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Sticky Blood-Hughes Syndrome Support
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So, I have been on here moaning before (twice) about not being able to make contact at all in between annual check ups at lupus unit

the first time, I had been disccharged and then suddenly fell ill shortly after,and my GP wrote to ask if they would see me,and the wrote back, no need , just been seen,discharged,will get nurse to give a call to put mind at rest (spent three months chasing nurses call that never cam :(

second time was when I had been seen in A&E and they had said to see my consultant asap

once again they wouldnt see me

in desperation at one point I saw Prof Khamashta privately,who referred me to himself on the NHS

when I first saw him on the NHS he apologised for what had happened,said it never should have and promised that under him It would never happen again,said he would see me every six months and that he felt I had other conditions and that he was going to get to the bottom of everything starting afresh

Then he went away :(

I am having similar problems again

I am having a terrible flare

My balance is very bad and I keep falling over

My cognitive function is very poor

I cannot eat anything except soup without it getting lodged in my throat and choking

I am having lots of problems with my right arm,,tremors, spasms etc

Yesterday I spoke to my consultants secretary

she said she would give me his email ,so I could drop him a line

I said I would be unable to write it down as my arm was stuck in a rightangled degree and my hand in a claw,I was about to ask if she could email it to me but she said she would try to get my appt brought forward

she rang back and said that he said no, i should see my gp

I explained that I have booked a double to tell my gp all this but that although she is lovely she doesnt know what to do with me and will probably say I need to see my consultant (see the pattern emerging)

I asked the secretary if she could send me the email address so that when my arm free,d up i could email

she was very reluctant but agreed

when she asked me my email address (its a silly long one) I could tell she was not even writing it down

This was yesterday morning

I have just spoken to her and said "you were going to send me an email address"

She said "No"

then she asked me for my email address,,,this time she did write it down

I cannot go private again, in fact I am about a week away from having to go to the foodbank

31 Replies

Right, this is disgraceful, you need not only to contact PALs, but also write a formal letter to the CEO of the hospital with all this information. I also suggest you explain to the secretary what your situation is regarding finances and also your health. Please do not attend an appointments without a very good advocate, this can be your most articulate friend, relative, neighbour or colleague. I would be tempted to ring up and say you will be turning up to the hospital to sit in the relevant department in order to receive some help. Do explain very clearly that you don't want to have to resort to a very public formal complaint involving as a last resort the press! MaryF


If only everyone were as swift as you Mary!

I literally only just typed that

I guessed you would probably advise PALS

Have been considering that all morning

Its just that I am really struggling and have so much paperwork,what with changes to my benefits and other stuff going on,but I know you are right

I dont have anyone I can take

All family and friends unable to take time off work

Will contact PALS


When you contact PALS, do let them know how serious this is, quote what was told to you about getting your care back on track and also that you have been advised to make a formal and very public complaint as once again you have been failed by a leading hospital regarding your care. Make sure you weave into the conversation that if any serious incidents do occur beyond what has occured already it will be down to them and their sidelining of your urgent care. MaryF

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thank you I shall


Oh, also, there is that online feedback thing that you advise filling in Mary

Could you possibly remind me off those details

was in A&E two nights ago and they were as much use as a chocolate teapot

I had something lodged in my throat and was struggling to breathe

At my local hospital they have a virgin urgent care unit if you are not seriously unwell enough for the big A&E

you go in one main door , then tell a nurse why you are there, then she either sends you left A&E or right Virgin

I waited five hours in virgin,and was prescribed some buscopan!


On dear oh dear, you also need your Thyroid checked, very very definitely it is common with us lot to have a Thyroid problem and if under active can effect every part of the body, same if fast! NHS Choices on line you can be brutally honest, I am and usually I give a glowing report as I do really like to praise them where praise is due. However if I need to leave feedback that they learn from, I would also be prepared to do that, and have done in the past. Be very firm when you ring up PALS and be firm when you ring the secretary or head of the department which is letting you down please. MaryF


Before starting medicine for hypothyroid one of the main symptoms was it felt like someone had their hands around my throat/neck or pressure like as well as many other symptoms.


thank you again Mary

Been meaning to do blue horizon for ages ,but it,s out of the question at the moment

Had TSH done recently,which is all my GP will do

As always they told me its "normal",but have been reading up on the thyroid site as you suggested,so requested copy

It was 3.96 which I believe is a little high, but nowhere near high enough for treatment?


Phoned PALS

Lady was very rude!

anyway, I now have an email address

will have a soak in the bath before emailing as arm hurting


A much better response from the virgin urgent care


I'm sorry you're going through this and hope you get the help you deserve soon.

