Sticky Blood-Hughes Syndrome Support
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What has happened to our health service ?

I wouldn't mind if i were suffering from a boil on the bum, but like many others on here i have serious health issues.

I am suffering a chronic sjogrens / lupus attack & suspect possible pancreatitis.

I was unable to do anything for a few days due to the pain, nausea & my nervous system being affected. After a couple of days i managed to get myself together enough to get to my Gps.

Excuse the pun but the dappy mare of a Dr totally ignored the fact that i have serious auto immune illness, sjogrens / lupus, hughes syndrome, hypothyroidism together with hypoparathyroidism so i'm rather a complicated case.

The Dr went straight for the easy option & assumed it was my condition of diverticulitis causing my problem.........take in mind i have suffered with this for years & if i dont recognise a bout of the old bowel trouble by now then i never will.

I told her it certainly was nothing to do with the diverticular problem, she then came out with it's a blockage !

I was now sitting in the consulting room complete with the lupus rash over my nose & cheeks feeling very unwell thinking to myself what the hell am i doing here because it was now becoming hard work.

I went on to explain it is not a blockage in my bowel because my bowels are opened every day due to the fact i have to take laxatives.............i shouldn't have told her that because the dappy bat pipped up my bowel had gone into spasm due to taking the laxatives. I have been prescribed laxatives for years & have never had a spasm yet.

My lymph glands have been raised for months, my nervous system is shot & i'm suspecting pancreatitis so now i'm desperately trying to get her to recognise my auto immune issues........It was like flogging a dead horse.

She takes my blood pressure its sky high, she mutters it must be because your very poorly, yes i am i whimper in reply.

At last she agrees to do an amylase blood test, it was hardly the investigation or scan i was hoping for but better than nothing so off i went to make an appointment for the nurse. The nurse was fully booked & i couldn't get an appointment until Monday which was more than a week amylase test should be carried out at the onset of the crises or a couple of days into it !

It is 2016, we have all the information at our fingertips via the net so why is it that our Dr's & consultants do not recognise the importance of getting enlarged lymph nodes checked 'ASP' or the connection between auto immune disease & chronic health issues that very often run along side of them ?

The worry thing is i am awaiting to have a very nasty thing removed from my back

because it could be a cancer, the pain i am suffering in my stomach is on the same side as the nasty thing being removed from my back ! So I think you can all understand my concern although i must admit they did act quick on that one.........or so i thought.

I was seen with in a few days of being sent to the hospital, the wretched thing was examined, prodded, poked & photographed & told it would be removed ASP.

It was the christmas period so i was fitted in for the first of Feb...............the appointment was cancelled two weeks later because the consultant is on vacation, it has been rescheduled for the first of March.............thats some vacation, lucky consultant.

Still feeling very unwell i tried to get another appointment to see the Gp this morning, they only had two doctors in today so i had no chance.

I thought i would bypass the Drs & try getting hold of the specialist nurse at the mineral hospital in Bath, i found the number rang & asked for nurse brown...........

They hadn't heard of nurse brown ! The rudy idiots have put the wrong number on the hospital letter & i'm ringing another hospital that the one i am trying to get hold off will be merging with, politely i ask would you please put me through to the mineral hospital sorry was the reply you will have to ring them direct.

Eventually i got through to an answerphone to find nurse brown has moved on & another nurse has taken her place but there was no option to leave a message.

I rang the switchboard number again to explain my plight & was put through to my consultants secretary guess what............not in office until next week.

What a mess our health service is in, i wonder why they call it health 'service' it has taken me best part of my day to achieve absolutely nothing.

I feel a letter to my MP is needed.

7 Replies

If you get any worse, you will have to go to hospital and insist on being seen...Pancreatitis can't be left long. MaryF

1 like

No worries Mary that's exactly where i shall be heading, thankfully it is not as painful as it was but i'm still out of sorts.

What a battle we all have, i'm thoroughly peed off with it all.

I shall be poking that info you sent me right where the sun dont shine next time i see my Gp. x


Hello jillymo , can totally understand your frustration. I had a PE fifteen years ago and was diagnosed with APS and SLE ; I take Warfarin for the APS but to date have refused all the immuno suppressant drugs that have been offered me for the SLE.

Although I get some arthritis type pain in my joints , my main problem is connective tissue pain all over my body , I also get pain in my blood vessels ( vasculitis )

When an attack starts my brain says " here we go , another SLE attack " but as the weeks pass, doubts begin to creep in - is it Angina ; is it Pancreatitis ; is it bowel cancer ; is it stomach cancer ; is it Prostratitis and so on. ( SLE is referred to as the great mimic )

All this has led to many hospital visits ; blood tests ; scans ; endoscopies ; etc and to date ; thankfully ; nothing major has been found.

My experience makes me believe that most GP's have limited knowledge and understanding of SLE and that most hospital Rheumatology departments , whilst being very good on Arthritis are fairly poor on the other aspects of SLE.

So in conclusion ; sorry it's gloomy : very difficult if not impossible to find medical people who truly understand this condition and at the moment the only treatment is suppressing the immune system ; which then allows something else to finish you off.



That's me finished off then i'm on immune suppressants, that comment made me burst out laughing when i read it. :-)

It's sad to think be have to battle so hard to get a diagnosis & to find now you have one nobody seems to understand it.

A lot of people on here seem to be on warfarin, i'm on clopidogrel but find myself having to take the odd aspirin when very poorly.

At least your brain kicks in to give you a clue as to what is happening mine just doesn't bother.

Like you i have the connective tissue pain & arthritis together with the strange sensations in the legs & the horrendous burning sensation.

At least we are among friends that understand on here & we can hold a hand out to them for reassurance when in a crisis.

Take care

Jill x


I suffer with SLE which has affected my kidneys, plus a whole host of other stuff which is associated with it. I rarely, if ever, go and see my GP (unless its a minor complaint) and always contact my renal unit who will see me quickly or, if push comes to shove, I go to A&E. Stick with the professionals who know you best or as Admin has said, go to A&E and they will sort you out.


Hi Kate,

Nice to hear from you, i am also an SLE sufferer together with sjogrens & APS & find when i am in a crisis i am unable to go anywhere.

I should call the Gp out but they are so reluctant to come out to you these days & tend to send you to these wretched walk in centres.

Admin told me the same A&E it is. Jill x


It sounds like you need to get to the AandE dept at Bath Hospital and then they will sit up and take note. I'd leave your GP out of the equation as he/she will just not have the specialist knowledge necessary to help and reassure you. I wouldn't wait until the consultant's secretary is back next week as you may still have problems getting an early appointment. I really hope all goes well xx


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