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

20 Replies

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  • 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

  • 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

  • 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.

  • 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

  • I will be the first to sign!!

  • 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.


  • 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