Wednesday, 9 September 2009

Avoiding appointment disappointment

I feel like dancing on the rooftop and shrieking with joy because something so strange and marvellous has happened. I have noticed that recently I have consistently started leaving medical appointments with a feeling of satisfaction

Yes, these days when I leave the consultation room after appointments with either my consultants or my GP I feel I have been heard, believed and given the best professional help available. Now, whilst I understand that your average person may not feel this is worthy of such a reaction of delight, because one might reasonably assume that this would not be too much to expect from a medical appointment, for many a ‘loopy’ this is often not the case.

Thinking back I literally get a shiver down my spine when I remember certain medical consultations. Other memories simply enrage me. There were numerous problems: feeling rushed, feeling that the doctor was distracted (one GP even took a personal call on her mobile in the middle of my consultation, so I sat there trying to come to terms with my new chemotherapy drug regime I was on, while she merrily planned her social arrangements for that evening with a friend!) or otherwise feeling the medical professional I was consulting was clueless about my condition. Feelings of intense frustration were also commonplace, especially when I was for a time undiagnosed after being diagnosed, only to be finally and satisfactorily diagnosed once again. But the worst thing of all I felt during these inadequate consultations was disbelieved.

When have enormous respect for someone because of their professional capacity, if they appear to doubt you, it is easy to doubt yourself. There were times when I started to believe that maybe I was just a hypochondriac as the attitude of certain doctors seemed to imply; maybe I was just imagining the headache and making a fuss about the other symptoms. It is odd to feel grateful for a seizure or for finding oneself unconscious in Intensive Care, but in some ways it did me a favour – it vindicated me, it got doctors to take me seriously and it confirmed once and for all I was no joker.

Having given the matter much thought, I have realised that there are a number of barriers which give rise to unsuccessful medical consultations and that blame lays at both the doctor and the patients’ door. I believe there are very few doctors who are truly ‘bad apples’, but there are a some whose bedside manner leaves much to be desired and rather more than there should be whose knowledge of lupus if very limited. This doesn’t have to be a problem unless they are one of a significant number that is dangerously constrained by professional ego. An otherwise decent doctor who is not fully au fait with the condition but who is open to learning is one thing, but one who is ignorant and arrogant is quite another; they can be very patronising and even dangerous. I have come across them all over the years.

Still, I recognise that patients can also make matters worse for themselves. Unless we allow ourselves to accept in our hearts that lupus is unpredictable, difficult to read and currently incurable we can go into our appointments expecting our doctors to be magicians who ‘wave their magic wands’ and instantly prescribe us the answer to all our problems. Sadly, the truth of the matter is there is no ‘one size fits all’ when it comes to treating lupus and doctors have to be given a bit of leeway. When I found a consultant that I felt respected me and was constantly endeavouring to try and help me find a way forward, I accepted a lot of what we had to do together medicine-wise was trial and error. Nothing he could do or prescribe was going to be perfect and provide a complete cure without side-effects, but with much ‘tweaking’ here and there, we were going to find the best possible solution.

This requires good communication which is another thing vital to getting a positive outcome from meetings with your doc. There have been times when I have had so much invested in a particular medical appointment, been so emotional and felt so much of my life rested on it that I have gone in and (quite uncharacteristically) found myself nervous, freezing up, forgetting to mention some of my key symptoms and to ask all my questions. I essentially turned into a passive, simpering ‘yes’ puppet! Realistically, when I was like this, how could any doctor be expected to deliver what I wanted and needed?

So what can we do to avoid these hellish experiences and start getting the best from our contact with the medical professionals? I have turned some of the things that I feel have helped me into the following list of tips
  • Have all the relevant information about YOUR medical history to hand to help enlighten doctors you are meeting for the first time and to validate what you are telling them (recently, in an appointment of mine, a copy of recent blood tests, an old MRI scan and a letter from another consultant proved very handy)

  • If you are going to a medical professional whose specialism is not necessarily lupus (e.g. A&E department, a GP) it can be handy to have some general information on the condition
  • However infuriated you feel ... never get angry. This is guaranteed to piss-off the doctor, who will instantly write you off as ‘neurotic’!

  • Be persistent
  • If it’s not working, CHANGE doctor or ask to see someone else. A lot of people don’t seem to think this is an option, but it is and you can. It may mean a bit of compromise like travelling a bit further, but believe me it’s worth it. After suffering a GP-practice-from-hell I switched to a GP-practice-from-heaven and haven’t looked back. Why I didn’t do it sooner amazes me ...

