Hi, I'm Hannah, Lupus UK Specialist Nurse at the Queen Elizabeth Hospital Birmingham.
Hello: Hi, I'm Hannah, Lupus UK Specialist Nurse at... - LUPUS UK
Hello
Written by
LupusUKnurse
To view profiles and participate in discussions please or .
43 Replies
•
Hello Hannah. Lovely to have you with us here. This is an amazing support group and I hope you will get as much out of it as we do. Best wishes. Wendy
Hi Wendy, thanks for the lovely welcome. I'm hoping to increase my awareness of what it is like living with Lupus day-to-day, how symptoms impact on quality of life, and what treatments/activities/strategies people find helpful. I'm also keen to find out what people with Lupus want from their healthcare service. I aim to use this knowledge and insight to further develop the Lupus service in a way that is truly patient-centred, to be the best nurse that I can be for my patients, and also to generate concepts for Lupus research studies.
That is so good to hear! Well done to you for being so proactive and increasing your knowledge. That’s dedication and I am sure your patients will be extremely grateful. A lot of us say here, doctors could learn a lot by reading posts here. There has been some great posts recently, looking for our views on our overall care, for research. Scroll through and look for survey questions from Paul Howard and Melanie Slone.
Yes I completely agree, as healthcare professionals we can learn so much from listening to our patients. However with clinics getting busier than ever and appointment slots being shortened or double booked to fit more patients in, allowing patients time to tell their stories is becoming increasingly difficult. And of course sometimes we are guilty of thinking that we know best!
I'm really interested to see what people post on here, I'm sure I will learn a lot.
Hello Hannah. It's great to have you with us here. What a great way to extend your knowledge and understanding. I think we've all had occasion when we've felt anything but at the centre of our own healthcare. Personally, one of the main things I need from the health service I receive is to feel heard, not just listened to. I think we've all become finely tuned into our own bodies. If I feel something isn't right, isn't usual for me, then it means something. Help me understand what it is and whether we need to do something about it.
The NHS is amazing. By extension, you're amazing! Don't give up trying to be even better 👏👏👏
Hi Justine. I agree entirely, as healthcare professionals we must listen to and act on what our patients tell us, particularly those with chronic conditions like Lupus. The NHS is amazing, but it could be better. I want to make my small part of it the best it can be, by listening to the experts, i.e. the patients. I feel very privileged to be part of this little community, thank you for having me.
Hi and welcome Hannah, thank you very much for joining us and wanting to listen to the patients. I think the fact that you have chosen to join us, shows that you are a very good patient- centred care type nurse already. You will just have to be careful that we don't keep asking you all our lupus questions!! 
x
Thanks for the lovely welcome. Yes I do have to be careful about that, I'm happy to offer general support and answer general questions, but i will not be able to answer individual health questions.
It has been lovely reading this post this morning. You are a credit to your profession. Xx
Amen.
You are absolutely in the right place for that Hannah - I come from a different a/i forum but this one has some of the most caring and helpful people I know. I lurk here a lot
But above and beyond that - Wendy and Barnclown in particular are so knowledgeable about their field it puts many doctors to shame. That isn't to say others are not equally knowlegeable - but for me those two stand out. Enjoy getting to know them all.
A lot of us have given up on the healthcare service, unfortunately, due to drugs and treatment making our symptoms worse. I think a lot of the problem is that most drugs are not natural or contain some ingredients that cause terrible side effects.
I have learnt and am learning all the time how to manage the symptoms for myself especially after being referred and the only treatment available for a nail problem I have, and as many do, were drugs containing caustic soda which I would never risk putting into my sensitive gut. My symptoms all flared up after being given a broad spectrum antibiotic with known dangerous side effects that I should not have been given with my penicillin allergy in hospital in 2000. My symptoms were much easier to manage before that and I nearly died afterwards with my weight plummeting to 5stone 10lbs and my life being saved by knowledgeable complementary practitioners including doctors at Bristol NHS homoeopathic hospital, which has sadly now been closed due to cuts or so they say.
My trust has gone in the conventional system, but I listen and I decide for myself now what is right for me and I don't let clinicians tell me what is right for me any more.
