North Thames Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report quantitative analysis

Transcription

1 North Thames Paediatric Haematology and Oncology Parent and Patient Satisfaction Survey 2013: Network wide report quantitative analysis Conducted by: Author: Patient Experience Subgroup of the North Thames Children s Cancer Network Coordinating Group 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 Methods 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) Section D: The outpatient clinic at your local shared care hospital (POSCU) (Questions D1-D10) Section E: The children s ward at your local shared care hospital? (Questions E1-E9) Section F: Community nurses (Questions F1-F4) Section G: Holistic needs assessment (Questions G1-G6) Section H: Information and communication (Questions H1-H8) Section I: Your overall satisfaction with your principle treatment centre Section J: Your overall satisfaction with your local shared care hospital (POSCU) Summary of key points Next steps

2 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 reportthematic analysis. Responses to B10, C8, D12, E10, F5, G7, H9, I2-I6 and J2-J6 are incorporated within the thematic analysis. Response rates Responses Total number of responses completed paper versions of the survey received. Some online entries by parents failed as only able to complete sections A-D (N=9). 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 Number 2

3 Distribution of the surveys Where distributed from Number of surveys handed out Number of surveys returned Response rate % In-patient wards GOSH % Out patients & Day Care GOSH % Princess Alexandra Harlow 4 0 0% Queens hospital 3 0 0% Hillingdon % Barnet % Whipps Cross % 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? Response Percent Response Count Less than 2 yrs 15.8% yrs 42.1% yrs 36.8% yrs 0.9% 1 Over 15yrs 4.4% 5 answered question 114 skipped question 1 3

4 37% How old is your child? 1% 4% 16% 42% Less than 2 yrs 2-5yrs 6-10yrs 11-15yrs Over 15yrs A2. How old was your child when they were diagnosed? Less than 2 yrs 31.0% yrs 46.9% yrs 18.6% yrs 2.7% 3 Over 15yrs 0.9% 1 answered question 113 skipped question 2 How old was your child when they were diagnosed? 3% 1% 18% 47% 31% Less than 2 yrs 2-5yrs 6-10yrs 11-15yrs Over 15yrs A3.What is the diagnosis? 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 4

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) 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 5

6 % 120.0% What treatment is your child having/did your child have? 100.0% 80.0% 60.0% 40.0% 20.0% 0.0% Bone marrow Surgery Chemotherapy Radiotherapy transplant Series1 32.5% 95.6% 11.4% 5.3% A5. How long ago did your child start their treatment? Less than 1 month ago 8.2% 9 1 month to 3 years ago 79.1% 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 How long ago did your child start their treatment? 11% 2% 8% 79% Less than 1 month ago 1 month to 3 years ago 3 5 years ago over 5 years 6

7 A6. W hich is yo ur Princip a l T re a tme nt Ce ntre (PT C), i.e. the ho sp ita l whe re yo ur child re ce ive s his/he r ma in ca nce r tre a tme nt Answe r Op tio ns GOSH UCLH What is the name of your local shared care hospital? Re sp o nse Pe rce nt Re sp o nse Co unt 91.2% % a nswe re d q ue stio n skip p e d q ue stio n 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? Very satisfied 63.2% 67 Satisfied 34.0% 36 Dissatisfied 1.9% 2 Very dissatisfied 0.9% 1 answered question 106 skipped question 9 How satisfied are you with how child and family-friendly your clinic is at the PTC? 2% 1% 34% 63% Very satisfied Satisfied B2. How long do you usually have to wait before you are seen by the doctor/nurse practitioner? Under 15mins 17.3% mins 36.5% mins 28.8% hrs 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 7

8 How long do you usually have to wait before you are seen by the doctor/nurse practitioner? 11% 7% 29% 36% 17% Under 15mins 15-29mins 30-59mins 1-2hrs B3. How satisfied are you with how friendly and helpful the clinic staff are? Very satisfied 74.5% 79 Satisfied 23.6% 25 Dissatisfied 0.9% 1 Very dissatisfied 0.9% 1 answered question 106 skipped question 9 How satisfied are you with how friendly and helpful the clinic staff are? 1% 1% 24% 74% Very satisfied Satisfied Dissatisfied Very dissatisfied B4. W ho d o yo u usua lly se e whe n yo u a tte nd the clinic? Answe r Op tio ns Your consultant Nurse Other doctor Re sp o nse Co unt answered question 101 skipped question 14 8

