GP appointment - am scared & anxious & need to get it right

[MiscellaneousAssortment]

I have booked a double appointment with a GP I've never met, on Monday.

Please help me get it right. I've got loads to cover and he's never met me before & I need to give a good impression and make him understand and not dismiss me or refuse to engage with me.

I've have terrible experiences with GPs who've abdicated any responsibility for helping me manage my complex and horribly disabling condition.

Ideally I wouldn't have so much to cover but unfortuneately several things are now urgent since I plucked up courage to make the appointment :(

It's really last chance saloon time to get gp to actually to their job. Someone from the hospital has spoken to him about the practices failure to engage with me or do their jobs, which has jeopardised my health and my mental health through the neglect and refusal to help me access medical care. I've never met this particular gp and apparently he's agreed that my condition needs management and he prepared to do it.

So now I have to go meet him and I'm terrified. I need this to work. But I am having pretty much daily panic attacks (I don't normally, it's the thought of the GP), and I'm on the point of collapse anyway... Which makes it very easy for me to get dissmissed as a hysterical pathetic waste of time :(

Here's what I need to cover... But clearly can't in the time...

1. introduction to my situation including complex systemic condition with multiple secondary conditions and issues
2. introduction to me and my personal situation (& my terror of gps!)
3. What the GP is going to do to help me manage my condition re. Referrals, drug management & plan of treatment/ contingency plans (as they've refused to treat me on numerous occasions in an emergency which just isn't ok). See below as this involves lots...
4. Intervening in the terrible hospital situation I'm in, need an operation urgently but cannot have the consultant who was terrible (see previous thread)

--

3a This involves a complaint about the constant and awful mistakes with repeat prescriptions which in recent weeks have fucked up me trying to Titrate down off a drug but had to go back up you're Xmas levels due to them fucking up (& many more examples all recent)... And what he's going to do to ensure this doesn't keep happening
3b new prescription from consultant appointment yesterday
3c how he can help manage me going onto a drug that was prescribed months ago but I haven't taken due to terrible side effects last time which no one spotted and they forced me to keep taking for months before I realised on my own what was making me so ill
3d chase up pysch referral as I think he's just referred me for big standard councelling which isn't appropriate - they just can't cope with the amount of stuff going on and aren't qualified with the specialist stuff which happens when you lose your whole life, identity, future and self. Oh and 2 close family members to the same condition, and your son is now showing symptoms. And that's just a couple of things there's loads more which has given me bad ptsd and more...
3e. An agreement to work with adult social services and not against them
/ against me especially when they give inaccurate info based on nothing but their own prejudices & preconceptions... So not to do anything yet but be aware lots needs doing and be ok with talking to me another time about this
3.f be aware and agree to do the vast amount of blood tests, scans, gynae exams that they've been asked to do and have so far refused to. Again not do anything about it now but agree to start doing them ain the future
3.g. Be aware I have other medical needs beyond my condition which is like some help with eg smear test (but can't get on the bench thkng to have it done, & they will injure me unless they do it v carefully), and various lumps I need checking out (which probably should be urgent but I can't face dealing with it), and
3.h I'll need an appontment to talk about my son and options for him going forwards

Don't bother for now with description of your illness, just name it at (1) in that list.

You could add, "I'm not well enough today to talk much".

Sorry, I'm not making sense today either.

Should have suggested "I'm not well enough today to talk much, but there is some good background material at X / by Y."

(If you have favourite sites or feel there's a particularly good researcher.)

Oh dear DS has just come in with sudden horrible ear ache. Tbh it looks pretty bad so this is a rather big stumbling block.

If he has an infection I don't know what to do as if he's not at school I cannot go to the gp as its not the kind of appointment where I can take him too. Or maybe I shouldjust give up and ask them to swap the appointment to him?

thered I'm very well aware that "you are not the only patient that GP has to see tomorrow". Please don't think I need reminding of this.

It's always been made very clear what a complete waste of time anyone seeing me has been and how I'm a selfish drain on resources. As I've not actually been allowed the privaledge of seeing a gp for almost 2 years I don't know why I'm bothering now.

On the up side it looks like he won't have to see me at all. Which will make everyone very happy.

