Terrified of GPs, don't know when to go or not

[DoubleLifeIsALifeHalved]

Kind of a follow on thread on my concussion thread really... Raised some questions I'd really like your thoughts on

I have a ongoing illness which has made me disabled 4 yrs ago, and it's a constant struggle to manage and get the right medical input. It's rare and misunderstood and GPs don't understand it at all. It also goes across specialisms so every time it progresses I have to have new referrals, which gps hate and frequently refuse to refer even though consultants are saying they must as a matter of priority.

I vaguely manage between specialist letters directing the gp to do stuff/ prescribe/ refer and then me begging until it gets done, but it's been a huge problem in the past and it's left me in a precarious position as no one is actually managing medications or day to day care.

The long term solution is paying for private care (did that last year too), but I don't know what to do about the minor everyday stuff...

Tension between the benefit of going and pain and effort needed to get to the gp ... And the fear I have about going .

gps have been awful in the past and actively obstructed essential care and accuse me of being mad rather than physically ill (ignoring multiple consultants).

The worst thing is I act mad around gps as I'm so scared and upset I just cry hysterically. I'm crying even writing this ffs. Seriously completely breaking down, it's ridiculous.

But because I never go to see them there is no log of anything so it looks like nothing's wrong and allows them to say its in my head even more...

So my question is, how do I know when I should go to the gp or not?

• concussion seems to be wearing off, do i still push to see a gp? Should I be telling them whenever I injure myself through falls?

• I've burnt my back by over using heat packs on my lower back (only pain relief that works currently). The skin is mottled dark brown weird rings going deep into the skin and peeling a bit on top. Should I tell them? Or will they just say I've done it to myself and to stop it and I'm crazy for having done it

• I have a Lump on my leg which I don't dare bring up because I'm scared they'll say I'm paranoid and making stuff up because I'm crazy

• My pain killer patches keep falling off in the heat and they aren't working v well anyway, in an ideal world I need someone to revisit my pain relief and adjust, but I think if I bring it up they'll just shout at me or refuse to prescribe it

(every repeat prescription is like this, gp receptionists often refue stuff for no reason/ their own mistakes and try and leave me without medications that have massive physical side effects with withdrawal...)

I'm in such a state about this, I know i sound crazy and paranoid and probably wholly unreliable, but this is what happens when your life collapses and you aren't in power of your basic existence and people treat you badly

Sorry to hear of your issues. I would suggest that you take another trusted adult with you to GP appointments...they cannot refuse this, it is your right to have a 'support person' present.
Could you change GP practice, as another option?

You should also write letters of complaint to the Practice Manager when you have issues and copy in the relevant NHS authority...they may then pull up their socks a bit.

Change doctors it doesnt sound like they are very understanding

I tried complaining last summer and the effort made my condition worsen, and this is when all the nastiness was happening. My gp was on mat leave, and the other gp i saw was horrible and then the practise backed her up and were shockingly bad.

accusing me of bein depressed and anxious and imagining the pain. Telling me im not really ill, refusing to refer to consultants even when my main consultant wrote 4 times asking etc

kept over ruling me when I said the medication mix was giving me untenable side effects and they said 'we've reviewed the meds and they are fine!' without even asking / listening to what the side effects were! Side effects like heart palpitations, lowered blood pressure, profuse sweating, migraines, black outs... suicidal thoughts etc

I went privately to a pain consultant who took me off two of the meds and it took 8 months before I could get off them as was on crazy above max doses... And needed other drugs in place to take over etc. But then felt massively better.

My friend phoned them at that time and shes a kick arse retired consultant who is v authoritative and was shocked by the blaming unpleasantness of the surgery...

Then the gp who d been away on mat leave came back and was a bit better but still obviously not great...

BUT this one was better than the last surgery who refused to even investigate the symptoms at the beginning of when I was getting ill, and I changed surgeries and this was supposed to be the better one

Basically I'm a waste of time, a drain on the system and require expertise in managing a condition beyond their experience/ expertise and no gp practise wants someone like me :(

In just wondering really... Should someone go to the doctors for :

• a concussion that's getting a bit better now l
• burns on back
• lump on leg/ hand
• problems with using patches medication...
• and previous stuff like running foot over by mobility scooter, massive bruising some swelling

Ok have an appointment today, what do i say? How much do I raise? It's one thing per appointment yes?

You say I have several things I need to discuss, shall I show you my list? Then your GP can decide how to tackle things. Does sound too much for one appointment tbh. Good luck.

Ps write your list in order of priority as you see it.

I dont have a priority, I d rather eat glass than see a gp, it's just I think I should see one as avoiding it is accumulating problems. I'm crying again. I expect I'll get told I'm a useless waste again

Take your retired consultant friend along....

Shes in Thailand

I've had the weird mottled look on my back from overuse of heat, no peeling, though. A consultant anaesthetist saw it when doing a spinal block and pointed it out to his juniors. It had a name, though cant remember what. He didn't say I should stop using the heat, but obviously if the skin is peeling you need to moderate use. Can you use a hot water bottle with a cover instead? Also you know never to stick the patch on your skin?

Re patches falling off, I wonder if a pharmacist would be able to advise.