It is very encouraging to have you join the site! With very best regards, Lily
Thank you to all of you for welcoming me to the site and for your lovely comments 😊
High 5’s to you Hannah! I am sure you will gain a very useful insight from the Wolf Warriors’ perspective here - as well as enjoy the conversations and banter! A very warm welcome indeed! 🙌🙌🙌
Hi Hannah. Fantastic to have you here and so wonderful to have a health care professional who truly wants to connect with and understand their patients.
Many of us feel isolated, lonely and unsupported, so this forum is a lifeline, especially when waits for appointments can be so lengthy...with gaps of nothingness in between and the inevitable problems of getting support in an overburdened NHS, when things go wrong. But I bet you know all this already 😉😀.
So welcome to the world of stranger friends and all credit to you for having the foresight to seek us out and step into this virtual patient centered space. Sincerely hope that you get as much out of the forum as we do.
Look forward to seeing you around... 😀
Hello Hannah, it's good to have you here 😊. The knowledge base here is quite amazing and folks here also provide the essential emotional support that is often lacking when diagnosis is pending or received.
Hello Hannah n a very warm welcome to all things lupie 💐!!
Like others have said this is a wonderful supportive community!! Xx
Welcome Hannah! You’re incredibly proactive and obviously care for your patients and your job. The NHS and your patients are very lucky to have you. Thank you for joining and I hope you find it really helpful. Pip
Hello Hannah
It's wonderful you've joined us to help gain insights into our world as patients!. It shows what a great nurse you are that you really want to make a difference!. Do hope you like it here, we are a very helpful, supportive forum. Look forward to your posts, maybe more research projects?. X
Hi Misty, thanks for the lovely welcome. Yes I'm definitely keen to do more research! I'm running the BILAG study at my site and I'm also involved with BEAT LUPUS. Last year I participated in a national Lupus audit looking at how closely we are following the best practice guidelines, the findings of that are being presented at the BSR conference this month and will be published thereafter. Currently I am working on a service evaluation at my site looking at patient numbers, proportion of those with lupus nephritis, maintenance treatments, relapse rates and relapse treatment. I'm hoping to use that as the basis for setting up a new study. I've got my own ideas but I'd be really interested to hear what research YOU would like doing!
Hi Hannah
It all sounds like very interesting work that must keep you busy and will help us patients greatly!. I see your at a big Birmingham hospital !. Is it a centre of excellence?. Sounds like it!. Any research into new treatments or ways of using other drugs has got to be good for us patients as there's been very little new treatments for lupus and the other CTD's compared to RA!. Another area that needs looking at is the fatigue that is so debilitating !. Any help there would be so helpful to us sufferers!. It can be very hard to live with.
I hope you have a lovely Easter break and will look forward to you keeping us updated in your work. X
Oh Hannah you are going to be tortured lol Welcome!
Hello LupusUKnurse I guess you are already aware of the West Midlands Lupus Group ( WMLG) which is a branch of the charity Lupus UK It's a fabulous support group and one reason that Lupus is well catered for in the West Midlands, hopefully you'll share details of that group and the meet ups / monthly "drop in" at Dudley they do with people you come into contact with
Hi Fabwheelie. Yes I'm part of WMLG and share details with my patients. I'm aware of the drop in at Dudley but I'm a bit naive as to how it works and what goes on there, I'd be really grateful if you (or anyone else) could fill me in!
Hiya The WMLG "Lupus drop in" is open to everyone, you can just turn up. It's on 2 - 4pm on Second Thursday of every month. ( Next one 9th May 2019) It's recently moved venues to the Bold room in intu Merry Hill Shopping Centre, Brierley Hill, Dudley, DY5 1QX
There's often a theme for discussion, perhgaps a video to watch, sometimes guest speakers, sometimes it's more just an informal gathering. Always information about Lupus is available, eg Lupus UK leaflets, and usually a few items for sale such as the kind of things you'd see on the national Lupus UK online shop. Plus tea and coffee (in exchange for a donation)
Numbers that attend the Lupus Drop in does tend to vary, most of us have Lupus, although we do get people who are carers, friends, family of people who have Lupus too, and it would be fabulous if more people attended. I'm not always well enough to get there myself, but I do like to support it when I can, I do think it's great to know there is local support, and it helps to meet others who truely undertstand.
Yvonne Norton who runs WMLG is fantastic. She does loads of good work for Lupus UK, and Lupus in general, and I'm sure she'd be willing to give you more details, (perhaps she could even persude you to come and give us a talk at the drop in about your role as Lupus nurse some time). There's also an e-mail list where you can then be informed about the next meetings etc
Here's some links to WMLG :-
general website westmidlandslupus.co.uk/
contact details westmidlandslupus.co.uk/con...