9 B 5. How often do you see your consultant - does this frequency feel: Too often? 3.0% 3 Just right? 74.3% 75 Not often enough? 22.8% 23 answered question 101 skipped question 14 Does this frequency feel: 3% too often? 23% 74% just right? not often enough? B6. How satisfied are you that you have access to someone (your consultant or nurse) who can answer your questions? Very satisfied 52.3% 57 Satisfied 44.0% 48 Dissatisfied 1.8% 2 Very dissatisfied 1.8% 2 answered question 109 skipped question 6 How satisfied are you that you have access to someone (your consultant or nurse) who can answer your questions? 2% 2% 44% 52% Very satisfied Satisfied Dissatisfied Very dissatisfied 9

10 B7. Is there a play specialist available when your child is having any painful procedures? Yes 79.0% 79 No 21.0% 21 answered question 100 skipped question 15 Is there a play specialist available when your child is having any painful procedures? 21% Yes No 79% B8. Do you feel your child has had adequate support for the following: Yes No Response Count Behavioural difficulties Emotional difficulties answered question 90 skipped question 25 10

11 Do you feel your child has adequate support for the following: No Yes Behavioural difficulties Emotional difficulties B9. Do you feel other members of the family have received adequate emotional/psychological support? Yes 70.3% 71 No 29.7% 30 answered question 101 skipped question 14 Do you feel other members of the family have received adequate emotional/psychological support? 30% 70% Yes No 11

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? 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 Are you able to contact the children s ward at any time for advice? 6% 94% Yes No C2. Ho w sa tisfie d a re yo u with ho w child a nd fa mily-frie nd ly the wa rd e nviro nme nt is a t yo ur PT C? Answe r Op tio ns -Very satisfied Satisfied Dissatisfied Very dissatisfied Re sp o nse Pe rce nt Re sp o nse Co unt 70.8% % % 1 0.9% 1 a nswe re d q ue stio n skip p e d q ue stio n

13 How satisfied are you with how child and family-friendly the ward environment is at your PTC? 1% 1% -Very satisfied 27% 71% Satisfied Dissatisfied C 3. How satisfied are you with how friendly and helpful the ward staff are? Very satisfied 74.3% 84 Satisfied 24.8% 28 Dissatisfied 0.0% 0 Very dissatisfied 0.9% 1 answered question 113 skipped question 2 How satisfied are you with how friendly and helpful the ward staff are? 0% 1% Very satisfied 25% Satisfied 74% Dissatisfied Very dissatisfied C4. Are the ward nursing staff able to answer your questions adequately? 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 13

14 Are the ward nursing staff able to answer your questions adequately? 0% 24% 76% Yes No Mostly C5. How satisfied are you with quality of the meals served at the PTC? Very satisfied 25.2% 27 Satisfied 50.5% 54 Dissatisfied 15.0% 16 Very dissatisfied 9.3% 10 answered question 107 skipped question 8 How satisfied are you with quality of the meals served at the PTC? 9% 15% 51% 25% Very satisfied Satisfied Dissatisfied Very dissatisfied C6. How satisfied are you with the timing of the meal times at the PTC? Very satisfied 27.1% 29 Satisfied 57.0% 61 Dissatisfied 12.1% 13 Very dissatisfied 3.7% 4 answered question 107 skipped question 8 14

15 How satisfied are you with the timing of the meal times at the PTC? 12% 4% 57% 27% Very satisfied Satisfield Dissatisfied Very dissatisfied C7. Do you have adequate access to the following on the ward? Yes No Response Count A member of the Play Team Psychological support Social worker Other activities answered question 113 skipped question 2 Do you have adequate access to the following on the ward? No Yes A member of the Play Team 33 Psychological support Social worker Other activities 15

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? Yes 76.0% 76 No 24.0% 24 answered question 100 skipped question 15 Does your local shared care hospital have a special oncology clinic for children? 24% 76% Yes No D2. How satisfied are you with how child and family-friendly the clinic is at your local shared care hospital? Very satisfied 50.0% 51 Satisfied 37.3% 38 Dissatisfied 9.8% 10 Very dissatisfied 2.9% 3 answered question 102 skipped question 13 16

