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Discussion Starter #1
Hi Ladies,

Since whats ghappened regarding my rheumy appt and the utter chaos at my local rheumatology department.
I have been giving some consideration to attempting to go to another hospital.
I do have a hopital about 60 miles form me that takes national referals its called The Bath Royal National hospitsl for rheumatic diseases. Looking at their website it certainly does not give the kind of inspiration that you get when looking at St Thomas.
However it is closer.
My hubbies opinion is well if you just need to get referred from your gp which i am sure my gp will do, then we should go to London. As they are so specialist.
However there is the question of do we have to pay? If so how much, Would they except me from so far away on the grounds that i am currnetly unable to be seen here as my hospeital has no appt available even for ill patients who are seen by their gp as urgent cases?

Just wahted some input from those who know how things work.

I ahve considered phoning both hospitals but just wanted to talk to you guys who have personal experience first.

Many Thanks

Cassie
 

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Cassie,

I know your plight!

I had extrememly rubbbish treatment from one specialist but found my GP was unable to refer me whilst on his books!

I eventually had to complain to PCT - who said they would issue a referal, but to an Immonologist - so far he has been brilliant!

The fact still remained GPs were only allowed to do one referal to one Rhuemi! They did say that my bad Rhumei could do a referral as things were different for them - fat chance of that happening! Before I even saw my Immunologist y Rheumi discharge me as in his opinion all my sysmtoms were complete 'Red Herrings' (that was his favourite quote)!

I too was going to go private before I got confirmation from PCT that I could still see someone else!

I'm sure that a private consultation is not too much money compared to peace of mind - if you have to go that course then do it - once/if you get a diagnoses you can go back to NHS treatment!

Take care,

Love Lesley
xxx
 

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It really does depend on your PCT. St Thomas's is defined as a tertiary referral centre, which means that theoretically you can be referred there at no cost to yourself from any other NHS area. In practice, most PCTs seem to make you exhaust all local possibilities first and then have to fight for out of area referrals. I am in the same position, with not only no lupus specialist available here, but no lupus clinics or specialists in NHS grampian (which is where our small NHS refers to for difficult cases). The only thing I could suggest would be go back to your bad rheumy, and just say straight up "you seem to be having some difficulty trying to figure out what is going on with me - can you therefore please refer me to St Thomas's or at the very least to a specialist lupus clinic as my GP is unable to do this?"

Then if that fails, get onto your local health services advocacy people (PALS in england, but it may be someone at the CAB in Scotland) and get them to put in a complaint and request for appropriate referral.
 

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PCT in the area I live in will not refer to Tertiary hospitals as it still costs them more than using a local hospital!

Hospital are their specialists seem to find it easier to re-refer to Tertiary as long as the specialist your under is okay with the suggestion! Perhaps your GP can ask your Rhuemi to do this your you if he himself can refer you to a 2nd Rhuemi!

There is a booklet available about the referal system that is very helpful for patients and GP's - ot sure what its called - its on line somewhere too! Perhaps if you look up your local PCT's website it will be listed!

Lesley
 

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Discussion Starter #5
Thanks ladies,
hi cemc, the problem is not that they are having problems sorting out whats wrong with me. I have had positive blood results which indidcate either SLE or MCTD, the rheumy said this herself but said ahe could not specify which untill she had seen me.The problem is that i am still really poorly and have not had follow up since my firts appt 9 weeks ago. I had an appt for the 12th June but got a letter yesterday saying it was cancelled with no other date to go back. This is due to internal problems within the department. They only have 2 rheumatologist at the moment and there has been some internal politics regarding re appointing a new doc. The initial rheumy i saw was locum and he's left now.
My gp spoke to the rheumy at the hospital last week as i was really unwell and she agreed i should be seen asap and told gp to start me on plaquenil, then i get this letter through.
GP is following this up as he has requested that i been seen urgently on 3 occaisions now.

Cassie.
 

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Hi Cassie,

Are you able to fund a private visit to 'The London Lupus Centre' at London Bridge? If so, I would make an appointment with them. That way you will get a definate diagnosis and get started on the appropriate treatment immediately. Once you have done this then you could transfer back to NHS care.

I phoned St Thomas' and was told there was approx. 3 month waiting list for new patients (St Thomas' only deal with NHS care). I phoned The London Lupus Centre on the friday and arranged my appointment for 4 days later on the Tuesday. I was seen, diagnosed and commenced treatment on that Tuesday. The doctor that I saw was more than happy to take me on at his NHS hospital in Paddington. I know that it wont be practical for you to travel to London for all your treatment but might be worth the travel once or twice a year and see a local rheumy in between visits.

Madwife
 

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Hello Cassie
If you opt for private treatment you have to go the London Lupus Centre private facility at the London Bridge Hospital. Many of St Thomas Louise Coote Lupus Unit doctors work there too and the others are all very well qualified. I presume that famous Dr Hughes who used to head the St Thomas' unit handpicks his team at the London Lupus Centre
Referrals aren't required for the London Lupus Centre as far as I know.

I should have thought that you could make a very good case for being referred out of trust considering it's not an exaggeration to talk about no adequate care being available within the PCT. It's a question of convincing the PCT that there is a case and your GP and MP can be instrumental.

