Services for people with rheumatoid arthritis

[Ravenheart]

I thought I'd posted about this, but seems I didn't.

On the 15th July the National Audit Office produced a report into the services for people with Rheumatoid Arthritis

http://www.nao.org.uk/publications/0...ith_rheum.aspx

The BBC News site had an article of the report findings

http://news.bbc.co.uk/1/hi/health/8149735.stm

As someone who has had RA for around 17 years, I can't stress how important early intervention is in dealing with the condition. The care I have received from my GP and my local rheumatology department have been nothing but excellent, but it's not the same across the UK.

In the voluntary work I do for NRAS the number of people I have spoken with on the phone who have had a positive RA diagnosis via a blood test, yet their GP simply gives them Ibuprofen and doesn't refer them to a rheumatology department is quite alarming.

Early intervention can really make a huge difference, and hopefully preserve a better quality of life for the person themselves, but also to the benefit of their family, and employers.

The National Audit Office have now added some video's from the DVD they produced to accompany the report, you can find them at the link below

http://www.nao.org.uk/publications/0...is_videos.aspx

We really need to raise awareness of RA as it's such a debilitating condition.

If I can help point people in the right direction for more information, just let me know

Hope folks don't mind me posting this, but it's a cause very close to me.

Jo.
(in grumpy bear mode thanks to her wonderfully considerate neighbours)

[Sox]

I have just been diagnosed with this.For months I have had pain in most of my joints.The worse at the moment is down my left side.I find it very difficult to dress.Tht worse thing is I don't know how bad or how fast it spreads etc.I care for my mum at the moment who is 87 and has terminal cancer and also suffered a stroke last year when my sister died of cancer.I don't want anyone else to care for her but with her being confined to a wheelchair and I have never drove a car it's painful to push her.It is also getting difficult to grip things.
Thanks for posting

[Ravenheart]

Hi Sox,

Sorry to hear about your recent RA diagnosis, but with the right combination of medication it does make it a hell of a lot easier, thing is sometimes it takes a few different meds to see what works best for you.

There's a number of gadgets and things you can get to help with gripping things, and opening jars etc. If you're under a rheumatologist ask them if they can let you see the occupational therapist (OT) as they help with items like long handled shoe horns, things to help with socks/tights and another one for buttons.

I can understand you not wanting anyone else to care for your mum, and again the OT might be able to help. It might also be worth you calling the NRAS helpline for some advice, as we have some members who have RA and are carers themselves.

You can find the NRAS site at http://www.rheumatoid.org.uk/

And the helpline number is 0800 298 7650

From there you could also probably arrange for one of the volunteers in a similar situation to yourself to give you a call and offer some advice from someone who understands you can also get in touch with the Support Network by calling NRAS on 0845 458 3969

I did a few articles on things that you can do to help with painful hands, I'll dig it out and post it here.

But don't feel alone or isolated with RA, there's lots of wonderful folks out there who can help

Hope this helps, and I hope the creaky joints behave.

Best wishes

Jo.

EDIT: NRAS also have a number of publications that are very useful. some are available as PDF's from here

http://www.rheumatoid.org.uk/index.php?page_id=30

If the booklet isn't available for download give them a call with the booklets you're interested in and they will send them out, the new Managing Well: living with rheumatoid arthritis is a very good one.

[Sox]

Thankyou for all the infomation mate
Cheers
Paul

[superbiatch]

Originally Posted by Sox

Thankyou for all the infomation mate
Cheers
Paul

What PCT area do you live in Paul? Might be able to get you details of local contacts when I'm in work tomorrow.

[Sox]

I come under Knowsley/St Helens
I have applied for physio and it is being reviewed
I will here in 2-3 weeks
That would be most kind of you
Thankyou

[superbiatch]

Originally Posted by Sox

I come under Knowsley/St Helens
I have applied for physio and it is being reviewed
I will here in 2-3 weeks
That would be most kind of you
Thankyou

I actually applied for a job with them a few weeks back - how weird

Anyway, I do know one of their physio's as I saw her privately after an accident and she was amazing. I can get you the contact details tomorrow and from what I can remember you can self-refer to them, have you done this or your GP?

[Sox]

I posted a self-Refer form off my GP said that would be the quickest
Thankyou

[Sox]

Got my appointment through today.It's at my local GP's health Centre.12th October.

[superbiatch]

Originally Posted by Sox

Got my appointment through today.It's at my local GP's health Centre.12th October.

Can you wait until then Sox? Or is there a chance of a cancellation in a different venue?

[Sox]

Originally Posted by superbiatch

Can you wait until then Sox? Or is there a chance of a cancellation in a different venue?

Yeah,I'll be OK,Thankyou.
The pain is torrable for some of the time
I take some of me ma's Cocodomol if it gets too bad

[superbiatch]

Originally Posted by Sox

Yeah,I'll be OK,Thankyou.
The pain is torrable for some of the time
I take some of me ma's Cocodomol if it gets too bad

Or buy some 400mg ibuprofens, work a treat

[Sox]

Originally Posted by superbiatch

Or buy some 400mg ibuprofens, work a treat

I'll try to remember that
Cheers