I complained to my local hospital and although I won't go there again and have a new Dr I do feel it's definitely worth doing.

It's stressful and takes time and effort but you need help and they are meant to provide it!

Good luck and I hope you get seen and feel better soon x

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thank you for that Yllek

Yes, it,s stressful and time consuming and my arm even at the best of times will spasm if i type,write or use a mouse

I have now sent long email to PALS



I also repeat to do what Mary says concerning that particular Hospital clinic as the number of complaints we are hearing about there is again growing. One complaint to the CEO of that Hospitsl took 4 months to reply and it was not worth waiting for. You also have the option of the ombudsman too.

Not that it makes you feel any better but my appointment there was cancelled twice, then I found out the one I was given was the day before I return from my holiday, when I tried to change it was told Feb! When I asked the secretary if I could get one sooner because the consultant had told me he wanted to know if I had a return of one of my conditions, I was told a flat no, there was no more patients being seen unless they were emergencies and yet I know people were going for appointments and getting asked to rebook to come back before Feb.

I think the place is in a terrible mess now it's merged with Rheumatology and frankly the more people sadly that complain the better or nothing will get done.

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I wonder if it led to Prof Khamashta,s decision to leave?

he told me he was most unhappy about the merge


😥Perhaps if they got rid of most of these and employed more Dr's, nurses and support staff, things would change and they would save a few million!!

How many "Directors" do they need!



Time for a hard hitting petition again I think! MaryF

1 like

I will be the first to sign!!


Hmmmm.......so at the bottom is a list of their values. They don't appear to be living up to them!


When complaints are necessary, I have found PALS work very well. On one occasion, my partner was quickly referred back to the top consultant, rather than the person on his staff that let us down so badly. They were polite and efficient and finally called back to see if we were happy.

Hope you get sorted soon, donnabrain.


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Quick update

Much more polite gentleman from PALS just rang me

He listened,whilst I told him how I felt the unit had let me down on three occasions

I also told him that the lady I spoke to yesterday was rude and impatient

He had already put my garbled voicemail together with my long email and read and listened to both.

He was unaware that I had spoken to anyone yesterday,but was able to work out who I had spoken to by the timing of my voicemail, and the fact that I had spoken to her literally seconds later.

He then said I will have a response in a certain number of working days,but now my mind is blank and I cannot remember how many,but I do remember that it was shorter than I imagined it would be.

The next bit is the important bit though

He said " you are symptomatic and you need to be seen" and has said he will ensure my appointment gets brought forward.

Sorry,Apsnotfab,it may be people like me making your wait longer,didn,t mean to que jump, just wanted to be able to relay current symptoms to consultant

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Another update

I have today contacted PALS as since the nice gentleman rang I have heard nothing

Spoke to a different person who is going to email the department this afternoon

So far no appointment has been made , and I still do not have am email address for the secretary,although she has twice said that she would email it to me.

I also think I may need a change of anticoagulant,,or to be more precise, think I need an anticoagulant, as at the moment am being treated with aspirin, but I am forever having numb or fizzy tongue and lips

Gp suspected food allergy, but she said if I took cetrizine for two weeks it would go, proving it is allergy ,and then the next step would be to do elimination diet to find out what.

However,during the last two weeks,never forgetting to take the cetrizine, but had the symptoms daily

Pretty sure I have been advised before that that means not sufficiently anti-coagulated


another update

I have an appointment tomorrow with the lupus nurse at guys


Please ask for a Specialist instead of Prof Khamashta who left. As you have several different autoimmun illnesses it is very important to have this Expert who can give you proper treatment and sort everything out.

I wish you GOOD LUCK tomorrow!

Kerstin in Stockholm


Thank you Kirsten

My new consultant is Dr Sangle

I think they have given me this appt with the nurse because PALS told them to offer me something immediate

they rang me Monday with this

To be honest, they sounded rather cross

I dont mind it being the nurse as I know her and feel I may be able to talk to her more frankly


well that could not have gone worse :(

sat down with the nurse and she very gently asked me what has been going on,

i took out my piece of paper and began,

all of a sudden Dr Sangle burst throught the door and started firing questions at me, one after another

I didnt get to say what I had gone to say

He then examined me

then he said to the nurse to get all my bloods up

she thought he meant he wanted some taken and she asked what ones he wanted done

he then siad no just get the last ones up on the screen

he then told me to look at them

I couldnt see and didnt have my glasses on, but didnt bother getting them out of my bag as i knew that even if i could see, they would mean nothing to me

he then kept whispering long sentences

I kept saying I cant hear you

he said all my results are normal

he said there is no evidence of lupus or connective tissue disease

he ordered a brain scan and said there is nothing else we can do for you

he said my gp can look after me now

he didnt actually use the word discharged, and it was not until after leaving the hospital that i realised that that is what he had done (or at least i think so)

when I got home , I left a message on the nurses answermachine to ask her to call me and clarfy if that is what he had done

