Service user experiences of care recommendations from the 2014 NICE guideline for bipolar disorder: a survey

Figures & data

Table 1. Survey participant demographics.

Characteristics	N (%)
Gender
Female	157 (73.4)
Male	57 (26.6)
Age
18–24	11 (5.0)
25–34	33 (14.9)
35–44	48 (21.6)
45–54	51 (23.0)
55–64	45 (20.3)
65+	20 (9.0)
Ethnicity
White
English/Welsh/Scottish/Northern Irish/British	155 (69.8)
Irish	3 (1.4)
Any other White background	3 (1.4)
Mixed/Multiple ethnic groups
White and Black Caribbean	1 (0.5)
White and Asian	1 (0.5)
Any other Mixed/Multiple ethnic background	14 (6.3)
Asian/Asian British
Indian	2 (0.9)
Pakistani	1 (0.5)
Any other Asian background	2 (0.9)
Black/African/Caribbean/Black British
African	1 (0.5)
Caribbean	2 (0.9)
Any other Black / African / Caribbean background	1 (0.5)
Unknown ethnic group	36 (16.2)

Table 2. Survey responses.

NICE Guidelines for Bipolar Disorder Reference	Question	Yes N (%)	No N (%)	Don’t know N (%)	Total Respondents
	General care & support from secondary care services
1.1.9	Were you offered assistance with daily living tasks, education, financial and employment problems? (Such as dressing, eating, paying bills etc.)	72 (33.6)	130 (60.8)	12 (5.6)	214
1.1.10	Were advance statements (a general statement about anything that is important to you in relation to your future treatment and wellbeing) developed with carers?	63 (29.2)	117 (54.2)	36 (16.7)	216
1.3.2	Did you receive a full psychiatric assessment at point of diagnosis? (In which you would have been asked about your life and experiences, mental and physical health symptoms/experiences, relationships, social circumstances, hopes and aspirations etc.)	149 (69.3)	40 (18.6)	26 (12.1	215
1.3.4	Do you have a care plan? (Sets out what support you’ll get day to day and who will give it to you – including medicines, help with housing, risks etc.)	90 (41.3)	93 (42.7)	35 (16.1)	218
1.1.12	Was your care plan developed in collaboration with you and/or carers?	83 (42.4)	69 (35.2)	44 (22.5)	196
1.4.1	Was a risk management plan developed in collaboration with you and/or carers?	97 (45.1)	81 (37.7)	37 (17.2)	215
	Support from secondary care services – crisis and mania/hypomania
1.4.2	If you’ve been in crisis before, were crisis services offered to you? (Such as Crisis Resolution and Home Treatment teams, Crisis Houses, Hospital Admission, Online Support)	153 (79.3)	30 (15.5)	10 (5.2)	193
1.5.1	Were you offered access to calming environments or reduced stimulation when experiencing mania/hypomania?	49 (26.1)	103 (54.8)	36 (19.2)	188
1.5.1	Were you advised not to make important decisions until you had recovered?	90 (46.4)	68 (35.1)	36 (18.6)	194
1.5.1	Were you encouraged to maintain your relationship(s) with your carer(s)?	109 (64.9)	25 (14.9)	34 (20.2)	168
1.5.3 − 1.5.8	Was your preference and previous experience and response to treatment considered?	102 (54.0)	31 (16.4)	56 (29.6)	189
1.5.12	Were the potential benefits of medication for mania or hypomania and the risks, including side effects of medication discussed with you?	133 (66.8)	40 (20.1)	26 (13.1)	199
	Support from secondary care services – depression
1.6.1	Was a psychological intervention or high-intensity psychological intervention offered for depression? (Such as cognitive behavioural therapy, interpersonal therapy or behavioural couples therapy)	103 (47.9)	86 (40.0)	26 (12.1)	215
1.6.3	Was your preference and previous experience and response to treatment considered?	121 (59.3)	40 (19.6)	43 (21.1)	204
1.6.7	Has the risk of overdosing with medication been raised with you?	110 (51.4)	80 (37.4)	24 (11.2)	214
	Support and advice from services in the longer term
