Crying - why? : I would like to say Happy New Year... - LUPUS UK


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Crying - why?


I would like to say Happy New Year to everyone and am pleased to report that for the first time in 2 years I did not have to go to hospital :-)

My Rheumy had booked me an early apt before the Festive season so that they could keep monitoring my progress. Transport was booked and according to hospital procedure, because the department mainly see ambulatory patients, and I'm a stretcher patient, transport department is required to inform the department of my arrival and then Rheumy department would make necessary arrangements in readiness for me. Then once done, transport then return call to confirm your appointment.

From my end, everything that's needed to have been done was done. All that was left was for transport to return call that Rheumy dept would be ready for me. But no, on each and every occasion inclusive of this incident, every time this particular staff member handles my transport bookings something has to go awry - transport either late, not turned up, or she fails to book return journey within the requisite time and I'm left lying on the hard couch until the ward is closed. It's then that night shift has to take me home. On one occasion, 3am in the morning! This is not an exaggeration!

You can well imagined the discomfort, pain, embarrassment I've had to endure waiting on transport - on occasion I was so stiff had there been any immediate movement from the couch to the ambulance stretcher, My body would have gone into shock. It took the experience of a very senior and mature nurse when she recognised the error that about to be made to shout No! Then she taught us all that in the future should this happen again, what needed to be done to prevent what could easily have been an emergency situation.

I've never seen or met the controller that works in the Transport department at this hospital but she has a very distinctive voice and for the life of me don't understand why she should treat me in this way. Despite management speaking with her about it, the situation has not improved.

I have even changed hospitals because of this constant stress and pains endured as a result. However was forced/encouraged to go back there bcos that's where all my notes are.

Crying- because because I'm a very slow learner to grasp things and my brain shuts off because I can't take it all in. The varying complexities of my situation that has suddenly come out of the blue. I don't know how to deal with it. What questions to or not to ask. I shut it away. I want it all to go away. Just wish to wake up one morning and wish it was all a bad dream. Get my life back on track and move on.

People look at me and say after she doesn't look sick! I ask what does a sick person look like? I hurt all over one minute. The next I appear fine. The other minute I am stiff as a board the next I have a fraction of movement. My fingers and toes goes different shades of colours whenever there is a flare. I have this crushing crunching pain in my chest that won't go away as if bone rubbing against bone. I have pain in my right hip. Can't weight bear in neither hands nor feet at times. I won't even go into the issues regarding my neck and the difficulties in swallowing. My memory at times goes blank and now my eyes are becoming blurry. My skin is also another matter not to mention the dizziness from the Meniere and sticky blood.

I honestly thought I would be going forward this year but .... my joy is short-lived. I am now prescribed 3 new drugs: Dermovate, Mepacrine, pro topic ointment!

So, this apt scheduled for this afternoon was very important to both me and the consultants in question.

This transport controller literally cancelled transport and then lied that Rheumy department did it! Rheumy department knew nothing of it as they were expecting me to be there!

If it was within my power, and capabilities I would make my way there but I can't go because I'm bed bound at home and they don't come out to see me! :-(

What is it have I ever done to her or anyone to treat me like this? I don't wish even my worse enemy to have what could easily be described as "silent killer diseases".

I am crying. Sorry George. Sorry Howard and Lupus Admin staff but much more need to be done to help us Lupees/Rheumy/Hughes Syndrome+ connective tissue sufferers. I am just plain tired. Tired of it all. Tired of sounding as if I am moaner. But these are real issues and people are mean and cruel and unkind in what can be described as "constructive" way - ie doing this to frustrate another so they either leave or give up. But how do give up sicknesses that cannot be seen with the naked eye? How do you give up secondary illnesses that are not considered "important" thus left untreated and may very well be the one that causes your demise?

If you can tell me how to get rid of it another way than having to face discrimination and prejudices, I will gladly take it.

Since they have now cancelled my appointment and heavens knows if and when I will get another: if you are taking Mepacrine how have you found it?

13 Replies

Hi denden,

I'm appalled to hear about the awful service you have been experiencing with the hospital transport. Have you lodged complaints against them with the appropriate services to try and remedy the situation?

denden in reply to Paul_Howard

Happy New Year Howard.

I have done everything humanly possible. I've informed my GP, the Lupus/Rheumy department, PALS, the manager of Transport department, the Community Ward admin team, my social worker, my care agency manager. Really don't know what else to do except to just lie here and die as I wait.

The ONLY place I've not contacted is the newspapers/TV stations

Paul_HowardAdministrator in reply to denden

That is shocking. I think that littleeffie's suggestion of contacting your local MP about it is a good idea. This really should have been resolved a long time ago based on the number of people you have discussed it with.

Geee how awful!

Have you thought of finding e-mail contact for your local mp?

An e-mail to them with what has happened may give your local health authority the necessary kick up the proverbial to sort this soul destroying situation out once and for all.You seemed to have tried all other things so worth a try and let the transport department know you have done this.

