Report finds patients are unaware of help entitlement

Report finds patients are unaware of help entitlement

Research from the National Rheumatoid Arthritis Society and the University of Aberdeen found that almost 90 percent of Rheumatoid Arthritis patients in Scotland felt the condition affected their daily lives yet they were unaware of help available to them from their local council.

The Scottish survey published today, 6 September, led jointly by Dr Kathryn R. Martin, Lecturer in Epidemiology and The National Rheumatoid Arthritis Society (NRAS) explores the perception and use of social care by Scottish men and women living with Rheumatoid Arthritis.

Almost half (44%) of respondents felt unable to work because of their disability.

The findings showed that the most common additional health problem of people living with Rheumatoid Arthritis was depression with many respondents concerned that they were a burden on their principal carer – usually family, which can then add to anxiety and depression.

Eighty-nine percent of people surveyed were unaware of what make them eligible for help with care and support from their local council. 

In the report on the health and perceived social care needs of people with rheumatoid arthritis in Scotland’ 387 people with Rheumatoid Arthritis were surveyed, to gain greater understanding of the wider care and support needs of people with Rheumatoid Arthritis in Scotland and the factors which contribute to them. 

Kathryn R. Martin, Lecturer in Epidemiology at the University of Aberdeen, UK said: “This report provides a snapshot of respondents’ current social care circumstances in Scotland. It highlights that individuals with rheumatoid arthritis lack fundamental information about qualifying for and accessing formal resources and services provided by their local council. This is especially crucial as respondents indicated they do not want to rely too heavily on others, like family or friends who are often the primary caregivers.

“It is important to ensure those with rheumatoid arthritis do not have unmet needs at any stage, from being newly diagnosed to having established rheumatoid arthritis, so that they can flourish at home, at work and in their leisure time.

“Ultimately the aim is to maximise independence and ensure greater quality of life for those living with rheumatoid arthritis.

“We look forward to continued collaboration with NRAS to better understand and improve the awareness of social care services to individuals with rheumatoid arthritis who live in Scotland.”

Sheila Macleod, Chair of the NRAS Scottish Campaigns Network, said:

“It is enormously encouraging that improved treatment and care for people living with rheumatoid arthritis make it possible for many to achieve remission and live full lives. But, given the potential high human and financial cost of this condition, it is vital that people are diagnosed and start treatment within the critical early period (12 weeks) where best results can be achieved.

“This report is welcome: it offers better understanding and promotes a swifter response leading to improved long-term outcomes for people with rheumatoid arthritis in Scotland.

“One of the ways in which early diagnosis could be prioritised in Scotland is with the introduction of early arthritis clinics, to get people into the system quicker once referred by GPs.”

Liam McArthur, Scottish Liberal Democrat MSP for Orkney, who is sponsoring a reception in the Scottish Parliament to highlight the findings of the report to fellow MSPs on Tuesday evening said:

“This report produced jointly by NRAS and the University of Aberdeen is a welcome example of the innovative social research needed to inform policy-making in Scotland.

“It is not surprising that most care needs are met informally by partners, friends and family.

“Advancements in treatment for rheumatoid arthritis over the last decade or so has thankfully meant fewer people with the condition than ever before will have functional disability, but we cannot be complacent.

“It remains very disappointing that the vast majority of those with rheumatoid arthritis did not know in which circumstance they might be eligible for care and support from their local council. Clearly more work must be done to address how formal care, where required, can enable people with rheumatoid arthritis to live their lives to the full.”