Feedback on Specialist Lupus Nurses

[Chanpreet_Walia]

Hello everyone,

LUPUS UK is currently in the process of creating a webpage dedicated to Specialist Lupus Nurses, outlining the importance of their role and why the Charity is dedicated to funding them.

As part of the page, we would like to include short testimonials from patients about their experience of being under the care of a Specialist Lupus Nurse. Statements can include shout-out/thank you messages.

If you would like to share your experience, please post it below. All testimonials will be made anonymous.

Thank you!

[EOLHPC]

My Specialist Lupus Nurse has been KEY to surviving the diagnosis & treatment process for close on 10 years now. She responds asap to tele-messages and gets back promptly with my rheumy’s feedback. She is always attentive, knowledgeable, kind & reassuring. Her presence has helped me feel much better able to cope with the ups & downs of life with lupus. I can’t thank Lupus UK enough for everything you do for us, especially for funding specialist nurses!

[Chanpreet_Walia LUPUS UK in reply to EOLHPC]

Hi Barnclown,

Thank you for taking the time to share your experience of being under the care of a Specialist Lupus Nurse with us.

I am so glad to hear how your nurse has helped you over the years, and the impact it has had on your lupus management. We aim to provide this type of care for all lupus patients by funding three new Specialist Lupus Nurses every two years in the UK.

It is generally fine to mention the names of consultants and nurses as long they are not mentioned in a negative light, or against their wishes, contact details must also not be shared with anyone in this forum :).

Best wishes!

[EOLHPC in reply to Chanpreet_Walia]

🤩 Thanks Chanpreet! 🍀❤️🍀❤️

[suzannah16]

I don't have a specialist nurse or doctor. my lupus care is shared amongst my GP, renal consultant and rheumatologist. I never know which one to go to when I have a lupus related problem.

[Loopyloo43 in reply to suzannah16]

Hi neither do we have support here in Llangollen north wales from the rheumatologist to the nurses so what is one to do and it is a worry from time to time when you feel your health is deteriorating but no where to go for advice and reassurance !

[Chanpreet_Walia LUPUS UK in reply to Loopyloo43]

Hi Suzannah16 & Looploo43,

One of our aims is to fund around three new Specialist Lupus Nurses every two years across the country. As Kevin53 has mentioned, if you would like LUPUS UK to sponsor a Specialist Nurse in your area, please ask your consultant to apply to us at [e-mail]

Best wishes.

[Loopyloo43 in reply to Chanpreet_Walia]

Thankyou I will bring this to the attention of my rheumatologist when I see him next regards

[Spotty-ewe]

We have a rheumatology advice line at our local hospital and a nurse gets back to you within 24 hours, but she isn’t a Specialist Lupus Nurse. She will refer to the Rheumatologist if she thinks she needs to before getting back to you depending what your query is. It works quite well but I do sometimes wonder just how knowledgable they are about Lupus.

[CarolMcl in reply to Spotty-ewe]

Hi, I also have a line to call but as you say they're rheumatology nurses not specialist lupus nurses and I honestly don't think they fully understand.

[Spotty-ewe in reply to CarolMcl]

Totally agree with you Carol. Wouldn’t it be lovely to have specialist Lupus nurses who can advise and support us! Ahh. Bliss.

[EOLHPC]

My univ hospital in east anglia is now a Lupus UK Centre of Excellence, which took on its Specialist Lupus Nurse approx 10 years ago...am hesitating to name names: need LUK to let us know if we can share details re specific hospitals here on forum....i can’t remember the forum rules on this, sorry, but at the end of this reply am including the link to the relevant part of the LUK website: you’ll find Specialist Lupus Nurses in the criteria section at the bottom of this info.

Most of the clinics i attend at this university hospital have specialist nurses we can contact by telephone, eg immunology, gastroenterology, gyn oncology...i’ve found ‘most’ of these nurses pretty good, but their roles seem to be strictly limited (eg as far as i can make out, they are not prescribing clinicians). my rheumatology clinic also has a specialist connective tissue disorders nurse. After 40 years in the diagnostic wilderness, this specialist nuring support feels miraculous...

am very lucky to live only 1 hour from this huge hospital, but, as i’m sure you can imagine, there are BIG problems being in care at such a ‘medical-industrial’ complex...eg once i arrive, just actually getting INTO the car park & down to clinics takes minimum 30 min...& many aspects of care can be highly dehumanised + sometimes fail to cope safely with complex patients like us...🤷🏼‍♀️ so i always have to be ‘on guard’ playing my own Patient Advocate or suffer the consequences (this summer this sort of thing caused a critical post op bowel obstruction on neurosurgery ward)

lupusuk.org.uk/centres-of-e...

[Gizmok9]

I don’t have a specialist nurse and never seen one, my care is through gp and my rheumatologist every 6 months

[Kevin53]

If you would like a Lupus UK sponsored nurse in your area ask your consultants to apply to Lupus UK. We aim to allocate three more every two years. Best wishes Kevin

[Spotty-ewe in reply to Kevin53]

Thanks Kevin, that is worth knowing. 👍🏻👍🏻

[Wendy39 in reply to Kevin53]

🙋🏼‍♀️

We’re trying aren’t we! We would love a Lupus Nurse in South West Wales. Would make a HUGE difference to us. From my own experiences, the general Rheumy Nurses have no where near enough knowledge to make a difference to us.

Wendy

[Paul_Howard Partner LUPUS UK]

Hi Hidden ,

LUPUS UK is currently funding Specialist Lupus Nurses in

•Belfast, Northern Ireland

•City Hospital, Birmingham

•Edinburgh

•Lanarkshire, West of Scotland

•Leicester

•North Wales

•Queen Elizabeth Hospital, Birmingham

•Royal Free Hospital, London

In the past, the charity has also funded Specialist Lupus Nurses in

•Aberdeen

•Bath

•Cambridge

•Coventry

•Exeter

•Leeds

•Manchester

•Newcastle

•Southampton

•St Thomas’s, London

•UCL, London

Many of these hospitals still have Specialist Lupus Nurses on staff as they tend to see the value of the role and continue to support it after our funding ends.

[Loopyloo43 in reply to Paul_Howard]

St Thomas had this service as I lived 200 mikes away it was invaluable to be able to have this service and saved me many trips which I could resolve over the phone and am sure if there were more it would be so helpful to all of us who can’t access this at present

[HelenL75]

We’re lucky to have a specialist lupus nurse in Leicester and she is fabulous, knowledgeable, responds quickly and always shows care and compassion while being a really good laugh like talking to an old friend. I didn’t realise not everywhere had this service until recently and how lucky we are she really knows the patients and helps bridge the gap between consultant appointments and has more specialist knowledge than most GP’s. She always makes you feel that you are not an idiot for asking about what might seem like a small symptom or concern