I'm worried

I have some pretty complex health problems. I called the GP surgery last week, she said my usual GP was not there that week, to call on Tuesday if I wanted to talk to her (she doesn't work Mondays). She still isn't back, and my carer asked for another GP, who was there, who does know me and is good with lung conditions, which is one of my queries. A GP in training turned up, made 3 mistakes just in writing a script for cystitis, which I only spotted because I know more than I want to from a long history of cystitis. Scary, I dont think he should be doing visits on his own. I cant complain, chronically sick, i'm not in a position to take risks! I tried to explain about the lungs problem. I could see he wasn't getting it, and I gave up. I called the surgery back later this afternoon and just asked when would my GP be back. She said maybe a week or 2. Before she goes on leave, especially extended leave, she lets me know. I think she's ill. Nobody knows me like she does. My lung condition was diagnosed in 2011, after 3 years in & out of hospital as well as 3 years on steroids, and it is rare, especially for women, + my age. I recently joined the Healthunlocked British Lung Foundation website, once again the site has some lovely people keen to help. None of them had heard of my condition, but I managed to talk to a specialist nurse from BLF. It is very rare, and like FM is still not really understood. Oh Lord what what on earth do I do now. That other GP, he is a good GP with a lot of experience, and recently cut his hours down to one day a week. Which was today obviously. I dont know what to do. I cant sleep. I cant relax. Tulip xx

32 Replies

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  • Hi Tulip.

    I too have had issues- lots of issues- with my GPs which makes me very untrusting of anyone there except the one GP I have a good relationship with, so I know exactly where you are coming from.

    Has your condition ever meant you have seen a consultant regarding your lungs? If so you could try ringing their secretary and getting yourself an appointment that way. You could explain your difficulties with the GP and they may bypass the referral as you have previously seen the consultant. This would be the best option as they are more likely to be an expert in that field.

    If not, ring the practice and ask if there is any other GP who specialises in the area of lung conditions. Lots of GPS at practices nowadays specialise in certain areas and a practice tries to get a good mix of skills. At mine for example, the one GP I like to go to is a Musculoskeletal expert, so that suits me for my back problems.

    You could try explaining to the receptionist in a tactful way when you ring, get them on your side and they may help you see someone more suitable. Don't go in there all guns blazing complaining about the incompetence of the Dr you just saw, just gently suggest that you have a very complex and rare condition that requires some experience and you were thinking the receptionist might have a better idea of who to see as she knows the Drs so well. My nan used to say you catch more flies with honey than vinegar!

    But, like me, try very hard not to distrust ALL the GPS, because the fact is you cannot always get to see the same one, and stressing out over this can become an obsession which distracts you from getting things sorted. You only really need someone to be able to listen to you properly and maybe to do a bit of research into your condition in order to help you, because they can refer you to an expert after all.

    Find the most concise summary of your lung condition you can and print it out to take with you. If the GP doesn't know about your condition, and lets face it, if its rare they may never have come across it before, you can give them this information to guide them in the direction you need to go. I had to show a GP how to do a DNA test once!!! I also had to tell him that i thought i had gallstones and would like my gallbladder removed....but that's another story!!

    Don't give up, stop stressing about it, and try another one....you will get there in the end. Good luck :) x

  • Thank you for your advice. Tulip xx

  • You're very welcome :) It is very stressful when drs do not listen to you properly, when you feel they don't understand or even care what you have to go through day by day, and it becomes frightening when you feel your condition is getting worse and serious, and there is noone to ask for help.

    If you feel seriously ill, especially as this concerns your breathing, go straight to A and E. (Take the printout of your condition summary with you....more info always helps). But in the long term there are other things you can do.

    GPs have a limited range of medication and although most have a wide range of knowledge they have to refer to experts for rarer disorders of which they may have little or no experience. This is not an excuse to ignore you however, and you are within your rights to make a complaint. However, a more useful activity with a more positive outcome, would be to do a little detective work to find the right person to help you.

