think that it is at all useful here to compare health systems. They are not comparable and their comparison doesn't help the individual sufferer in any way.

To me what is very important here is that Pollianna has had access to a top specialist who has been able to help her along on a very difficult diagnosis journey and who will, in conjunction with her local specialist, be keeping an eye on progress in the future, guiding and helping the local doc on the way.

So, huge hugs to Pollianna and spadesful of courage to move on to the next step :)


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Thanks katharine for that. I think you are entirely spot on apart from the fact there is no local specialist in the picture. I have simply been left to it alone...My GP wrote on my sickness certificate for work, "joint pains, under hospital care" It's not so much not being able to get back to London that has shook me. It's the feeling that suddenly I am on my own with this with no warning and a GP who has simply shifted the responsibility for my treatment and care from my shoulders on to the specialist. There's no one to check if the meds are working. They told me there are other drugs I can try if the plaq doesn't work but I will have to wait 18months

I have been alone with this illness and a child for 10yrs with no one recognising what was wrong with me.Just when I started to feel that I had some care I am alone again. I am not blaming the Lupus Unit for the state of the NHS but I am worried..I am greatful for having been able to get there at all but this doesn't mean that I'm not upset with having to wait so long again. 18 months is a long time with no council
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I really do feel for you Pollianna :hug: and can only suggest that you get it through to your GP that a local referral is also necessary. Asking for recommendations here would also help so that you get someone kind who listens - we all need that.

If your GP is unwilling to do that then you need to look at finding another GP. Sometimes that can even be done within the same practice by having a quiet word with the practice secretary or manager and explaining your problem. I know of at least one other person who was in a similar situation to you and did that with great results and she wished she had done it sooner!

Oh, and, you have every right to be worried. 18 months is far too long unless you have particularly well managed disease which is in medicated "remission". That's why you need to address the local issue as soon as you can. Having your back up reports etc will help you not have to start over again. And, IF, for any reason the rheumy didn't like the fact that you had been to London, then you don't want that rheumy. They should work together for your good :)

all the best,
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I am so sorry for your very long wait. Is there some one else you could see in the mean time other than your gp? You might want to keep checking every week just to see if they have an earlier opening. This way they will also remember your name and it will stay fresh in their mind for the possible earlist appointment. In the mean time you might consider seeing a rhuemy or dermy for some help to cope with what is going on with you and to continue getting the meds you need. You also might get a referral for an earlier appointment if you do start seeing a rhuemy or dermy now. I hope that you start feeling well soon.
hi pollianna

i am so sorry that you have this to deal with along with a "loopy life :hehe:" i can only imagine the frustration. the only thing i have to say is take that frustration and fear and channel it into finding a more local doctor (gp/rheumy) to at least have oversite and get you on a good medication regiment until you get back to the lupus clinic.

i send you strength and hugs to get thru this trying time. and don't forget we are all here to help as best we can :kiss:

take care
hugs and kisses :foryou:

I need to second what has been said by Kathrine (not just moderators sticking up for each other!).

When I needed to see the Dermatology specialist at the university of Miami - I was given a 13 month wait. There is only one Dermy specialist at this facility who is very educated in Lupus and the implications of SLE and SCLE.

I waited and it was worth it. Now I dela locally with a Rhumy and Dermy and if they want to make any changes they fax over a note and get a response in a reasonable amount of time.

No matter what the system, extremely specialized treatment can and will cause delays in scheduling as there are only so many hours in a day for them to see us.

Polliana - is it possible to get a better local doctor to work with the lupus unit to get more efficient/immediate care? I think that there are others in the NHS who work this way.

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I dunno what I will do Sam :worried: I guess I have to keep taking the plaq and see how I go. Again I have to say I don't mind not being able to see a top london specialist, that's not the issue. I waited 10 long years, was unable to walk for 3 of them. I was just so shocked to be left out on a flippin limb again.

To be honest I have lost all faith in the medical profession. :worried:

Thank you all for your support

Hey Pollianna,

I'm very sorry that you feel like you've lost all faith in the medical profession... :(

Having to wait for 18 months for your appointment at St. Thomas is certainly not ideal and you most definitely cannot wait for 18 months to be seen by a specialist.

Since you cannot see the specialists at St. Thomas' earlier I have to agree with the others here; I think you need to contact your GP and get a referral to a local rheumatologist who will be able to monitor you more regularly. No one is saying you shouldn't go to St. Thomas when the time comes, but you are in need of regular monitoring by a specialist too and your GP can help you find such a specialist where you live. If your GP doesn't want to refer you to a local rheumatologist, then I think you might need to change GPs...

Hang in there Pollianna and I hope you find a local rheumatologist very soon! :)


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Please accept my apology. I did not mean to offend you in any way.

I am more concerned with you getting help quickly.

I hope you get the treatment you need and deserve as soon as possible.

I will say a prayer for you tonight that this happens soon.

Take care of yourself and good luck moving forward.:wink2:

Please keep us posted.
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Hi Pollianna,

I understand it being a shock since you expected to be treated at St. Thomas. Now that you know the doctor will only be monitoring your case once a year or so you need to take steps to ensure good care during the rest of the year. You need to contact your GP to get a referral to a rheumatologist in the area that has dealt with Lupus.

When going to a new doctor I usually set up a meet and greet appointment. It helps the doctor to get a feel for your case when there are no major problems needing attention. You can go over your medication, lab testing schedule, how often you should be seen, what to do if you think you are flaring and so on.

Using a doctor closer to home you will have regular care and also a specialist for the doctor to consult with if there are any problems in the future.

Take care,
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Thank you everyone, I will try but am not holding out any hope.....

As things stand I have some medication, have seen a rheumy as far as my GP is concerned....He will no doubrt ask me why I need to see someone else at this stage....The problem is with the NHS I think I am not considered to be needing to see anyone else. I'm thinking if I am why didn't the Lupus Unit recommend my GP refer me on to another rheumy?. I can only think it's because my diagnosis is UCTD and not yet full blown lupus or another difinitive diagnosis though I fit almost every single criteria for Srjojens sp? :worried:

I dunno :worried:
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