17 How satisfied are you with how child and familyfriendly the clinic is at your local shared care hospital? 10% 3% 37% 50% Very satisfied Satisfied Dissatisfied Very dissatisfied D3. How long do you usually have to wait to be seen? Under 15mins 24.7% mins 38.1% mins 25.8% hrs 8.2% 8 Over 2hrs 3.1% 3 answered question 97 skipped question 18 How long do you usually have to wait to be seen? 8% 3% 26% 25% 38% Under 15mins 15-29mins 30-59mins 1-2hrs Over 2hrs D4. Do you have to wait in clinic for blood test results after seeing the doctor? Yes 23.2% 22 No 76.8% 73 answered question 95 skipped question 20 17

18 Do you have to wait in clinic for blood test results after seeing the doctor? 77% 23% Yes No D4. If yes, how long usually? Under 30mins 30.4% mins 21.7% 5 1-2hrs 26.1% 6 Over 2hrs 21.7% 5 answered question 23 skipped question 92 If yes, how long usually? 22% 26% 30% 22% Under 30mins 30-59mins 1-2hrs Over 2hrs D5. How satisfied are you with how friendly and helpful the staff are at your local shared care hospital? Very satisfied 51.5% 51 Satisfied 39.4% 39 Dissatisfied 6.1% 6 Very dissatisfied 3.0% 3 answered question 99 skipped question 16 18

19 How satisfied are you with how friendly and helpful the staff are at your local shared care hospital? 6% 3% 39% 52% Very satisfied Satisfied Dissatisfied Very dissatisfied D6. Who do you usually see when you attend the clinic? 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: Too often? 1.2% 1 Just right? 83.5% 71 Not often enough? 15.3% 13 answered question 85 skipped question 30 Does this frequency feel: 15% 1% too often? 84% just right? not often enough? D8. Is there a play specialist available when your child is having any painful procedures? Yes 69.3% 61 No 30.7% 27 answered question 88 skipped question 27 19

20 Is there a play specialist available when your child is having any painful procedures? 31% 69% Yes No D9. Do you feel your child has had adequate support for the following: Yes No Response Count Behavioural difficulties Emotional difficulties answered question 82 skipped question 33 Do you feel your child has had adequate support for the following: No Yes Behavioural difficulties Emotional difficulties D10. Do you feel other members of the family have received adequate emotional/psychological support? Yes 69.7% 62 No 30.3% 27 answered question 89 skipped question 26 20

21 Do you feel other members of the family have received adequate emotional/psychological support? 30% 70% Yes No 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? Yes 94.8% 91 No 5.2% 5 answered question 96 skipped question 19 Are you able to contact the children s ward at any time for advice? 5% 95% Yes No E2. Are you able to arrange for your child to be seen directly on the ward (without going through your GP or casualty department)? Yes 94.4% 85 No 5.6% 5 answered question 90 skipped question 25 21

22 Are you able to arrange for your child to be seen directly on the ward (without going through your GP or casualty department)? 6% Yes No 94% E2. If no, would this make a difference to your experience if this was possible? Yes 85.7% 6 No 14.3% 1 answered question 7 skipped question 108 If no, would this make a difference to your experience if this was possible? 14% 86% Yes No E3. How satisfied are you with how child and family-friendly the ward environment is at your local shared care hospital? Very satisfied 45.3% 43 Satisfied 40.0% 38 Dissatisfied 7.4% 7 Very dissatisfied 7.4% 7 answered question 95 skipped question 20 22

23 How satisfied are you with how child and familyfriendly the ward environment is at your local shared care hospital? 8% 40% 7% 45% Very satisfied Satisfied Dissatisfied Very dissatisfied E4. How satisfied are you with how friendly and helpful the ward staff are at your local shared care hospital? Very satisfied 55.8% 53 Satisfied 33.7% 32 Dissatisfied 6.3% 6 Very dissatisfied 4.2% 4 answered question 95 skipped question 20 How satisfied are you with how friendly and helpful the ward staff are at your local shared care hospital? 6% 4% 34% 56% Very satisfied Satisfied Dissatisfied Very dissatisfied E5. Are the ward nursing staff able to answer your questions adequately? Yes 47.9% 45 No 6.4% 6 Mostly 45.7% 43 answered question 94 skipped question 21 23