I said that i felt bullied by the appt

I had a panic attack on the way home

Still reeling

Still not quite sure what happened

I know that Mary had suggested taking someone with me, but I didnt know anyone who could take time off work

the only friend i have who doesnt work, does not go out ,so she could not come

my partner lives in cheshire and cannot travel on week days as he has a small child and no-one to collect her

One of the things that makes me realise that i have probably been discharged again is the nurse said when the brain scan has been done i must ring her so that she can request the results as they wont go there otherwise

they usually do

I had a brain scan in august and that was normal

I expect this one will be also

Proffessor Khamashta promised me that i would not be discharged again

Dr Sangle seemed to be very angry about me taking steroids and i dont understand why

he kept shouting why do you take steroids

I said i did not take them regularly but was given them when flaring

he shouted "who had decided that,but i couldnt remember

I do remember now that someone from the unit had on two occasions emailed or faxed my gp to say to give a short course and that ever since then I have just phoned gp when needed

I have never had more than one weeks worth in a year

I explained to him that i often get costochondritis or pleurosy and am never able to get well by myself whenever i have any chest involvement,taking months to get better and that is when they give them to me

he didnt give me any chance to speak

he did say that the reason for not prescribing me an anti coagulant like warfarin was because of the risk of a bleed

He also said you do not want to be given poisonous substances

I am confused

I did say well what about my numb tongue and lips,does that not mean that I am nor sufficiantly anticoagulated

the nurse then said that because I fall over,that is a risk

I get the feeling that they are very angry with me for going to PALS (not the nurse,she seemed to be on my side,and seemed as shoccccked as me at some of what he said

when I say "they" i mean the unit in general,as the person who rang me at home and left a voicemail, saying they were ringing from the unit about the fact that I had contacted PALS and would call back,,,sounded cross

the person who rang me with my appt sounded cross

And Dr Sangle seemed cross, although a lot of the time he spoke very gently,at some of the time only in a whisper and i kept saying i couldnt hear

I felt the whole thing was very "passive agressive" and really feel like i have been bullied

I regret ever contacting PALS in the first place,just wish I had left things alone and gone to my normal appt in July, but I was worried by my new symptoms and was looking for re assurance

My father died from his second stroke(in his forties)

they were both quite insistent that i excercise

the nurse said I should swim

i used to go to aquacise for many years but was forced to give it up when my post exhertional fatigue became worse and the day of aqua was completely wriitten off each week as i only just managed to get ready on time and after would sleep the rest of the day,and had to order take away,which i felt was defeating the object,,so i explained this to the nurse (Dr Sangle had left the room by then

I do walk a lot,but do no "formal " excercise


What a horrible Doctor!!

I could feel how terrible the situation was for you. Very well written.

So sorry prof Khamashta is not there. He understood very well. I do hope someone can tell you what to do. I only know the Swedish routines.

Wish you well!



Thank you Kerstin

I think when I have gathered myself together tomorrow I shall ring PALS again.

The lady I spoke to the other day said I made a good point, and that was when you are not really bad enough for A&E and the GP doesn,t know what to do with you and you can,t contact unit and you are stuck in the middle .

It sounded like that struck a chord and maybe changes will eventually made for the better, but at the moment I am high and drigh (again:()


I hope you get a Doctor who knows APS and not afraid to help you with your treatments. Doctors do not like patients who are complicated because they do not understand the illness. When you see a Doctor who understands he is not afraid but wants to help you in every aspect.

You will soon see him/her I am sure. You will not give up. You have done nothing wrong,



Thank you Kerstin for your kind words

Definately feel that they are cross with me

Was looking at London bridge site earlier with a view to going privately, though my income has been cut drastically three times over the last year and a bit

A strange thing just happened,,I just received a text telling me I have an appt at the lupus unit next Wednesday at 10.15

It didnt say who with

Not sure if this is a mistake

Cannot be mixed up with todays appt though as that was 12.15

Very confused


Woww...... could be something positive.

They have no reason to be crossed with you!! Remember that. You are the patient. Perhaps take someoone with you to the next appointment (if it is possible) and write your questions down on a paper.



Its actually Next year lol

Glanced at it and thought it odd

rang appts this morning and they said its for 2017

I asked who with and it is the nurse again

at least I know I have not been discharged


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