    This could start with a more sympathetic, keen GP or you could as i mentioned go straight to a consultant. Do research on your condition, to find any treatments or strategies that are used which you might be able to discuss with the GP. Try to find a consultant in your area who has dealt with your condition and ask the GP for a referral to him. Are there any support groups specific to the condition which you could contact to ask for information? Ask the BLF nurse what she suggests.

    Take control of your care- YOU have the management of your condition. When you hit an obstacle don't give up, just turn in a different direction. I know it is exhausting having to fight when you are ill, but you can do this. You have made the first step by joining here, that's a good start! You will find lots of support on this forum. You are not alone, somebody somewhere will give you the help you need. Remember intention precedes action and change will follow. Keep going Tulip....we are with you every step of the way :) xxx

  • i cant say much except I have every sympathy with you.like you I dont know where to turn.am really scared for myself and for my dogs who need me to be there for them and are the only ones who how real concern for me and how I so much want to say that to my gp .and I am rapidly losing faith in all doctors cos they "do not accept "what I tell them.

    taking information has just made things worse for me cos my gp wont accept it and this with my gps attitude towards me has ruined any trust I ahve in them.

    I wish you luck and hope you get some answers .

  • I too don't have a lot of faith in GPs and have had to battle to get treated. I had to fight to get a massive thyroid tumour removed and recently had to fight to see a decent consultant due to pain under my ribs which has turned out to be kidney cancer. But sometimes we can get preoccupied with our health and a little over the top with things. I've suffered with chronic asthma since a child and kept getting chest infections. It was only when my mother took me to A&E that I was diagnosed. You really should have been diagnosed by a consultant for such conditions not a GP. So insist on being refereed and look up the best consultant for this disease on the internet and request an appointment with them. You can do this its your right! Good luck

  • hi Paulaw22

    i have been battling for the last 3+ years.that may be so but we know our own bodies and on several occasions i have gone to the doctors with a complaint only for them not to acknowledge it and "diagnose "for the sense of a word -something totally unconnected ie that my tongue and lips were swollen yet not considered why and when ive said my face is swollen-gets dismissed.

    as mine is now from the time i get up and dressed and i am pain free when i lie down that proves something isnt right .

    they wont accept my weight gain is abdominal and only consider my total body weight or that i have lost weight elsewhere,and that as i ahve been telling them for the last 3 years - i dont and havent eaten cakes biscuits snacks or puddings for at least 7 years

  • Hi Paula..I can ide tidy with you! I lost 15 lbs a year ago (down to 100 lbs) and then my abdomen began to grow! Weight stayed the same but bigger tummy (waist grew 2"). I pointed out too GP and he said "you must be retaining air"!!! I am on 02 24/7 and have never heard of such nonsense! Anyone else heard this?

  • Thank you. I wish you well too. Dogs are always faithful, and i'm sure love you very much. Take care. Tulip xx

  • thank you, take care of your dogs, i'm sure they care for you. Tulip xx

  • Hi

    there is a forum on health unlocked dedicated to breathing problems they may be more knowlegable healthunlocked.com/blf

    Best wishes

  • Yes, thank you. Spoke to a lady couple of days ago (? I think), many years of experience! Felt better, mentally, for a while. I've decided to wait, maybe she'll be back next week. In the event of an emergency, no choice, will have to do the 999 thing. Tulip xx

  • Dear Tulip

    I am praying for you, be assured that you are in a lot of people's thoughts!

    Love

    Nita7

  • Very much appreciate prayer at the moment. I'm struggling to pray for myself! Thank you. Tulip xx

  • Dear Tulip, it must be very worrying for you. I sincerely hope you get some answers soon. My thoughts and prayers are with you.

    Tannels xx

  • You're so kind, thank you. Tulip xx

  • It could be an idea to contact the British lung foundation about your lung problems they would have heard of the condition you were diagnosed with. Also they could point you in the right direction regarding a good consultant. Again I'm sceptical of a GP diagnosing you as you need tests and scans to diagnose properly. I got the name of my specialist from the pernicious anaemia society and he was brilliant. I had a Gastroscopy and CT scans he found the Cancer then referred me to another top urologist. They only found it at the end of January and I have my surgery Monday. My GP was informed but I haven't seen him since last August. I have many conditions health wise; fibromyalgia, ankylosing spondylitis, arthritis, chronic asthma, the list goes on sometimes GPs get the idea you like the attention or are hooked on operations just because you are ill! But the people I'm seeing now listen to you.

