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

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 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

3

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)


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


6

A5. How long ago did your child start their treatment?


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


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?


Response Count

Very satisfied 63.2% 67 Satisfied 34.0% 36 Dissatisfied 1.9% 2 Very dissatisfied 0.9% 1


B2. How long do you usually have to wait before you are seen by the doctor/nurse practitioner?


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


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?


Response Count



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


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:


Response Count

Too often? 3.0% 3 Just right? 74.3% 75 Not often enough? 22.8% 23


B6. How satisfied are you that you have access to someone (your consultant or nurse) who can answer your questions?


Response Count



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?


Response Count

Yes 79.0% 79 No 21.0% 21


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


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?


Response Count

Yes 70.3% 71 No 29.7% 30


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?


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


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?


Response Count



C4. Are the ward nursing staff able to answer your questions adequately?


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?


Response Count



C6. How satisfied are you with the timing of the meal times at the PTC?


Response Count



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?


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


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?


Response Count

Yes 76.0% 76 No 24.0% 24


D2. How satisfied are you with how child and family-friendly the clinic is at your local shared care hospital?


Response Count



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?


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


D4. Do you have to wait in clinic for blood test results after seeing the doctor?


Response Count

Yes 23.2% 22 No 76.8% 73


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?


Response Count

Under 30mins 30.4% 7 30-59mins 21.7% 5 1-2hrs 26.1% 6 Over 2hrs 21.7% 5


D5. How satisfied are you with how friendly and helpful the staff are at your local shared care hospital?


Response Count



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


D7. How often do you see your consultant - does this frequency feel:


Response Count

Too often? 1.2% 1 Just right? 83.5% 71 Not often enough? 15.3% 13


D8. Is there a play specialist available when your child is having any painful procedures?


Response Count

Yes 69.3% 61 No 30.7% 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:


Count

Behavioural difficulties 58 22 80 Emotional difficulties 60 22 82


D10. Do you feel other members of the family have received adequate emotional/psychological support?


Response Count

Yes 69.7% 62 No 30.3% 27


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?


Response Count

Yes 94.8% 91 No 5.2% 5


E2. Are you able to arrange for your child to be seen directly on the ward (without going through your GP or casualty department)?


Response Count

Yes 94.4% 85 No 5.6% 5


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?


Response Count

Yes 85.7% 6 No 14.3% 1


E3. How satisfied are you with how child and family-friendly the ward environment is at your local shared care hospital?


Response Count



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?


Response Count



E5. Are the ward nursing staff able to answer your questions adequately?


Response Count

Yes 47.9% 45 No 6.4% 6 Mostly 45.7% 43


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?


Response Count

Very Satisfied 17.4% 15 Satisfied 57.0% 49 Dissatisfied 24.4% 21 Very Dissatisfied 1.2% 1


E7. How satisfied are you with the timing of the meal times at your local shared care hospital?


Response Count



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:


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


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).



skipped question 53

F2. Do you have a community nurse who visits you and your child at home?


Response Count

Yes 94.9% 93 No 5.1% 5


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?


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


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


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?



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?


Response Count

Yes 65.1% 54 No 14.5% 12 Don't know 20.5% 17


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


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)


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


skipped question 19

G4. From the needs you have identified above which of them did you receive help with?


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


skipped question 29

34

G5. If you did receive help, who helped you with these needs? (tick all that apply)


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


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?


Response Count



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?


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


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?


Response Count

Very well 46.5% 46 Well 34.3% 34 Adequately 11.1% 11 Badly 4.0% 4 Very badly 4.0% 4


H4. Were you given a written record of the consultation you had at which your treatment options were discussed?


Response Count

Yes 52.1% 50 No 19.8% 19 Don’t know 28.1% 27


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)?


Response Count

Yes 81.6% 80 No 6.1% 6 Don’t know 12.2% 12


H5. Do you use it?


Response Count

Yes 87.1% 54 No 6.5% 4 Don't know 6.5% 4


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:


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


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?


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.


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?


Response Count



Section J: Your overall satisfaction with your local shared care hospital (POSCU)

J1. Overall, how satisfied are you with your local shared care hospital?


Response Count



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:


Response Count

Alone (Parent/Carer) 71.0% 66 Alone (Child if old enough) 2.2% 2 Together (Parent/Carer + Child) 26.9% 25


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

north thames paediatric haematology and oncology parent and … · 2016-07-06 · 2 1. background...

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