North Thames Paediatric Haematology and Oncology Parent and … · 2016-07-06 · 2 1. Background...
Transcript of North Thames Paediatric Haematology and Oncology Parent and … · 2016-07-06 · 2 1. Background...
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North Thames Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report – quantitative analysis
Conducted by: Patient Experience Subgroup of the North Thames Children’s
Cancer Network Coordinating Group
Author: Report written by Karen Bravery, Project Nurse, Shared Care
Improvement Project, ICI-LM, Great Ormond Street Hospital
Date: 5 February 2014 Version: v2.0
Content: 1. Background ...................................................................................................................................................2
2. Methods ........................................................................................................................................................2
3. Results ...........................................................................................................................................................2
Section A: About you and your child (questions A1-A6) ...............................................................................3
Section B: The outpatient clinic at your Principle Treatment Centre (PTC) (questions B1-B9). ...................7
Section C: The children’s ward at your PTC (Inpatient and day-care wards.Questions C1-C7) ................. 12
Section D: The outpatient clinic at your local shared care hospital (POSCU) (Questions D1-D10) ........... 16
Section E: The children’s ward at your local shared care hospital? (Questions E1-E9). ............................ 21
Section F: Community nurses (Questions F1-F4) ....................................................................................... 26
Section G: Holistic needs assessment (Questions G1-G6) ......................................................................... 29
Section H: Information and communication (Questions H1-H8) ............................................................... 36
Section I: Your overall satisfaction with your principle treatment centre ................................................. 45
Section J: Your overall satisfaction with your local shared care hospital (POSCU).................................... 45
Summary of key points .................................................................................................................................. 47
Next steps ...................................................................................................................................................... 48
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1. Background
The Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013 was designed by
the Patient Experience Sub Group of the North Thames Children’s Cancer Network Coordinating Group
(NTCCNCG) in 2013, following a review of similar surveys used by other children’s cancer centres. This is
the first network wide survey looking at parent’s satisfaction with their principle treatment centre (PTC),
shared care hospital (known as a ‘Paediatric Oncology Shared Care Unit ‘or POSCU) and community
nursing teams
2. Methods
The survey was reviewed and tested for usability by members of the NTCCNCG parent council. The survey
was distributed by the principle treatment centre (PTC) (Great Ormond Street Hospital or University
College London Hospital) or by North Thames Paediatric Oncology Shared Care Unit’s (POSCU’s) over a 4
week period, from 16/09/13 until 11/10/13. The survey remained open for postal returns until 15/011/13.
Families were invited to take part in the survey and complete a questionnaire when they attended the PTC
as an inpatient, outpatient or day case. Some POSCU’s also offered families a questionnaire to complete
when they attended their POSCU. The survey was completed by families using a paper version or on-line
via the London Cancer Website.
Completed paper versions of the survey were manually entered into the on line version (survey monkey
questionnaire format) to facilitate the sorting and analysis of data.
Data were analysed quantitatively e.g. response count, response per cent and qualitatively by thematic
analysis of free text comments made by families. Data analysis was undertaken by KB, ZB, and CG (parent
council).
3. Results
This report presents the quantitative analysis of the data from parents completing the survey across the
network. It is set out as per the survey questions. Qualitative results are presented in a separate report
‘Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report-
thematic analysis. Responses to B10, C8, D12, E10, F5, G7, H9, I2-I6 and J2-J6 are incorporated within the
thematic analysis.
Response rates
Responses Number
Total number of responses. 106 completed paper versions of the survey received. Some online entries by parents failed as only able to complete sections A-D (N=9).
115
Total responses with UCLH as PTC 10
Total responses with GOSH as PTC 103
Total responses naming North Thames POSCU’s 79
Total responses naming South Thames POSCU’s 8
Total responses naming other POSCU (Leeds, Basingstoke) 2
Total responses naming CCN team 48
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Distribution of the surveys
Where distributed from Number of surveys
handed out
Number of surveys
returned
Response rate
%
In-patient wards GOSH 38 19 50%
Out patients & Day Care
GOSH
101 65 64%
Princess Alexandra Harlow 4 0 0%
Queens hospital 3 0 0%
Hillingdon 36 7 19%
Barnet 10 2 20%
Whipps Cross 24 4 17%
Postal returns from other POSCU’s who distributed surveys: Chelsea & Westminster (2), Southend
Hospital (2). Postal returns for UCLH = 7.
Section A: About you and your child (questions A1-A6)
A1.How old is your child?
Answer Options Response Percent Response Count
Less than 2 yrs 15.8% 18
2-5yrs 42.1% 48
6-10yrs 36.8% 42
11-15yrs 0.9% 1
Over 15yrs 4.4% 5
answered question 114
skipped question 1
4
A2. How old was your child when they were diagnosed?
Answer Options Response Percent
Response Count
Less than 2 yrs 31.0% 35 2-5yrs 46.9% 53 6-10yrs 18.6% 21 11-15yrs 2.7% 3 Over 15yrs 0.9% 1
answered question 113 skipped question 2
A3.What is the diagnosis?
Answer Options Response Count
107 answered question 107
skipped question 8
Haematology Acute lymphoblastic leukaemia 48 Leukaemia 10 Acute myeloid leukaemia 6 B non-Hodgkin’s lymphoma 1 Total 65
16%
42%
37%
1% 4%
How old is your child?
