As those of you who know me will know, I made contact with my MP last year complaining about the lack of specialist care for lupus sufferers in South West Wales and the fact that I had asked 3 doctors for a referral to my Knight in the Heath Hospital Cardiff for continuity of care, after building up a good relationship with him and a lot of trust, after being ignored by my Reluctant Rheumy.
Anyway, my MPs secretary phoned before xmas and said she was putting my file on hold for the time being and would contact me again after I saw my GP with a Specialist Interest in Dermy in January 2017 and at that time they felt they would do me more harm than good if they pushed further.
I replied in the New Year with quite a frank email (on a bad day!) basically saying that if our MPs didn't want to help and just accepted the status quo what chance did we stand. ( I got a little rattled and emotional.
Well, his Secretary has now got in touch by email and asked me to attend my MP's office to meet with him and a Senior Officer from the Health Board to discuss my situation.
Trouble is, as much I want to go and explain in person, as I haven't yet - just email contact with MP, I get sooooo emotional when talking about my health and giving up work etc. I fear I may come across as just luppy. Ha ha.
My husband says he'd come with me. Or I could put my case in writing? But that wouldn't have the same effect would it. Maybe something written from Lupus UK backing me too?
I'm not sure. Can I be brave enough?
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Wendy39
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we'll be right there by your sides 👭👭👯♂️👫🕺💃👯👭👬👫👭👭👭....YES, you & your husband CAN do this
If I were facing this sort of thing, I would prep a brief (1p A4) doc to hand over at the appt...partly cause just disciplining myself to produce a clear, concise doc does help me articulate things more effectively in appts. Also cause I've learned to leave this sort of hard copy behind "just in case" it comes in handy to a sympathetic listener...if whoever I've presented to just throws it in the bin: fine! But if he/she actually makes use of it, this can only help my case. Do you have time to role play your presentation while waiting for the appt? Practicing that way always helps me quite a lot...but, my feeling is that a degree of emotional honesty (distress & passion) helps get my points across...as does the odd quip 😉
Your participation here on forum proves how vvvv fluent & well informed you are when discussing your case...you know it inside out...and, seems to me, you ARE v brave: how else could you have toughed all this out the way you have 🤹♀️
You can - take the man with you (if you think he'll help that is) and explain at the outset that you are sorry but after all your experiences you may get very emotional when talking about this, handing over your "here's something I prepared earlier" notes as per Coco.
Hi great news...Mr. MP simon is local and should be fine to talk too & I am glad to hear that he is bringing a representative of the health board as they should be involved. Good suggestions from Coco.
Not sure if he's making this appt just for you or is part of his surgery? Just thinking about how much time you will have with him. So getting your point across and what actions you want will be the most important part of this meeting. Remember he is likd us, he just was interested in politics and making a change, got into it from countdyside alliance/farming issues, went national and decided to become an mp.
Right behind you and happy to discuss in greater detail and support you. Emotion shows passion and this is important, bravo you. ML
Thanks ML. So far the info I have is very limited. He is trying to arrange a clinic and has invited others. So I will have a time slot, I guess. I will email his secretary tomorrow and find out more. I think an A4 sheet of pointers might help though and I can hand it to them both in case they need a reminder when I'm gone. See you soon. x
GO FOR IT GIRL!!!! So what if you cry? It's really too good a chance to miss. Could you perhaps share something on Facebook and get opinions and support from other sufferers in your area? Definitely get in touch with Lupus UK on Monday morning and ask for some input from them. Best of luck. 😊 Bronagh
So pleased at your news, don't worry about being emotional they've seen it all before besides it proves how much you need help!. This could really make all the difference to you seeing your favoured Consultant. Best of luck and as Coco rightly says we're all behind you, willing you on. TAKE CARE and go for it. Can't wait to see outcome. X
Wow I'm so impressed by your resolve and actions to date Wendy - you are a great example of the proactive patient, fighting for yourself and others in your part of Wales who have Lupus. I am also really impressed with all the responses you've received - we are all behind you or there in your pocket in spirit.
I agree with others that good planning is key to holding it together in the moment. But if you break down then so be it - it's been a very emotional and painful journey for you and it won't do any harm for them to see this for themselves.
Big 👍🏻 and very best of luck!
Ps and defintely take up Kevin's great offer of help above! X
Thank you all for your replies. Although my initial reaction was I can't do it, I'm not strong enough to do it in a rational composed manner, the more I think about it, the more I know I have to go. I started this and I have to see it through now. Maybe there is some of the old lawyer left in me after all. Ha ha. I am going to think long and hard about prepping. I don't want it to sound like a witch hunt against my current Rheumy. I will probably go off the main script once in there - like we all do at our medical appts even when we have notes in front of us. But hey, I'll try my best.
I am going to contact Kevin53 and some info will be needed. I know that my nearest specialist as recognised by Lupus UK is Julian Nash at the University Hospital of Wales Cardiff - so that's 2 hours from my home. Then the nearest Centre of Excellence is at The Royal National Hospital for Rheumatoid Disease in Bath. 3 hours from my home.
