Kathy

[Burrell]

Hi I’m a single person and I’m now living in a unfit room from the council because before Christmas I was homeless the room has no cooking facilities so I carnt cook and I have no hand rail nothing to help I keep hurting myself in this dirty mouldy room I feel so alone even nearly taken my own life can any one no of any help thanks

[AgedCrone]

Try talking to your rheumy nurse next week ...she may be able to,put in a word to get you some more suitable accommodation. You have been very unfortunate to fall homeless at this time year when all the support services seem to be overrun.

I do hope things look up for you......maybe somewhere like the Salvation Army could help you get a little microwave so that you could at least have some hot food.

[Hidden in reply to AgedCrone]

AgedCrone -Many of us with connective tissue diseases other than RA don’t have these rheumy nurses you speak of?

Kathy - I’m so hoping that you can get the help you need. Perhaps the GP and local charities distributing hot food would be your best bet for warmth, hot food and to help beat the isolation. Please take care.

[AgedCrone in reply to Hidden]

Hi TT...maybe have a word with your Practice Nurse.....they usually have some knowledge of what services are available.

I'm wondering if the Rheumy Nurses are going to be phased out...I had an automated reply to an email I sent my rheumy nurse saying something like "After 1st December the Rheumatology Nurses will be unable to reply to emails, please call the Rheumstology helpline & leave a message "!

Well whenever I have called that line it is answered by a village idiot who cannot even spell John Smith, let alone an unusual surname like I have. I gave up in the end & sorted whatever it was myself...but that is not always possible ..so goodness knows what will happen!

The way things are progressing I really fear for all NHS. Outpatient services!

But hey...we could always get B&B in the new 'Drunk Tanks' in A&E!

[Hidden in reply to AgedCrone]

I suppose what I’m saying is that this is Lupus UK HU rather than NRAS. And on the whole people with Lupus, Sjögren’s and other rare CTDs don’t have the same support pathways as people with RA may get if lucky - so we are usually served even worse by the NHS. The more common the disease the larger the related charity and the more treatment and support pathways there are.

I only know this having previously been misdiagnosed with RA.

[AgedCrone in reply to Hidden]

I have found over the years with both with RA conditions & those unrelated to RA the nursing staff at your practice often have the info you need, but you have to stand firm to get it.if I can't find info I ask to see the Practice Manager & that usually gets results.

[Fennella02 in reply to AgedCrone]

Gosh, my rheumy dept will fall on its face without the 2 excellent (and 1 less excellent) rheumy nurses.

[AgedCrone in reply to Fennella02]

I'm lucky in that I haven't needed them very often, but I did find if I sent an email I always got an answer....it may have taken a couple of days but you were listened to & could get the right information across. Now I find the line is answered by somebody with no knowledge of RA....so doesn't understand if you describe a condition etc.

I guess it's a cost decision....but surely with the scarcity of rheumatology services an email facility should be Esential in the 21st Century?

[rubyru]

Dear Kathy, I’m sorry that you feel so bad but please know that people do care. The citizens advice is another place you could try as well as the Salvation Army and any local church. Please don’t give up - just ask people for help as I know I would come and help you sort out your room if I lived near to you. Love to you xx

[Burrell in reply to rubyru]

Thanks I’m doing everything the council has asked me I feel very upset and unsafe hear

[whisperit]

Hello Kathy

That sounds like a terrible situation. Do try and get hold of someone who knows about your entitlements and options for alternativ accommodation.

Th housing charity Shelter run an expert housing advice helpline which is open from 8am to 8pm weekdays and 9-5 on weekends.

The number is 0808 800 4444

It's free.

They also have an emergency line

More details are on their website

england.shelter.org.uk/get_...

X

[Florriemay]

Hi, so sorry you are having such a horrible time.

Go surgeries are used to helping with helping with getting patients more suitable accommodation.

I did 2 years six months in a homeless b&b but my gp got me a double size room with a double bed ( tossing and turning trying to sleep and restless leg syndrome) and a bath so I could have soaks in hot baths.

It will not be easy but you must persevere.

If you have hospital consultant of Amy type they can refer to hospital social workers ( have various names for their teams) they are usually listened to.

You must get help from cab/ shelter/solicitor. I think you still get legal aid when you are homeless.

Good luck.

[Burrell]

Thanks for your advice

[Hidden in reply to Burrell]

Hi Kathy - how are you doing now? X

[Paul_Howard Partner LUPUS UK]

Hi Burrell ,

I am sorry to hear that you are in such a difficult living situation at the moment. How are you getting on since your post? Have you received any expert advice on this matter yet?

There are a few services which you may wish to consider contacting for advice if you haven't already;

The National Homelessness Advice Service (NHAS) - nhas.org.uk/factsheets

Citizens Advice - citizensadvice.org.uk/housi...

Shelter - england.shelter.org.uk/hous...

You may wish to speak with your GP to see whether they can refer you for local Occupational Therapy services to see whether this could help with any appeals you may have. Sometimes you can also access this through your local council. You can see if you can at gov.uk/find-local-council

Please speak to your GP about your depression and thoughts of suicide so that they can offer you some additional support and treatment if needed. We have a blog article with lots of information and advice for people with lupus who are struggling with depression and/or anxiety - it includes information about support that is available, including chatting to other people with lupus. lupusuk.org.uk/coping-with-...

If you are struggling with getting your housing situation changed after getting advice from the above services, it may also be worth contacting your local MP for assistance. You can find your MP at parliament.uk/mps-lords-and...

[Burrell in reply to Paul_Howard]

Hi yes I’m in touch with shelter and they have been really helpful still feel helpless but I must be positive . And it’s nice to think that there is some people who is there to listen I will keep in touch xxx