Less than 2 yrs
2-5yrs
6-10yrs
11-15yrs
Over 15yrs
31%
47%
18%
3% 1%
How old was your child when they were diagnosed?
Less than 2 yrs
2-5yrs
6-10yrs
11-15yrs
Over 15yrs
5
Neuro-oncology Ependymoma 1 ATRT (atypical teratoid rhabdoid tumor) 1 Optic pathway glioma / Low grade glioma 7 Anaplastic ganglioglioma 1 Brain tumour 1 Astrocytoma 1 Rhabdoid tumour 1 Total 13
Oncology Tumour of ring finger 1 Burkitt’s lymphoma 1 Retinoblastoma 4 Hodgkin’s disease 3 Rhabdomyosarcoma 5 Neuroblastoma 4 Cancer 1 Ewing’s sarcoma 1 Hepatoblastoma 1 Fibrosarcoma 1 Kaposiform hemangioendothelioma 1 Osteosarcoma 3 Renal sarcoma 1 Spindle cell sarcoma 1 Wilm’s tumour 1 Total 29
A4. What treatment is your child having / did your child have? (tick all relevant boxes)
Answer Options Response Percent
Response Count
Surgery 32.50% 37 Chemotherapy 95.60% 109 Radiotherapy 11.40% 13 Bone marrow transplant 5.30% 6 Other (please specify) 5 1. Proton therapy 2. IAM, cryotherapy, laser therapy 3. Immunotherapy & stem cell transplant 4. Intra-arterial chemotherapy, Laser therapy/cryotherapy 5. Steroids
answered question 114 skipped question 1
6
A5. How long ago did your child start their treatment?
Answer Options Response Percent
Response Count
Less than 1 month ago 8.2% 9 1 month to 3 years ago 79.1% 87 3 – 5 years ago 10.9% 12 over 5 years 1.8% 2 Other (8 years, no answer given, 4 months ago, 8 months ago) 4
answered question 110 skipped question 5
Surgery Chemotherapy RadiotherapyBone marrow
transplant
Series1 32.5% 95.6% 11.4% 5.3%
0.0%
20.0%
40.0%
60.0%
80.0%
100.0%
120.0%%
What treatment is your child having/did your child have?
8%
79%
11%
2%
How long ago did your child start their treatment?
Less than 1month ago
1 month to 3years ago
3 – 5 years ago
over 5 years
7
Section B: The outpatient clinic at your Principle Treatment Centre (PTC) (questions B1-
B9).
B1. How satisfied are you with how child and family-friendly your clinic is at the PTC?
Answer Options Response Percent
Response Count
Very satisfied 63.2% 67 Satisfied 34.0% 36 Dissatisfied 1.9% 2 Very dissatisfied 0.9% 1
answered question 106 skipped question 9
B2. How long do you usually have to wait before you are seen by the doctor/nurse practitioner?
Answer Options Response Percent
Response Count
Under 15mins 17.3% 18 15-29mins 36.5% 38 30-59mins 28.8% 30 1-2hrs 10.6% 11 Over 2hrs 6.7% 7 Other (second monthly appointment waited 4 1/2 to 5 hours) 1
answered question 104 skipped question 11
Response Pe rcentResponse
Count
91.2% 103
8.8% 10
89
113
2skipped question
UCLH
A6. Which is your Princ ipa l T rea tment Centre (PT C), i.e . the hosp ita l whe re your child rece ives his /he r ma in cance r trea tment
answered question
GOSH
What is the name of your local shared care hospital?
Answer Op tions
63% 34%
2% 1%
How satisfied are you with how child and family-friendly your clinic is at
the PTC?
Verysatisfied
Satisfied
8
B3. How satisfied are you with how friendly and helpful the clinic staff are?
Answer Options Response Percent
Response Count
Very satisfied 74.5% 79 Satisfied 23.6% 25 Dissatisfied 0.9% 1 Very dissatisfied 0.9% 1
answered question 106 skipped question 9
17%
36% 29%
11% 7%
How long do you usually have to wait before you are seen by the doctor/nurse
practitioner?
Under 15mins
15-29mins
30-59mins
1-2hrs
74%
24%
1% 1%
How satisfied are you with how friendly and helpful the clinic staff are?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
answered question 101
skipped question 14
Response Count
56
68
40
B4. Who do you usua lly see when you a ttend the c linic?
Answer Op tions
Your consultant
Nurse
Other doctor
9
B 5. How often do you see your consultant - does this frequency feel:
Answer Options Response Percent
Response Count
Too often? 3.0% 3 Just right? 74.3% 75 Not often enough? 22.8% 23
answered question 101 skipped question 14
B6. How satisfied are you that you have access to someone (your consultant or nurse) who can answer your questions?
Answer Options Response Percent
Response Count
Very satisfied 52.3% 57 Satisfied 44.0% 48 Dissatisfied 1.8% 2 Very dissatisfied 1.8% 2
answered question 109 skipped question 6
3%
74%
23%
Does this frequency feel:
too often?
just right?
not oftenenough?
52% 44%
2% 2%
How satisfied are you that you have access to someone (your consultant or nurse) who can
answer your questions?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
10
B7. Is there a play specialist available when your child is having any painful procedures?
