Lupus patients throughout the UK.: I went to a... - LUPUS UK

LUPUS UK

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Lupus patients throughout the UK.

awareness75 profile image

I went to a local Lupus group awareness event this weekend, which was informative. I was interesting to hear how some people have good hospitals and rheumatology, purely based on where they live (funding) and some don't.

I would be interested to know based on membership of Lupus UK, if there's a chart on how many Lupus patients live where in the country?

9 Replies

That is a GRRRREAt question! Maybe Paul the Administrator* (he's a hero 😍 😘xxx) could set up a survey? Welcome aboard! 😚xxx

*uh, anyone help with a link ??

Foggyme profile image
Foggyme in reply to eekt

Hi eekt. To do a link to someone, type in @ then start typing the persons name immediately afterward. The persons 'name' will (at some stage) appear in a box at the bottom of the reply screen. Tap that box and the person you want to include a link for will appear in blue your reply text. Hence Paul_Howard .

It that's what you meant 🤔😀😀.

eekt profile image
eekt in reply to Foggyme

Cheers Foggyme! I'm in a pea-souper....😶 that's what I couldn't do..Thanxxx

This is a very good question. Patients can be found throughout the UK obviously the higher numbers are in urban areas. With Lupus at a higher prevalence in the Afro Caribbean population this results in larger clusters in the Midlands and London areas.

It is of interest that Lupus UK has over 5000 members, however quite a few of these are family and friends of patients.

Over 20,000 folk use Health Unlocked.

One of my concerns are the numbers of people with Lupus and other autoimmune conditions who remain undiagnosed who are suffering now and may suffer major organ problems without treatment.

Best wishes

Kevin

Trustee

awareness75 profile image
awareness75 in reply to Kevin53

Hi Kevin. Thanks for that info. I'm glad you touched on the ethnicity of Lupus patients. I'm afro carribean background and of the albeit few AGMs/events I've been to, you can count the amount of black people overall that attend on 1 hand! Perhaps they are amongst the undiagnosed, but I do know growing up, that the ethnicity tend to keep illnesses to themselves or secretly. Very silly, I know but also potentially dangerous.

Regards,

Awareness75

That's an excellent idea! We know from Wendy's heroic battles that Wales is very badly provided.

I would guess, like others, that the larger cities and metropolitan areas ought to have better provision. I know that Lupus affects certain groups more than others. My experience is more from being a woman. We are not taken seriously unless we have a male accompany us to appointments.,sad but true.

Paul_Howard profile image
Paul_HowardAdministrator

Hi awareness75,

I'm really glad that you found the event helpful. Was it the West Midlands Lupus Information Day in Dudley or a different event?

We don't have a chart per-se, but I can generate figures for the number of members in different areas of the UK. This isn't the most reliable way to estimate where the biggest 'pockets' of lupus patients are because our membership only makes up a small percentage of all people with lupus and some areas will have lots more members if they have particularly active support groups.

As Kevin has suggested, we tend to see more lupus patients in urban areas with bigger population densities and also in areas with larger communities of black, African, Caribbean and Asian people. I've seen your comment about the lack of diversity and representation from these communities at some events and sadly it is the case in many groups around the UK. Some groups are almost exclusively from these communities though, including our Enfield Lupus Group. Sadly in some areas it appears to be difficult to engage with some members of these communities and so we don't have a lot of attendance at events.

Hi Paul. Yes, I was at the West Midlands group event. I hope to be going to a few more often, now I'm closer to the Dudley area.

Regards, Awareness75

Paul_Howard profile image
Paul_HowardAdministrator in reply to awareness75

That's great. Yvonne is wonderful and would be delighted to have more people attend the events she and her group puts on.

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