The Bath Scleroderma Education/Self Management Programme

Sister Sue Brown Royal National Hospital for Rheumatic Diseases, Bath

The Bath Scleroderma Education/Self Management Programme has been developed since 2000 and has become part of service delivery since 2004. These education programmes are open to all patients with a diagnosis of scleroderma who attend the Royal National Hospital for Rheumatic Diseases in Bath. Sister Sue Brown has led the multi-disciplinary team (which includes a patient educator) since its inception and was awarded the ARC/RCN Rheumatology Forum Silver Medal in May 2005 for the research underpinning this innovative development. A formal presentation as part of this award was made to the National RCN Rheumatology Forum in Dublin in October 2005.

The programme takes place over four consecutive Wednesday mornings, and concludes with a follow up meeting after six-months. Topics in the programme include such issues as:

What is Scleroderma? Understanding and diagnosing Scleroderma, Medications, Complementary therapies, Managing your appointment with your health professional, Activity – goal setting and planning, Exercise and Scleroderma, Coping day to day with scleroderma and Living with a chronic illness.

The group programmes have been re-configured following the results of a qualitative evaluation undertaken in 2004 ( Reference ; Brown SJ, Somerset ME, McCabe CS, McHugh NJ (2004) Musculoskeletal Care ( Winter) 2:4; 207-217 ). Outcome measures that are collected from patients include balance scores, importance and satisfaction scores, and individual agreement of specific short and long term goals. Balance scores are subjective measures of the individual's life where they are asked to assess their ‘have to dos' with their ‘like to dos', (a numerical score from 1-10, with 1 not at all important/satisfied and with 10 extremely important). Short and long term goals are developed in conjunction with staff and patients and are evaluated at the end of the programme and at the six-month review. Patients are encouraged to set realistic, achievable and measurable goals that need to be of importance to the individual in order to empower them to feel they are better able to control their scleroderma.

Examples of the short-term goals set at week two have varied from making a cake (for someone significantly fatigued), to booking and commencing driving lessons. These goals are reviewed at the beginning of week three, and long term goals are set at the end of week four. All patients who have attended the scleroderma programme have reported that they have either achieved their goal, or revised their goal, dependent on circumstances often out of their control. Individuals have changed their balance scores depending on their own personal needs, in some circumstances significantly changing their relative levels of satisfaction and importance. Two scleroderma patients reported goal setting was not important to them at the time of the programme. However on six-month review, one of these patients, whose condition had deteriorated in that time, reported the use of such strategies as vital to their live now. All patients reported the value of having a patient educator, with one reporting that she was an inspiration.

The Bath multi-disciplinary team education/self management programmes are continuing to be of use to patients with scleroderma. It is clear that such meetings enable patients with this rare, complex connective tissue disease, to learn strategies to manage their on-going symptoms and enable them to develop ways of gaining better control of their disease.

Some quotes from the participants who attended the programmes:-

“I feel much more in control than when I started the course.”

“I did not initially feel comfortable in the group, but later relaxed and enjoyed learning about Scleroderma and relaxation from our patient educator.”

“I enjoyed hearing the overall picture from the doctor …I would have benefited from the programme when I was newly diagnosed.”