Answer Options Response Percent
Response Count
Yes 79.0% 79 No 21.0% 21
answered question 100 skipped question 15
B8. Do you feel your child has had adequate support for the following:
Answer Options Yes No Response
Count
Behavioural difficulties 66 18 84 Emotional difficulties 73 17 90
answered question 90 skipped question 25
79%
21%
Is there a play specialist available when your child is having any painful procedures?
Yes
No
11
B9. Do you feel other members of the family have received adequate emotional/psychological support?
Answer Options Response Percent
Response Count
Yes 70.3% 71 No 29.7% 30
answered question 101 skipped question 14
18 17
66 73
Behavioural difficulties Emotional difficulties
Do you feel your child has adequate support for the following:
No Yes
70%
30%
Do you feel other members of the family have received adequate
emotional/psychological support?
Yes
No
12
Section C: The children’s ward at your PTC (Inpatient and day-care wards.Questions C1-
C7)
C1. Are you able to contact the children’s ward at any time for advice?
Answer Options Response Percent
Response Count
Yes 94.5% 104 No 5.5% 6 If no, please state why 6 1. Get advice from the community nurses 2. because sometimes they are busy 3. Not out of hours 4. Safari is only manned during the day 5. But always direct me to local hospital 6. We are advised to contact the local treatment centre
answered question 110 skipped question 5
94%
6%
Are you able to contact the children’s ward at any time for advice?
Yes
No
Re sp o nse
Pe rce nt
Re sp o nse
Co unt
70.8% 80
27.4% 31
0.9% 1
0.9% 1
113
2
C2. Ho w sa tis fie d a re yo u with ho w child a nd fa mily-frie nd ly the wa rd
e nv iro nme nt is a t yo ur PT C?
Very dissatisfied
-Very satisfied
sk ip p e d q ue stio n
Dissatisfied
Answe r Op tio ns
a nswe re d q ue stio n
Satisfied
13
C 3. How satisfied are you with how friendly and helpful the ward staff are?
Answer Options Response Percent
Response Count
Very satisfied 74.3% 84 Satisfied 24.8% 28 Dissatisfied 0.0% 0 Very dissatisfied 0.9% 1
answered question 113 skipped question 2
C4. Are the ward nursing staff able to answer your questions adequately?
Answer Options Response Percent
Response Count
Yes 76.1% 86 No 0.0% 0 Mostly 23.9% 27 Please comment 3 1. They refer to a doctor when unable to answer 2. Sometimes delays if questions made by telephone.
3. Translation required sometimes answered question 113
skipped question 2
71%
27%
1% 1%
How satisfied are you with how child and family-friendly the ward environment is at your PTC?
-Very satisfied
Satisfied
Dissatisfied
74%
25%
0% 1%
How satisfied are you with how friendly and helpful the ward staff are?
Very satisfied
Satisfied
Dissatisfied
Verydissatisfied
14
C5. How satisfied are you with quality of the meals served at the PTC?
Answer Options Response Percent
Response Count
Very satisfied 25.2% 27 Satisfied 50.5% 54 Dissatisfied 15.0% 16 Very dissatisfied 9.3% 10
answered question 107 skipped question 8
C6. How satisfied are you with the timing of the meal times at the PTC?
Answer Options Response Percent
Response Count
Very satisfied 27.1% 29 Satisfied 57.0% 61 Dissatisfied 12.1% 13 Very dissatisfied 3.7% 4
answered question 107 skipped question 8
76%
0%
24%
Are the ward nursing staff able to answer your questions adequately?
Yes
No
Mostly
25%
51%
15%
9%
How satisfied are you with quality of the meals served at the PTC?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
15
C7. Do you have adequate access to the following on the ward?
Answer Options Yes No Response
Count
A member of the Play Team 97 16 113 Psychological support 60 33 93 Social worker 89 14 103 Other activities 64 13 77
answered question 113 skipped question 2
27%
57%
12% 4%
How satisfied are you with the timing of the meal times at the PTC?
Very satisfied
Satisfield
Dissatisfied
Very dissatisfied
1633
14 13
97 60 8964
A member ofthe Play Team
Psychologicalsupport
Social worker Other activities
Do you have adequate access to the following on the ward?
No Yes
16
Section D: The outpatient clinic at your local shared care hospital (POSCU) (Questions
D1-D10) D1. Does your local shared care hospital have a special oncology clinic for children?
Answer Options Response Percent
Response Count
Yes 76.0% 76 No 24.0% 24
answered question 100 skipped question 15
D2. How satisfied are you with how child and family-friendly the clinic is at your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 50.0% 51 Satisfied 37.3% 38 Dissatisfied 9.8% 10 Very dissatisfied 2.9% 3
answered question 102 skipped question 13
76%
24%
Does your local shared care hospital have a special
oncology clinic for children?
Yes
No
17
D3. How long do you usually have to wait to be seen?
Answer Options Response Percent
Response Count
Under 15mins 24.7% 24 15-29mins 38.1% 37 30-59mins 25.8% 25 1-2hrs 8.2% 8 Over 2hrs 3.1% 3
answered question 97 skipped question 18
D4. Do you have to wait in clinic for blood test results after seeing the doctor?
