NRAS Press Release on National Audit Office Report on RA

 
15/07/09 : NRAS  
 
Embargo: 00:01 15th July 2009

Contact: Louise Abbott on 0207 824 1868 / 07812 57683 or email her

GROUND BREAKING NAO REPORT ON RA: NRAS CALLS FOR A PUBLIC AWARENESS CAMPAIGN TO IMPROVE TIME TO DIAGNOSIS AND TREATMENT

The National Rheumatoid Arthritis Society (NRAS) has today called for a national campaign to improve awareness about Rheumatoid Arthritis so people can seek swift treatment and prevent long term joint damage and disability. This follows the publication of research by the National Audit Office (NAO) that has revealed a very worrying lack of awareness about RA among the public, health professionals and commissioners.

The report found that 20% of people with RA delayed seeking treatment for more than a year after experiencing the on-set of symptoms. These findings support research conducted recently by NRAS that found that 62% of the population are not aware of the actual causes of RA. NRAS have welcomed this report that not only emphasises the impact of RA on individual patients but on the wider economy; costing the NHS around £560 million a year with an extra £1.8 billion a year through sick leave and work-related disability.

RA is a chronic, progressive, disabling condition affecting more than half a million people in England with around 26,000 new cases diagnosed each year. It is an autoimmune disease which causes severe disability and ultimately seriously affects a person’s ability to carry out everyday living activities. The disease can progress rapidly, causing swelling and damage to cartilage and bone around joints and it can affect other organs of the body, e.g. the heart, the lungs and eyes. RA is 3 times more common in women than men and there are around 12,000 children under the age of 16 with the juvenile form of the disease. It has no known cause or cure.

Crucial to the effective control of the condition is its early recognition and treatment, with twelve weeks being the recommended time between the onset of symptoms and the start of specialist treatment. Despite the crucial role GPs play in referring RA patients swiftly for treatment, 18% of patients visit their GP more than 8 times before they were diagnosed with RA. Most shockingly, 60% of GPs are not using specific guidance or criteria to help them identify the disease and refer patents for specialist treatment and less than half of people were referred to a specialist within the 12 week period. NRAS hope that this situation will change markedly with the implementation of the new NICE guidelines on RA.

Unique to the NAO research presented to the Government today is an analysis of working age patients which assesses the support services that enable people to self-manage their RA and stay in, or return to work. NRAS support the report’s findings that the productivity gains of £31 million due to reduced sick leave and lost employment far outweigh the £11 million cost to the NHS of treating an additional 2,600 new patents within 12 weeks each year for five years.

The NAO report echoes many of the concerns raised in the research published by the Rheumatology Futures Group and the Kings Fund in January 2009. Most notably that:

People with RA need access to coordinated multi-disciplinary services that can provide a holistic approach to care and the report highlights startling inadequacies in service provision.
People with RA lack sufficient information and support to help them manage their condition. This can lead to feelings of hopelessness, despair and depression.
PCTs lack the evidence to commission services for people with RA.
In the light of these findings, The Rheumatology Futures Group have worked with the Department of Health to produce a Commissioning Pathway for Inflammatory Arthritis. (available on the 18 week website) which, if adopted, will provide commissioners with an evidence-based, quality service of care for people with RA.

Ailsa Bosworth, Chief Executive and founder of NRAS said:

“The NAO report supports the Kings Fund research which found that RA patients are not being diagnosed and referred for specialist treatment early enough to prevent long term joint damage. NRAS are very concerned that RA services are not matching the Government’s vision for long term conditions to be delivered closer to home and are not being commissioned to meet local needs. 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.”

Joanne Connors, age 36 from Birmingham, started experiencing the symptoms of RA when she was 26. She said:

“I didn’t realise that the joint pain and swelling I experienced could be something as serious as RA. It was only when the pain became really bad that I sought help from my GP. However, by this point the disease had progressed significantly, so much so that I had to retire from work within a year of diagnosis. At the age of 29 I had my first joint replacement and have since had further operations to correct the disfigurement to my hands and feet. Early diagnosis and treatment would have prevented the aggressive progression of my RA and maybe I could have stayed in the job that I loved. Much needs to be done to increase awareness about RA so that when people start experiencing the symptoms they know how vital it is to seek help straight away.”

[ENDS]


Notes to Editors

1. National Audit Office, ‘Services for people with rheumatoid arthritis’ (15th July 2009) Main findings:

• 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. 
• 86% of acute trusts are able to prescribe biological drugs to eligible patients. 
• 20% of RA patients felt they had received sufficient information about continuing employment after diagnosis. 
• ¾ of PCTs have not assessed the number of people with RA in their area. 
• Only 12% of PCTs manage RA primarily in primary care in clinic based services or by specialist GPs. 
• ¼ of PCTs commission services for self management of RA. 
• 97% of rheumatology patients are seen within the 18 week referral time. Less than half of people with RA are referred to a specialist with 12 weeks of onset of symptoms, the clinically recommended time limit in order to halt the progression of the disease.

Recommendations:

• PCTs should increase awareness of RA among commissioners, GPs and pharmacists.
• DOH and Royal Colleges should cover RA and similar long term conditions in ongoing Continual Professional Development of primary healthcare professionals. 
• PCTs need to be aware of number of people with RA in their population and work with patients, patient representatives, practitioners and specialists to design services that meet their needs. 
• PCTs and Acute Trusts should review funding and delivery of services to identify where services are best delivered: in a hospital setting, primary care or a combination. 
• PCTs should identify the costs of increasing early treatment of RA in their area and the potential savings and increases in productivity that could arise. 
• PCTs should strengthen contacts with local services such as Job Centre Plus to support people with RA to remain in, or return to work. 
• PCTs should work with practitioners ensure that all people with RA are offered an individual care plan. 
• The DOH should build on the NAO’s economic analysis to promote the benefits to long term health and the economy of supporting people with RA to remain in, or return to work.

2. NRAS · The National Rheumatoid Arthritis Society (NRAS) was launched in October 2001 and is now established as the campaigning voice in the UK for people with Rheumatoid Arthritis.

• NRAS provides a total one-stop-shop with support, information and advocacy for all people in the UK with RA, their carers and families.
• NRAS has a national volunteer network, a group of people with the disease who provide peer to peer support and provide additional resource to help NRAS in many different ways. 
• For more information about NRAS and details on how to contact the NRAS volunteer network please go to our website

3. 2009: The Year of Rheumatoid Arthritis

• The NRAS ‘2009: Year of RA’ campaign aims to challenge common misconceptions about RA through a series of events throughout 2009.
• Increased understanding of RA and its symptoms is crucial for people to recognise the symptoms of the disease and seek swift medical advice and treatment. RA can progress very rapidly therefore the earlier it is diagnosed and treated, the more likely it is that irreversible joint damage and disability can be avoided in the long term. 
• Many young people are not aware that they can get RA or that life style factors, such as smoking, can increase their chances of getting the disease. 
• RA can severely impact on a person’s physical ability to work and do normal everyday tasks. This is made worse when employers and others have a low level of understanding about RA and the severe impact that it can have.