Lack of knowledge means rheumatoid arthritis patients are not being cared for in the NHS
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 rheumatoid arthritis 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)
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 totalhealth patient website was identified as being a primary example of how this problem could begin to be addressed.