POZ Community Forums
Main Forums => Living With HIV => Topic started by: Londonguy on June 08, 2006, 04:25:12 pm
-
I think this is going to be quite a long post so don't start reading it if you have stuff to do lol.
Some background to this....I was diagnosed a year ago with CD4 of 420 and a VL of 20,000 in March 2005. My figures stayed pretty constant, despite having to be treated for Syphilis in July. The syphilis mustn't have been cleared properly because it came back earlier this year, along with a rash, lesions on my hands and feet and patchy hair loss. This was accompanied by a drop in my CD4 to around 200, although my VL's have always stayed pretty constant. For a few months they've been expecting my CD4 count to go up since the syphilis has been treated but it hasn't, culminating in me being told by 2 different doctors that they thought I should start on meds today, despite my last blood test being delivered so late that they weren't able to do a CD4 count on it.
So the past week I've been reading up on the meds and preparing myself for taking them. I go into the clinic today and see a different person for the third appointment running. The first thing she does is tell me that she wasn't meant to be working so late and that technically I shouldn't have been booked to see her because she should be going home right now. Nice welcome. She has a quick flick through my file, obviously knowing nothing about me, and tells me that she doesn't think I should start on meds. She tells me that two of my past blood tests didn't arrive for testing until the next day, which apparently means they could be inaccurate, and that my CD4 %s have been around 20, which is actually a decent figure, which no-one has bothered to tell me until now. She says she would want me to have yet more blood tests done.
I feel kinda silly now, but I started crying. I had mentally prepared myself, nay, encouraged myself to start the meds this week and had spent hours reading up on them. Now I'm finding out that my last few bloods tests have all been ineptly handled, but my %s are ok and that she wants to delay treatment. I was so confused.
Not only that, but my frustration has been building up with this clinic. Every time I go I see someone different and they don't have a clue who I am or where I'm up to, they just flick through my notes and ask how I am, and it feels so impersonal. I keep being told different things by different people and I feel like they aren't listening to me.
When my syphilis was at its peak and I had the rash and lesions, I noticed my eyesight had deterioriated and hasn't improved since. At almost exactly the same time I got small round, coin sized bald patches all over my head. And yet the doctors keep dismissing any association. I brought it up again with the doctor today and she said that in all the years she's worked there she's never seen anyone get bald patches from syphilis, and that's its normally associated with the final stages of the disease. She asked if I'd had any symptoms of ringworm >:( I said no. She then moved on. Everyone always moves on when I bring this up. Likewise when I mentioned my eyesight she said that sometimes peoples eyesight just gets worse on its own. I asked if she thought that the fact that all this stuff happened at the same time was just coincidence and she said yes. I feel like no-one is taking me seriously, and they always move on after they've casually dismissed it.
So I told her I was feeling really tired and she said that she had felt tired recently because of the hot weather and that I shouldn't be too worried. At this point I could have SCREAMED at the woman. Anyway she prescribed me more Septrin and that was that.
I left the clinic absolutely fuming. It seems no-one communicates with each other, my bloods keep getting mishandled, I keep being given conflicting information and advice and they won't take my worries seriously. I've spent the last week exhaustedly preparing for something and then told that actually I should come back in a few weeks for more tests. I feel so so let down right now :'(
-
Hi Londonguy,
Jesus! u have a right to feel pissed off. I'm shocked at the attidude of these 'professionals'. I have heard it said now that HIV is seen as a 'manageable illness' that some doctors and health care workers tend to treat it just like many other illnesses - 'Dont dwell on it, it wont kill u'. I go to my local GP for general health stuff and she is great. I also have a HIV/AIDS specialist here in Ireland in her private clinic and while she charges €120 per visit, I always see her, she is always fully versed in my health. She always does my bloods herself. She refers me to dieticians, fitness specialists etc and always speaks to them first. I know it wont sound 'acceptable' in the climate that we live in today, but here in Ireland the standard of public health care and private health care in a million miles apart. Nobody should have to settle for the shite that you have encountered. Dont know what to recommend except seeking a permenant one-to-one with a specific HIV specialist.That way a true picture is available to u on each visit. Is that possible in teh UK?
Rob
-
I'm sorry to read about your aggro London Guy. Unfortunately different doctors seem to have different attitudes and a good attitude can make a world of difference on a patients confidence and general mental state.
I am also on National health in my country, but luckily I got a wonderful team in the ID department + pharmacy - to the point that i cancelled seeing a councillour. Can you maybe change clinics? However do not be disheartened about the attitude. The fact that your labs are good + that you are well informed is the most important thing at the moment. You might find that your next appointment the doctor might have a completely different attitude.
thanks for sharing with us,
take care,
mark
-
Give 'em one more shot. If you still hate them, look into getting on at another clinic. There are tons to choose from in London.
