I recently listened to a radio programme where the contributors were arguing that term “schizophrenia” should be abandoned in favour of a more descriptive and less pejorative name.  There were a number of suggestions put forward for this new name, but what they all had in common was a desire to reflect the reality of schizophrenia from a patient perspective whilst being more accurate and informative for those without the condition.

The programme piqued my interest because I think that it’s time that the term “Rheumatoid Arthritis” had a makeover too.  If you suffer from RA yourself you’ll be familiar with the type of comments that abound when you talk about your diagnosis.  People often confuse it with osteoarthritis and will empathise with you by sharing their own “aches and pains”.  However, whilst osteoarthritis is another dreadfully debilitating condition, it doesn’t generally include the type of systemic effects that are common with RA, and doesn’t require the aggressive and often toxic rounds of medication that people with rheumatoid arthritis have to accept should they wish to avoid serious joint damage.  There is a real lack of understanding out there.

Don’t get me wrong, I don’t blame my friends and family.  Before my diagnosis I knew nothing about RA either and would probably have been guilty of making the same sort of comments.  No, what I blame is the name, which is both ambiguous and uninformative .  So here’s my challenge to you.  Can you come up with a better name for Rheumatoid Arthritis?  I’d love to hear it.

PS:  There are some great organisations doing their best to raise awareness of RA.  In the UK the most well known is the NRAS who are making a Radio 4 Charity appeal on Sunday 17th January at 07.55 and 21.26.  And if you can’t manage either of those times then it is repeated the following Thursday at 15.27.  Well worth a listen! Find out more

We’ve had a great deal of feedback recently from customers asking where they can get hold of a Funky Arthur catalogue. Well, today we’re pleased to announce that you can now download and print our catalogue in PDF format to browse at your leisure. Please feel free to use as many copies as you need, and do pass them on to any friends that may find our products useful.

The catalogue contains our full range of arthritis aids, alongside pricing and details of how to buy.  Take a look, we hope you enjoy it.

Download an arthritis aid catalogue.

Men and women are different, we all know that, but a team at the University of Aberdeen are concerned that these gender differences may impact upon the evaluation of osteoarthritis treatment.

Assessing the success of treatments for osteoarthritis often involves administering patient questionnaires. Dr Pollard of the University of Aberdeen’s College of Life Sciences and Medicine argues that some questions may skew results, giving an inaccurate picture of the effectiveness of treatment.  Dr Pollard explains:

“The classic example is a question to assess how depressed people are which asks ‘Do you cry a lot?’.  Women may say ‘yes’ to this question when they are only mildly depressed, but men who say ‘yes’ are usually more depressed”

The Arthritis Research Campaign (ARC) has now awarded the team a grant of £122,000 over three years to carry out research which should result in more accurate assessment of patient outcomes.  The study will look at how gender, socio-economic, demographic and clinical factors affect the way people respond to questions.  Dr Pollard continues:

“This is very important as many decisions about the treatments patients with osteoarthritis receive are based on results from such questionnaires.  We hope the funding from the Arthritis Research Campaign will enable us to improve the accuracy of these questions and ultimately the treatment patients receive.”

A recent study suggests that increasing the strength of your thigh muscles may protect against the pain of osteoarthritis in the knee - for women at least. 

Researchers recruited around 1600 participants thought to be at risk of developing knee arthritis based on factors such as weight, knee symptoms or previous knee surgery or injury.  Anyone who had experienced knee pain in the preceding 30 days was excluded from the study.  After 30 months, the researchers found that women with the strongest thigh muscles at the start of the study were less likely to get arthritis knee pain.  The effect, however, was not seen in men. 

Interestingly thigh muscle strength was not linked to the chances of visible x-ray damage without pain, only symptomatic osteoarthritis. More research is needed to explain why this should be the case, and of course the study may not apply to people without an initial high risk of developing osteoarthritis.  Nonetheless in the interest of prevention rather than cure, perhaps today is the day to finally dust down the thighmaster?

Arthritis Care is a phenomenal charity which works exceptionally hard on behalf of all people with arthritis.  If you haven’t already, then do take the time to visit their website at www.arthritiscare.org.uk - you’ll find a ton of useful resources and an award winning discussion forum full of members who know exactly what you’re going through.

Arthritis Care are looking for people who would like to take part in a sponsored skydive.  You can choose from 3 different types of jump; a tandem where you experience the thrill of skydiving from around 12,000 feet - strapped to an instructor and safely guided to the ground, a thrilling solo skydive - with two instructors with you as part of an Accelerated Freefall training course, or a static line parachute jump - performed from around 3,000 feet. All training is provided and no previous experience is required.

If you raise enough donations in sponsorship, around £360 depending on the type of jump you choose, you will get to jump for free!

For more details visit http://www.arthritiscare.org.uk/GetInvolved/Events/SponsoredSkydive

The link between depression and Rheumatoid Arthritis is well known, but recent research suggests that the mental state of your spouse may also have an affect on the disease activity of your RA. 

This is the conclusion of a study carried out by Mark Lam of the University of British Columbia in Vancouver.  Lam studied 133 married couples and found that increased levels of spousal depression predicted a worse disease course in the partner with arthritis.  The findings stood up even after taking into account initial depression and disability in the person with arthritis.

