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

[Twodogsandahooch]

Miscellaneous - first thing I think you need to do is think about the most important things that you need to sort out tomorrow.

From reading your other thread and your list here - I would say the priorities are getting your referred to a different unit for a surgical opinion and making sure that you can get hold of the new drugs that you have been advised to take for your condition. Maybe focus on these and it won't seem so daunting.

Remember you don't necessarily need to go into why you want to change hospitals.

[MiscellaneousAssortment]

Do you think I should tell him about the huge list of other stuff?

To give him an idea of the bigger picture and give him an insight into why I need a GP to actually help?

Or not?

And how to communicate all the different bits of the illness? The main problem is its a systemic condition but has a crappy reputation where docs know nothing about it or what they do know is completely wrong...

Has anyone ever actually given a GP notes or a hand out of my condition? I see it suggested on here a lot, that people say 'print out this thread and show it to the doctor' - but I've never known anyone do something like that in real life?

[Musicaltheatremum]

I think you should write all this down and let home have it to read after the appointment. This is not going to get sorted in one double appointment. It is going to take several appointments to do this. I think getting through 1 and 2 might be achievable. The GP will need to read your notes fully although from looking at your OP it seems he may have as he has agreed you need treating and managed appropriately.
Good luck but this will take a lot of time to sort and time is not common in the NHS at the moment.

[Musicaltheatremum]

Just read your update. This sounds as if it is a difficult condition and there should probably be some joined up thinking between the hospital and the GP but often there isn't. Do you have any information sheets on the condition you could give to the GP. With something unusual I'm always willing to receive stuff. I am a generalist not a specialist and it annoys me that some hospital docs expect us to know a lot about everything.

[Bunbaker]

I remember you wrote a list of your issues on another thread. Is it possible that you can get this to the GP before he/she sees you on Monday so that they can read up about it and you aren't having to start from scratch again?

I wish you well, I know you have been having a hard time

[MiscellaneousAssortment]

The practice have a general email address. Could I / should I send him something before the appointment , or better to bring it with for him to read afterwards?

It's difficult because I've been refused any help for years so now it needs time to sort out but if this had been spread over the years it wouldn't have taken any particular investment of time :(

I am really scared I won't come across properly. If I am all focused and efficient, they don't believe I'm ill. And if I show how ill and vulnerable I really am they generally want me to piss off asap before they might have to do something.

Eg My pancreatitis went undiagnosed for two years as the GP told me 'you can't possibly have two referrals as the consultant has requested. It's too many and if they thought it was important they'd have done it themselves. So Misc you need to choose, which referral do you want me to make?' Complete with brusque and grumpy mannerisms which made me feel like saying neither and running away... As it was I obviously 'chose' the wrong one. The choice was between urinary incontinence and terrible stomach pain. Great choice huh?

[Bunbaker]

The problem with a general email is that everyone will read your email. Could you ring the surgery tomorrow and ask for the doctor's secretary's email address?

[MiscellaneousAssortment]

Oh I just realised what someone wrote - sorry, took a while to percolate through!

So I don't necessarily havd to tell the GP why I'm trying to find a mother consultant / hospital for the op?

What would I say?

(Thanks so much, I know I've posted two threads here in two weeks and my posts are long and rambly. Thanks for supporting me and trying not get through the tangled knot that is me at the moment! I don't have any rl people to talk to)

[GiddyOnZackHunt]

I do think writing things down is very useful. Treat it like a meeting with an agenda. Don't get sidetracked. Write it down and leave it with the GP to refer to. They can call you if they need further information.
Presenting yourself as organised and focused helps your case.
Can you pop a hard copy down to the surgery tomorrow?

[PausingFlatly]

Would it help to say, "I know I come across as efficient and lively in meetings, but I throw everything I've got at a meeting and need to sleep immediately afterwards."

[MiscellaneousAssortment]

They only let patients have the main one which goes through the office manager.

When I was still trying to get them to engage with me, I used to email to follow up on requests, and the office manager used to send snippy mails back refusing to pass on my nails unless each one was a separate stand alone mail and not a reply. The reason being she had to print out each mail to give to the gps and it 'used too much paper' to print out a whole email plus reply.

I bit my lip for ages before enquiring why do they have to print out all the pages, or in fact why print it at all? I was expecting to hear maybe they need it for records or its policy or something. The reply was that 'their printer didn't have that function' (!) and that gps don't have time to use computers

I on the other hand was trying to have a sensible conversation that linked to the original request as if I send fresh emails each the doctor wouldn't remember what had happened earlier or why I was asking for X. It was like having a conversation with a goldfish :(

There are pretty impenetrable barriers set between the public and doctors. Even when a doctor has asked me to call back urgently I've been refused by reception to actually get through to the doctor, and they also refused to give a message to the doctor... They told me if it was that urgent I should go to a&e. I didn't even know why the doc was trying to get hold of me! And then the doctor ends up pissed off with me for not returning his call. Grrrr.

[MiscellaneousAssortment]

I haven't written it yet!

I do say to all docs that attending this appointment means I will have sustained soft tissue damage or dislocations etc, and will be completely bed bound and unable to do even basic functioning for 4+ days after. And that most times I will have a migraine (actually a cervicogenic headache) within hours of doing something like this, caused by neck problems.

But it doesn't seem to help. There's probably something bad written in my files. I know they didn't even write down my condition on the front page of my file - the one that gives an 'at a glance' overview. A trainee gp I saw last year askede if I was very recently diagnosed as my notes made her expect to see a perfectly healthy person rather than me. I asked if she could put it on but don't know if it ever happened.

