I need to get a grip

faerielight

You are doing the right thing seeking specialist help. Constiptation sounds so benign, but I know how serious it can get, I don't want to be alarmist, everyone is different, but I wish I'd been brave enough to get help for my lazy bowel.. I didn't and it perforated, but that was years of build up..I take 6 Movicals a day and 2 stool softeners. best of luck, I had a colonoscopy with no sedation, it's bearable.Regarding pain, I use lidocaine patches, they are good. I'm sure everyone on here knows, but I struggle with BPD too It is a hard illness, I know..

Ames

That's an excellent question Glaswejen.

Immunology - They're kind of the hub of it all. It's also the most important because of the risk of other things developing which need to be caught quickly if they do.

Rheumatology - I've only seen them three times, they say they want to see me in three months but it ends up being at least six because they're so busy. I want to stick with them a bit longer to try and figure out what's causing the pain.

Psychiatry - the one to drop once all the paperwork's sorted, not that it's a choice. I've been finding private therapy far more useful than anything they've done.

Gastroenterology - if, as I fear, it's just my existing problems then there's no point seeing them long term. I'm really, really glad that they're doing the tests though.

Haematology - I'm on the waiting list. I have a whole host of abnormal lab results that other doctors hope they can get to the bottom of. They didn't figure it out last time I saw them, but that was over a decade ago so they might have better luck this time. I imagine that'll be a short term battery of tests then discharged.

The problem is that I've got lots of things wrong with me that don't fit any patterns. I feel a bit like I'm a jigsaw but instead of someone taking a step back and looking at the overall picture they're chopping the pieces up even smaller. Oh, how I wish House was real!

I think I just need to be stronger and more pro-active. Instead of saying 'oh yes, those test results are an interesting anomaly', I need to be saying 'that's great, but how about doing something about x symptom'. Although last time I did that I was put on medication which 'should be prescribed with caution and close monitoring in people with a history of mental illness' and ended up in the middle of an argument between the hospital and GP about who should do the monitoring. Neither would and a few months later I had to stop it because my anxiety levels had gone through the roof.

I probably also need to be more realistic and stop hoping that they'll turn around and say 'oh, it's x, here's a drug that will make it better'.

I did have an advocate, but only for the mental health stuff. I was discharged from that as soon as I had the new dx because they didn't have the capacity anymore, and most of the issues had been addressed. They wouldn't have been able to help me find a new GP though because that would break their rules about recommending a service.

You've given me a lot to think about in terms of what conversations I need to be having with them all though.

Ames

faerielight wrote: »

You are doing the right thing seeking specialist help. Constiptation sounds so benign, but I know how serious it can get, I don't want to be alarmist, everyone is different, but I wish I'd been brave enough to get help for my lazy bowel.. I didn't and it perforated, but that was years of build up..I take 6 Movicals a day and 2 stool softeners. best of luck, I had a colonoscopy with no sedation, it's bearable.Regarding pain, I use lidocaine patches, they are good. I'm sure everyone on here knows, but I struggle with BPD too It is a hard illness, I know..

I'm so sorry to hear about your bowel problems, it sounds awful.

At the moment it's more diarrhea than constipation, it goes in phases though.

I've had a colonoscopy without sedation before which was fine, it's the endoscopy that I'm worried about. I know I'm being irrational but it's because of it being next to my windpipe I keep thinking I won't be able to breathe. I know I will be able to, so I'm being silly. At least it means I should be fine when it starts.

I've just been reading about lidocaine patches, I'll suggest it next time I get chance.

My issue with the BPD is that I don't cling to inappropriate relationships. In fact I do the opposite, I'll avoid anything that resembles even friendship. And my head's really messed up about whether I can trust my judgement about a load of stuff. No-one's actually sat down with me and explained what BPD is and why I've been diagnosed with it - all the psychiatrist said is that it's when something happens in your childhood that affects how you form relationships as an adult. Hopefully when I get a copy of the letter I'll understand better.

LocoLoco

Hi Ames,

I've sort of experienced this from the other side as it's my son who has a variety of different health problems and I've had to become his sort of advocate/medical advisor/legal representative all in one.

I've found a number of things have helped me to help him. One is to become as knowledgeable as possible about the various problems he has. I've done this (and still do this) either by reading up online, getting books from the library and talking to other people who have similar health care issues. I have found some of the healthcare charities quite helpful when it comes to more objective information. I've never found the medical profession very helpful, to be honest, and have always found I need to get information from other sources in order to make sense of things.

I also manage his notes and medical records myself. In the ten years I've been dealing with the situation I've yet to see a single medical report or referral that is accurate, which obviously then leads to all sorts of problems with referrals and the sort of appointments he is offered. I write up my own synopsis of his medical history and send it off to anyone new he will be seeing and usually take or send in my own written report of what the problem is, what's been done already and what I want them to focus on. Most of them don't like it, to be honest, but without it I spend most of the appointment explaining simple information that ought to be in the front of his file and never is. So I find that helps.

I also find asking questions is a good way to getting to the bottom of whether something is necessary or not. I have found that a lot of the doctors we see will make a referral somewhere else simply because they don't know what to do and rather than saying 'we don't know' they refer him to another clinic or specialist and simply pass the buck. When anything is suggested now I ask questions about why, what they hope to achieve or gain from it, what the benefit is likely to be to my son and so on. In a lot of cases the truthful answer is there's no practical benefit, they just don't know what else to do, so I refuse appointments now that seem unnecessary or that won't lead to something more useful.

