Research project - Improving Access to Palliative Care for People with Inflammatory Arthritis

Palliative and Supportive Care, to inform recommendations to help people live well with inflammatory arthritis throughout the disease course (ENRICH)

The recent NHS England Ambitions for Palliative and End of Life Care Framework specifies high quality palliative and end–of-life care should be available to anyone with a life-limiting illnesses, regardless of their diagnosis.

Despite this, it is most offered to people with cancer, heart disease, lung conditions, and AIDS. Inequalities of access are known to exist particularly for people with non-malignant conditions. This is especially true for those with multiple long-term illnesses, including those with an Inflammatory Arthritis such as: rheumatoid arthritis (RA), psoriatic arthritis (PsA), juvenile idiopathic arthritis (JIA), or axial spondyloarthritis (axSpA). The high incidence of rheumatic and musculoskeletal diseases, and associated chronic pain, mean these conditions often comprise one or more of the multimorbidity conditions an individual may be living with. 

These conditions can cause long-term pain, stiffness, fatigue, and disability. They may also affect other parts of the body, like the lungs, skin, eyes, and bowel. These secondary complications, and the side effects of medications used to help slow the progression of the disease or improve symptoms, can shorten life expectancy, for example, people with Rheumatoid Arthritis and associated lung disease may live only 3–7 years after diagnosis. Fatigue, depression, and anxiety are common and can deeply affect daily life, work, and relationships. Managing medications and unpredictable flare-ups of the condition adds to the emotional strain. Having a chronic inflammatory condition treated with glucocorticoids, immunosuppressants and biological medications can also increase the risk of secondary co-morbidities including cardiovascular disease, diabetes, hypertension, risk of infections and malignancies. 

Experts suggest that even outside of end-of-life care, people with arthritis could benefit from support that combines Rheumatology and Palliative Care. However, current guidelines for healthcare professionals do not include arthritis when helping doctors identify who might need end-of-life care. No guidelines currently exist for Palliative Care teams on how to support people with arthritis, which can leave patients feeling their arthritis is overlooked or misunderstood.