Good and the bad.

[Silvertop46]

Good to hear that there is some GPS out there that take the time to follow up your hospital appointment. My experience is that the second my surgery haven't a clue what is going on with me. I have had lupus since 2008 my lungs heart kidneys liver and skin are involved pretty much my whole body. My main meds are myfortic and had 3 rituximab infusions. In the last 8 years I felt I have batteled against lupus and had to fight all the way to get answers. Biggest problem is dealing with Drs that have little or no knowledge of lupus. It would seem that some have the attitude that ignorance is bliss and blame me my breathlessness sore hips and so on. It took over 12onths of complaining before it was excepted that there is a problem with my heart. Could go on. Maybe in the wrong part of the country

[Lupiknits]

There can be a postcode lottery. There can be good, bad and indifferent medics, cheek by jowl, who go from saints to sinners according to which way the wind blows. My deep sympathies, and I hope your experiences improve. Too many of us with the same troubles. Yes, I'm fed up, too.

[Barnclown]

Glad you posted silvertop...yes...agreed: every time I've communicated with a GP lately, they've been totally unaware of where I am with all my multisystem clinics stuff etc. And I know I'm not the only one.

This is deeply demoralising for patients of all kinds....especially those of us living with systemic conditions with more or less every system in our bods affected. 😏 A GP I had for 10 or so years left our practice not long ago. At our last appt, I asked him if it really is necessary for me to be my own patient advocate + coordinate all my records & treatments & monitoring, or could I rely more on the GP surgery to do all this . He bluntly said: YES you do have to do all this, because our gp surgery cannot cope with doing all this for complex patients like you. I asked him: but what if I'm so poorly that I can't cope with doing all this? He looked glum & shrugged his shoulders.....

🍀🍀🍀🍀 coco

[Maureenpearl in reply to Barnclown]

I was about to reply to Silvertop46 to say you have to always tell your doctor about any appointments, treatment etc you have had at the hospital because it's much easier so the doctor can then look on their system for the letter they have received from the hospital (the letters are often put on without the doctor seeing them first).

I document everything on my iPad in notes and take it with me to see the doctors. I went to the hospital two weeks ago to see the consultants (Rheumatologist and Pulmonologist a combined clinic). I was able to give my iPad to them to see all the drugs i'm on and the ones iv'e had in the past including dates. I was thanked and told it would be wonderful if all patients could do the same as it's very difficult for them to go back and look up everything in your notes (obviously if you can't help they will find it).

The GPs don't have enough time in between patients to go through your notes before they call you in so you really have to say they should be a letter from the consultant and you can say the date of your last appointment and this will make it so much easier for them to find it on the computer.

Remember they see a lot of patients and cannot always remember each patient's individual diagnosis unless you visit the surgery regularly.

Hope this is of some help to all.

Wishing all a very Merry Christmas, Peace and a pain free day.

God bless.

Maureen 🎄

[Cas70]

I don't know where you are but I am in Surrey and I could echo your post apart from different symptoms. I have Sjogrens as well so I am up against their ignorance/ignoring the symptoms. I have a new GP (my 4th in a year) and nice as she is I know more about my malady. I wish I could think of a way to get more publicity for Lupus and Sjogrens- I do believe it is because 90% of sufferers are women! Good luck to you and all of us - we need it!