I am sorry OP i didnt mean to make you feel like that, just trying to give perspective from other side, in hope that you and new gp could really get most out of appt.
Most of us are compassionate and empathic and trying to do our best but antagonist attitudes from patients really are pretty awful to try and deal with, especially if your are trying to help.
you don't know this new gp, and you seem already to feel it isn't going to be any use.
I wont post any more on this thread as I don't wish to upset you but find the whole ' i haven't had privilege of seeing a gp for 2 years' frankly odd.
Everyone has right to gp, you can call and make appt, they cannot refuse to see you .
best of luck with appt.

They did refuse to let me make appointment, and when I made appointments to discuss the consultants medication regime that they asked the GP to manage the GP said no it wasn't their job to manage them and they didn't know why I'd taken up an appointment. Same with referrals.

And then when I lost the ability to walk I was told (without a doctor having seen me) that they didn't come out to see patients anymore, so I must have telephone appointments as it wasn't anythjng to do with them that I couldn't physically get to the surgery.

So that meant I haven't seen a GP for almost 2 years to date. They are happy to not see me and just prescribe repeat prescriptions of ever increasing strengths, or even new ones without ever doing a face to face check up.

For example, a gp put me on Oramorph without having seen me, would you do that?!

Then this year I was told by the receptionist that I was no longer even allowed a telephone appointment as 'I'd had too many & was wasting doctors time' and refused to leave a message for a GP querying this.

I ended up sending an email asking why this was happening, and 3 weeks later I got an official apology from the practise manager who said that this should never have happened.

The initial problem was, as far as I can work out, is a massive misunderstanding of the condition I have. It used to be considered to be a relatively minor muscular-skeletal condition, and that's what many doctors have been taught.

It's now understood to be a highly complex multi-system condition which can be fatal dependent on type and severity. And needs active management from HCPs to stop secondary conditions developing.

But you try telling someone that once they've decided you're a pathetic time waster ... And its a vicious circle, the more I didn't get all the disabling injuries and deteriorations and emergencies documented, the less my condition is reflected in my medical notes.

I've decided that if I go tomorrow I won't say anything, as everything j say comes out wrong and is used as a reason to disbelieve me.

I'm just going to ask him is he's heard of my condition and what he thinks it entails.

Then I will ask him how he would nornal help a patient manage a complex and difficult condition.

And that's it. There's no point in trying to get him to do anything if he's going to have me down as a time waster or 'it's all in my head'.

" They are happy to not see me and just prescribe repeat prescriptions of ever increasing strengths, or even new ones without ever doing a face to face check up."

I find that extremely worrying. Our practice is very strict about seeing patients for prescription reviews. Is changing practices possible?

OP do you have EDS? If so, I do too and I know how difficult and disabling it can be.

Well quite. My friend (a doctor) phoned up to try and sort it out, but she got shouted at as well, she came off the phone completely taken back. Then things got really bad after that :(

It was such a relief when the complex pain team decided to dramatically revise all the drugs I was on whilst in hospital. They asked a few questions and then I could see them exchanging looks with each other, and they said they'd get to the bottom of it and find something that worked and don't you worry about it. And that's the first time in a very long time I was approached as a patient a doc wanted to help get better, vs the brush off already happening before I've even opened my mouth.

Imagine being put on higher & higher amounts of opiates, never even seeing me or doing even basic obs, whilst refusing to refer to me to the recommended consultants who would help with the causes of pain.

Yes I was very very scared.

But I'd already moved GPs a few years ago for not believing me when I started to get symptoms first of all. So I felt like I can't move again as I'm too embarassed that I can't even get basic health care for myself, how shit am I?

I just looked up what my died died of, its really upsetting to read :-(

not sure i can do this tomorrow. don't think i'll make it through the door without having a panic attack or sounding like a loon. people already think i'm a loon on this thread, what the hell is he going to think i am when he sees me in rl

Really, I'd go with Twodogs's phrasing.

If you ask questions like you've planned, the GP will feel you're assessing his suitability (which you quite rightly are), and the damage to his ego will lead nowhere good.

Whereas with Twodogs' phrasing, you give him information he needs, and you observe the way he responds without sounding like you're assessing him.
Win win.

In fact, this approach also offers him the opportunity to be the heroic rescuer, who listens and takes action where others failed, if his ego tends that way. (Sad to have to think like this, but hey ho.)

Oh god, cross-posted with you.

Do you want to talk about what your dad died of, or is thinking about it making your panic worse right now?

I know your sister died of what you have. I'm so sorry.