Answer Options Response Percent
Response Count
Yes 23.2% 22 No 76.8% 73
answered question 95 skipped question 20
50%
37%
10% 3%
How satisfied are you with how child and family-friendly the clinic is at your local shared care
hospital?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
25%
38%
26%
8% 3%
How long do you usually have to wait to be seen?
Under 15mins
15-29mins
30-59mins
1-2hrs
Over 2hrs
18
D4. If yes, how long usually?
Answer Options Response Percent
Response Count
Under 30mins 30.4% 7 30-59mins 21.7% 5 1-2hrs 26.1% 6 Over 2hrs 21.7% 5
answered question 23 skipped question 92
D5. How satisfied are you with how friendly and helpful the staff are at your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 51.5% 51 Satisfied 39.4% 39 Dissatisfied 6.1% 6 Very dissatisfied 3.0% 3
answered question 99 skipped question 16
23%
77%
Do you have to wait in clinic for blood test results after seeing the doctor?
Yes
No
30%
22% 26%
22%
If yes, how long usually?
Under 30mins
30-59mins
1-2hrs
Over 2hrs
19
D6. Who do you usually see when you attend the clinic? Answer Options Response count
Your consultant 46 Nurse 67 Other doctor 21
CNS/Key worker 5
answered question 95 skipped question 20
D7. How often do you see your consultant - does this frequency feel:
Answer Options Response Percent
Response Count
Too often? 1.2% 1 Just right? 83.5% 71 Not often enough? 15.3% 13
answered question 85 skipped question 30
D8. Is there a play specialist available when your child is having any painful procedures?
Answer Options Response Percent
Response Count
Yes 69.3% 61 No 30.7% 27
answered question 88 skipped question 27
52% 39%
6% 3%
How satisfied are you with how friendly and helpful the staff are at your local
shared care hospital?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
1%
84%
15%
Does this frequency feel:
too often?
just right?
not oftenenough?
20
D9. Do you feel your child has had adequate support for the following:
Answer Options Yes No Response
Count
Behavioural difficulties 58 22 80 Emotional difficulties 60 22 82
answered question 82 skipped question 33
D10. Do you feel other members of the family have received adequate emotional/psychological support?
Answer Options Response Percent
Response Count
Yes 69.7% 62 No 30.3% 27
answered question 89 skipped question 26
69%
31%
Is there a play specialist available when your child is having any painful procedures?
Yes
No
22 22
58 60
Behavioural difficulties Emotional difficulties
Do you feel your child has had adequate support for the following:
No Yes
21
Section E: The children’s ward at your local shared care hospital? (Questions E1-E9).
E1. Are you able to contact the children’s ward at any time for advice?
Answer Options Response Percent
Response Count
Yes 94.8% 91 No 5.2% 5
answered question 96 skipped question 19
E2. Are you able to arrange for your child to be seen directly on the ward (without going through your GP or casualty department)?
Answer Options Response Percent
Response Count
Yes 94.4% 85 No 5.6% 5
answered question 90 skipped question 25
70%
30%
Do you feel other members of the family have received adequate emotional/psychological support?
Yes
No
95%
5%
Are you able to contact the children’s ward at any time for advice?
Yes
No
22
E2. If no, would this make a difference to your experience if this was possible?
Answer Options Response Percent
Response Count
Yes 85.7% 6 No 14.3% 1
answered question 7 skipped question 108
E3. How satisfied are you with how child and family-friendly the ward environment is at your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 45.3% 43 Satisfied 40.0% 38 Dissatisfied 7.4% 7 Very dissatisfied 7.4% 7
answered question 95 skipped question 20
94%
6%
Are you able to arrange for your child to be seen directly on the ward (without going through your GP or
casualty department)?
Yes
No
86%
14%
If no, would this make a difference to your experience if this was possible?
Yes
No
23
E4. How satisfied are you with how friendly and helpful the ward staff are at your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 55.8% 53 Satisfied 33.7% 32 Dissatisfied 6.3% 6 Very dissatisfied 4.2% 4
answered question 95 skipped question 20
E5. Are the ward nursing staff able to answer your questions adequately?
Answer Options Response Percent
Response Count
Yes 47.9% 45 No 6.4% 6 Mostly 45.7% 43
answered question 94 skipped question 21
45%
40%
8% 7%
How satisfied are you with how child and family-friendly the ward environment is at your local
shared care hospital?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
56% 34%
6% 4%
How satisfied are you with how friendly and helpful the ward staff are at your local shared care hospital?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
24
E6. How satisfied are you with the quality of the meals served at your local shared care hospital?
Answer Options Response Percent
Response Count
Very Satisfied 17.4% 15 Satisfied 57.0% 49 Dissatisfied 24.4% 21 Very Dissatisfied 1.2% 1
answered question 86 skipped question 29
E7. How satisfied are you with the timing of the meal times at your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 19.0% 16 Satisfied 67.9% 57 Dissatisfied 9.5% 8 Very dissatisfied 3.6% 3
answered question 84 skipped question 31
48%
6%
46%
Are the ward nursing staff able to answer your questions adequately?
Yes
No
Mostly
18%
57%
24%
1%
How satisfied are you with the quality of the meals served at your local shared care
hospital?
