St Thomas' have done it again - Hughes Syndrome A...

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St Thomas' have done it again

panda60 profile image
9 Replies

I have had my 'annual' appointment changed so many times I have lost the plot. When my July 2011 was changed to Feb 2012 then again till August I phoned up and was given a cancellation for 7th Feb. This morning I have had a letter cancelling that one - ten day's notice- until August. My husband is wondering whether this latest one is taking advantage of the fact that we don't need to book a flight/train/accommodation. But he has had to change his working arrangements (he has a very demanding job) to come with me.

I need this appointment as I've been really ill and need to have my medication reviewed, and what they suggest for fibro.

I'm going to let my GP know on Monday but what else can I do??? Really don't have the energy to deal with this right now.

Caroline

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panda60 profile image
panda60
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9 Replies
MaryF profile image
MaryFAdministrator

I fully can relate to this, I had the same thing, also my local hospital, for myself and the children,endless cancellation and rescheduling of appointments,with letters arriving, so many in fact that I sometimes get totally muddled. Mx

Storky profile image
Storky

I am so sorry to hear about this Caroline but I would call on monday and complain and tell them in no uncertain way that you need this appointment and that it has been cancelled three times already and that you HAVE to have to see a Doctor for the reasons that you state. I would also tell them you will make a formal complaint if you don't get one.

Its strange how they find appointments for people when they make a fuss. The old saying......he who shouts the loudest......sad but true!

Oh and the other thing you could try.....call St Thomas's and ask to speak to the secretary of the consultant you are under. Explain to her the situation. That usually secures an appointment too.

MaryF profile image
MaryFAdministrator in reply toStorky

Well said... and this is very important as some of us live miles away and try and take advantage of cheap pre booked train tickets... so, they need to really sort this.! M

ltespain profile image
ltespain

Call and complain - I had my appointments changed so many times by them that I failed to see anyone there for almost 3 years. THEN this past year plus they kept changing my appointments, twice to dates I couldn't make so they then sent me a letter saying I had cancelled too many times so they were removing me from the patients list.... don't let it happen to you. Make sure they keep a note need to see someone asap AND if you can't make a date they give you they must note it's because they forced the date on you. Get your GP to intervene if you can and definitely make sure you shout loudly!

They promised us all that the changes they made several years ago would prevent this happening. I am lucky that now I am fully based in Madrid and have an excellent consultant with instant access so I don't need Tommies any more but I can't even begin to calculate the amount of money I wasted on tickets I couldn't use when they cancelled on me. Twice we got the notice the day before.

Good luck

Caroline

Call them - truth be told it's not their fault. Trust me I appreciate that it is very frustrating, but they are only human! If you explain that you have travel booked and that you can't wait because you are concerned about your health they should move it back forward. It is a shame (and it's happened to me several times too) but it is a highly oversubscribed unit with limited funding from the NHS and most the doctors are involved in research as well! You must stand up for yourself but it's nothing personal and they will try to help.

Good luck

Tx

panda60 profile image
panda60 in reply to

I do appreciate that it's not their fault and why clinics have to be cancelled. But it is frustrating - particularly for my husband who has to arrange time off work. I don't have to book travel or accommodation but it must be a nightmare for those who do.

Anyhow I've tried calling them so will wait and see...

If all the above fails, try calling PALS. They are the patient's advocate and are very understanding about travel arrangements etc

paddyandlin profile image
paddyandlin

Caroline how are things going now?

paddy

panda60 profile image
panda60

No luck with changing my appointment - on the say so of the consultant -but I have got a supportive GP and he will give me an NHS referral to the consultant who diagnosed the FM. I am beginning to realise how lucky I am with my surgery.

In the meantime it's one day at a time - upped the amitriptyline last week and had five days where I felt much better then the back pain started again with a vengeance but I realise this is the way it goes with FM. Whether it's the increased dose of medication or just the brain fog my memory at the moment is dreadful - but I just make myself laugh about it - my poor budgie got the seed container with the lid on this morning instead of his bowl!!

Caroline

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