Table 1 Socio-demographic characteristics of 12 participants

Gender

female 11, male 1

Disease duration

Range: 5 months - 11 years

Mean 3 years

Mean age of patients

range: 20-69 years

Mean: 49 years

Ethnicity (self-described)

Black 1; Black African 1; Black British1; British/English/White 6; Lebanese 1; New Zealand/British 1; Peruvian 1

Family status

married 5, married living apart 1; divorced 1; single 4; not specified 1

Place of birth (country)

UK 8, outside Europe 4

Family dependents

4/12 patients (young children 3-18 years)

2/12 patients (caring for their older mothers)

Employment situation

full-time work 3; temporary employment 1; retired on medical grounds 1; retired 2; unemployed 5.

Registered disabled

7/12 patients