LUPUS UK is seeking a case study for a Lupus Awareness Month press release

[Paul_Howard]

We are currently putting the finishing touches to a press release ready to be sent out prior to Lupus Awareness Month in October. We are highlighting the need for better awareness and understanding of lupus by General Practitioners, especially when it comes to diagnosing people with the condition.

We are looking for somebody that would be willing to share their case story, and potentially be interviewed by the press if they want to publish a story. In order to submit your case study for consideration, you must;

•Be over 18 years old and live in the UK

•Have a diagnosis of systemic lupus or discoid lupus

•Have experienced difficulty/a significant delay in diagnosis due to your GP

•Be happy for your case study to be shared with national press and be willing to interview if asked

If you meet these criteria, please email [e-mail] with an outline of your story about your diagnosis.

Thank you.

[Hidden]

Hi Paul

It is great that you are addressing the delays in diagnosis. I am one of those people who visited my GP many times with various symptoms that were associated with other possible causes. However I am not convinced that this particular approach is going to help. Is there a risk that it will merely point the finger at GPs and perhaps invalidate their role in health care. I agree that there is a lack of awareness but is there a better way of raising awareness other than publishing the perceived failure of the GP population?

[Paul_Howard Partner LUPUS UK in reply to Hidden]

Hi madlottie,

The press release is designed to highlight the problem that people experience, what needs to be done to fix it and what LUPUS UK currently has planned to help improve things. Our aim is not to demonise GPs, as we appreciate that they cannot have a deep understanding of all conditions, we want to help them recognise the symptoms and refer people.

[Hidden in reply to Paul_Howard]

I appreciate that but I am sorry to disagree with this particular approach that Lupus Uk are taking.

[swhite100]

Hello Paul,

I too am one of those people who unfortunately experienced quite a negative attitude and response to my symptoms from my GP (approximately for 5 -6 years). I ended up transferring to a different GP within the same surgery after my old GP had suggested that everyone should expect some aches and pains at 40 years old (I couldn't walk up the stairs), it's normal to lose hair (daily apple sized balls of hair loss) and that although it was most likely I would end up with a diagnosis of fybromyalgia, I should be grateful I was not being told I had cancer!! (He has since retired!) I do not believe he was helped by my local hospital's rheumatologist who again was dismissive despite plenty of clinical evidence. All she kept telling me was that I did not have rheumatoid arthritis, something that was never even suspected. She made me feel as if I was wasting her time! There was never any suggestion of onward referral or investigations in order to establish the cause of all of my symptoms, despite numerous appointments and conversations where I had raised my suspicions of SLE.

It was only when I insisted upon a second opinion following a suggestion from my new GP, that things took a more positive turn. I am lucky that I live within the catchment of the National Hospital for Rheumatic Diseases, Bath, and since being referred to them two and a half years ago, I haven't looked back. This summer I received treatment with Rituximab and at last I am beginning to feel (and apparently look) more like my 'old self '. The support and understanding I now receive from my current GP and all of the Lupus team at NHRD are invaluable.

I may consider sharing my story but I would not want to 'name and shame'. Instead, make the point that as a patient it is important to not give up, and that education and awareness (patients and all healthcare professionals) is the key to helping those who are affected by the disease.

[Dimpled1]

At the moment there are a great many discussions and ads regarding cancer, a dreadful disease and I have lost two relatives, friends plus a surviving cousin with it.

However I have seen no mention anywhere, on any TV channel etc regarding lupus. It IS lupus awareness month, and there are celebrities who have lupus or a family member does.

Why then is there not one mention of it? I am aware it is expensive but is it not possible for a two minute slot for a week? If more people suffer from Lupus than MS and Hodgkins Disease put together can we not scream from the TV about it? I don't watch morning/afternoon TV until 5pm which I suspect is the same for most people bud during a flare last week I shouted each time the cancer ad came on. I am in no way diminishing cancer...in fact it was thought Lupus was a form of cancer, but please, before I slip my mortal coil, can someone, somewhere shout out about this's.