-
Hi London,
Sorry to hear how you've been handled by the clinic you shouldn't have to put up with that. Like Cliff said there are a lot of HIV clinics in London i'd change you are always free to do so with the NHS. Secondly i'd do some research and find the name of a well respected HIV doctor there will probably be people on here who could help you with that otherwise give the Terrence Higgins Trust a ring they will be able to help.
When I realised I was going to be visting a doctor every 3 or 4 months for the forseeable future I researched all the doctors in the Manchester area and came back with the name Dr Wilkins he's been treating HIV patients for 20 years so I knew I was in good hands he's a great doctor. The HIV clinic in my hospital has a lot of patients so he has a series of doctors working underneath him so like yourself i'm never really guaranteed to see the same doctor everytime. I've got around this by making sure I specify to the receptionist I want to see Dr Wilkins who in turn lets the nurses know so I always end up seeing him.
Hope you get all this sorted
Chris
-
In a way I feel a little ungrateful. I mean, this is all free and I'll probably never have to spend a penny on treating this disease. But at the same time I feel I've been treated so shoddily. They've messed my bloods up so many times it seems totally inept. And it may not sound like a big thing but when you've been worried sick for 2 weeks over the results of your CD4 test which will probably determine whether you start on meds, and then you're told that the blood got there too late to be tested, it's enough to send me a bit insane.
I think I'm gonna change to another clinic, there isn't really anything I like about this one. I feel better now I've calmed down, I was just so infuriated by the frankly amateurish way I seem to have been handled
-
In a way I feel a little ungrateful. I mean, this is all free and I'll probably never have to spend a penny on treating this disease. But at the same time I feel I've been treated so shoddily.
...it's not free, so you don't have to accept that kind of treatment from people who are supposed to be professionals. You pay for it via taxes. Health care is never free. So don't assume that because you don't pull out your wallet whenever you see the doctor/nurse, that they are allowed to treat you any kind of way. You paid for it. We all do.
You may have a patient advisory board/staff member at your clinic. You can also put in a complaint to them. Or with management.
-
London,
It works differently from clinic to clinic, but I know that at the clinic I attend in Liverpool, you will be seen by different doctors unless you specify otherwise. They can't force you to see anyone you don't want to - and that's no matter what clinic you go to, not just mine.
There is a scheme set up for patients where there is some sort of advisory board, but for the life of me I can't think of what they call it. I'll post again if I remember... but you might try ringing the clinic and asking if they have one... they should know what you mean even if you don't have the name for it.
Good luck. You don't have to put up with that kind of treatment and as Cliff says, it's not really free and you do have rights.
Ann
-
Getting inept and shoddy treatment is not a gift. You are entitled to good, responsive healthcare and treatment.
I know it takes energy and effort to do it, but I suggest you follow up with contacting Terrence Higgins and/or another clinic and asking for help. To have the kind of experience you've had at that one clinic indicates it is simply badly run and/or overwhelmed. That's a problem, but the more immediate one is for you to get your needs addressed.
If you find yourself overwhelmed in getting yourself into a better situation, ask for help from Higgins or another organization in getting it done. There's no shame in asking for help. We all need that sometimes.
Keep us posted on how it's going. You deserve explanations for your physical symptoms and proper treatment at all times.
Cheers,
-
hey london guy,
i think what ann is referring to is a patient advisory/advocacy service...PALS is the moniker they go by at my clinic.
you have a right to be treated with respect, courtesy and compassion by your healthcare team. You also have a right to receive an efficient service, responsive to your needs.
if you're not getting the above,(and it doesn't sound like you are unfortunately) make your concerns/experiences known in writing, and seriously consider switching clinics. Your healthcare needs are more important than your doctors' egos.
kate
-
Yes Kate! Thank you - PALS - that's it! I kept thinking PETS... but knew that wasn't right somehow. ::) :D
Your healthcare needs are more important than your doctors' egos.
That bears repeating.
Your healthcare needs are more important than your doctors' egos.
Ann
-
I remember going to this doctor DS.for treatment because the doctor I had before was just too far away.So this new doctor asked me how did I find his phone number,I said from my insurance company.To make a long story short,He took labs and gave me a physical.and told me to return in three weeks.So when I returned I was very sick with pnaumonia my blood presure were out of wack.and he have you been having sex with women I am sorry I can't do anything for you here you need to go to the emergency room. And I was there with my wife at the time.But what I had figured that he had call.the last DS I were seeing and found out that I hadn't been to see him in months because of finance problems and the distance was too far.So he blackball me.
-
ann,
Yes Kate! Thank you - PALS - that's it! I kept thinking PETS... but knew that wasn't right somehow.
imagine how confused i got when my local hospital introduced "PetPals" (bringing assorted wildlife onto the wards)... :)
Kate
-
ann,
imagine how confused i got when my local hospital introduced "PetPals" (bringing assorted wildlife onto the wards)... :)
Kate
hehehehe... I don't know if the Royal Liverpool has a PetPal program, but then again there's already plenty of wildlife on the wards there. :D
Ann
-
.