We are closer to Cardiff and Bath than we are to North Wales which a long and twisty route.
But where is my nearest specialist Lupus nurse?
Anyway, got me thinking now.
Anyone else from South Wales Wales? Apart from Maggielee, who I am in contact with already?
If you have a dormant lawyer in you then you honestly will find her when you need her I'm sure.
I went to see my MP a few years ago when I was a Scottish ambassador for NRAS. He was absolutely useless and talked about his own health issues, knew nothing about rheumatic diseases and didn't seem to want to learn either. He didn't note down any of the information or statistics I'd been asked to convey. I did so much prep all for nothing!
But my MSP was really good and got things done when I asked him to, on my rheumy's behalf (a mobile dexa scanner).
But then it's a drip drip process and I do feel that by telling people how it is to live with the relentless uncertainty of autoimmunity - it filters back into wider society and means these small, dedicated charities get more support - which in turn helps us.
You might find that you are more effective and coherent if you see it as awareness raising for Lupus rather than simply focussing on your own experiences? Although it is important that you get the rheumy you need of course.
I can tell you that here in Scotland there are hardly any specialist rheumatology nurses and very few rheumatologists who specialise in one rheumatic disease over others. Last year I was briefly under a rheumy who supposedly had a special interest in Sjogrens but completely failed to identify mine. I've had to lead with the possibility of having Scleroderma - which two connective tissue disease specialists told me I categorically did not have - along with Lupus. I feel the pragmatist in me sometimes wins a bit too much though and conveying the reality of my own life to doctors and politicians is probably what I need to do to improve the lot of people living with Sjogrens. But I've run out of steam and there's no BSSA HU so it's hard to galivinise fellow sufferers.
Anyway I'm sure you will strike the right balance so go for it Wendy - you are an inspiration! X
Thank you for your very kind response! I definitely want to raise awareness! One of my gripes has been that I only got referred to the Rheumy Nurse for emotional support last year - saw her November 2016. I was diagnosed in 2013, aged 39, with 3 young children. This has turned my life upside down! Here I am taking a cocktail of meds and struggling with low energy levels on a daily basis. Quality of life for us and our families is effected hugely. ALL doctors grossly under estimate that. So even if I fail in my own quest, maybe I will raise a little awareness and get them thinking. Thanks again. x
Hi Wendy39 , just to make you aware, (as of this month) Dr Nash is no longer at the University Hospital of Wales in Cardiff, but is now based in Swansea. As of yet they have been unable to get a locum in and we do not know when a replacement for Dr Nash will be brought in.
Paul, That's actually better for me! I live in Pembrokeshire. I can get to Swansea in about an hour. Which hospital is he going to be based at? Might get a referral if he's closer. Worth a try.
I'm afraid I don't know which hospital he is/is going to be based at. I only found this out about a month ago from a patient of his and I cannot find any updated information online.
Also, Paul, where can I find the Lupus UK list of centres of excellence, approved specialists and lupus nurses? I looked at the Lupus UK site last night and couldn't find what I was looking for. Thank you.
The lists are not currently published on the LUPUS UK website. This is something that is being worked on and we want to launch as soon as possible.
Hi what id do for a while is jot notes down as you go about your daily life like head pain/stiff/aches/tiredness etc etc anything you find/notice then keep that pad but transfer it onto like A4 laying it out with spaces between each thing then hand them copies of it so they can add remarks/comments while there then get a photocopy to keep yourself for ref as im sure they'd have a copier there they then can keep there sheets for forward things on!
Get your husband and others to ask you questions so more clear in your head
Thank you. I keep a daily health diary, as realised last year that my Rheumy wasn't listening to me or rather didn't believe me. I document as much as I can. Daily diary. Posts on here. Photos of my skin issues. Can't argue with that evidence eh.
My first draft of note is 3 pages long. May need to cut it back, but it all seems so relevant!
Keep the long version - but create a bulleted point summary to hand over too. They can file the long version in the notes - and woe betide them if they then claim they didn't know.
Be brave. And if you get emotional apologise but say something like it's just so very, very hard, that lupus is an awful and unpredictable condition/illness, that not getting the care you need/want is hell/soul destroying etc. Maybe take some leaflets - there are a whole pile on different bits of the body which show how HARD and HORRIBLE lupus is. Say that you feel you are monitoring every little pain/twitch/whatever occurs to you and often don't really know where to turn. As the lupus nurse at Leeds said when my daughter was first diagnosed, "NOBODY would ever CHOOSE to have lupus." Itcan be horrible and evil and you never know what's serious and what isn't even with the best care in the world so just tell the MP it like it is. After all MP's are human too. Just imagine them naked ir sitting on the loo or something to put it into perspective. You can do it. Good luck.
PS. Well done for contacting them in the first place
Hello all! I've received a date for this meeting. Thursday 9th March . I have just posted about it. Going to be a busy month! I've prepared notes and gone over them and over them! And I'm sure I will until the last minute. Wish me luck! x
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