Confused, is it me or the system?

[Boudica1]

As some of you may remember I had a Slash Biopsy 7 and a half weeks ago and was told that the results will be bad in 4 weeks, wellllll 7 weeks later I still hadn't heard anything so phoned the secretary at the clinic. Upshot of that was my consultant should have written to let me know the results but she hadn't got anything in front of her to write so she would get in contact with him to remind I was still waiting.

Today I finally get a letter from the hospital but not the test result instead it's for an appointment for the beginning of June with the head Honcho of Dermatology as the other consultants refer to him as. Not only that but it's finally a combined clinic after all this time. 3 years WOW. So still have no idea what the biopsy result was now I'm getting really fed up, annoyed(?). Is it just me or is the system? How on earth am I expected to go to an appointment prepared when I haven't got a flipping clue and having various consultants gawping at me and asking question for around an hour? ARGH! Yes I do have a Lot of photo's and a symptom diary but if I'm in the dark I don't know which bit's they want and there's way to much to lug around and sift through to find exactly the right thing they want.

So now if nothing else turns up in the post I'm going to have to pester the poor secretary again next week or try the impossible and try and get a hold of my usual GP to see if she can take a peak and let me know, nudge nudge say no more.

Is it just me or are we all treated this way even though it's our bloody bodies?

[stiff19]

Hi BoudiccaSadly a sign of the times I 🤔 think.

I went to a combined clinic, had nothing but muttering and possible diagnosis whispered then more muttering then told they would push urgent neuro referral. All such a long time ago and now I still 3 years on sit waiting , neuro gone , dermy appointment July, no rheumy, no treatment, now other eye being affected , same old problems raising their heads over and over and over and just give up. I have kept diary and photos for years now, get thanks for them but no further with anything and still no results from tests on face despite chasing .

No energy left to chase anymore, feel totally insignificant . I have no answers other than this is just the way it is, some people the system works for others not.

I know what you mean , I feel I’ve been discussed but no one involves me, I was excited to have tests, each test I’ve hoped held answers but the stress of not even being able to get results just causes stress and in turn more problems. It’s tiring but what can we do🙈 nothing I’ve decided, I push it brings nothing , I sit back and wait in hope it brings nothing.

I hope you get something from your combined clinic and your test results 🤗x

[Boudica1 in reply to stiff19]

Yes Stiff it does seem to be the norm sadly. I'm seriously thinking about getting my hospital records from some departments to see what all these doctors are writing about me and my body and what all the different tests results are. I have the address of the records department and also known that under the freedom of information act I'm more than allowed to have copies of anything that they have on file about me. I don't think if the records would get to me in time for this appointment but I think I will go for them after the appointment.I'm surprised that in this day and age they still treat us like mushrooms even though it's information about us, our bodies and how they decide to treat us and expect us to be able to agree to treatment without all the relevant information. It's like they think we are children and tell us oh it's this and this is what we are going to do, end of. No discussion, explanation just that bye bye.

[stiff19 in reply to Boudica1]

Sounds like a good idea, though it’s sad we have to chase and request, it should be given each time I feel, as you say it’s our body, we have to know 👍xx

[suzannah16]

all information is on a need to know basis and we don't count as needing to know. how many times have you had to remind a doctor of something because they haven't read your notes? If you're anything like me too many times to count. we are our walking talking notes and we need to know everything no matter how trivial a doctor might think it.

[Boudica1 in reply to suzannah16]

Yes they do seem to treat us like mushrooms or little children.So I'm seriously considering applying for my hospital records under the freedom of information act and by law they have to send you the records you want because it's records about you 😉.

I think I will wait until after this appointment which could be very interesting. I've been thinking about it for some time now and this is going on far too long.

X

[KayHimm]

Oh, Boudica, you have been through too much. It does seem you should have been informed of results sooner. I wonder if they are super rare tests to take even four weeks.

I think at this point I would just assume they want you to be seen by a very experienced person and unless they tell you otherwise, just show up. Everything should be documented in chart, right? They have all your past labs.

The system is backed up badly everywhere. It is crazy that anyone would not get results. But they at least scheduled an appointment.

Best of luck with this

Xk

[Boudica1 in reply to KayHimm]

Yes I waited because I realise that things are somewhat backed up but I think being treated like mushroom or little child is getting worse. I've been thinking about getting my hospital records under the freedom of information act and they have to give them to you. It's crazy though that we as patients should have to do it.X

[KayHimm in reply to Boudica1]

Yes, it is crazy. I know there is a physician and maybe nursing staff shortage in the UK. It sounds like it is wreaking havoc on already stressed system.

As a doctor in the US put it, « We can no longer be the doctors we want to be. » It is so sad.

[Smudge4465]

Sorry to hear you are frustrated with lack of communication. I wouldn’t hesitate in phoning the consultants Secretary again.I have done this several times, explained I am worried and the registrar phoned me within a very short period which put me at ease. My hospital in the UK is a lupus centre of excellence, they are not perfect but in general very good. Noticed last few weeks that all appointment letters are now on email which is fantastic, no letters lost in post etc. If you sign up to the hospital as a patient under the ‘my doctor’ scheme you can see all letters etc .

I did not know about this scheme until my lupus nurse told me. Maybe that’s an avenue for you to pursue. Hope this helps. Best wishes.

[Hidden]

It’s not you! We laughingly refer to it as ‘ the system’ when I think the problem is there IS NO SYSTEM!It’s chaotic at best and completely disjointed so even if one department gets it right it’s pointless as the rest don’t join in!

It takes more out of us all trying to get treated etc than dealing with our symptoms!

We have the right to be heard and treated and feel as well as we can, I wish health care professionals would accept this!

Rant over - for now ...