24 Are the ward nursing staff able to answer your questions adequately? 46% 48% Yes No Mostly 6% E6. How satisfied are you with the quality of the meals served at your local shared care hospital? Very Satisfied 17.4% 15 Satisfied 57.0% 49 Dissatisfied 24.4% 21 Very Dissatisfied 1.2% 1 answered question 86 skipped question 29 How satisfied are you with the quality of the meals served at your local shared care hospital? 1% 24% 18% 57% Very Satisfied Satisfied Dissatisfied Very Dissatisfied E7. How satisfied are you with the timing of the meal times at your local shared care hospital? Very satisfied 19.0% 16 Satisfied 67.9% 57 Dissatisfied 9.5% 8 Very dissatisfied 3.6% 3 answered question 84 skipped question 31 24

25 How satisfied are you with the timing of the meal times at your local shared care hospital? 4% 9% 68% 19% Very satisfied Satisfied Dissatisfied Very dissatisfied E9. Do you have adequate access to the following on the ward: Yes No Response Count A member of the Play Team Psychological support Social worker Other activities answered question 89 skipped question 26 Do you have adequate access to the following on the ward: No Yes A member of the Play Team Psychological support 25 Social worker Other activities 25

26 Section F: Community nurses (Questions F1-F4) F1. Please state the name of your community team (if known). Response Count 62 answered question 62 skipped question 53 F2. Do you have a community nurse who visits you and your child at home? Yes 94.9% 93 No 5.1% 5 answered question 98 skipped question 17 Do you have a community nurse who visits you and your child at home? 5% 95% Yes No 26

27 F3. How satisfied are you with your community nursing team? 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 27

28 How satisfied are you with your community nursing team? 3% 1% Very satisfied 24% Satisfied Dissatisfied 72% Very dissatisfied F4. What services/support does your community nursing team provide? (tick all that apply) Yes No Don't Response know Count Blood sampling Care of central lines Support child s education Home IV chemotherapy Home IV antibiotics therapy day cover 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 28

29 Number What services/support does your community nursing team provide? (tick all that apply) Blood sampling Care of central lines Support child s education Home IV chemotherap y Home IV antibiotics therapy 7 day cover Yes No Don't know 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: Yes No Don't know Response Count Physical Emotional Social Spiritual Educational answered question 96 skipped question 19 29

30 Number Have you or your child ever been asked about your needs or concerns in the following areas: Physical Emotional Social Spiritual Educational Yes No Don't know G1. If yes, who were you asked by? When were you asked? Response Count 60 answered question 60 skipped question 55 30

31 Number of responses Who asked you about your child's needs? Series1 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? Yes 65.1% 54 No 14.5% 12 Don't know 20.5% 17 answered question 83 skipped question 32 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? 20% 15% 65% Yes No Don't know G2. If ye s, who ma d e this p la n fo r yo ur child? Answe r Op tio ns Re sp o nse Co unt a nswe re d q ue stio n skip p e d q ue stio n

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? Response Percent 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 Response Count If you were not asked, would you have like to have been asked about any of these areas? 23% 77% Yes No 32

33 G3. What sort of things do you think your family need help and support with? (Please tick all that apply) 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? 33 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 Percent 80 What do you think your family needs help with? Vs What did you receive help with? (Question G3 & G4) Practical problems Family problems Emotional problems Spiritual / Communication Physical problems religious concerns problems Understanding the treatment plan Education / school problems Caring for your child at home None G5. If you did receive help, who helped you with these needs? (tick all that apply) 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 34

35 Consultant Hospital School Teacher Psychologist/ Psychiatrist/Psychotherapist Clinical nurse specialist Social Worker Ward or clinic doctor Community Nurse Play Worker Ward Nurse 80.0% 70.0% 60.0% 50.0% 40.0% 30.0% 20.0% 10.0% 0.0% If you did receive help, who helped you with these needs? (tick all that apply) Series1 G6. How satisfied were you with the help offered? Very satisfied 50.6% 43 Satisfied 45.9% 39 Dissatisfied 2.4% 2 Very dissatisfied 1.2% 1 answered question 85 skipped question 30 How satisfied were you with the help offered? 2% 1% Very satisfied Satisfied 46% 51% Dissatisfied Very dissatisfied 35

36 Number of responses Section H: Information and communication (Questions H1-H8) H1. Ha ve yo u e ve r b e e n to ld who yo ur child o r fa mily s ke y wo rke r is? At UCLH/GOSH: At your local shared care hospital: Name of your key worker Ye s No Don t know Re sp o nse Co unt answered question skipped question Have you ever been told who your child or family s key worker is? At UCLH/GOSH: At your local shared care hospital: Yes No Don t know 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 36