Details about the drop in westmidlandslupus.co.uk/lup...
I really do hope these meetings will become better supported (I myself am guilty of not attending as much as I'd like to), the venue recently changed in attempt to make it easier for people regarding things like ease if on public transport, or for parking.
Sounds fab, I'll try and get there myself sometime, Thursday is generally my admin day so shouldn't be too difficult. I have signposted a few of my patients there already but I can think of many more that would benefit. We're running a patient information day for World Lupus Day on 10th May so perhaps I could promote it there.
Yes I know Yvonne, she came to the Lupus UK Nurse day that we held at the QE last year, and I also saw her at the last WMLG meeting in Dudley. We correspond via email now and again too. She's an amazing lady and a truly lovely person. I'd be very happy to do a talk at the drop-in - perhaps you could suggest it to her and see what she thinks?
Thanks for the links, I'll have a look at those.
Hope to see you at the drop-in sometime!
Hi that's great. The information day sounds good, is it at the QE?
I'll mention you to Yvonne , and hopefully see you at one of the drop in meetings
Yes it will be at the QE. I'll be doing a tall about Lupus research including the BILAG study, we are hoping to get our ophthalmology specialist nurse to talk about hydroxychloroquine and the eyes, and then possibly a third person to do a talk on lupus and pregnancy. There will be lots of opportunities for questions and general chit chat too.
Great, thanks, yes I hope so.
hiya LupusUKnurse that sounds great. Is it an event anyone can go to, do you need tickets, etc I'd not heard about it until your post so it might be worth promoting a bit too.
What a refreshing thing to see you introduce yourself and say why. Thank you for joining us! As many have said, may it be as fruitful here for you as it for us.
Panda
welcome and thank you Hannah🌻🌻🌻
Hi Hannah, I have cns lupus which as you know is quite rare so if you need any questions answered give me a shout. Good luck.
Hi Hannah. It’s great to have you in this community. Many thanks on behalf of Lupus UK. Best wishes Kevin
Thank you for being in involved, it means the world to so many of us.
After reading many posts from all types of lupus patients, it seems doctors don't tell us "up front" what to expect, what symptoms might evolve throughout the years, if we do not follow the basic rules of living with Lupus:
amazon.com/Lupus-Encycloped...
(Lupus Enclyclopedia by Dr Donald Thomas-
excellent 💜💜💜 covers all symptoms lupus patients might experience & he gives seminars:
Part 1,2,3 above of presentations to Lupus Molly's Fund org.)
hopkinslupus.org/lupus-info...
Also, they should give us help to find "positive" Lupus Support Groups ( like from the LFA in America & Lupus U.K.) that encourage us to learn more about our symptoms through their resources and learning to be proactive in living with lupus.
This would help "them" to treat us, as we learn from others what has helped someone else with the same type of problems.
Just like we are sharing on this blog, it helps us to know how to present our new symptoms, possible alternatives to consider and what new or old treatments might work this time.
Thank you for your time and bless you on your journey💜
Absolutely fantastic You Tube seminar. It answered questions about the sun (sunscreen, UV light), Plaquenil, Echinacea and Omega 3 (topics that have come up recently). Let alone everything else. Well worth the half hour for Part 2 in particular.
Thank you so much for sharing this!
Panda x
I know I really love them, and all the advice is so helpful for us and very positive ways for us to take care of ourselves. I'm glad you enjoyed it!
And I even ordered his book, 'The Lupus Encyclopedia'. I think it will be a very good reference in future. Thanks again! P x
Not what you're looking for?
You may also like...
Hello from Manchester
a recent diagnosis of SLE - Lupus and grateful to have discovered Lupus UK - having spent too much...
hello, im new to this site
gloucestershire area with lupus because i have not met anyone near me with lupus. i have had lupus...
Newbie, saying hello and seeking advice.
Hydroxychloroquine newbie.
Hi all, I'm Cordie and I'm new here. I was hoping for some info...
Hello all - Just a wee update
It's been a long time but hello! Flare up - Sjorgen's?
Hello to all! Potential lupus diagnosis coming my way.
Hello all-new here! Just been diagnosed lupus nephritis 
