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

Table 4 Patients’ and carers’ reported access to combinations of care coordination elements

Combination	Reported access to combinations of care coordination elements (care coordinator^a, care plan^b, specialist centre^c)	Patients		Parents/carers
Combination		Number	%	Number	%
1	None of the elements (no care coordinator, no care plan, no specialist centre)	326	54	115	33
2	Specialist centre only	169	28	66	19
5	Care coordinator + specialist centre	30	5	5	1
6	Care coordinator only	24	4	9	3
4	Care plan + specialist centre	22	4	42	12
3	Care plan only	17	3	80	23
7	All of the elements (care coordinator, care plan, specialist centre)	14	2	17	5
8	Care coordinator + care plan	2	0	14	4
	Total	604^d	100	348^d	100

Combinations are ranked in order of prevalence for patients
^aFor patients the question is ‘Do you have a formal care coordinator? Yes/No/Unsure’; for parents/carers it is’Does the person you care for have a formal care coordinator? Yes/No/Unsure’
^bFor patients the question is ‘Do you have a care plan relating to your rare condition? Yes/No/Unsure’; for parents/carers it is ‘Does the person you care for have a care plan relating to their rare condition? Yes/No/Unsure’
^cFor patients the question is ‘Is there a specialist centre available for you? Yes/No/Unsure”; for parents/carers it is ‘Is a specialist centre available for the person you care for? Yes/No/Unsure’
^dRespondents who responded ‘Unsure’ to any of these questions or who did not respond to all of these questions were excluded (156 patients, 98 parents/carers)

ISSN: 1750-1172