What do want/appreciate from your GP / PCP?

[olliec]

I grabbed an opportunity to write a patient piece for a magazine in the UK, with a readership of doctors, mainly GPs (general practitioners, what I think my American friends call primary care physicians). The article can't be controversial and is very short. I'm likely to focus on things we patients want from our doctors, and I'm referring specifically to the GP/PCP and NOT the specialist some are lucky enough to be referred to. My aim is to get some information in there about things all GPs/PCPs can do to help their patients, even when we have no aetiology or widely accepted treatments.

Within the confines of the current (unsatisfactory) situation where treatment is limited, what CAN our primary care doctors (not the specialists) do for us that will help, and that we appreciate? GP/PCPs are generalists by nature, but for many people it's the only doctor they have.

Here's a few things that I am aware of that are appreciated and helpful, even when proper treatment is missing:

- Listen to the patient, and don't jump to a conclusion they may have a psychiatric illness
- Say something like "I can see how sick you are, I'm sorry we don't know the cause, but I'll still help you as best I can with your worst symptoms"
- Treat sleep
- Treat circulatory symptoms
- Dietary & lifestyle recommendations
- Monitor nutritional, cholesterol status, etc
- Be alert to new additional diagnoses over time
- Read the CCC/ICC

Appreciate any thoughts you can offer.

 

[Valentijn]

This is a somewhat similar to your first point, but: "Medically unexplained symptoms should never be assumed to be psychosomatic."

And "Many ME/CFS patients have chronically active bacterial and/or viral infections which should be investigated and treated."

 

[ukxmrv]

1. print a record of every appointment as per what has been typed on the screen by the doctor and give it to the patient
2. Make sure that the patient has copies of every referral and every blood test if they want them
3. Arrange for the clinic nurse or someone to take bloods from disabled people who cannot travel to a hospital or clinic further afield
4. Don't come into the waiting room, bark my name and then disappear out a door somewhere. Remember that disabled and sick people cannot walk as quickly as a doctor
5. Realise that for a working person losing their job is a major disaster. We don't all get invalided off to a fat NHS pension (like one of my useless GP's)
6. Respond to requests for help with benefits with respect and consideration
7. If a test result hasn't turned up find out why yourself or get someone else to do. If the later it is your responsibility to make sure that they actually do it
8. When you get a pay rise to help with chronic conditions maybe learn something more about what chronic conditions your patients have
9. If you patient gets a bad deal with expert x then refer them to expert y without a fuss
10. At least have the courtesy to tell patients that they can contact the PCT if they want a particular drug prescribed and you won't do it because you are scared of the PCT / any other reason
11. If the hospital send the appointment to the breast cancer clinic to the wrong address because someone in your clinic did a typo, don't make the patient have to see you for another appointment and begin the whole process again
12. don't keep blaming symptoms on lifestyle factors or obesity if there is no evidence
13. Please don't lecture me on antibiotic resistance again
14. Please do not offer tests that are a waste of my time or treatments that you get paid to offer to x number of patients
15. Please do not refuse to refer me to an appropriate specialist when you attempts to manage a symptom or condition fail. My sinus infection didn't go away just because you didn't "believe that anyone could get a chronic sinus infection"
16. When I report an adverse reaction to a drug don't tell me that it will go away in time. You should know by now that this never happens.
17. Don't ask me to consider a graded exercise program or CBT again. If you look through my medical records you will see that I have already tried this approach
18. Remember that a university education is common now. Patients can read the medical journals and understand them as well as you can.
19. Don't lie to me about a drug or a medical report or a medical paper. It just makes you look stupid
20. If you don't understand me then ask questions
21. Crying doesn't mean I have a mental illness



that's just for starters!

 

[Ema]

A little bit of humility goes a long way. Going to medical school was just the beginning, not the end, of your learning.

When you order tests, know what you are testing and what you expect to learn from the tests. Don't order expensive tests just for the heck of it, never to be referred to again (other than as "normal").

Don't refuse to manage pain appropriately because you are more concerned about your license than the patient's well being. Not everyone in pain is a drug addict in waiting.

Antidepressants are not the be-all end-all of treatment for "unexplained" illnesses. First do no harm.

Use the license which you were granted to help patients get well, not make pharmaceutical companies rich(er).

(That's all non-controversial, right???)

Ema

 

[Esther12]

Honesty.