  • If you find a consultant / GP you like and feel you can trust, stick to them like glue – they are worth their weight in gold

  • When you are too ill or emotional to fend for yourself or just not up to explaining, take someone with you as your ‘spokesperson’. In some of my darkest hours the formidable combined force of my Mum and Tony was enough for any doctor to reckon with ... but they got the results

  • Show you are prepared to be reasonable and build a good rapport
Let’s not pretend that all this is easy. It has taken me many years and much work and support from my husband and family to get to a point that I’m happy with my medical care, but it is worth it. After all, getting the best from your doctors and consultants is vital to living well with lupus.


Poodle Soup said...

Hi again Daisy!!

Ahh what I nice surprise...I was wanting to to respond to your last comment from your last posting and just logged on to find yet another post!! Yes I agree, be prepared, Im running my Lupus like my own "little business" and feel really good about all of my organization skills coming in handy :)
You mentioned you had a seizure, this popped my ears up as I also did too just recently hence my long stay in hospital and now the chemotherapy. Im now suspicious after doing some reading about Sjorens syndrome that this may have caused it, oh well -l I will discuss with my docs this Sunday when I go in for my 4th chemo....then only 2 more to go yipppeeee! I like to think of it as my mini holiday, 2 days in my own private room with an abundance of magazines to read.
Anyhoo, I was wanting to respond to your last comment re pregnancy, Im sorry I didn't mean to worry you about a possible flare after pregnancy. I really do think this only happened to me because I was undiagnosed and was on no medication, I also let my health deteriorate to the point where it got soooo bad I ended up in hospital and had all of those complications!! It was hard as Im away from my family in a foreign country with only a few friends (none with babies) and my wonderful hubby, we all thought it was just "mothers tiredness" but it was much more as we now know.
I really do believe you will be fine after labour, firstly because you will be well taken care of with your doctors, also you know your limits with Lupus and are prepared and organized to know what to look out for and how to look after yourself, a skill most new mothers don't even have! As for breastfeeding, please remember breast isn't always best. I wasn't prepared when my breast feeding didn't work out, I felt guilty and such a failure, this lead to my stress and then to me getting really sick. What matters is a happy, stress free mum. You and your baby will both win in the end for this. If you can accept now that no mum wether she has Lupus or not is superwoman, this will make it easier for you. If you try breast feeding and it works then great, but if you cant its not the end of the world, formula is great and I wish I did it earlier. My boy has had neither a sniffle or fever and he was mostly formula feed since he was 3 weeks old!! Also don't put pressure on yourself to be perfect, organize and accept now that you like all mums will need outside help, like babysitting so you can get sleep and much needed rest. NEVER ever feel guilty about getting help and giving yourself a break. Despite going through chemo and getting over the shock of whats just happened to me over the past few months am doing really well, am just glad to finally be on medication that makes me feel alive again, I can hardly believe how I got through all of those months being so sick (am a tough little cookie), now I can hold and throw my baby in the air.....I couldnt even hold him before or let alone keep awake!!
Hope you arent getting too much morning sickness, its should go soon if you are, ginger is supposed to be good for nausea, as well as being a great anti inflammatory food!!

Suzanne said...

Hi Daisy
Once again you have managed to put in words exactly how i'm feeling. The other day i was pulling my hair out trying to get in to see my G.P and having to near enough fight my cause with the receptionist. And the words "just take away the pain" came out of my mouth.
Thanks for being there and I hope everything is going ok with you and your little bump.
Suzanne xx

Daisy Seale-Barnes said...

Hi V

It is really nice to hear from you again.

I am sorry that you also had a seizure - isn't it such a shocking and unexpected thing? I found it took ages to really believe it and come to terms with it. I even found the treatment quite a shock: before it happened to me I thought chemo was only for cancer patients. Are you nearing the end yet?

I am glad you are getting to grips with it all and really like the idea of viewing it like a little 'business' to be managed properly. MMmm - maybe an idea for a future post?!

Thanks for your advice re pregnancy and motherhood. It is good to know you have done it and are bringing up a happy, healthy little boy in spite of all the complications you've had. I am starting early with my campaign to the midwives etc that I will not be beholden to the breast (!) I'm going to play it by ear and see how it goes. Will keep you posted.

Keep being a 'tough cookie' - it'll serve you well. I really admire how you have managed everying especially as you are so far from your family and friends.

Keep in touch.

Daisy x

Daisy Seale-Barnes said...

Hi Suzuanne

Your absolutely right - receptionists and medical secretaries are so often half the problem! Just getting an appointment can make you feel 10 times worse and uses up so much precious energy. I hope you were successful in the end and have had the proper help you need in getting things back under control. Remember to look for another GP if this one keeps letting you down. It makes a world of difference.

Re baby: till a case of 'so far, so good' thanks. 20 week scan is at end of next week, so our fingers still held firmly crossed.

Daisy x

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