Very Satisfied
Satisfied
Dissatisfied
Very Dissatisfied
25
E9. Do you have adequate access to the following on the ward:
Answer Options Yes No Response
Count
A member of the Play Team 71 16 87 Psychological support 36 41 77 Social worker 30 44 74 Other activities 39 25 64
answered question 89 skipped question 26
19%
68%
9%
4%
How satisfied are you with the timing of the meal times at your local shared care hospital?
Very satisfied
Satisfied
Dissatisfied
Very dissatisfied
16 41 44
25
71 36 30
39
A member ofthe Play Team
Psychologicalsupport
Social worker Other activities
Do you have adequate access to the following on the ward:
No Yes
26
Section F: Community nurses (Questions F1-F4)
F1. Please state the name of your community team (if known).
Answer Options Response Count
62 answered question 62
skipped question 53
F2. Do you have a community nurse who visits you and your child at home?
Answer Options Response Percent
Response Count
Yes 94.9% 93 No 5.1% 5
answered question 98 skipped question 17
95%
5%
Do you have a community nurse who visits you and your child at home?
Yes
No
27
F3. How satisfied are you with your community nursing team?
Answer Options Response Percent
Response Count
Very satisfied 71.9% 69 Satisfied 24.0% 23 Dissatisfied 3.1% 3 Very dissatisfied 1.0% 1 Please state why 18 1 Very friendly - caring 2 Designated nurse: consistent: advantage knowing child / family
3 They are amazing. Very professional, very friendly 4 Very supportive and communicate well 5 They don't have experience in dealing with dressing problems
6 Very helpful, friendly 7 Always punctual and polite / caring / understanding 8 They are lovely ladies whom E likes 9 Always available to help 10 Very friendly, efficient, supportive and caring 11 One of the nurses has been very helpful 12 Helpful & caring 13 Very friendly 14 Our nurse E is really kind. 15 Friendly 16 Friendly 17 They are fabulous - always have time, very kind and supportive.
18 Punctual, caring and efficient. answered question 96
skipped question 19
28
F4. What services/support does your community nursing team provide? (tick all that apply)
Answer Options Yes No Don't know
Response Count
Blood sampling 91 0 0 91 Care of central lines 72 5 5 82 Support child’s education 17 29 22 68 Home IV chemotherapy 14 33 18 65 Home IV antibiotics therapy 15 32 20 67 7 day cover 21 20 22 63 Other (please specify) 8
1 Weekly FBC 2 Constant support, I call them if I need to ask
about anything concerning me about my daughter
3 Play specialist 4 IM injections 5 Come on Sunday 6 Support in general and used lots for guidance 7 Advice/refer to consultant 8 Very friendly and helpful
answered question 92 skipped question 23
72%
24%
3% 1%
How satisfied are you with your community nursing team?
Very satisfied
Satisfied
Dissatisfied
Verydissatisfied
29
Section G: Holistic needs assessment (Questions G1-G6)
G1. Have you or your child ever been asked about your needs or concerns in the following areas:
Answer Options Yes No Don't know Response Count
Physical 63 17 12 92 Emotional 55 27 11 93 Social 50 28 10 88 Spiritual 17 52 16 85 Educational 51 28 13 92
answered question 96 skipped question 19
Bloodsampling
Care ofcentral lines
Support child’s
education
Home IVchemotherap
y
Home IVantibiotics
therapy7 day cover
Yes 91 72 17 14 15 21
No 0 5 29 33 32 20
Don't know 0 5 22 18 20 22
0
10
20
30
40
50
60
70
80
90
100
Nu
mb
er
What services/support does your community nursing team provide? (tick all that apply)
30
G1. If yes, who were you asked by? When were you asked?
Answer Options Response Count
60 answered question 60
skipped question 55
Physical Emotional Social Spiritual Educational
Yes 63 55 50 17 51
No 17 27 28 52 28
Don't know 12 11 10 16 13
0
10
20
30
40
50
60
70
80
90
100N
um
be
r
Have you or your child ever been asked about your needs or concerns in the following areas:
31
G2. After being asked about these areas, did anyone make a plan with you or your child about how to get help with any problems or needs identified?
Answer Options Response Percent
Response Count
Yes 65.1% 54 No 14.5% 12 Don't know 20.5% 17
answered question 83 skipped question 32
23
10 7
11
2
14
2 1 1 3
1 3 2
0
5
10
15
20
25N
um
be
r o
f re
spo
nse
s
Who asked you about your child's needs?
Series1
65% 15%
20%
After being asked about these areas, did anyone make a plan with you or your child about how to get help with
any problems or needs identified?
Yes
No
Don't know
Response Count
46
46
69
G2. If yes, who made this p lan fo r your child?
Answer Op tions
answered question
sk ipped question
32
Top 6 professionals for the question – If yes, who made this plan for your child? Professional Number of families who said this professional
made the plan Social worker 10 Consultant 6 Teacher 6 Outreach nurse 4 Clinical nurse specialist 3 Psychologist 3
G2. If you were not asked, would you have like to have been asked about any of these areas? Answer Options Response
Percent Response Count
Yes 76.9% 10 No 23.1% 3 If yes, by whom would you have liked to have been asked? 9 1 These meetings were available 2 Education / home tuition (anyone!) 3 GOSH 4 The people we see most often (oncology nurses)
5 Social workers & visual impairment team 6 Play specialist / social worker 7 Don't mind 8 Any one 9 Needed more psychological support in the
beginning
answered question 13 skipped question 102
77%
23%
If you were not asked, would you have like to have been asked about any of
these areas?