Of greater practical concern IMO is how you can best be helped right now and I'll respond to your other post.

Many hugs
Clare
 

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I forgot to mention an important consideration. Getting diagnosed properly is clearly essential but it is not an end in itself - it's the start of a whole new phase that lasts the rest of your life. Hopefully things will improve enough so that you rarely need specialist help.
St Thomas' is stretched to the maximum and it is notoriously difficult to get in touch with them if need be although they do their best. Even GPs have a hard time. The impracticalities of being reliant on specialist care at a great distance are obvious. It's hard enough even when there isn't a large family to be organised and of course there are the financial considerations of travelling so far

The closer specialist care is to hand the better. A number of people go to St Thomas' once a year but have they have local specialists for emergencies and ongoing treatments. This is the ideal.

You do have a good caring GP which is an essential element to getting the best care although he doesn't seem especially well informed even for a GP. A concerned GP can be educated though. To all intents and purposes your local consultant services are nil for the foreseeable future.
I am pretty sure I have heard very good things about Bath but I can't remember who said that. You could ask on the Find a Doctor section or try the search function using 'advanced' model
I think I would get to the London Lupus Centre for further immediate advice and treatment suggestions if I possibly could but work at getting an urgent NHS referral to Bath (or maybe Bristol?).

All the best

Clare
 

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If you do go to Bath, my Son used to see a Paed. Rheumy from there. He was excellent.

My Daughter Immi and I both wish you all the best. Chin Up, whatever you choose to do.
Clare is quite right Tommies are hard to contact. My Daughter sees a local Rheumy as well. (He is okay in a real emergency,but despite the difficulties I just stick with Tommies and top it up privately once in a blue moon.
x Lola
 

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Discussion Starter #11
Hi Ladies,
Thanks there are the practical considertions of travelling thats the biggest complication.
I know aswell that just because the diagnosis is confirmed it does not mean that the disease will suddenly improve.
I just think that it is unexceptable to have tests that then indicate a complex, chronic disease and then not to be followed up.
It would be a bit like having positive test results for diabetes and then the specialist not calling you back to confirm the illness and talk to you about appropriate medications, risk factors and lifestyle changes and your gp being left to try to prescribe what he felt was best with no expertise to rely on.
My gp has previously prescribed a 10 day course pf prenisolone about 2 mth back but it did not seem to have much effect. I think now looking back it was because this coincided with the illness becoming progressively worse and perhaps the dose was not enough to counter act this, i was on 20mg per day.
I have sinve been put on acoxia 90mg per day, an NSAID which my gp has said to stay on until i am seen again by the specialst.
This is not a good situation to be in. I have done application for DLA hoping that i may be able to get some help in if i am awarded it, which is another challenge in its self!!
Unfortunately i do i not have any family close by to help and my hubbies family are in Portugal so i have to cope with the children alone as my hubby works fulltime, which is hard.

Not much else to say really.

I am just stuck here at the moment.

Cassie
 

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Just one more thought!

Have you approached your Health Visitor - they can recommend you for the Homestart scheme!

Lesley
 

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Discussion Starter #13
Hi Lesley,
I did actually see someone from homestart 3 years ago when i was suffering chronic depression and had,had a couple l really nasty infections. that was one of the times i didn't leave the house for about 4 mths.
But the thing is with me is that i am very proud, too proud sometimes and i also find my self always having to make myself appear better for the sake of others. Thats just natural to me as a mum but it hapened with the homestart lady too!
She was so nice that i thought i really don't want her having to come round and see me really depressed and not together,,i didn't want anyone else to see me really vulnerable so i used to make a real effort when she was coming round. Atleast it did help pull me out of my depression!!!
The other thing is i 've have so much to cope with, with the children at the moment that instead of helping it might be another burden on me.
Thats how messed up my head is and that is how much pride i have, i have always been so proud of the fact that i have stood on my own 2 feet as a mum to 5 kids and not relied on other people and now its really hard for me to do that atall.
I have asked neighbours for help with taking my children to school as i don't drive and have not been able to do that and even feel really bad about that!
I just wish that i had enough money to employ a cleaner everyday so that i had time to rest and recover and just be there for the kids. Oh what bliss that would be. :hehe:
I haven't been able to keep on top of the housework obviously having 7 people to clean up after and that makes me feel bad aswell. Like i am inadequate on top of feeling ill.

Oh dear what a conundrum!!

Cassie
 

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Cassie,

I can relate to how you feel I too suffer with being to proud I even hate asking the Mums of my kids friends to help with school runs (one even lives just opposite us).

Re. cleaner - I've used cleaners (not the proffessional ones as far to expensive), but local ladies. It was brilliant to begin with, they always did a super job, but then things seemed to slacken! I also used to find that I had to tidy a certain amount prior to them coming as kids always leave mess everywhere! I find it much less stressful to live with more mess than to clean before a cleaner! Plus if I was feeling really unwell I was not up to having a cleaner in the house either!

I could only afford a cleaner 2 hours a week but in reality need one 2 hours every day long term.

I hope your feeling not to bad today! I'm off tomorrow for a gastroscopy and starting to get nervous!

Take care,

Love Lesley
 
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