The survey of women in the United Kingdom (U.K.) reveals that rheumatoid arthritis (RA) has a severe emotional and physical impact on people living with the disease and their families. Feelings of detachment and isolation from those closest to them due to RA are especially prevalent at Christmas, which should be one of the happiest times of the year. The survey findings of 300 women with RA living in the U.K. suggest that 33% feel the disease impacts on their enjoyment of family events like Christmas, which increases to 39% for women with moderate RA.

Additionally, RA is impacting on personal relations, with more than a quarter of women believing the condition affects their closest relationships for the worse, and 61% feeling that friends and family do not understand their pain.

“Three quarters of UK women living with RA experience pain every day, which can be more intense during busy times of the year, such as Christmas, and this can seriously impact a patient’s enjoyment of the festive season. More than half of patients included in the survey are not talking to their physician about pain control options, which is imperative to enable them to take control of their pain, especially around Christmas when pain can be a considerable issue. This will ensure that more patients achieve a pain free ‘good day’ and ultimately improve their quality of life.” Said Professor Paul Emery, Professor of Rheumatology, University of Leeds.

Shopping for gifts, preparing food, writing cards and going to parties are four festive activities that women living with RA in the U.K find most difficult to do. Among women with severe RA, more than three quarters (78%) experience difficulty when shopping for gifts, and 71% report it painful to prepare Christmas food, with more than a quarter (27%) of these women having stopped Christmas cooking altogether.

In light of the ‘Good Days’ survey findings, UCB and the National Rheumatoid Arthritis Society have collaborated to develop the ’12 Tips of Christmas’ with information to help people with RA manage and enjoy the hectic holiday season. Please visit http://www.nras.org.uk/12Tips for the full guide that details ways to embrace and enjoy the countdown to Christmas.

About Rheumatoid Arthritis

It is estimated that 5 million people suffer from RA globally, with 0.8 percent of the U.K. adult population being affected. Prevalence is not split evenly between genders, since women are three times more likely to be affected than men3. Although RA can affect people of all ages, the onset of the disease usually occurs between 30-50 years of age.

RA symptoms often lead to restricted mobility and permanent damage and disfigurement of the joints and bones. People living with RA are at a higher risk of developing other conditions, including heart disease, stroke, depression, infections, lung problems and osteoporosis.

At a meeting yesterday (22/1/2009) at The King’s Fund offices in West London the problem of why rheumatoid arthritis (RA) patients were not getting the necessary level of care was identified within an “authoritative and impartial” report entitled – Perceptions of patients and professionals on rheumatoid arthritis care.

The consultancy report, two years in the making, was presented by leading authorities to represent patient organisations, The King’s Fund and specialist medical experts.

NHS Care for RA Patients is “Lamentably Poor”

Despite the fact that RA affects more than 450,000 people in the UK, the severe level of associated co-morbidities and that it affects one in four patients seeing their GP, services in the UK are lamentably poor.  There are also ‘unacceptably wide variations in the level of care provision’. Level of expertise and care is variable and in some places, lamentably poor despite the fact that one in four GP consultations is for musculoskeletal problems (such as RA)

Bob Davidson MD inCapitalHealth talks with Consultant Rheumatologist, Dr Christopher Kelsey

Co-author of the report, King’s Fund’s Katy Stewart highlighted four areas where there were severe gaps in the service provision. These were as follows:

1. Primary Care – GPs need educating on this therapeutic area as patients are just not being diagnosed. This is important because RA is easier to treat the sooner it is identified. There are some excellent new treatments, but these are simply not being used. There is also “a lack of confidence within the primary care team”.
2. There is a lack of support for patients. “Patients are passionate to get access to more information”.
3. There is a lack of protocols and guidelines.
4. There are huge variations in levels of access to services.

Call to action for Rheumatoid Arthritis patients
In her ‘call to action’, Specialist Rheumatology Nurse Consultant, Susan Oliver outlined four important areas that she said were in-line with Prof Ara Darzi’s philosophy for improved care:

1. There needs to be greater access to medical educational and patient information.
2. Patients must be encouraged to identify the symptoms and go sooner to seek help.
3. Lessons can be learned from those few high quality and responsive service providers.
4. Commissioning needs to be underpinned by the critical steps within the ‘patient journey’. Patients need to be empowered to be able to self-manage and services need to be in place to provide a responsive back-up.

Ailsa Bosworth, panellist and Joint-Chair of the Rheumatology Futures Group stressed the need for improved educational information for GPs and patients. She explained how there was a general lack of understanding of the required diagnostic interventions, and that patients were saying; “My GP really doesn’t know what is wrong with me.” She went on to suggest that there should be a major public awareness campaign to help change the current situation where three-quarters of the UK population do not have access to acceptable levels of service.

During the subsequent Q&A session a number of key points were picked up on including the need for better GP and patient education. The new inCapitalHealth patient website was identified as being a primary example of how this problem could begin to be addressed.

Download a copy of the report: Perceptions of patients and professionals on rheumatoid arthritis care

Read the full press release:
GULF IN PATIENT CARE ‘STRIKING’ AND ‘ALARMING’ ACCORDING TO RHEUMATOID ARTHRITIS EXPERTS