The mechanisms behind these results are not understood.  The authors concluded that “whether depressed spouses are unable or unwilling to provide much needed support to the PWRA [person with rheumatoid arthritis], or whether their depressed mood affects PWRA outcomes in some other way, is yet to be determined”.

Nonetheless, this study suggests that a more holistic approach is required in the treatment of RA - one that looks at the whole of the person rather than just their symptoms.  A word of caution though, the study was in part funded by Pfizer, a well known manufacturer of anti-depressant drugs.  More research, as always, is required.

World Arthritis Day unites health professionals, employers and sufferers of rheumatic disease to campaign on a different theme each year.  Previous themes have included ‘Small things Matter’ - focusing on everyday challenges around the home, ‘Take Action!’ encouraging people with arthritis to exercise and raising awareness of its benefits and ‘Living without Pain’ highlighting the importance of the right attitude and approach in making a difference to someone’s quality of life.

World Arthritis Day falls on 12th October 2009 and this year’s theme is ‘Let’s Work Together’ which aims to consider the challenges of work for sufferers of rheumatic diseases.  The campaign is supported and managed by EULAR, the European League Against Rheumatism and you can help by completing their short ‘Let’s Work Together Survey’. 

Enter the ‘Picture This’ Competition
If you have any eye for the camera, you might also be interested in entering the World Arthritis Day “Picture This” competition.  Simply submit your photographs showing a positive image of working with a rheumatic disease, perhaps with a supportive employer, using adapted equipment, or benefiting from a new therapy or treatment. Add a short accompanying sentence which describes in a few words what’s special about the picture, or why work is important to the person featured.

Anyone with a rheumatic disease can enter an image but only entrants from EULAR membership countries are eligible to enter the competition for €500 and an all-expense-paid trip to Tallinn to attend the ‘Let’s Work Together’ exhibition. The competition closes on 11 September 2009, and the winners will be announced on 12 October. See the Picture This website for more information and terms and conditions - good luck!

A report published yesterday by the National Audit Office (NAO) found that previous estimates of the number of Rheumatoid Arthritis sufferers in the UK may have been vastly underestimated.  Chris Groom, audit manager for the report said:

“We estimate that 580,000 adults in England have the condition, which is higher than existing estimates of 400,000 for the UK, and that there are 26,000 new cases each year in England, compared to existing estimates of 12,000 for the UK”. 

These figures are truly staggering and even more worrying when you consider that previous estimates took into account the whole of the UK and not just England. 

The report detailed a number of other findings, including:

•  20% of people with RA delayed seeking treatment for more than a year
• 18% of patients visited their GP more than 8 times before they were diagnosed with RA
• 60% of GPs do not use specific guidance or criteria to help them diagnose RA
• 20% of RA patients felt they had received insufficient information about continuing employment after diagnosis
• 3/4 of Primary Care Trusts have not assessed the number of people with RA in their area

The National Rheumatoid Arthritis Society (NRAS) responded to the report by calling for a campaign to increase public awareness of rheumatoid arthritis.  Ailsa Bosworth, Chief Executive and Founder of NRAS said:

“A public awareness campaign like those undertaken to tackle other common chronic diseases would make the public, health professionals and commissioners aware of the urgent need for specialist treatment to prevent rapid irreversible joint damage that can lead to permanent disability and often loss of employment”

Revised estimates suggest that RA costs the NHS £560 million a year, with an additional cost to the economy of around £1.8 billion through sick leave and work-related disability.  With costs like this, any campaign which improves access to early diagnosis and treatment is without doubt a necessary and essential investment.

From now until the end of July, Funky Arthur are offering every customer a FREE Dycem Bottle Opener with every order over £35.  You don’t need to do a thing, the free bottle opener will appear in your basket when you checkout - it’s that simple!

The Dycem bottle opener is a handy little gadget, simply place it on top of stubborn bottle tops and twist to open. The non-slip Dycem properties also provide a great grip to ensure a good seal when closing bottles tops.

Hurry though, this offer ends 31st July 2009.

In a recent UK survey carried out by Wyeth Pharmaceuticals and supported by the NRAS, 575 rheumatoid arthritis sufferers were questioned about the impact of RA on their lives.  The results put into sharp focus the major impact that a diagnosis of RA can have; more than 94% of respondents claimed that the condition compromised their independence in some way, with more than 60% saying that their independence was compromised significantly.  Nearly half of those questioned claimed that earlier treatment would have made them more independent today.

These results suggest that the message of early and aggressive treatment of RA is still not getting through.  This is a subject dear to my heart, having experienced at close hand the patchy nature of NHS provision for newly diagnosed rheumatoid arthritis patients.  Anecdotal evidence suggests that rheumatology clinics may be fast-tracking ”new” patients” in order to meet government targets.  Once seen, these patients become “old patients” and go to the bottom of the clinic list, waiting months for the next appointment when treatment will begin.  This chimes with my own experience; seen in January the consultant asked me to return 4 months later with a view to starting treatment.  This 4 month appointment date turned into an appointment 6 months later and very nearly (had I not complained) into one 12 months after my initial consultation. 

This is clearly madness, early and aggressive treatment should be a right not an aspiration.  It is without doubt the only route for all concerned.  With estimates placing the direct and indirect costs of RA to the nation at around £4.5billion, much of that due to lost productivity,  it’s time for the money men at the government and frontline NHS staff to get together and engage in a little joined-up thinking.