I've also found diet has made a huge difference, as have a number of complementary therapies, just in boosting his health generally and thereby reducing the symptoms of some of his problems. It's a very wide area to look into but I'd recommend reading up on things like dietary issues and managing stress with things like acupuncture or osteopathy as I think these sorts of problems can exacerbate pretty much any kind of health care issue. We've found all of these useful and I personally just like the feeling of being able to do something instead of waiting endlessly for an appointment only to come out knowing no more than I did when I went in.

It is very difficult and I have found it hard to be assertive and I do find it all very tiring (I expect you do as well!). But it has become easier as time has gone on and with things like writing your own medical history up, once you've done it it's very quick to update whenever something new occurs. For me I've just found that being more in control of the situation has helped me to cope; I've found it very hard to watch my boy struggle and often felt helpless so it's given me a sense of purpose which I think is helpful to most people.

I hope you can start to untangle some of the knots and start to feel a bit clearer in your mind of what to focus on and finding people who can help you.

NB for what it's worth my son's last GP was useless and actively tried to prevent him having assessments he needed. We changed surgeries and the new lot have been a lot more helpful. If you do change it might be a good idea to write to the new doc and explain the situation, what the difficulties are, what you need help with and so on so that they have a clear idea of your situation. Hope you can sort something out.

GlasweJen

He advocate didn't recommend anyone, they helped me make a check list of what I want in a GP and I called round the surgeries and asked, things like how many transplant patients are on their books, do any of their GPs have a special interest in neurology - that sort of thing. We found a surgery that seemed a good fit so I went along and spoke to the manager and then moved and have been happy with them. I see the same 2 doctors all the time even though it's a small practice with a large patient area and I can usually see the doctor on the day I phone up.

Ames

Thanks for the replies.

LocoLoco:

I've become as knowledgeable as I can about my illnesses. It makes things a lot easier - when I had the first appointment with gastroenterology he didn't have my full notes so being able to get him up to speed quickly was great, he could go straight to looking at test results.

It's not as easy with the mental health stuff though. I've struggled to find reliable info about BPD. My CPN suggested I look at the Royal College of Psychiatrists, but unless I just couldn't find it there was only a couple of sentences about it in the middle of the page about personality disorders.

I'm lucky that the 'physical' doctors listen to me, and the reports I see are accurate. Although that reminds me, I need to sort out getting my rheumatologist and gastroenterologist to copy me in on letters they send to my GP.

What you said about them making other referrals in the hope that somebody might figure it out is spot on.

Glaswejen:

I didn't realise patients could 'interview' prospective GP practices like that, I thought it was more having to accept whoever was taking on new patients and agreed to have you. I'll ask my CPN to help me figure out a list of what I need. My biggest worry is ending up somewhere it's impossible to get an appointment, but then being able to get an appointment that turns out to be a waste of time isn't exactly a bonus.

GlasweJen

Ames wrote: »

Glaswejen:

I didn't realise patients could 'interview' prospective GP practices like that, I thought it was more having to accept whoever was taking on new patients and agreed to have you. I'll ask my CPN to help me figure out a list of what I need. My biggest worry is ending up somewhere it's impossible to get an appointment, but then being able to get an appointment that turns out to be a waste of time isn't exactly a bonus.

I asked them, jusr casual on the phone like when is your next appointment, how far in advance do you allow appointments to get booked, how quickly can I get an emergency appointment and do you do home visits or telephone appointments.

One surgery had a 6 week wait so they got binned straight away. Don't assume good surgeries have long appointment times so bad surgeries see you quicker. My surgery has emergency appointments so you get seen that day but it's 5 minutes and you get a card to read about what you can and can't discuss (no sick notes, no letters, no repeat prescription requests etc,) they also do sick note renewals over the phone and the doctor will call if he has a query, emergency repeats are dealt with through the local chemist so all that means the doctors can get on with treating people day to day. The 6 week wait surgery didn't do anything like that so everyone just had to queue even for something as simple as needing a repeat prescription but the review date was past.

Ames

Yours sounds similar to the one I'm at now, there's a sit and wait clinic with the same conditions you mention, then on the day appointments.

My biggest worry about changing is that I have panic attacks using the phone. I'm ok where I am now because I've been there for so long I 'know' the receptionists. I only have to psych myself up for a couple of days rather than self harm. If I moved to one of the places where receptionists ask loads of questions and try to talk patients out of booking then I'd just never go. So I guess one of my criteria has to be not just availability of appointments but whether I can book online or in person.

I think that's one of my main problems - admin is great where I am, but the doctors aren't.

Ames

I've just been looking at reviews of local GP practices. A couple of years ago mine had a high rating, including patient satisfaction. Now it's dropped to less than 60% would recommend it and only two and a half stars.

melbury

Ames wrote: »

...........it's the endoscopy that I'm worried about. I know I'm being irrational but it's because of it being next to my windpipe I keep thinking I won't be able to breathe. I know I will be able to, so I'm being silly. At least it means I should be fine when it starts..

I have had two of these and it's not that bad and is over pretty quickly. First time I had the throat spray and second time I said I didn't want anything. It does make you gag a bit, which is natural with something going down your throat, but it doesn't affect your breathing. Some people opt for sedation, but then you have to stay at the hospital for a few hours and can't drive the same day.

I have to say that I wanted the second endoscopy because I was having stomach pain/problems and wanted them to check that everything was alright - they also did the h-pylori test at the same time, which was good.