For most people a visit to the gp is a quick 5-10min job to have a sore throat or upset stomach checked out.
For people with Ehlers Danlos and other multi-system conditions it’s a mammoth task that needs preparation and the ability to keep it together under pressure better than a politician on a pre-election live TV debate!
Quite often you don’t just have one thing you need to see the gp about, there’s a list. You have a new pain or symptom that needs attention, you need a referral to a new specialist or refferred back to a previous one because an old problem has reamerged. You need one of your medications looked at because its interacting with another and causing problems. You need your ribs checking because you dislocated them badly sneezing, oh and that reminds you, can you please have the flu jab you made the appointment for in the first place!
Its no surprise that your gp is stressed and flustered by the end and you are almost in tears.
You are half way home and realise you forgot to ask for a months supply of pain medication and your gp has forgotten you wanted referring to another specialist so you have to chase him up about it in a few months time when you realise the referral hasn’t been done.
GP appointments don’t have to be like this. Your gp is your front line guy, the one in charge of your medical care and the guy you HAVE to have on your side right from the start.
Your gp and you should be a team working together not at loggerheads fighting and dreading every meeting.
Quite often I hear about EDSers having gps who started out ok but then they start having problems and eventually they have to move on and find another:
“He used to be really patient with me and very understanding. He would really listen to my concerns and always refer me to the specialists I needed. Now he rolls his eyes when I walk in his office and I’m having a hard time getting him to re-evaluate my pain medication”
I myself am having similar problems. My gp was very patient with me and never questioned my requests for referrals or treatments. The past few appointments however have had me in tears and him not making any changes to my medications. Iv even been told I can’t be referred to an essential specialist for my GI issues and have to stay within my local PCT when he said previously he would refer me to the specialist once my rheumatologist gave him the nod.
I understand where I have gone wrong though and caused my own problems. I’ve learnt through my own mistakes what needs to be done to ensure the best chance of having a good gp appointment.
I have now found a great female dr in the same practice which works even better for me as I can talk about the more sensitive female issues of the condition and be physically examined easily rather than the previous dr going on what symptoms I am describing alone.
So how do you give yourself more chance of a good appointment?
Here are a few tips…
1) Prepare, Prepare, Prepare.!! It’s almost like what teachers would say to you getting ready for a big exam. ‘The more you prepare and revise the easy the exam is. And the same is true for dr appointments.
If you just turn up to the appointment wanting to try new pain medication but don’t have any ideas which ones your gp has to work out which ones might be suitable for your condition, and that’s when he’s figured out if its for muscular pain, neurological pain, joint pain etc. If you have gone to EDS forums or asked other EDSers what pain meds are popular for EDS, work well and have little side effects you can suggest these to your gp who then has just a couple to choose from rather than hundreds for you to try.
Another example…you are having a lot of stomach problems and you know that this is related to EDS and you need reffereing to a gastroentologist to get it checked out. You just turn up to the appointment and say ‘I need reffereing to a GI dr’. Your gp has no idea if any of the GI specialists in the local area have even heard of EDS never mind know how to treat the GI issues. And that’s if your gp even understands this side of EDS. If you look into this yourself before the appointment you can find out what GI issues can occur in EDS, why they do, what causes them and what type of GI dr you need(functional GI, Neuro GI, etc) what tests you require if you gp can refer you straight for these (colonoscopy, slow transit, bariem xray etc).
2) Book yourself a double appointment if you have more than one (or 2 simple) issues to discuss. A single appointment is usually between 5mins and at most 7mins. Giving you both at least 10mins gives you more time so you can discuss things in full and not be rushed.
3) Write a list of the things you want to discuss. You can either hand this to your gp at the appointment or refer to it yourself. You can write notes next to the items on the list if you need to such as side effects of the medication you want reviewin, hospital details if you are asking for a referral, brief history of what happened and symptoms if you are wanting a injury looked at.
At the end of the appointment you can go down the list quickly to make sure you have covered everything.
4) Take a notebook and pen to write things down. When you have a lot of things to ask your dr he will have a lot of things to say in return. Its most likely by the time you get home you may have forgotten the correct dosage for your new medication or the name of the condition he mentioned they wanted you tested for because of your new symptoms. You can also ask your gp to write down names of over the counter medicatoin they recommend or website links etc.
5)Always take some information leaflets on EDS/HMS You can hand them one and say ‘I just wanted to give you this in case you wanted to look into anything specific on EDS or want to pass some support info on to someone else’
It’s a sneaky way of making sure they have information on your condition in case they know less than they let on. Support organisations tend to provide much better information on EDS than medical journals in terms of living with the condition so it will also provide your gp with information should they be asked to provide evidence for your disability benefit assessments.
6)If you don’t already have it, get Dr Brad Tinkle’s book ‘Joint Hypermobility Handbook’ A guide for the issues & management of Ehlers Danlos Syndrome hyper mobility type and the hypermobilility syndrome’ It covers pretty much every part of the body affected by EDS and is laid out simply and straight to the point. I take this book to all my appointments so that if I need to I can give my dr the relevant page/paragraph to quickly skim over. It also provides web links for further reading.
7)Don’t be afraid to challenge your dr. but don’t over challenge! If they are dismissing your concerns or putting an issue down to something else eg loss of appetite or digestive system problems down to depression or weight concerns, don’t confirm their lack of understanding by submitting to them.