Yes
No
33
G3. What sort of things do you think your family need help and support with? (Please tick all that apply)
Answer Options Response Percent
Response Count
Practical problems (e.g. Childcare, housing, finances, transport, work)
68.8% 66
Family problems (e.g. Dealing with changes in relationships, concerns about children / partner / grandparents)
31.3% 30
Emotional difficulties (e.g. feelings of low mood, worry) 52.1% 50
Spiritual / religious concerns 4.2% 4
Communication problems (e.g. amount, quality, clarity of information; communicating with staff)
15.6% 15
Physical problems (e.g. side effects of treatment, sickness) 45.8% 44
Understanding the treatment plan 41.7% 40
Education / school problems 42.7% 41
Caring for your child at home 35.4% 34
None 11.5% 11
Other (please specify) 6
1 Transport to hospital
2 Future expectations, not just in months but years
3 General questions regarding treatment & care
4 Phobia with needles (play specialist)
5 Psychological support
6 Accommodation while at GOSH
answered question 96
skipped question 19
G4. From the needs you have identified above which of them did you receive help with?
Answer Options Response Percent
Response Count
Practical problems (Childcare, housing, finances, transport, work)
51.2% 44
Family problems (Dealing with children / partner / grandparents)
19.8% 17
Emotional problems 29.1% 25
Spiritual / religious concerns 3.5% 3
Communication problems (amount, quality, clarity of information; communicating with staff)
18.6% 16
Physical problems 44.2% 38
Understanding the treatment plan 53.5% 46
Education / school problems 30.2% 26
Caring for your child at home 34.9% 30
None, I did not receive any help with these things 8.1% 7
answered question 86
skipped question 29
34
G5. If you did receive help, who helped you with these needs? (tick all that apply)
Answer Options Response Percent
Response Count
Consultant 59.3% 48 Hospital School Teacher 22.2% 18 Psychologist/ Psychiatrist/Psychotherapist 22.2% 18 Clinical nurse specialist 46.9% 38 Social Worker 66.7% 54 Ward or clinic doctor 16.0% 13 Community Nurse 58.0% 47 Play Worker 14.8% 12 Ward Nurse 32.1% 26 Other (please specify) 8 Key worker visual impairment team Rainbow trust physiotherapist Outreach worker Family support worker (Rainbow Trust) Outreach nurse C.A.B at GOSH
answered question 81 skipped question 34
0
10
20
30
40
50
60
70
80
Practicalproblems
Family problems Emotionalproblems
Spiritual /religious concerns
Communicationproblems
Physical problems Understandingthe treatment
plan
Education /school problems
Caring for yourchild at home
None
Pe
rce
nt
What do you think your family needs help with? Vs What did you receive help with? (Question G3 & G4)
35
G6. How satisfied were you with the help offered?
Answer Options Response Percent
Response Count
Very satisfied 50.6% 43 Satisfied 45.9% 39 Dissatisfied 2.4% 2 Very dissatisfied 1.2% 1
answered question 85 skipped question 30
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
Co
nsu
lta
nt
Ho
sp
ita
l S
ch
oo
l T
ea
ch
er
Psych
olo
gis
t/P
sych
iatr
ist/
Psych
oth
era
pis
t
Clin
ica
l n
urs
e s
pe
cia
list
So
cia
l W
ork
er
Wa
rd o
r clin
ic d
octo
r
Co
mm
un
ity N
urs
e
Pla
y W
ork
er
Wa
rd N
urs
e
If you did receive help, who helped you with these needs? (tick all that apply)
Series1
51% 46%
2% 1%
How satisfied were you with the help offered?
Very satisfied
Satisfied
Dissatisfied
Verydissatisfied
36
Section H: Information and communication (Questions H1-H8)
32 families out of 95 (34%) at the PTC haven’t been told or don’t know who their key worker is
33 families out of 77 (49%) at the POSCU haven’t been told or don’t know who their key worker is
52 families out of 95 (55%) could name their key worker
Yes No Don’t knowResponse
Count
63 17 15 95
39 25 13 77
52
95
20skipped question
At your local shared care hospital:
H1. Have you eve r been to ld who your child o r family ’s key worke r is?
answered question
At UCLH/GOSH:
Name of your key worker
Answer Op tions
At UCLH/GOSH: At your local shared care hospital:
Yes 63 39
No 17 25
Don’t know 15 13
0
10
20
30
40
50
60
70
80
90
100
Nu
mb
er
of
resp
on
se
s
Have you ever been told who your child or family’s key worker is?
37
Breakdown of responses to name your key worker
H2. Where were you first told about your child’s diagnosis?
