what on earth do I do?: Had an appointment... - LUPUS UK

LUPUS UK

31,709 members28,078 posts

what on earth do I do?

seanto profile image
12 Replies

Had an appointment yesterday to discuss how I feel the doctor isn't doing enough the help as I dont feel like I'm getting any better, along side the different ways I had gotten ill since I had last seen him. I was hopping it would of gone well but it kinds feels a bit like it was a waste of time.

I explained to him how the treatment plan I was on was not that effective and ended up putting me in hospital. As I wasn't warned that taking for a long period of time to try and make myself feel better could damage my stomach even when I told the doctor how much I was taking. A&E where very lovely in helping me correct the mistakes made which was lucky. Anyways I was told as I don't get enough symptoms in one go that I don't qualify for any other type of treatment and was told I should go back on the one I was on with caution this time. I was also told that I was lucky to have been able too see the doctor as most would of discharged me by now and that the doctor was only keeping me under his clinic in case one day he can help me. yet I keep going back with more symptoms to add to the ones I already have.

I have like no idea what to do and i just want to start felling a bit better.

Written by
seanto profile image
seanto
To view profiles and participate in discussions please or .
12 Replies
trueman profile image
trueman

This sounds really demoralising for you. I feel for you. I have a follow up for results various tests tomorrow and really hope I don't come out of it feeling as if I am wasting people's time or my own. It's a horrible feeling.

All I can add is don't despair. Keep on track. Stick to how you know you feel. I'm not sure we have chatted before but if you want to - happy to chat more about your symptoms. Sometimes chatting like I did in my recent post - well I drew a picture ha ha - helps to focus. So stay focused if you can. And know that there are hurdles but they can be leapt over in time.. :)

Purpletop profile image
Purpletop

You talk about "the doctor" as if there is no one else specialised to treat what you have. Is that correct? Isn't really any other specialist whom you can see instead of this patronising guy?

Because on the one hand it's shameful what you were told about what other doctors would have done in your treatment, I.e. Discharge you. How does this person know that? Secondly, if you continue having symptoms, or they progress in frequency or severity, then you need the right treatment. If these people won't believe that's achievable, then maybe it's time you sought a second opinion. If you can afford it, maybe go privately for 1 consultation and see what you're told. Then decide.

seanto profile image
seanto in reply to Purpletop

I went back to my gp before to say the doctor wasnt helping in which I was told by the gp that he would talk to the doctor. As a result I was offered the appointment I had yesterday to talk with the doctor about the fact that said doctor was not helping. Said doctor did nothing to change that even with the new information on my health that I presented him with.

I'm now a little afraid of going back to the gp in case they cant do anything as I'm still under said doctor. Though I would on the other hand love to be seen by the local lupus specialist to get a second oppion. As I feel that would be the next best option as I cant go privet as I'm an almost broke University student; other wise I would go privet without even thinking about it.

Purpletop profile image
Purpletop in reply to seanto

And here's where we make mistakes, by being afraid of going back to the GP. I'd forget about how uncomfortable the discussion might be, speak to the GP about the fact that this particular specialist isn't prepared to do anything to help you anymore. Thank the GP for talking to the doctor on your behalf, but ask him/her to help again by referring you for a second opinion to the local specialist - beg if necessary!! Say that you're desperate, you're young and want to feel good enough to follow your studies (which you can't at the moment) and live your life but can't because your symptoms are not properly controlled.

No doctor can say that there isn't anything more he/she can do for you until that doctor has got you to try all the drugs, then all the many combinations of drugs and saw that you failed to improve. This is the message to the GP - this guy knows only one treatment. I need to see someone who can think outside the box and could offer alternatives, at least to try to improve.

Be strong, go back and fight for yourself. We will all be rooting for you.

seanto profile image
seanto in reply to Purpletop

thanks for the reply. I plucked up the curige to ring the surgery and luckily I was able to book an in house appointment with the doctor. I am then seeing my mental health and well being specialist tomorrow. so im going to go through with her everything that I need to make sure I mention and the right way of doing so. I want to be able do it in a professional manner so I dont end up taking out the frustration I have on the consultant on the nice doctor as I know its not his fault.

diane1428 profile image
diane1428

I really feel for you. My gps just panic n send me to hospital or my Rheumy. Had my Rheumy appt last week and was really upbeat. Thought it went well until Saturday when I got his covering letter which said he couldn't do anything more for me on present meds and I'm grumpily carrying on. GRUMPILY come on.

Hope my gps don't think it's another symptom🤔🤔🤔🤔

friars126 profile image
friars126

Hi Seanto,

It's hard for some of us (and in that I include myself) to stick up for ourselves. However, of you feel there are other treatments you could be receiving and you're not, or that your symptoms are not being taken seriously, then you have every right to ask to see someone else. That request cannot be denied, it is your right. I understand it might be difficult to insist but you'll feel so much better if you feel listened to by another specialist, it would all be worth it. You could always put it in writing if you'd rather not ask face-to-face.

Friars x

Barnclown profile image
Barnclown

Great discussion, seanto...not much for me to add except:

My understanding is that NHS England rules make you entitled to a second opinion and a referral to a GP &/or specialist of your choice. Asking GPs to document things can get them to look harder at your case....try asking for your GP's clinical rationale in writing explaining this way of handling your case...and make sure he/she has put your request and his/her reaction in your notes...this means your GP can't then deny how your discussions have gone.

This is a link to your legal rights as a patient:

citizensadvice.org.uk/healt...

Please let us know how you get on

🍀🍀🍀🍀 coco

seanto profile image
seanto in reply to Barnclown

thanks for this information. from what i have read your entitled to one but by law the nhs doesn't have to give it. Though I cant see myself being denied for it. I also have an appointment with the doctor soon so hopefully it will all go well as he has been quite helpful in the past.

Barnclown profile image
Barnclown in reply to seanto

Good luck: wishing you success 🍀🍀🍀🍀

seanto profile image
seanto in reply to Barnclown

thank you so much. =]

nita57 profile image
nita57

Hi there. Is a shame plodding along with illness. Pain etc I know. But what can drs do ??, I can't have no pain relief because my sever reactions to cheep nasty chemical's. Food /drink with added stuff . I asked the specialist at the hospital. Do you have a magic wand for me they said no sorry not much can be done for me. I rest lots keep my mind bizy. And spend time keeping mentally bizy. As my body so ouch. Hope you feel more ore comfy soon

You may also like...

What on earth is Chilblains Lupus?

appointment never had any obvious symptoms, certainly not one's that couldn't be attributed to...

I don't know what to do?

about march/april time so I'm not sure if you are supposed to get help for things like this or if...

Doctors today what do I do

I have posted a few times on here I go to doctors today.To see if I can get to see a knee man and...

what do I do

her health quicker. I’m asking for help/advice on what I can do, how people with SLE are dealing...

What can I do? Help please?

rhumotolgist about 3 months in and told her I had not noticed a difference. She told me to increase...