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					                                                                       Patient Survey Report
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                             Analysis of Patient
                                                             Experience of
                                                             Cancer Care
                                                             Pathway within
                                                             Merseyside &
                                                             Cheshire


                                                                                   Produced by Merseyside and
                                                                                   Cheshire Cancer Network
                                                                                   Presented: November 2008
                                                             Background
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009



                                                              2004 - National Audit Office carried out a national survey of cancer
                                                               patients
                                                              2005 - Results were published, together with recommendations for the
                                                               Cancer Networks
                                                                                     Recommendations
                                                              Regular good quality surveys of patient experience should be
                                                               undertaken at local level to help drive up the quality of patient care

                                                              A template would be developed by the NAO and adapted by the
                                                               networks. This would avoid duplication and the need for ethical approval

                                                              Within the Merseyside and Cheshire network, the Lead Nurse and
                                                               Patient Involvement Groups agreed to look at the NAO survey and
                                                               devise a shorter version

                                                              Survey was adapted and piloted in Aintree and St Helens & Knowsley,
                                                               from this the finalised version was rolled out
                                                              Background
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                             For a variety of reason not all Hospital Trusts were able to
                                                             participate. Those who did were:

                                                              Countess of Chester
                                                              Liverpool Heart and Chest Hospital
                                                              Liverpool Women’s
                                                              North Cheshire
                                                              Southport and Ormskirk
                                                              St Helens & Knowsley

                                                              The main tumour sites covered were: Breast, Lung,
                                                             Colorectal, Haematology, Upper GI, Urology and
                                                             Gynaecology
                                                             Methodology
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                              Between August 2007 and March 2008

                                                              The first 25 patients diagnosed from April 1st 2007 from
                                                              each tumour group, who were known to be alive, and who
                                                              had been given a cancer diagnosis, were approached

                                                              Cancer Services, the Service Improvement Facilitator and
                                                              CNS’s were responsible for undertaking the survey

                                                              Network was responsible for providing the survey and
                                                              analysing the data
                                                             The Survey
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                338 completed questionnaires received by the
                                                                 Merseyside & Cheshire Cancer Network for analysis

                                                                34% (n116) were St Helens & Knowsley

                                                                14/30 were from the Gynaecology Oncology Department
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009



                                                                The Survey had 28 questions looking at Diagnosis,
                                                                 Patient Information, the Nurse Specialist, Decision
                                                                 Making and Support Groups

                                                                Worst Experience

                                                                Best Experience

                                                                What changes would you make?
Diagnosis
                                              Network   88Trust   Gynae
                                                %         %        %
How were you given your diagnosis?              96        96       93
(in person)
Where were you told of your diagnosis?          84        83       71
(in clinic)
How did you find the environment?               59        47       60
(pleasant)
If diagnosis given on the ward, was it in a     60        50       33
private location ?
Did you understand the explanation of the       72        68       71
diagnosis you were given?
Who was present when given your                 56        55       50
diagnosis? (family support)
Who gave you your diagnosis?                    88        84       78
(doctor)
Did you feel able to ask questions about        88        89       93
your diagnosis?
                                                             Information
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                    Receive           Useful   Understand          Easy to read
                                                              100

                                                                            95        94            92        92
                                                               80                                                       90
                                                                                                         88
                                                                                                                             80 80
                                                             % 60                                                  72
                                                                       58        59            59
                                                               40


                                                               20


                                                                0
                                                                       NETWORK                      TRUST               GYNAE
                                                             Next Stage
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                   Understand next stage        Copy clinic letter offered
                                                                   If no would they want it

                                                                 100
                                                                        89               90
                                                                 80                                         86
                                                             %                    73                  77
                                                                 60

                                                                 40                                                   50
                                                                                                                 43
                                                                                               35
                                                                 20          27

                                                                  0
                                                                         Network              Trust          Gynae
                                                             Nurse Specialist
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                                   Network   Trust   Gynae
                                                             Did you see a nurse     83       86      100
                                                             specialist?
                                                             If Yes did you know     93       92      100
                                                             who your nurse
                                                             specialist was?
                                                             Did you feel you        80       89      93
                                                             received enough
                                                             support?
                                                             On what occasions did you have
                                                             contact with your Nurse Specialist?
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                                           Network   Trust   Gynae

                                                              Before diagnosis was given     24       22      27



                                                              When diagnosis was given       59       57      50


                                                              After your diagnosis was       68       69      100
                                                              given


                                                              During treatment               50       57      58

                                                              Never                           1       0        1
                                                             If you were seen by a nurse specialist,
                                                             in what ways did you find them
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                             supportive?
                                                                                   Network   Trust   Gynae
                                                             Listen to concerns      80       76      75

                                                             Advice with symptom     75       74      79
                                                             control

                                                             Emotional Support       53       53      64

                                                             Contact with            33       31      43
                                                             community nurses

                                                             Contact with other      26       25      50
                                                             professionals
                                                             Survey continued
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                                                 Network   Trust   Gynae
                                                             Did you feel you were involved in     79       82      86
                                                             the decision making process?
                                                             Were you informed of possible         81       84      93
                                                             side effects?
                                                             Did you feel you received             64       67      79
                                                             emotional support?
                                                             Were people working together to       61       60      64
                                                             provide the best care?
                                                             Were you told about support           49       33      79
                                                             groups?
                                                             What changes would you make?
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009



                                                                Toilets on H4 not clean, staff did their best

                                                                Support groups solely for your own needs in your local
                                                                 area

                                                                Not given my clexane - family had to complain about my
                                                                 leg pain (pt had DVT)

                                                                Delays in keeping the GP informed - test results not
                                                                 passed on

                                                                Manner given diagnosis unacceptable - no relative
                                                                 present, not very private environment

                                                                We should be asked if we want a family member or friend
                                                                 to be present before the diagnosis is discussed, private
                                                                 environment handled sensitively
                                                             Network Recommendations
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                Ensure patients are told in person & in private
                                                                Ensure that clear and concise information about who
                                                                 they can have with them is given
                                                                Consistent provision of patient information, summarising
                                                                 all that was discussed in the consultation
                                                                All patients offered a copy of their clinic letter
                                                                All patients involved in decision making process
                                                                All patients offered emotional support
                                                                Information on support groups
                                                                Complete co-ordinated services
                                                             Trust Recommendations
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009




                                                                All tumour sites are to develop an action plan on
                                                                 three areas of the survey which will be presented
                                                                 to the trust cancer committee and fed back to the
                                                                 network
                                                             Gynaecology Oncology Action Plan
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009



                                                             Copy of clinic letter
                                                              43% patients offered a copy of their letter
                                                              50% of patients would have like this to have been
                                                              offered

                                                             Nurse Specialist present at diagnosis
                                                              Although 100% of patients did have contact with the
                                                              CNS, 50% patients did not have a nurse specialist
                                                              present when given their diagnosis

                                                             Breaking bad news
                                                               21% of patients had no one with them other than the Dr
                                                               when given their diagnosis. Only 57% had a family
                                                               member or friend present
St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009