    I do think as well though that symptoms get be confusing and can point to many things Anbuma3 you mention weight gain in certain areas but say you don't eat cakes and sweet things but if you have pain on exertion you tend not to move around as much and can tend to put weight on around the stomach area, particularly with age. It's not just cake and biscuits that can make us gain weight, age is a factor too. If you have pain when you move around that can tend to be joint related. If it's organ related that usually hurts whether you sit, sleep or stand dependent on which organ is affected or used at the time. But you are right we do know our own bodies and when something isn't right we can feel it but as with my Cancer, you can get symptoms that can point to many different areas or no symptoms at all. I have crushing pain in my bones, back pain also massive weight loss. You wouldn't necessarally think your kidneys could cause those symptoms would you? The problem sometimes is we can search the internet for solutions but the symptoms can't be the same for many things can't they?

  • I was diagnosed in 2011 by the consultant. Currently on 24/7 oxygen concentrator. Recent problem result of a cold, followed by short dose of steroid, last time it took 3 years to get off them so I'm not keen on going down that road again. Your medical history sounds very similar to my own.

    I will be thinking of you on Monday, wish you the very best!! Tulip xx

  • Dear Tulip,

    I'm so sorry that you are in so much oain & having problems with your GP practice, i cant give any suggestions as i don't have your health issues, but i have got to say i have an amazing Doctor's surgery 2 young Dr's, 1 ofeach gender i 9refer the female only because she is clear to hear & a little quicker in diagnosing shows plenty of understanding ifi query any of whatshe thinks she is more than happy tto refer me to hospital, male DoDoctor is great too just i think a little shy & speakstoo quietly for me would see him if only one available, that all said surgery was totally different before previous Drs retired no trust in senior Dr & others never stayed long enough to get to know you. Wishingyou well Tulip, keep you in my prayers x

  • Thank you. This surgery was the best, but has been expanding and I think it's just lost something. Trouble is it has expanded too much, if my GP isn't available, well I dont know, it's beyond me now. I'll wait a while. she might be back next week. My problems are chronic, if I need emergency care i'll call 999. Not what I want and very much hope it wont go that far. Cant think of anything else.

    Message clear, thank you. Tulip xx

  • hi honor i agree,doctors retired and others come and go,junior doctors in training and part timers ,only two of the original gps left.not the same,there are some i wouldnt touch with a barge pole.

  • Sorry all for my previous message words not spaced properly & spell mistakes think you can get the gist of what i said, fingers crossed lol x

  • I have the same GP every time because of my depression (as well as FMS) but to get an appointment I have to ring at 8 am, which I can't do because I can't get my brain in gear at that time in the morning. When there is something not related to FMS or depression like a boil on my bum I will see any GP. I don't go to the doctors very often but if I do really need to go and the receptionists say there are no appointments and I am told I can have an appointment in three weeks I accept the appointment and say 'Thank you and don't worry, I expect I will live, but if I die I will make sure someone contacts you so that I don't end up on your 'missed appointments list'. I then get a phone call back from a GP within an hour or so. Don't put up with second best your health is important and you must insist on seeing someone who really knows what they are talking about. A year or so ago I had to have a new GP as the old one was retiring, and it was the new one who almost immediately sent me for FMS tests, which came back positive, and apparently I have probably had it for c40 years! I am not a prima donna and don't go to the surgery often, and not with silly things I can sort out myself with the local chemist. If you can't get a suitable appointment or are unhappy don't just accept what the receptionist says, insist a GP at least phones you to have a quick chat to sort the problem out. Don't be a nuisance but do be firm!

  • It's clear that good gps, those who know what they're talking about as well as really care for sick people, are pretty thin on the ground. You would think that's why they wanted to be doctors in the 1st place! It doesn't make sense. I'm housebound. I live alone, and I treasure what independence I have left. You had to go to extreme lengths to get the attention you needed. I had a long history under psychologists and I worked hard to escape. I dont know who to ask for. This Surgery has expanded hugely over the past few years, but it has lost something along the way. I had a Community Matron who used to visit regularly, specialised in cardiac/respiratory, but she moved on in December and was not replaced. I think for now I will wait, perhaps call again on Friday to ask if they know anything more about when she might be back. Take it from there. If anything untoward happens in the meantime I'll just call 999.

