RA Self-Management Programmes

Since the launch of the charity in 2001, NRAS has encouraged and supported patient education and the benefits of proactive self-management, however, until now there has not been a self-management programme available which is tailored to the specific needs of people with RA. NRAS wanted to be able to provide a disease specific self-management programme and began discussions with the Expert Patient Programme (EPP) in 2007 to investigate the possibility of partnering with them to bring such a programme to market.

During 2008/9 both organisations have worked together to develop this programme, and a very successful dummy run to test content, timings etc. took place in Woking during October/November 2008. Two further dummy runs took place in West Middlesex and Stoke in early 2009. Then in early 2010 three further pilots were held in similar locations incorporating feedback from participants and tutors who took part in the dummy runs and these further pilots have been evaluated using validated RA outcome measures at baseline, i.e. before the programme started, at 6 weeks immediately following the end of the programme and at 6 months. The results of the evaluation which showed increased and sustained self efficacy were published at Eular 2011 in London and at the London based launch of the Programme in July 2011. One of the key differences with this programme, apart from the fact that it is disease specific, is that it is being run by a health professional in rheumatology working with a person living with the disease in equal partnership. RA is a complex disease and we felt that when it came to issues such as pain management, flare management, medicines management, that these would be better delivered by a health professional currently working in a rheumatology clinic setting, treating people with RA, enabling the lay tutor to role model other important aspects of living with RA.

The Benefits of Self Management

Living with a condition for which there is no cure can have a devastating effect on a person and their family. The impact can extend to social, economic, psychological, physical, cognitive and cultural aspects of a person’s life. People cope as well as they can with the support they have but frequently do not have the information or skills to develop healthy responses to their condition, or make well informed decisions about their life. Much research has shown that people living with long term, chronic conditions, can gain better control over their lives when they invest time and effort to adopt a self management approach to their disease encompassing learned coping skills which can significantly improve quality of life and positively impact on their long term prognosis. The Department of Health defines self management as “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition”. In practice, it’s about being able to manage one’s RA, the treatments and day-to-day life in the best possible and most realistic way. When you have a condition like RA, people are already managing it in lots of ways, and there are also specific skills which can be learned and honed to gain more confidence and knowledge which is why we have developed this programme for people with this disease.

Note for Rheumatology Health Professionals and interested lay volunteer tutors

The cost of the programme has been structured on the basis of 3 units in a region (2 health professional and 2 lay tutors per unit) being trained simultaneously in order to keep costs as low as possible, however, we are prepared to look at costing for a single unit to be trained where there is interest. In the current economic climate, whilst many units are keen to run the programme they do not have the financial resources to commission the programme, although return on investment would be quite rapid we believe. We are therefore interested to hear from hospital units who do have budget to commission educational/self management interventions or who believe they can make a good case, with our support, to their local commissioners to begin to get the ball rolling.

Return on investment in terms of reduced GP visits, reduced calls to helpline, better concordance with medication, less inpatient stays is likely to be substantial within the first year based on 3 programmes with 15 participants per programme.

Anyone who has been diagnosed for long enough to come to terms to some degree with their diagnosis (at least 1 year) is likely to benefit but we can help you to identify those patients who are more likely to obtain greater benefit than others. Please note that any lay volunteer tutors who are interested must have RA themselves.

For more details contact NRAS on 0845 458 3969 or email ailsa@nras.org.uk.

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If you are a Health Care Professional and want to find out more please click here.