1. Analysis of Patient Experience of Cancer Care Pathway within Merseyside & Cheshire Produced by Merseyside and Cheshire Cancer Network Presented: November 2008 Patient Survey Report St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

2.  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 St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009 Background

3. 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 St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

4.  Between August 2007 and March 2008  The first 25 patients diagnosed from April 1 st 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 Methodology St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

5.  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 The Survey St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

6.  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? St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

7. Network % 88Trust % Gynae % How were you given your diagnosis? (in person) 96 93 Where were you told of your diagnosis? (in clinic) 848371 How did you find the environment? (pleasant) 594760 If diagnosis given on the ward, was it in a private location ? 605033 Did you understand the explanation of the diagnosis you were given? 726871 Who was present when given your diagnosis? (family support) 565550 Who gave you your diagnosis? (doctor) 888478 Did you feel able to ask questions about your diagnosis? 888993 Diagnosis

8. Information St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009 %

9. Next Stage St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009 %

10. NetworkTrustGynae Did you see a nurse specialist? 8386100 If Yes did you know who your nurse specialist was? 9392100 Did you feel you received enough support? 808993 Nurse Specialist St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

11. NetworkTrustGynae Before diagnosis was given242227 When diagnosis was given595750 After your diagnosis was given 6869100 During treatment505758 Never101 St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009 On what occasions did you have contact with your Nurse Specialist?

12. NetworkTrustGynae Listen to concerns807675 Advice with symptom control 757479 Emotional Support53 64 Contact with community nurses 333143 Contact with other professionals 262550 If you were seen by a nurse specialist, in what ways did you find them supportive? St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

13. NetworkTrustGynae Did you feel you were involved in the decision making process? 798286 Were you informed of possible side effects? 818493 Did you feel you received emotional support? 646779 Were people working together to provide the best care? 616064 Were you told about support groups? 493379 St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009 Survey continued

14.  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 What changes would you make? St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

15.  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 Network Recommendations St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

16.  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 Trust Recommendations St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

17. 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 Gynaecology Oncology Action Plan

18. St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009