    Thank you. Tulip xx

  • Hi Tulip, I am sorry for you. I know how demoralising it can be having to see different doctors because that happens to me too. I find the best way around this is to treat doctors like thinking machines. So make a condensed list of your health problems. So when you see a new doctor list in order of importance your health conditions. If the condition is rare print off a copy of the explanation of it to be handy if the doctor doesn't know the condition. Doctors can always call experts for a second opinion if they aren't sure about something. I did this because I found that when I was trying to explain my health conditions I became very muddled - for instance recently I was diagnosed by a doctor as having a kidney infection. When I went back again I got diagnosed with a sinus infection because I kept talking about having a headache. On that occasion I didn't take a list with me so its easy to get sidelined when you have a number of conditions and you happen to feel very unwell too. So lists do help and also explaining what you want - I ended up going back to see another doctor but took my list and my husband who kept everything on track for me. Try not to worry about them making value judgements about you. Their job is to listen, advise and medicate. You just need to explain as clearly as possible what is worrying you at the moment. Remember it is a consultation so a two way thing and don't feel concerned about asking if they understand about the condition you have if it is rare. If they are ever rude or dismissive of you - tell them you are unhappy with their conduct and you are going to complain about them. That should bring them down to earth and you probably wouldn't want to see that person again anyway. I hope that helps and doesn't come over as too know it all. I am just trying really to explain that you have power within this relationship, you are not just a victim. Because if you have a feeling that you are in charge you might not worry so much.

    Take care and good luck,

    Blueby

  • Thank you so much, you're very kind. I'm housebound, and they have to come to me. Nobody passes on phone messages, and I think what happens is they share out lists for home visits, print off notes for basic records, meds etc and dont look at them until they get here. The GPs in training especially, try to appear in control. I struggle in dealing with male drs, young ones even more so. I try very hard to keep things simple, and yesterday I decided to stop at the cystitis, as much for my needs as their pride. You have all been so kind and helpful with variety of useful tips. All I want to do is cry, but I dont because I think that would muddy the waters somewhat because of past mental health record, so I said - thank you, bye. The cystitis needs a script, which I eventually got, and a friend went to the pharmacy for me. Now that i've calmed down I've decided to wait until next week to see if my GP comes back. If she doesn't I'll come back to the advice here, and make another attempt, prepared and with a cool head. If it all goes pear-shaped over the weekend I'll just have to dial 999. I hope not, but at least it is a plan I can work with for now, and there will be consultants available if needed!

    I do feel better.

    You guys are so helpful, thank you for caring! :) Tulip xx

  • Hi Tulip, sorry you are homebound. That must be awful for you. I am just getting over two weeks of being unable to go out - went out for the first time today and now feel tired. When you feel depressed you should tell them as that is serious condition as well. Mental health problems are not to be ashamed of and of course people who have chronic illness are going to get mental health problems because it is very sad when your health starts to go. One of the first symptoms I get when I have a FM flare up is that I get suicidal. I didn't realise to be honest. I just always described it as feeling very flat and not bothered. But I was driving home from work feeling exhausted and in pain and when i got onto my village - so almost home, I felt like I wanted to pull over and I kept thinking there was no point in going on any more. It was then that I realised I had suicidal thoughts. When I got home I told my husband how I felt and then my brother and I started to feel better for talking about it. It was hard but I knew it would be better to tell them. My husband just said to me to remember it was the FM making me feel like that and I would get through it and feel like myself again. And that is what happens. So you are not alone in feeling stressed and down. Just try and weather the storms and take one part of the day at a time so you don't get too overwhelmed. Can you ask them if they can give you a back up prescription for your cystitis? Because it must cause you a lot of stress.