A few years ago I gave my story to a group of medical students. They made all the right noises but nothing was heard back.

Lupus started for me in the early fifties. Please let's stop being polite and start yelling about our condition

Dimple

[Paul_Howard Partner LUPUS UK in reply to Dimpled1]

Hi Dimpled1,

Unfortunately a TV ad campaign to raise awareness of lupus is currently something which is beyond our reach because we are a small charity and we cannot afford the cost of it. We do our best to get the national media's attention and secure interviews with patients, and whilst we have had some success with magazines and newspapers, it is very rare that we have any success getting somebody to talk about lupus on TV. We are not deterred however and we continue trying to raise awareness in the ways that are available to us with the resources we have. Awareness of lupus is improving, if slowly and over time we are seeing it getting more attention.

[Dimpled1 in reply to Paul_Howard]

I understand fully, I really do. You mentioning magazines reminded me of my awareness of Lupus UK. Many years ago I was reading one of tithe ladies magazines and read a young woman's account of her battle with a strange illness when told it was all in the mind. After eventually being diagnosed and treated she was much better. At the end of the article was a small box with advice on who to get in touch with if the reader had concerns and a contact number given. It was Lupus UK and for the first time I phoned that number. The person on the end of the phone was marvellous and I joined Lupus UK and read the magazine ever since.

So that article about a young frightened woman helped me and maybe others too.

I hope that somehow you might be able to do it again one day. As an ex nurse I am aware of lots of nasty debilitating conditions that most people never hear of. Money is in short supply for all of these and us.

Thank you for replying to my outburst. I have been a victim of Lupus for over fifty years and at the moments am having a roller coaster flare, it can't make it's mind up and I get a bit cross sometimes.

You are appreciated. Once again thanks

Regards

Dimple

[Paul_Howard Partner LUPUS UK in reply to Dimpled1]

I'm glad that one of the magazine articles we managed to secure helped you to find us. We do notice that they have an impact, though it does tend to be limited and we constantly hope for more widespread attention for the cause.

[Dimpled1]

PS

I don't want to hog the debate but would like to say it was not GPs who made finding a diagnosis difficult, it was hospital doctors and even nurses. I am serum negative Lupus and unfortunately many doctors did, still do, want the answers written in blood. I finally found a rheumatologist who doesn't but it was my GP in 1968/1974 and before who thought it was SLE and eventually started me on Pred. Magic.

I am still phobic about hospitals.

[Paul_Howard Partner LUPUS UK in reply to Dimpled1]

You were fortunate that you had a good GP that knew about lupus and fought for you. Unfortunately, the majority of cases we hear about tend to express more difficulties with their GP and struggle to get a referral to a rheumatologist. There are certainly rheumatologists out there that people have difficulty with and we do also campaign to improve awareness amongst them.

[teacher3]

Hi Paul, I have been off work since April when I had my first really bad 'flare' with swollen joints and muscles. I was in an incredible amount of pain, unable to get out of bed by myself or hold a cup to drink. My GP made a home visit, arranged for me to have blood tests, put me on steroid tablets and referred me to a rheumatologist at our local hospital. The rheumatologist referred to my blood tests at the time as 'your lupus' but still now refuses to give me a definite diagnosis. My GP has stated that 'It's lupus Until they (rheumatologist) can catagorically tell me otherwise. In the meantime im still in no mans land. I'm about to lose my job and am going through the difficult task of trying to claim benefits.

[Paul_Howard Partner LUPUS UK in reply to teacher3]

Hi teacher3 ,

Has your rheumatologist suggested a different diagnosis or are they still monitoring you and performing additional tests to ensure that they get a correct and complete diagnosis? Lupus is a complicated condition and often overlaps with other similar conditions too, so it can unfortunately take some time to get a diagnosis.

Have you been started on any treatment to help alleviate your symptoms?

Are your employers aware of your current health problems? Have they made any adjustments to help you manage better in your current role? We have a couple of booklets which you may find helpful. You can read and download them at lupusuk.org.uk/working-with... or if you need physical copies posted to you, just send me a private message or email [e-mail]