The pain team were the first people to just believe me and try and help, in a very long time. The neurologist I saw yesterday also seemed to believe me. It was weird. I wasn't quite sure what to say as he just kept nodding and then waiting for me to speak, making notes, not cutting me off or me having to justify myself or hunt around for examples that might make him understand. Btw the neuro was a referral the pain team did then the physio expedited.

That's partly my problem, I don't know how to act like a proper person anymore.

What should I say to introduce myself? And get us talking about the right things?

[MollyAir]

Dear God, Miscellaneous, good luck with this. I really hope the MN GPs can advise you. There must be protocols for patients with complex problems. At least you have the power of Mumsnet behind you.

I personally feel there ought to be people like McKenzie friends to help patients who can't deal with the NHS on their own - for whatever reason. Maybe there are such people?

[MollyAir]

These people might be able to help in the longer term:

en.wikipedia.org/wiki/Patients_Association

It's probably asking for the moon, but if you have a friend or relative who works for the NHS and you can take them along to speak for you, it would help.

[AwkwardSquad]

Hi OP, it sounds as though you might benefit from advocacy support. Have a look here www.nhs.uk/conditions/social-care-and-support-guide/pages/advocacy-services.aspx - there are several organisations which might be able to help. Also look up advocacy on your local council's website.

[Twodogsandahooch]

Miscellaneous I agree writing it down will help but again I would try to be fairly concise otherwise your main issues might get lost for example

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

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?

It can be overwhelming when patients come in with very long lists - you almost don't know where to start. This is why I think you should prioritise your main problems for Monday. Building a relationship with this Gp will take time.

[Clarella]

I have handed over a very concise list of symptoms, a list of questions and a print out of a paper that demonstrated interaction between a drug I was on and my conditions medication (only thyroid but important!). I too get extremely distressed seeing gps after being dismissed for years or not really treating my condition properly, but also as I feel crap at the time too and it impacts on my social life and groups and work etc.

You could hand things over including questions and an information leaflet and suggest a second double appt to go through everything. He might appreciate the time to digest?

Are there any nice guidelines on your condition? I think it's a good idea to give these - you can apologise as you hand it over but emphasise you feel it's the best way to communicate what you need to as you feel so extremely worried about everything.

I recently heard that our local hospital has a psychology service specifically for people with conditions being treated by consultants at that hospital - so they support the psych side.

I've been receiving CAT to help with a kind of ptsd associated with my condition as I bizarrely ran into complications and became very physically ill. The mh side of it has been caused by the stress of trying to communicate with Gps and work through what was going on, and deal with guilt and attitudes at work.

I've actually found typing my lists and questions up not only looks better and easier to read, but it can be reviewed and edited to exactly what you want and in a really concise way - I think concise helps. I've also found it's helpful for referring back to and or editing for consultants.

A similar thing could help explain issues when having smears etc.

All the best

[MatildaTheCat]

OP, I see you are already under a Pain Management team. I have accessed great counselling with a Doctor of psychology via mine. It's not very frequent but she has been a great support and I've been going for 18months plus with no hint that I will be discharged. She is very used to the issues you mention.

Just an idea for you to consider because I was able to virtually self refer to that once I was in their system. Worth a phone call and your GP probably wouldn't even know this existed.

Good luck with your appointment. I hope you can make 'friends' with the new GP and form a good working relationship. My GP allows me great autonomy and encourages me to make suggestions and even google! She also takes my phone calls despite the receptionists not thinking this even possible.

[MiscellaneousAssortment]

Crap I'm not well enough to do any computer work :(

Argghhhhhh. Hope I feel better tomorrow.

[PausingFlatly]

Sleep well. Hope you wake reasonably refreshed.

[MiscellaneousAssortment]

Ok. Sooo. Any advice for emergency change in preparation... Ie the no prep plan for gp appointment???

In short ARGHHH!!!

I've been flat on back with ice packs in a darkened room. unable to move neck in agony and vomitting every so often :(

Apart from a 2 hr stint last night trying to unblock the toilet that my carer blocked up then left (grr).

After emergency plumber taking all remaining emery/ mobility, I'm screwed for tomorrow's appointment.

What can I do? How can I prep in no time? Any point in writing a super short list for him? But can't write the description of my illness & all the symptoms and issjes I have, as would be too much for me now... Shit shit shit

[theredjellybean]

miscellaneous it does sound difficult and i understand your frustrations but bear in mind a double appt is only 20 mins and you are not the only patient that GP has to see tomorrow. You need to identify what is absolute priority to be sorted and you may have to then accept making another appt so you can continue to discuss/ and co-ordinate with the gp.
I would not be able to sort all that lot out in one double appt, and often ask patients if we can take one thing at a time, otherwise things are rushed and never very satisfactory for patient or doctor.
write a list with number 1 being what you have to have sorted by end of appt and then go from there.
try to go with an open mind and thought that this is just the start of a new working relationship with a clean slate with new GP . So if they cannot wave a wand over everything in 20 mins dont feel let down or pissed off.
good luck and hope the gp is kind and compassionate

[PausingFlatly]

Go for what Twodogsandahooch said above, and write it down - on your screen if you don't have energy to print it out:

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

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?

[PausingFlatly]

Even if you need a second appointment to sort out some of the above, that short list will give the GP the starting points.