    Take care and chin up :)

    Blueby

  • You're so kind. My GP knows pretty much everything and I trust her completely. I found that when I was under Psychiatrist, if I saw a GP for physical problem, they weren't interested, they assumed every symptom was just psychological. Most GPs in training spend SIX WEEKS on psychology, consequently they back off and call CPN to say they had seen me. It took years to escape the cycle and get taken seriously. The build up of stress, as we know, causes physical illness or at least aggravates weaknesses. I'm a mess. I have alopecia (no hair), after 3 years on steroids, while they tried to work out breathing, I'm the size of a house because they make you feel so hungry 24/7, underactive thyroid, RA, FMS, gall bladder/stones (cant operate- lung condition- too dangerous), diabetes, asthma (separate from lung condition), adrenal glands get lazy after long term steroid use hence any inflammation condition will find me, occasional but unexplained severe water retention and I blow up like Michelin Man. The first time it happened, high dosage water tablets/fluids restricted to maximum 1 litre per day (intolerable thirst), after 7 days weight loss 11 kilos-all excess fluid, passing so much urine means you lose vital enzymes which is not good either, delicate balance took ages to get back within acceptable range. Sciatica, migraines, periodic urticaria (skin reaction to unknown allergy). Yesterday the District Nurse came for a look at a, something?, lump type thing, took a picture, (dignity? what's that?) she didn't recognise it, coming back on Friday. Now cystitis, which inevitably will be followed by thrush.

    On the other hand, I have 2 very precious daughters, son in law, 2 gorgeous grandsons, 3 very special friends, one very special brother who I see twice a year, and believe it or not they are enough to keep me going. I wish hubbie was still here. There is still enough love in my life, good enough for me.

    I cant tell you how much you lovely people help when things get too much. I wish you well and thank you for understanding, & for your empathy. Tulip xx :) Goodnight.

  • I am a friendly person and used to chatting to people, (my career until retirement was negotiating) and I had one doctor for many years who, when he took early retirement, then recommended me to the next best partner in the practice. I was with this GP for c10 years until he too decided to retire early. Both Hugh and Nick told me they were leaving general practice because they wanted to be proper doctors and not just a sorting office for referrals to specialists, and form fillers. Nick is now working in the A&E department of our local hospital and loves it - he does a day's work, deals with what comes along, gets paid, goes home and no aggro of managing a practice or all the other things GPs do that are not connected to medicine! They have said that very few really committed doctors now want to work in surgeries. I am not surprised!

  • Totally agree! The GP I have now is the best I've ever seen, and we have a very informal relationship too. She has been known to arrive about 9pm, if she says she's coming, she will come! She is very well informed, open minded - she trained in acupuncture but sadly it didn't work for me - There is only 1 problem that I can find. She will want to retire one day, I think she said she is either 6months younger or older than me.

    Not going to think about it. I feel better after the kindness and advice i've had, so many thanks. Tulip xx :)

  • It is very frightening and traumatic when your GP retires. I was on Lithium for depression and in the surgery for my weekly blood test when my wonderful doctor saw me in the waiting room and asked me to pop into his room. He then told me he was retiring early and I just lost the plot completely and had the most dreadful panic attack. My friend and the doctor got me out through a back door and my friend took me to the Psychiatric Unit and they looked after me until I was calm enough to go home. I just couldn't believe that the only person who knew all about me (even more than my husband knew) was just leaving me - I was desolate. Anyway, he called round to see me at lunchtime a couple of days later, bringing with him some sandwiches, we found some of my husband's beer in the fridge, and then had a lovely natter and he told me he had talked about me to his best friend/colleague in the practice, and Nick was going to look after me. Nick did look after me for many years until he to retired, and always kept me updated on what Hugh was up to, mainly golf! Oh, to go back to the days when doctors knew their patients and really had the time to care. I do have a very good doctor now, who diagnosed the fibromyalgia, but still miss Hugh and Nick!

    Have you thought about talking to your doctor about her plans for retirement so that you can be prepared for when it happens? They are only human beings with the same feelings and aches and pains as their patients, and should understand your anxiety.

  • I can see that you have been given loads of wonderful advice so I will just wish you all the best of luck

    All my hopes and dreams for you

    Ken x

  • always appreciated. :) xx

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