Feeling let down by doctors

[Looby62]

I'm with you on that one Phoenix.

I had an appointment this afternoon as things have gotten the better of me recently. My GP has signed me off for two weeks with stress and joint pain. I'm now reluctantly back on antidepressants as I just can't cope.

The disappointing thing is that the GP still doesn't get the whole HMS thing (so its joint pain then?) and puts my constant fatigue down to depression.I'm sure she regards me as hysterical.

I am hoping that the notes from UCLH will arrive soon so the surgery can at least be a little clued up.

[madmum]

Hopefully I will get my wrist brace in a couple of weeks. After begging he is ordering me a new temp splint which he said should arrive tomorrow and he will post it to me. He apologised for the problems,I think they have heard about the complaint and my legal case. I signed the complaint and that will get started so I now wait to see if I get another opinion on my knee. I do have my mum with me,even she is getting frustrated with them. Last week I ended up in tears which is unusual for me. I think we do risk being depressed because of the pain and lack of sleep.

[mazza111]

Totally agree with you phoenix. Sometimes you can tell if a doc is going to be dismissive before you sit down. That's what it was like for us today. As soon as I said, I know some docs don't think HMS causes problems, but look at this... and the attitude totally changed. Now dreading going to the hospital tomorrow to be told that she'll grow out of it again Maybe I shouldn't be so dismissive before we go

[Looby62]

Madmum,
Good result for you today and I hope the temp arrives quickly

Mazza (or Mazda, as spellcheck keeps trying to rename you! )
All the best for tomorrow, I hope your daughter is ok.

[mazza111]

HaHa, thanks, you won't be the first one to do that

[Decey01]

One doctor not only presumed I was a liar but actually told me that JHS doesn't cause ANY pain!!! And that's just the tip of the iceberg...

[mazza111]

Decey, we had that with a doctor this week. She said to my daughter, why is it causing you pain? (I think the hint was the weight issue)

I just told her, I know that a lot of doctors don't believe HMS can cause pain, and I know a lot of doctors don't believe in HMS, but the pain for my daughter is very real, and has been like this for just over a year now. Her attitude changed completely. And it turned out to be quite a positive consultation in the end. My daughter feels like a bit of a lemon taking her mammy with her to consultations like this, but I can stay calmer than she can, she gets all frustrated and wells up. After the doctor started listening I stepped back and let my daughter speak for herself then.

[Jaydee]

I really love this thread sad to say. The sadness is in that it should be happening at all. Believe me I have heard more intelligent doctors talking out of their backsides than I really care to mention.

My general feeling is this:
- One/several negative blood tests/other tests, especially MRI: it's all in your head.
- requiring a number of medications on repeat prescription with no major diagnosis or even EDS/HMS: psychological/depression
- tremor/desperate pleas for help: anxiety
- unable to stay upright for any length of time: anxiety/depression/psychological/attention seeking behaviour
- fatigue: depression/anxiety/psychological
-tight muscles/discomfort/pain: depression/anxiety/psychological

I could go on, I am sure many of you are familiar with this. Anyway, my answer to anyone thinking I am mad is that it wasn't long ago that women were locked up in a mental institution for life for having a baby before marriage. It does make them think, just a little. Oh and while we are here, it would seem that the number of people diagnosed with depression is rising alarmingly, couple that with EDS being under diagnosed/treated and heavens knows what other invisible illnesses and it makes you think...

[wonkychick]

The depression thing is a very easy label to give. We all feel under pressure at times, be it family, job, financial, so for a GP who must hear hundreds of variants of similar stories, in order to process that patient its quick & easy to prescribe anti depressants. I really don't think they look at the bigger picture straight off or think outside the box. HMS has so many manifestations & as pain & fatigue are often huge factors, along with the endless list of other symptoms that crop up along the way, in the 5/10 minutes or so you are allotted they cant possibly listen to everything. I mean when you say out loud everything that has happened with your body in a day, it does sound BONKERS!! When I add up all the time I've actually spent being processed & medicated that soon tots up & when practices have budgets as they do, they are always on the lookout for the cheapest options ongoing so they can balance the spreadsheets each quarter, rather than balance a persons life.
For me I find staying as calm as possible helps when discussing things & making a list before you attend, also have some questions down so that when they try to take you off track, I'm sure diversionary tactics are taught at GP training, then you can stay focused & can try to give them as much info as you can in the time allotted. Also remember GP means "general practioner" so they don't always have all the info, they can learn from us!

[bendyneck]

Wow Looby, I checked out that website as you suggested and it could not be clearer, I like the box on the side highlighting "Whether your from Cornwall or Camden, as a patient you now have the right to choose UCLH" I will definitely print off that page and take it to my GP. Though I have already made an appointment to see Prof G privately, I just don't know how I'm going to pay for it, hoping some kind family member will stump up the cash. Now I have the dilemma of whether to go back to GP and insist on an NHS referral to UCLH and wait another 18 weeks. I think I'll keep going with the private referral I just need some answers now.

Looby you sound like a very positive, practical and generous person, I am sorry you are finding it hard to cope at the moment, sending you positive thoughts, hope it helps!

Madmum, Mazza and Phoenix positive thoughts to you too.

[madmum]

Not received either splint yet! So much for thursday or friday.

[Rosie]

Hi all

Hi Rosie,

This was copied directly from the uclh nhs foundation trust site...

You can be referred to UCLH.  As a patient, government policy allows you to make decisions about your healthcare. If your GP thinks that you need to be referred to a specialist, you can choose to be seen at any hospital in the country. This means that regardless of where you live, you have the right to see one of UCLH’s experts.

Looks pretty clear cut to me but it is very possible that I am missing something

X

Theoretically you are right, but in practice the way that our NHS system works (in England. not elsewhere) is that some choices are not available due to the financial constraints imposed by local NHS trusts, as they are the ones that pay for it.
You may also have problems with the 'If your GP thinks you need to .....' bit as some GPs will not recognise your need, particularly if they have little or no knowledge of HMS/EDS-H. It's a catch 22. Some members get their referrals easily, others fight the system and get them eventually, and others have tried but been refused.
If you find you have an unsupportive GP, or one who is not prepared to argue your case for a referral, it may be time to move GPs.

Rosie

[PhoenixRising]

Yes, they will accept the referral, it's getting it that's the difficult part.

[loosebones]

Not my doctors so much but the receptionist.

I had an allergic reaction yesterday so rang for advice, only to be informed that all the drs were in a meeting and one would ring back in 4 hours. I was still getting worse so rang nhs direct and thank goodness I did. At first they tried ringing my drs but got through to the same receptionist who gave the same message. nhs direct had no choice but to call an ambulance and if they hadn't done that or put me through to the paramedics who talked me through using my epi pen and then got me straight to hospital for more drugs and a nebuliser then I wouldn't be here. I'm not happy with the receptionists attitude. Yes the drs might have been in a meeting but she sould have suggested other options or at least sounded concerned by "allergic reaction"

I've had issues with this lady before and am not sure how to deal with this

[madmum]

Complaint to the practice manager,in writing and keep a copy. I have had to do this before and it does work. It is horrendous how you have been treated. Hope you feel better soon.