1.6.8	Were the potential benefits of long-term treatment and the risks, including side effects of medication (relating to depression), discussed with you?	134 (62.3)	62 (28.8)	19 (8.8)	215
1.7.1	Was it discussed with you how best to manage and monitor your mood in the long term after an episode of mania or bipolar depression?	131 (60.4)	66 (30.4)	20 (9.2)	217
1.7.1	Were you given clear written information about bipolar disorder?	103 (47.3)	97 (44.5)	18 (8.3)	218
1.7.2	If you were living with, or close to, family, were you offered a family intervention? (A talking therapy involving you and some family members/carers)	38 (18.4)	150 (72.5)	19 (9.2)	207
1.7.3	Were you offered a structured psychological intervention designed for bipolar disorder? (Individual, group or family talking therapy)	69 (31.8)	115 (53.0)	33 (15.2)	217
1.7.4	Did this intervention provide information about bipolar disorder?	59 (48.4)	34 (27.9)	29 (23.8)	122
1.7.4	Was this programme tailored to your needs?	50 (43.9)	34 (29.8)	30 (26.3)	114
1.7.5	Was there a discussion around whether you’d prefer to continue your existing treatment or switch to lithium, if you were not already on it?	91 (50.3)	67 (37.0)	23 (12.7)	181
1.7.5	Was it explained that lithium is the most effective treatment long term?	109 (51.4)	83 (39.2)	20 (9.4)	212
1.7.7	If long-term medication treatment was stopped, was it discussed with you how to recognise early signs of relapse into mania or depression?	86 (57.7)	40 (26.9)	23 (15.4)	149
1.7.7	Was treatment stopped gradually? (Amount/dose reduced slowly)	64 (57.7)	36 (32.4)	11 (9.9)	111
1.8.2	Was a combined healthy eating and physical activity programme offered?	49 (22.6)	152 (70.1)	16 (7.4)	217
	Returning to primary care
1.9.3	Was a return to primary care (i.e. your GP) discussed?	72 (38.3)	83 (44.2)	33 (17.6)	188
1.9.4	Was there a care plan agreed with you for your return to primary care?	37 (24.0)	78 (50.7)	39 (25.3)	154
	How to use medication
1.10.1	Did you have the opportunity to ask questions	189 (86.7)	12 (5.5)	17 (7.8)	218
1.10.1	Was the choice of medication made in collaboration with you?	155 (71.8)	44 (20.4)	17 (7.9)	216
1.10.2	Was the use of alcohol, tobacco, prescription and non-prescription medication and illegal drugs, and their potential impact on your mood, discussed with you?	142 (66.4)	54 (25.2)	18 (8.4)	214
1.10.14	If starting Lithium: Were you advised that poor adherence or rapid discontinuation may increase the risk of relapse?	58 (55.2)	26 (24.8)	21 (20.0)	105
1.10.14	If starting Lithium: Were you given appropriate information on taking it safely?	79 (75.2)	14 (13.3)	12 (11.4)	105
1.10.17	If taking Lithium: Were you advised to seek medical attention if you developed diarrhoea or vomiting or become very ill for any reason?	49 (46.2)	38 (35.9)	19 (17.9)	106
1.10.17	If taking Lithium: Were you advised to ensure you maintained your fluid intake, particularly when hot and sweating heavily, if you were immobile for long periods or if you developed a chest infection or pneumonia?	70 (64.8)	28 (25.9)	10 (9.3)	108
1.10.17	If taking Lithium: Were you advised to talk to your doctor as soon as possible if you became pregnant or were considering having a family?	44 (61.1)	15 (20.8)	13 (18.1)	72
1.10.37	If taking lamotrigine: Were you advised to contact your doctor immediately if you developed a rash?	59 (63.4)	19 (20.4)	15 (16.1)	93
1.10.37	If taking lamotrigine: Were you advised to inform services if you were pregnant or were planning a pregnancy?	35 (54.7)	18 (28.1)	11 (17.2)	64

Data availability statement

An anonymised database is available from the corresponding author.