Answer Options Response Percent
Response Count
Local shared care hospital 51.9% 42 Principal Treatment Centre 48.1% 39 Other (please specify) 21
1 West Middlesex 2 Ealing hospital 3 RNOH Stanmore 4 They were 95% certain. It was confirmed at GOSH
3 days later
5 Private hospital. Wellesley Southend 6 Other 7 local shared care hospital and principle treatment
centre
8 Harley Street 9 Outside UK
10 Diagnosed in Florida then flown home for treatment
11 Local hospital 12 Queens Romford 13 (selected but no answer given) 14 Paediatrician 15 Bradford Royal 16 By GP 17 Overseas 18 Over the phone, GP. 19 St Mary Hospital 20 Other hospital 21 Home
answered question 81 skipped question 34
Responses
Name your key worker 52
Number of names or other suggestions 78
Breakdown o f responses
Number of responses who named a haematology key worker at GOSH 25
Number of responses who named a oncology/neuro-oncology key worker at GOSH 16
Number of responses who named a key worker at UCLH 5
Number of responses who named a key worker at a POSCU 22
Unknown key worker names 4
Other name/professional given as key worker (Safari team, consultant and ward staff, social worker) 3
Other comments (What is a hospital key worker?, I know by face, and ?) 3
38
H3. How well do you think this was done?
Answer Options Response Percent
Response Count
Very well 46.5% 46 Well 34.3% 34 Adequately 11.1% 11 Badly 4.0% 4 Very badly 4.0% 4
answered question 99 skipped question 16
H4. Were you given a written record of the consultation you had at which your treatment options were discussed?
Answer Options Response Percent
Response Count
Yes 52.1% 50 No 19.8% 19 Don’t know 28.1% 27
answered question 96 skipped question 19
52%
48%
Where were you first told about your child’s diagnosis?
Local shared care hospital
Principal Treatment Centre
47%
34%
11%
4% 4%
How well do you think this was done?
Very well Well Adequately Badly Very badly
39
H5. Did you receive a Family Held Record (sometimes called Shared Care Record)?
Answer Options Response Percent
Response Count
Yes 81.6% 80 No 6.1% 6 Don’t know 12.2% 12
answered question 98 skipped question 17
H5. Do you use it?
Answer Options Response Percent
Response Count
Yes 87.1% 54 No 6.5% 4 Don't know 6.5% 4
answered question 62 skipped question 53
52% 20%
28%
Were you given a written record of the consultation you had at which your treatment
options were discussed?
Yes No Don’t know
82%
6%
12%
Did you receive a Family Held Record (sometimes called Shared Care Record)?
Yes No Don’t know
40
87%
7% 6%
Do you use it?
Yes No Don't know
Very we ll We ll Adequa te ly Bad ly Very Bad lyResponse
Count
62 29 6 2 1 100
38 33 19 2 2 94
54 31 6 1 0 92
36 27 24 4 0 91
40 32 18 1 0 91
101
14skipped question
H6. How we ll do you fee l:
Your local shared care hospital and GOSH/UCLH
GOSH/UCLH communicates with you?
answered question
Your community nursing team communicates with
Answer Op tions
Your local shared care hospital and community
Your local shared care hospital communicates with
41
H7. Please indicate below what information you have received:
Answer Options Yes No Response
Count
Information specific to your child’s cancer? 94 4 98 Information about local services that support the late effects of cancer?
31 52 83
Information about your child’s late effects treatment? (if relevant)
29 45 74
Information about patient involvement groups/self-help groups?
36 46 82
Information about psychological support? 42 45 87 Information about social/spiritual/cultural support? 27 54 81
answered question 98 skipped question 17
GOSH/UCLHcommunicates
with you?
Your localshared care
hospitalcommunicates
with you?
Yourcommunity
nursing teamcommunicates
with you?
Your localshared carehospital and
GOSH/UCLHcommunicate
with eachother ?
Your localshared carehospital andcommunity
nursescommunicate
with eachother?
Very well 62 38 54 36 40
Well 29 33 31 27 32
Adequately 6 19 6 24 18
Badly 2 2 1 4 1
Very Badly 1 2 0 0 0
0
20
40
60
80
100
120R
esp
on
se
co
un
t
How well do you feel:
42
Information specific to
your child’s cancer?
Informationabout local
services thatsupport the
late effects ofcancer?
Information about your child’s late
effects treatment? (if
relevant)
Informationabout patientinvolvementgroups/self-
help groups?
Informationabout
psychologicalsupport?
Informationabout
social/spiritual/culturalsupport?
Yes 94 31 29 36 42 27
No 4 52 45 46 45 54
0
20
40
60
80
100
120R
esp
on
se
Information received
43
Where did you get the information from? Number of responses
Principle treatment centre 25
Social worker 10
Hospital or ward staff 8
POSCU 7
CNS / Key worker 6
Consultant 6
Nurse 6
Internet 4
Doctors 2
Charity 2
CCN 1
Recommendation by other parent 1
Shared care folder 1
Information specific to
your child’s cancer?
Informationabout local
services thatsupport the
late effects ofcancer? (ifrelevant)
Information about your child’s late
effects treatment? (if
relevant)
Informationabout patientinvolvementgroups/self-
help groups?
Informationabout
psychologicalsupport?
Informationabout
social/spiritual/culturalsupport?
Written 65 15 11 15 13 10
Verbal 56 13 13 18 24 16
Other 0 1 0 1 0 1
0
20
40
60
80
100
120
140R
esp
on
se
If yes, was the information:
44
H8. Would you have preferred a different format?
Answer Options Response Percent
Response Count
Yes 8.2% 7 No 91.8% 78 If yes, please specify 8
Video / film. Real people- patient leaflets
Email Emailed info packs / website In writing
At diagnosis should not just say "found a brain tumour" but back it up with other info from GOSH
Written Anything I've needed I've asked.
