House of Commons - Services for people with rheumatoid arthritis

Services for people with rheumatoid arthritis - Public Accounts Committee Contents

1 Early identification and diagnosis of rheumatoid arthritis

1. Rheumatoid arthritis is a lifelong, progressive, musculoskeletal disease. An estimated 580,000 people in England have the disease, with around 26,000 new cases diagnosed each year. Each year it costs the NHS £560 million and the wider economy at least £1.8 billion. Three quarters of people with rheumatoid arthritis are diagnosed when of working age. Women are more than twice as likely as men to have the disease, and one third of people will have stopped working within two years of being diagnosed.[3] Almost half of people with rheumatoid arthritis are of working age, and over 60% have been living with the disease for more than ten years.[4]

2. To minimise damage to joints as a result of rheumatoid arthritis, treatment should start within three months of the onset of symptoms.[5] Aggressive treatment very soon after the onset of symptoms can lead to remission.[6] Early treatment can also prevent pain and disability, and help people go on working and producing an economic return to society.[7] Since 2003, however, the average time from onset of symptoms to diagnosis and first treatment has remained constant at around nine months.[8]

3. Between half and three quarters of people with rheumatoid arthritis delay seeking medical help from their GP for three months or more following the onset of symptoms, and around a fifth delay seeking medical help for a year or more.[9] There has been no real improvement between 1995 and 2005 in the number of people seeing their GP within three months of the onset of symptoms and there continues to be a general lack of understanding and awareness of the disease and its impact.[10] The Department accepted the need to raise public awareness of the symptoms of inflammatory arthritis, including rheumatoid arthritis, so that people who experience them visit their doctor more promptly.[11]

4. Public education campaigns using television, the internet, leaflets and GP practices have been successful at raising public awareness of specific diseases, but such a campaign had not yet been undertaken for inflammatory arthritis, including rheumatoid arthritis.[12] The Department believed that design of such a campaign would be challenging because of the lack of a clear target population.[13] Working with the Rheumatology Futures Group, it was considering a campaign, The S Factor, to help people recognise the symptoms (Figure 1).[14] The Department also acknowledged the need for better understanding amongst primary care staff, including GPs, practice nurses and NHS Direct.[15]Figure 1: 'The S Factor': Recognising the symptoms of inflammatory arthritis

S Factor Recognising the symptoms

Swelling Swelling of the small joints, particularly the small joints of the hand.

Stiffness Profound stiffness of the joints. People may be almost unable to move, and unable to fasten their buttons or bra.

Squeeze test It is painful to compress across the knuckles of the hand or the same joints in the feet.

Severe buttock pain Patients with ankylosing spondylitis—typically young adult males—develop quite severe buttock pain and morning stiffness in their back.

Source: Qq 45 and 46; C&AG's Report, Figure 1

5. The Department accepted that the route to diagnosis could be better.[16] People with rheumatoid arthritis visit a GP on average four times before being referred to a specialist for diagnosis, and 18% of patients visit eight times or more before being referred.[17] The Department argued that in part this is because early disease is difficult to identify.[18] Outcomes were better for patients whose GPs spotted the signs of suspected rheumatoid arthritis at an early stage and referred patients promptly to specialists for early diagnosis (Figure 2).[19] There was also scope for greater use of specialist nurses and early arthritis clinics.[20]Figure 2: The diagnosis and treatment pathway for people with rheumatoid arthritis

Source: C&AG's Report, Figure 2

6. With the annual number of new cases estimated to be 26,000 and the number of GPs in England around 34,000,[21] each GP may only see one new case or less a year. It is difficult for GPs to pick up new cases of rheumatoid arthritis from the thousands of musculoskeletal conditions that a GP sees.[22] GPs are not well informed about the disease, with a lack of education on rheumatoid arthritis during medical training.[23] Whilst around one fifth to one quarter of all GP consultations are musculoskeletal related, a trainee GP's tutorials on musculoskeletal conditions are on average just two hours of teaching, of which coverage of rheumatoid arthritis may be just a part.[24] A survey in 2004 found that teaching in musculoskeletal conditions was rated as inadequate by trainee GPs.[25]

7. The Department accepted that more extensive training was needed in musculoskeletal conditions,[26] and was working with the Royal College of GPs, the Rheumatology Futures Group and some patient groups to improve post graduate training for GPs. It expected to produce, by early 2010, educational material for GPs to help them spot the difficult-to-detect early warning signs of rheumatoid arthritis.[27] The Department was also looking at extending the training time required of GPs before becoming fully qualified principals in general practice, from the current three years post hospital work to at least four years and possibly five years, to reflect the complexity of conditions now seen in primary care, including rheumatoid arthritis.[28]

8. In June 2004, the Department made a commitment that by December 2008 no one would have to wait longer than 18 weeks from GP referral to the start of specialist treatment—the 18 week 'referral to treatment' standard.[29] By December 2008, 97% of rheumatology patients were being treated within 18 weeks of GP referral. The average time from GP referral to being seen by a specialist was around six weeks, although acute trusts' individual averages ranged from two to thirteen weeks.[30]

9. The Department published a Commissioning Pathway for Inflammatory Arthritis in July 2009 which emphasised that GPs should refer their patients to a specialist where they suspect inflammatory arthritis and not rely solely on the results of blood tests and x-rays which may not detect rheumatoid arthritis during its early stages.[31] The Pathway encourages commissioners in Primary Care Trusts and general practices to work with clinicians to redesign and deliver better services for people with inflammatory arthritis. A range of training events was taking place to encourage better design and management of services.[32] The Committee recognised that the Pathway was a positive step and offered the prospect of better services for patients, although its development also highlighted that the current reality fell far short of the ideal.[33]

3 Q 72 Back

4 C&AG's Report, Services for people with rheumatoid arthritis, HC (2008-09) 823, para 1.7 Back

5 C&AG's Report, para 2 Back

6 C&AG's Report, para 1.2 Back

7 Qq 43, 44 and 52 Back

8 C&AG's Report, para 6 Back

9 Q 25 Back

10 Q 27 Back

11 Q 3; C&AG's Report, para 18a Back

12 Qq 28, 36, 39 and 47 Back

13 Qq 38, 40 and 42 Back

14 Qq 45 and 46; C&AG's Report, Figure 1 Back