Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Table 3 Sample characteristics of healthcare professionals

Characteristic	Response	Number (n = 251)	% of respondents
Geographical region	South East of England	9	7
	South West of England	12	5
	Scotland	6	2
	London	34	14
	North West of England	66	26
	East of England	6	2
	Wales	1	1
	Yorkshire	4	2
	West Midlands	25	10
	East Midlands	11	4
	North East & Cumbria	7	3
	Northern Ireland	1	1
	Other	4	2
	Total	186	100
	Prefer not to say	0
	Missing	65
Clinical expertise in rare diseases	Yes	136	56
	No	107	44
	Total	243	100
	Missing	8
Areas of work with patients with rare conditions^a	Diagnosing condition	148	59
	Providing information/signposting, or counselling	189	75
	Long-term care following diagnosis	166	66
	Long-term care in the absence of a diagnosis	139	55
Healthcare professional role	Hospital doctor	78	34
	Nurse/midwife	39	17
	Allied health professional	28	12
	Clinical academic	24	10
	GP/community doctor	12	5
	Manager	7	3
	Public health professional	5	2
	Health informaticist	4	2
	Psychological therapist	3	1
	Patient representative	3	1
	Pharmacist	1	0
	Commissioner	1	0
	Other	26	11
	Total	231	100
	Missing	20

^aRespondents could work in more than one area so the numbers sum to more than 251

ISSN: 1750-1172