I sincerely hope things improve for you soon.

Best wishes x

denden in reply to littleeffie

Hi littleeffie, happy new year to you.

That's the only thing that never crossed my mind. Will get someone to do so on my behalf.

It is really bad. The worst thing is it doesn't just affect me but am sure there are others who are suffering in silence

But is there only 1 person that makes these arrangements in the whole hospital? In your shoes, I'd speak to PALS and ask to be dealt with by another person all together. Given the extent of your disability, this behavior is unacceptable.

Send a LETTER to PALS saying:

- I've been left unattended again on such in such date

- that was despite my organising everything in well in advance with person X

- this is not the first time

- I have repeatedly complained about the situation, as you know, but no improvement has been forthcoming

- please provide me with the direct contact details of someone else who carries out the same duties as person X. This way next time I can phone them directly and hopefully avoid losing my dignity on a stretcher outside your hospital because of person X's negligence

denden in reply to Purpletop

Happy New Year to you Purpletop. I have since contacted PALS. surprisingly, they were able to inform me as to the reason why I have had to contact them again for the the umpteenth time! Nevertheless, they have now for the first time ever provided me with the two names of the manager in charge of the department, with the promise that either of the two will/should be in touch within 24 hours. Wait to see what happens next.

Purpletop in reply to denden

Great. If you don't get a call within two days, call the operator and ask to be put through directly. Listen to what they have to say and then calmly day to them that although you're thankful for their apologies, etc, you'd rather have another person dealing with your arrangements from now on and can they please give you the details.

Don't let them off the hook. I see no reason why they shouldn't accommodate your request.

Well done, you. If you can't go see them you might as well pester :)

denden in reply to Purpletop


denden in reply to denden

Overall I'm scared to make any type of complaint for fear of reprisals. It seems my own GP has also joined the bandwagon of not wanting to treat me anymore. During our conversation, the point was raised that I'm now out into the community and the community ward was responsible for all my future appointments etc.

Of course I expressed my surprise and concern and asked if she was by any chance suggesting that I am no longer registered with them? Since the community ward is a virtual ward, to whom do I turn should I have a need or a query? There was no reply.

The complexities surrounding my case - Lupus ++ makes me wonder what exactly can I do more than I have already done to help myself? If only I knew... then I would do it. (sigh) :-(

Purpletop in reply to denden

Ok, here's the thing. They should be more afraid of reprisals than you. Because they still have something to lose - reputation, law suits, etc. The problem is that by being accommodating they see us as being weak. Time to change that opinion.

It is a balance, though, I agree. If w escream too loudly, we are labelled as hysterical and ignored, if we don't scream enough, then no one listens. That's why I always say - be calm but ruthless. Just put them in a position to not say no, by being "reasonable" - e.g. I'm so thankful for your tremendous help but would it be possible to get this sorted out as soon as possible, you aren't really dropping me as a patient because my illness is too complicated, do you? And if they repeat the mantra of "you're someone else's problem now" say "I don't see how that can be, I didn't agree to that, are you saying that you have taken this decision on your own?". And if they say "not me, the doctor/ management/policy" then hit back and say "ok, then please write to me the details of how exactly you have come to that conclusion, as you're talking about a person, not a number. You have my address...".

Basically do not allow them one inch of room to manoeuvre.

The only problem I see is the brain fog. I so understand where you're coming from because when this hits us, we can't focus properly, we are tired, weepy, and basically just want stuff to work out, not fight.

But try to speak to these people soon after you get up when you have better focus.

Anyway, you're doing a marvellous job yourself already, just don't give up. The cheek of these people.

I ended up in a 'same but different' situation after making a complaint - loss of Doctor's support when I was at my sickest.

Since then I learnt the benefit of being discreet. It definitely sounds like you had to go after the sadist in the system - and well done for doing so, especially when you are so ill. It would be nice if we could call the police in these kind of situations.

But in future, my advice would be - when you see your Doctors, even the ones that know about this situation, stick purely to the medical. Steer clear of talking about this particular problem and the official need to complain. They wont think about the justifiable morality of what you've had to do, they will think - she might make a complaint about me. Better steer clear of her.

I know this is morally wrong - from top to bottom, but Doctors won't advocate for you in areas that they don't see as their responsibility - even though they should.

Stick to the original source of the problem and don't let it tentacle out to your treating Doctors. If an official asks for a statement from one of your Doctors, just so no. (Nurses and others, unconnected to your Doctors - definitely yes) - But I can tell you now, most Doctors wont be willing to get involved in any form of legal complaint process.

In all matters, put your health first, and look after yourself first !

Well done for going after the sociopath involved and if its making you feel better by going after him/her - then keep going !

But if the anxiety of it all is adding to your troubles, then just try to let it go, and let your body and mind heal.

Sorry to sound cynical, but actual real justice can be a rare commodity.

So sorry my dear, feel better soon.

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