Honesty.

Honesty.

No 'reassurance', no construction of empowering formulations of illness, no 'encouragement' to engage in this or that behaviour or treatment - just an honest presentation of the evidence, and an assumption that I am able to decide for myself how I want to proceed with my life.

If there is no good understanding of the cause of illness, be honest about that. Be honest about the limitations of any proposed treatments. If a doctor chooses to define 'recovery' in the ridiculous way we saw with PACE, then they have a responsibility to go in to the details, and explain that they are using the word 'recovery' in an unusual way, that does not mean what most people would expect it to.

With CFS, once exclusionary diagnoses have been thoroughly explored, I think it's best for doctors to leave their patients alone. Offer to be supportive when asked, but don't feel that you should try to 'manage' the patient when there is no good evidence as to what 'management' is best for them. There may be additional problems or symptoms which could be treated, but generally I think that a lot of harm has been done by the infliction of management on patients who never consented to being managed.

Informed consent is vitally important, and has been sadly lacking with many psychosocial approaches to CFS.

edit: PS - best of luck with the article. It would be great to have more patients given a platform to say what it is that they want, rather than having those claiming to be experts saying what it is that should be done to patients.

 

[NilaJones]

What I appreciate about my doc:

She responds intelligently and helpfully to the research I do. When I bring in papers from medical journals, she discusses them with me and gives me her point of view, tells me relevant biomedical facts, experience she's had with other patients, etc. She is almost always willing to order tests or prescribe medications that I request, and, if not, she has a good reason.

What I wish for:

A doc who does her own research.

Timely paperwork on tests, referrals, etc., that she has promised to order. I don't like to have to have multiple appointments (at $200 a pop, here in the US) for the same piece of paper.

 

[Moxie]

What do I want? I want her to fix me.

But barring that, I want her to believe me when I present my symptoms to her, and do her best to understand what's happening. Learn from me so she might better help the next person she sees. Be willing to explore and be thorough. Be dogged. If I haven't given up being poked and prodded, I don't want her to give up looking either. Keep an open mind when considering options, both when choosing diagnostics and when choosing treatments.

Acknowledge that zebras are rare, but they do occur in nature.

 

[Moxie]

Oh, and please, please..follow up.

 

[WillowJ]

Don't assume it's depression or stress. If you're thinking about this, inquire, but listen carefully to the response.

Don't be afraid to not know. We don't expect you to know everything. We would far rather hear you say you don't know (and all of medicine doesn't know, or you will try to find out, or you will suggest a referral or a referral under x circumstances, whichever is pertinent) than the games doctors play when they don't want to admit (maybe even to themselves) they don't know.

Don't ever say, "well it's a relief that disease x or complication y is not the problem [I can relax now and you can quit worrying]". Ruling something out is Thomas Edison progress; you may still need to keep looking for the answer (or if there really truly is none, at least be as alert as you can). Reassurance is not going to make us stop being ill. (we tried that already :b )

The kind of reassurance we need from you is that you believe us, you understand that we are ill and disabled, and that you will keep trying to help.

Things they can do to help:
1) give assessments which check functional status (washing, dressing, eating, meal preparation, household responsibilities, work responsibilities, shopping) and cognitive status so that there is a record of these (and so the doc knows what we can and cannot do and can make recommendations/ referrals accordingly). pain and symptoms might be useful also. There are subscription ones and free ones.

2) assess and treat symptoms or refer for proper workup and treatment (e.g. pain, shortness of breath, sleep problems, migraines, GI disturbance, orthostatic intolerance, infections, seizures). Just because there are no agreed diagnostic tests doesn't mean all the symptoms are mysterious. They're caused by something. For example, for SOB consider: COPD-type problems, lung muscle weakness, heart issues, and infections, all of which are known in the ME population (they will likely need to enlist one or more specialists).

3) realize that the patient might be having difficulty communicating. give them extra time to finish the sentence, or ask them to come prepared with a list (be prepared for this to be overwhelmingly long; select priorities in consultation with the patient and then work through the list gradually, reassessing priorities from time to time). If you can't understand what they are getting at or if something doesn't make sense with what they've said before, ask them to rephrase or clarify. If you still can't understand, ask next time.

 

[Bead Dog]

Please be on time for my appointment. I respect your schedule, please respect mine too.

 

[WillowJ]

and thanks, ollie