37 Breakdown of responses to name your key worker Re sp o nse s Name your key worker 52 Number of names or other suggestions 78 Bre a kd o wn o f re sp o nse s 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 H2. Where were you first told about your child s diagnosis? 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 37

38 Where were you first told about your child s diagnosis? Local shared care hospital Principal Treatment Centre 48% 52% H3. How well do you think this was done? 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 How well do you think this was done? Very well Well Adequately Badly Very badly 4% 4% 11% 47% 34% H4. Were you given a written record of the consultation you had at which your treatment options were discussed? Yes 52.1% 50 No 19.8% 19 Don t know 28.1% 27 answered question 96 skipped question 19 38

39 Were you given a written record of the consultation you had at which your treatment options were discussed? Yes No Don t know 28% 20% 52% H5. Did you receive a Family Held Record (sometimes called Shared Care Record)? Yes 81.6% 80 No 6.1% 6 Don t know 12.2% 12 answered question 98 skipped question 17 Did you receive a Family Held Record (sometimes called Shared Care Record)? Yes No Don t know 6% 12% 82% H5. Do you use it? Yes 87.1% 54 No 6.5% 4 Don't know 6.5% 4 answered question 62 skipped question 53 39

40 Do you use it? Yes No Don't know 7% 6% 87% H6. Ho w we ll d o yo u fe e l: GOSH/UCLH communicates with you? Your local shared care hospital communicates with Your community nursing team communicates with Your local shared care hospital and GOSH/UCLH Your local shared care hospital and community Very well Well Adequately Badly Very Badly Re sp o nse Co unt answered question skipped question

41 Response count 120 How well do you feel: GOSH/UCLH communicates with you? Your local shared care hospital communicates with you? Your community nursing team communicates with you? Your local shared care hospital and GOSH/UCLH communicate with each other? Your local shared care hospital and community nurses communicate with each other? Very well Well Adequately Badly Very Badly H7. Please indicate below what information you have received: Yes No Response Count Information specific to your child s cancer? Information about local services that support the late effects of cancer? Information about your child s late effects treatment? (if relevant) Information about patient involvement groups/selfhelp groups? Information about psychological support? Information about social/spiritual/cultural support? answered question 98 skipped question 17 41

42 Response Information received Information specific to your child s cancer? Information about local services that support the late effects of cancer? Information about your child s late effects treatment? (if relevant) Information about patient involvement groups/selfhelp groups? Information about psychological support? Information about social/spiritua l/cultural support? Yes No

43 Response If yes, was the information: Information specific to your child s cancer? Information about local services that support the late effects of cancer? (if relevant) Information about your child s late effects treatment? (if relevant) Information about patient involvement groups/selfhelp groups? Information about psychological support? Information about social/spiritua l/cultural support? Written Verbal Other 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 43

44 H8. Would you have preferred a different format? Yes 8.2% 7 No 91.8% 78 If yes, please specify 8 Video / film. Real people- patient leaflets ed 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 Would you have preferred a different format? Yes 8% No 92% 44

45 Section I: Your overall satisfaction with your principle treatment centre I1. Overall, how satisfied are you with UCLH/GOSH? Very satisfied 75.0% 75 Satisfied 22.0% 22 Dissatisfied 2.0% 2 Very dissatisfied 1.0% 1 answered question 100 skipped question 15 Overall, how satisfied are you with UCLH/GOSH? Very satisfied Satisfied Dissatisfied Very dissatisfied 2% 1% 22% 75% Section J: Your overall satisfaction with your local shared care hospital (POSCU) J1. Overall, how satisfied are you with your local shared care hospital? Very satisfied 43.7% 38 Satisfied 39.1% 34 Dissatisfied 11.5% 10 Very dissatisfied 5.7% 5 answered question 87 skipped question 28 45

46 Overall, how satisfied are you with your local shared care hospital? Very satisfied Satisfied Dissatisfied Very dissatisfied 6% 11% 44% 39% J9. Have you completed this survey: 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 Have you completed this survey: Alone (Parent/Carer) Alone (Child if old enough) Together (Parent/Carer + Child) 27% 2% 71% 46

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 47

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