Anyone in Wales with osteoporosis? Multiple fractures and no local service? Please look at this post from the Royal Osteoporosis Society.

[Wendy39]

I spotted this post on Facebook relating to osteoporosis and services, or lack of, in Wales.

theros.org.uk/blog/what-is-...

[sparkleysally]

Sounds like they are looking into the lack of service...unfortunately doesnt mean they will actually rectify it. The worst thing they ever did was devolve health to Wales. Its great(sometimes) if you have somthing common otherwise its abysmal. Ive not seen a specialist in one of my conditions for years as they refuse to fund an out of Wales appointment...when Wales have no specialists in the disease. So have patients with the above and many other problems been compromised by lack of service in the area? of course they have- they dont need another expensive survey, or another investigative round that probably costs a ridiculous amount of money for somthing so blatantly obviouse.😒 ....Love Wales...but Rubbish health service.

[Wendy39 in reply to sparkleysally]

Hello sparkleysally

I totally understand the situation in Wales. I'm in Pembrokeshire and run a support group for lupus patients (as well as sjogren's, APS etc), in Pembs and Carmarthenshire, with over 60 members. I have been campaigning for change for years now. The fact that you cannot access lupus expertise outside of Wales, is totally damaging and unfair. The very worst postcode lottery.

I feel that the tide may be slowly turning re lupus care here. LUPUS UK has given feedback as part of the Musculo-skeletal review of services in NHS Wales and we are liaising with civil servants and the new Musculo-skeletal leads, to ensure lupus voices in Wales are heard.

Here are some links to show what I have been doing to raise awareness.

change.org/p/secretary-of-s...

ftww.org.uk/autoimmune/

There are other projects ongoing as well.

Ultimately, all these surveys and requests for patient involvement are very positive and we need to grab every opportunity to shout about how we feel, trapped in this system.

I too love living in Wales, (I'm originally from Bristol) but the NHS system is awful here.

Best wishes

Wendy

[sparkleysally in reply to Wendy39]

Hi Wendy

Thankyou for your reply. It is comforting to realise that I am not alone!

I'm not normally one for forums or groups and havn't gone on them until the last couple of weeks.

I wish I had done earlier!!!

After over 60 ish hospital admissions over the last 23 years, umpteen specialist in the wrong fields and being given a million possibilities of why, it finally became apparent that it is likely Lupus instead of all the diagnosis and undiagnosis of the last 20+ years.

I finally decided to pay to see a specialist in a months time.

Thats why I started looking on the internet for others that may have the same thing or even seen the same specialist. Can I be cheeky and ask who you saw? I have currently booked an appointment with Dr.D'Cruz. at the London Lupus Centre. Do you know if he is any good?

[Wendy39 in reply to sparkleysally]

Hello again

I’m so glad you found this group too! I joined just after my diagnosis, not knowing what lupus was at that point. I’ve posted so much and everyone here has helped my knowledge and understanding and help me come to terms with my own lupus symptoms. It’s been invaluable to me. And lead to me starting my own support group and becoming a Trustee at LUPUS U.K.

We are trying really hard to reach more people with lupus in Wales and push for change. You are certainly not alone. If you want to message me with your location in Wales and we could see if there’s a local group for you, or alternatively contact our national office for that info.

I am so relieved you said London Lupus Centre and Professor D’Cruz! Unfortunately many doctors / hospitals sell themselves as lupus doctors or experts but the reality is, that they really aren’t! I saw a rheumatologist in Swansea privately and he wrongly diagnosed me with SCLE. With hindsight he was a good rheumatologist for RA, which is their bread and butter but he was no lupus expert! So I hate it when people have paid privately and it’s not got them any answers! I go to London Lupus Centre and have done since 2017. I go once or twice a year and I just wish I’d gone sooner! It would have saved me a lot of heartache! I don’t see Professor C but I know he’s brilliant.

Good luck and please get in touch if you have any questions.

Best wishes

Wendy

[Betty909090]

Hi Wendy39,

Thanks for posting on this important issue of osteoporosis/bone thinning.

A few observations and queries:

1. Many of us lupus sufferers are prescribed corticosteroids eg Prednisolone long term, short term etc. When I was first diagnosed with lupus nephritis I was on fairly massive doses of Pred together with Calcium chewable tablets to prevent, “Prednisolone induced osteoporosis “. I’m now off the Pred but have never had a bone scan as promised by my consultant nephrologist!👆

Am wondering how many others are in this position?

2. Some of us may be suffering micro fractures WITHout realising this, thus being at risk from serious falls when weight bearing or just from walking?

Regular DEXA scans should happen for people on Pred? but I’m sure it isn’t?

I’m in England and use the NHS only.

Regards.

[Wendy39 in reply to Betty909090]

Hello Betty909090

I know bone health is a very serious issue for lupus patients and we are at risk even when we’ve not been on long term/ high dosage steroids. It must be linked to photosensitivity and flares using vitamin D??

Women are also high risk after the menopause. So having lupus as well makes us complex bone patients.

I am afraid I’m not medically qualified and so can’t be more specific.

I also understand that whilst this post relates to Wales, that not all lupus patients in England or Scotland have good bone care, as part of their lupus care.

I’ll attach here two links. One for the LUPUS UK publication on Bones and then the NICE Guidelines for the Management of Adults with SLE.

Maybe it’s worth you emailing The Osteoporosis Society, as above, voicing your concerns about your care in your area?

Best wishes

Wendy

lupusuk.org.uk/wp-content/u...

academic.oup.com/rheumatolo...