Stand your ground if you believe your EDS is causing issues and needs looking into.
Researching any new issues before your appointment and being prepared will really help you here, especially if you can provide some printouts from the internet or a relevant page from Tinkle’s book.
‘Im sorry but I know this isn’t depression. EDS does cause problems with appetite and eating. Here in Dr Tinkle’s book its says about early satiety’.
If they still don’t take it seriously and still put it down to something other than EDS don’t get into an argument. You need a good relationship with your dr. Drs don’t often like it when the patient knows more than them so you have to handle it correctly. Something like..
‘OK,I know this isn’t depression. It is EDS causing this. But I don’t want to ruin our good relationship we have built up over it. Can we come to an agreement that if things haven’t improved in 2 weeks/a month we look at it again?’
You might face the issue of a stubborn dr like many of us have at times but if you are politely assertive rather than angry and argumentative you have much better chance of winning.
I’v had 2 appointments recently with different drs where I’v had to really stand my ground and fight. 1 eventually gave in after 20mins of telling me I was wrong, my body wasn’t doing what I was saying it was and that my medication hadn’t stopped working because of interaction from another. He was so assertive that he had ME convinced I was wrong! But I stood my ground calmly without it turning into a argument or battle of wills. I just kept saying ‘but how come I am experiencing this symptom if my body is supposedly not doing that?’, ‘can you explain again how my medication can still be working if I am experiencing this?’ etc.I asked them genuinely not ‘well explain this to me then clever clogs!’
Eventually he couldn’t explain it and had to quickly research my medication and discovered I was actually right (by this point I was convinced he was right and I was wrong!).
The other appointment I had where I had to challenge a dr was when my gp refused to believe my loss of appetite was related to my EDS. He believed it was to do with depression and being worried about weight. He just kept saying ‘Why are you telling me you are worried you can’t eat, just eat. Its not hard, put something in your mouth and swallow it’. If you are depressed you loose your appetite but you just have to force yourself, you are going to make yourself ill if you don’t eat’.
I didn’t win that one because I ended up in tears.
Keep your cool, keep collected but be prepared to loose some battles. You just have to go back and try again another time.
DO NOT PUT YOURSELF AT RISK HARM
If you believe something is seriously wrong and needs urgent attention and your gp is not taking it seriously see if you can get an appointment with another gp at the surgery. Otherwise you can go to a NHS walk-in clinic and ask to be seen by the on duty dr or go to A&E department.
8) Be honest with your gp. If you don’t want to be referred for physic say so. If you are unhappy with how your last appointment went, tell him. Your gp will appreciate your honesty.
9) Always be prepared for the appointment not to go how you expect. What will you say if your gp says he won’t refer you to the specialist you want to see? What are the other options of medication if he says you can’t have the one you wanted because it interacts with others you are on?
10)Drs are people too and have bad days like the rest of us. Sometimes that means you can be in the firing line and this can result in a disastrous appointment through no fault of your own.
For example my last appointment with my gp went something like this…
I enter the room, he’s sat at his desk not waiting at his door like usual. He’s red in the face and not smiling like normal. it’s a few days after I was admitted to hospital overnight after a faint and concerns from an on-duty Consultant of possible POTS(postural orthostatic tachycardia syndrome) resulting from my EDS.
I have my discharge letter which asks my gp to do regular monitoring of my heart rate and blood pressure and recommends a referral to a vascular specialist if I have another fall for Tilt Table testing (standard POTS test). It also says Iv been referred for an endoscopy due to concerns for my loss of appetite and swallowing difficulties. The on-duty dr tells me to see my gp as soon as I can to discuss his recommendations and ask again for a referral to the GI specialist who specialises in EDS.
My gp asks what I want. I tell him I was admitted to hospital after a fall and Iv come with the discharge note to discuss the recommendations. He has a quick read and says ‘I don’t understand, what do you want me to do?’
I tell him that the dr thinks I may have POTS and wants my blood pressure and heart rate monitored regularly and a referral to the vascular specialist If I faint again.
He replies ‘whats POTS, Iv never heard of that, is that just fainting or something? I’m not going to do your bp and heart rate, what do I need to do that for you fainted cos you’re not eating. Just stop being silly and eat. Of course you will pass out if you don’t eat.’
I am just staring at him in shock as this is totally out of character.
He continues ‘Are you worried about your weight is that why you’re not eating?
Im crying at this point so he shoves a box of tissues towards me and rolls his eyes.
That was one of the worst appointments Iv had and it was with a gp who I’v had nearly 3 years of brilliant support from. It just goes to show that drs can have really awful days too and unfortunately we sometimes get caught up in the firing line.
You have to just accept it was a bad appointment, cut your losses and go home.
Be polite as you leave. Don’t get angry or react to his bad attitude. Thank him for his time, smile and hold it together until you are out of his door.
Try not to let it affect you and especially don’t give up any of the concerns or requests you had.
Simply make another appointment at a later date if you feel you just caught him on a bad day or think about trying a different gp at the same surgery if you can.
Sometimes we can only go so far with a dr before we have to move on.
GP appointments for people with EDS can be quite an ordeal, they can be like doing a round of ‘Weakest Link’ with Anne Robinson or they can be like popping round a friends house for a cuppa and catch-up.
Whatever type of appointments you have remember your gp is crucial to your medical care so preparing well for your appointment and working as a team, not against them is how to have a good appointment.