So, for tomorrow, you could write down:

1. I have a complex and rare condition, X. I find it frustrating when HCPs do not listen to me or my consultant.

1. My sister died of this condition.

1. I have been told that I need x procedure done urgently. I would like to be referred to a different hospital for this as I had a bad experience at hospital y and would like to be treated by a different team.

1. Consultant x has recommended drug y. I need to start this ASAP: could this be prescribed now or shall I make another appointment this week to discuss it with you?

This provides the starting points, even if the GP wants to bat some of that to further appointments.

Hope DS's ear is better in the morning. Will be thinking of you tomorrow.

How did it go today?

Hope today went OK.

Hope it went ok x

Thanks
For
Your
Thoughts

It went ok ish, not badly at least. But ds was poorly and I had to go back to the gp twice, once for me, once for him, and itsthe kind of thing carers & nannies can't do so totally overdid it and now that's what they'll tjink my level of functioning is, vs half killing me.

Now my carer didn't turn up and today is screwed too & I'm so far past the line it's ridiculous. V dodgy territory indeed & am so worried about the potential results :(

& yes to prev post from before, my sister died of eds though not diagnosed in her life time. And my dad died in jan also likely eds.

Glad it wasn't a bust. Small beginnings...

And you can always say next time, "To give you some idea of my functioning , coming to see you three times that week left me [details, recovery time]."

What a day for your carer to not turn up, though! Ye gods!

I thought so, what you were saying rang so many bells for me. I'm also badly affected. I'm seriously disabled, a wheelchair user (powerchair as my shoulders are so unstable) and often bedbound, like most of this week. My DH is my fulltime carer. I know how hard things can be. I'm so sorry for your losses, I've also lost people through this horrible illness (many people in my family are affected). Good luck with the doctors, I hope you can find someone who listens

Did he tell you what they are going to do next?

At the very least, I think the pain management need to help you find an advocate to go to appointments with you.

You also need to change GP's. A totally different condition, but my brother is diabetic, when he was 16 a Gp unfortunately prescribed 3 x too much insulin and DB ended up on life support in a coma. After he recovered, he had no trust in Gp so requested a practise move - Gp promptly kicked my whole family off his books.
The management of this practise (not necessarily the gp's themselves)
sound like they are making huge faults in your care. Somehow, you need joined up thinking between the different teams involved and I would hope even the pain management team would know of a better Gp practise, as its often known where there are practises with gps who may be particularly knowledgeable about certain things - as an example, one of my gps is known to have a lot of 'bone' knowledge as he has done a lot of research on orthopedics as well as being a gp)
at the very least someone/an advocate needs to push for home visits. I work within adult social care and some practises don't get it - one elderly gentleman suddenly received all gp visits at home after a senior nursing sister completely bollocked the gp practise for basically causing a hospital admission due to failure in their duty of care, so you need to have that advocate shouting for you.

Oh Rainbow I'm sorry you know only too well this fucking evil bastard condition (sorry not acquired much dignified resignation as yet). I've not met anyone who's had the fatal version in their famoly. And m sorry you have too.

My dad didn't tell them about the eds. I wonder if the outcome would have been different if he had. Denial to the end. Literally. Stupid I know.

How's the electric wheelchair? I use a scooter as I can use elbows/ big handbag to prop self up on and move legs around (am tall), i feel less vulnerable with the bit at the front but it's not v good for inside and iffy flustered when trying to manoeuvre it round small spaces when being watched.

I might be imagining it but I thjnk Pausing might be one of the 'rather rubbish club & wish we weren't' members club too?

The GP seemed willing to help, but I had such trouble even meeting his eyes and I was shaking so I must have seemed v odd! I mentioned the Physio a lot and how she said he was great so I hope that helped...

Then he had a sensible conversation about the surgery and didn't close ranks when I told him why, which I was v worried about. He's referred me to the same Hosp as my eds consultant so hoping they'll have more familiarity with it and will even be able to communicate if needs be (I say v hopefully knowing the nhs!).

And he did prescribe the migraine meds the neurologist suggested, even though he hadn't received the consultant letter yet, so that must mean he trusts me actually? Hadn't thought about that.

And has referred me for a psych mh review (whatever that means) after a long conversation about what I wanted out of it & why a general counselling thing wasn't helpful. They'll take some details then decide who I should see eg psycraitrist, psychologist or someone else...

Sorry I knkw there r typos but thumbs dislocated and am on the move anyway with DS .,,