Services for people with rheumatoid arthritis

Following the National Audit Office report into those with RA, they have now added the video’s used in a DVD they produced to accompany the report. The DVD contains patient stories covering the themes in the report.

The videos from this DVD are available at the links below.

Introduction (2:09)
Symptoms (3:31)
Presentation to GP and Referral (6:05)
Diagnosis (4:47)
Impact on Life (5:42)
Awareness and Reaction of Family and Friends (2:40)
Self Management (3:41)
Working with Rheumatoid Arthritis (4:58)
Support and Information (4:45)

Report resources

Threat to disability benefits outlined in green paper

A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead. The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

A campaign against the proposals has been set up, which you can find here

These benefits were introduced so that people with a disability could lead more independent lives, and letting the massively under resourced Social Services to deal with the needs of disabled people would be a disaster.

This government have bankrupted the country, bailed out the banks who helped get us into the situation, MP’s abused tax payer cash for their own gains so now they hit the most vulnerable members of society to try and recoup the cash.

With an election on the horizon, now is the time to get ourselves heard and give all parties a clear concise message.

Credit where it’s due..

I have to make a post about the great service I’ve had from LG.

My mobile phone died recently and is still under warranty I phoned Orange (who were quick to answer and very helpful) they gave me the number of LG, who I called and again were really helpful, they sent out a pre paid special delivery packet to return the phone for repair which arrived next morning.

I sent off my phone Thursday afternoon, and this morning (Saturday) my phone has returned, fully working and with a later firmware which has sped the phone up.

We often hear of poor service from companies, so credit where it’s due, thank you Orange and LG for the great service

NRAS “Heart of England” RA Group – Follow up

Just back from a really positive evening at the meeting.

It was good to see Paul and Clare from NRAS HQ again and I have to express my thanks to all the team at Solihull hospital for such a well organised event.

The three main rheumatologists, the nurses and OT, physio were all in attendance and each gave a short talk.

I applaud them for the statement about the benefits of hydrotherapy on RA patients it’s such a pity that the small pool at Selly Oak Hospital had to close on the argument that it was of “no benefit”.

A really good turn out and I managed to chat to a few folks, and I came across the usual case of someone being diagnosed by their GP but they hadn’t been referred to the rheumatology department, now armed with some information they were going to see their GP about it and get this rectified, especially as the point that early aggressive treatment is beneficial in the long term management of the condition.

Made a few new contacts, and a few members of the Birmingham group were in attendance, Beverley and Val, and John from the local ARMA group.

There seemed a really positive response to the group and I think it would be a huge benefit to both the rheumatology team and the patients if a group gets formed.

A really productive evening

NRAS “Heart of England” RA Group

The recently announced NRAS “Heart of England” RA Group will have it’s launch meeting today Wednesday 22nd July 2009 between 5.15pm and 7.30pm

The meeting will be held at the Education Centre, Solihull Hospital, Lode Lane, Solihull B91 2JL.

Talks from Dr Robert Palmer & Dr Shirish Subey, Consultant Rheumatologists as well as Clare Jacklin, NRAS Volunteer Network Manager.

You can get more information on this event by calling NRAS on 0845 458 3969

I’ll be popping along to offer my support to the group, and to publicise the Birmingham NRAS group too.

Your view on your Rheumatoid services..

As a result of the recent ARMA and National Audit Office reports into the treatment of patients with Musculoskeletal conditions in particular Rheumatoid Arthritis, I thought I would gauge reaction to the findings.

I have added a poll below and it would be great if you could take a minute to register your vote.

Please only complete the poll if you’re in the UK (sorry rest of the world!!)

Are Rheumatoid services failing?

More gloomy news for those in the UK with RA this morning.

In a new report from the National Audit Office published today paints a gloomy picture.

Amyas Morse, the head of the National Audit Office, said today: “Patients with this debilitating and distressing disease are not identified or treated quickly enough and this dramatically affects long-term outcomes and people’s ability to remain in work.

The BBC News site has a piece up about the report already and other news outlets are starting to report the findings.

As I’ve said a number of times, I’m incredibly fortunate to live in a PCT area that I feel is very proactive in the treatment of RA, my GP is always willing to assist in my NRAS work, and once a year I do a talk to medical students hopefully to increase awareness in them of the long term effects RA can have.

But with people going undiagnosed, or not being referred to a specialist soon enough may save money at present, but long term those critical first few months could make a world of difference, not only to the life of the person with RA, but their family, friends and employers.

The treatments for RA over the last few years have improved dramatically, and I know from my own experience that Anti TNF treatments can make such a huge difference.

I also echo the words of my Rheumatologist, who has often said that he feels that the term Arthritis when used in RA often makes people think that it’s only older people who suffer from the condition.  RA can strike at any age and is an immune condition rather than problems caused by the wear and tear on joints as we get older.

Where do we start to address the problem? We certainly need to increase awareness of RA, especially if the number of reported diagnosed cases is 75% higher than first thought. I know that ARC , ARMA, Arthritis Care and NRAS are always working hard to make awareness higher, not only with the public but also with the medical profession too but as a collective we obviously need to do more.

The public purse is always going to be a restriction on the treatment that we would like to give anyone with any kind of long term condition, but is it really prudent to refrain from referring a patient to a specialist knowing that the initial delay could cause a whole host of new problems in the future?

A lot of work has been done to improve the treatment of RA here in the UK, but from the report from ARMA a few days ago and the latest findings from the National Audit Office it seems that we still have a long way to go.

I would encourage anyone with RA to get involved with support groups, lobby your MP, see if your local PCT has any patient groups where you can get your voice heard, as it’s the squeeky wheel that often gets the oil.

Millions Of People With Musculoskeletal Conditions At Risk Of Being Let Down By NHS

An interesting piece over on Medical News Today, which I do keep an eye on for info on latest developments in the treatment of Rheumatoid Arthritis.

Millions Of People With Musculoskeletal Conditions At Risk Of Being Let Down By NHS

Quote:

A report based on Freedom of Information requests and published by the Arthritis and Musculoskeletal Alliance (ARMA) also reveals that just under half (45%) of PCTs do not define life-long conditions such as arthritis as ‘long-term’, meaning people with musculoskeletal conditions are being ignored in large areas of the country

http://www.medicalnewstoday.com/articles/156997.php

This is something that often concerns me when I make support network calls for NRAS, I think I’m extremely fortunate that I have a wonderful rheumy team and access to one of the UK’s leading hospitals to repair my damaged joints.

But some of the things I’ve heard from people across the UK is really quite upsetting, to think people are being left in pain, distraught and isolated with this awful disease, and that from this report some PCT’s don’t see RA as important to deal with.

We need to address this, and soon. To ensure that RA is more widely understood and those with it treated properly instead of being neglected.

Rheumatoid Arthritis Guy’s 60 Second Guide to RA

I recently discovered a great site called Rheumatoid Arthritis Guy, it is a well written and informative site by someone who has RA. Written in a down to earth way his 60 Second Guide to RA is a great introduction to RA and would be ideal for those newly diagnosed.

You can also follow Rheumatoid Arthritis Guy on Facebook if you have an account there and can find him by clicking HERE

Ancient Artefacts Uncovered

After watching the excellent programme on BBC One last night about the discovery of the primate fossil (which they have named Ida) in the Messel Pit in Germany, I was inspired and continued my excavation of the back of drawers and cupboards that seem to have been lost in time.

This morning a number of artefacts were recovered and were quickly photographed in case they turned to dust in our modern climate.

What was more astonishing was that both of these primitive communication devices were also discovered in close proximity to their charging devices. The work continues to see if we can recover any more interesting tat items.