Individual leaflets handed to me rather than in book.
answered question 85 skipped question 30
Yes 8%
No 92%
Would you have preferred a different format?
45
Section I: Your overall satisfaction with your principle treatment centre
I1. Overall, how satisfied are you with UCLH/GOSH?
Answer Options Response Percent
Response Count
Very satisfied 75.0% 75 Satisfied 22.0% 22 Dissatisfied 2.0% 2 Very dissatisfied 1.0% 1
answered question 100 skipped question 15
Section J: Your overall satisfaction with your local shared care hospital (POSCU)
J1. Overall, how satisfied are you with your local shared care hospital?
Answer Options Response Percent
Response Count
Very satisfied 43.7% 38 Satisfied 39.1% 34 Dissatisfied 11.5% 10 Very dissatisfied 5.7% 5
answered question 87 skipped question 28
75%
22%
2% 1%
Overall, how satisfied are you with UCLH/GOSH?
Very satisfied Satisfied Dissatisfied Very dissatisfied
46
J9. Have you completed this survey:
Answer Options Response Percent
Response Count
Alone (Parent/Carer) 71.0% 66 Alone (Child if old enough) 2.2% 2 Together (Parent/Carer + Child) 26.9% 25
answered question 93 skipped question 22
44%
39%
11%
6%
Overall, how satisfied are you with your local shared care hospital?
Very satisfied Satisfied Dissatisfied Very dissatisfied
71% 2%
27%
Have you completed this survey:
Alone (Parent/Carer)
Alone (Child if old enough)
Together (Parent/Carer + Child)
47
Summary of key points
Most of the children whose parents completed the survey had started treatment 1 month – 3
years ago (79) %. Most of the surveys were completed by families of a child with a haematological
malignancy (61%). 12% were classified as having a neuro-oncology condition and 27% as an
oncology condition. 96% of the children were having or had received chemotherapy
Generally the satisfaction scores across the network were mostly within the very satisfied and
satisfied categories. Overall satisfaction scores with the PTC, POSCU and Children’s Community
Nurses (CCN) were:-
o 97% of families were very satisfied (75%) or satisfied (22%) overall with the PTC
o 83% of families were very satisfied (44%) or satisfied (39%) overall with the POSCU
o 96% of families were very satisfied (72%) or satisfied (24%) overall with the CCN
Families were most satisfied with the friendliness and helpfulness of the staff in the PTC and
POSCU’s
The quality and timing of the food received the lowest satisfaction scores in the PTC and POSCU
Families felt that ward nursing staff in POSCU settings were less able to answer their questions
adequately (48%) compared to the PTC (76%)
Waiting times were reported as 0-29 minutes, by 53% of families in the PTC and 63% of families in
the POSCU.
The frequency of seeing the child’s consultant was viewed as just right by 74% of families in the
PTC and 84% of families in the POSCU
Families reported less access to psychological and social worker support at POSCU’s compared to
the PTC.
Access to Play support was good at the PTC (86%) and POSCU (82%).
35% of families at the PTC and 53% at the POSCU reported not having access to psychological
support
Adequate support for the child for behavioural and emotional difficulties was rated as yes for >
70% of families at the PTC and POSCU
Receiving adequate emotional and psychological support for family members was rated as yes for
70% in both the PTC and POSCU.
Overall staff were reported by families as being better at asking them about their physical needs
rather than their emotional and social needs. Also, better at helping families with physical
problems, understanding treatment plans and looking after the child at home than helping with
emotional, practical and family problems
77% of families not asked about their child’s holistic needs would like to be asked
34% of families at the PTC and 49% of families at the POSCU hadn’t been told, or didn’t know who
their key worker was
52% of families received a written record of the consultation where the child’s treatment options
were discussed
Most families (82%) received a family held record and reported that they used it.
Telling family about the child’s diagnosis was reported by families as being done very well (47%)
and well (34%)
The worst scores for communication were for ‘how well do you feel your local shared care hospital
and GOSG/UCLH communicate with each other?’
Better at giving information about child’s condition, than information about late effects of
treatment, support groups and psychosocial support.
Most of the information received by families was written information about the child’s cancer
48
Families received most of their information from the PTC or social workers.
The survey was completed mostly by parents (71%). However, 27% completed the survey with
their child.
Next steps
The full network wide report to be available on the London Cancer Website
The individual reports for POSCU’s (North Thames) to be sent to the medical and nursing POSCU
leads
The individual reports for South Thames POSCU’s to be disseminated by London Cancer Alliance
The individual reports for CCN’s to be sent to the CCN leads
The Full PTC report for UCLH to be sent to Paula Statham, Matron, Children and Young People’s
Cancer Service for dissemination at UCLH
A copy of the full report will be sent to Head of Patient Experience at GOSH.
The MDT reports for haematology, oncology and neuro-oncology teams at GOSH to be sent to the
MDT team leads.
Two members of the parent council (NTCCNCG) have agreed to translate the survey reports into a
more parent friendly format.
A poster will be created about the survey results to display at GOSH for parents to see
Summary report of the survey findings to be circulated to GOSH staff via the ICI newsletter
The survey will be repeated in September 2014