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

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

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

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

5. The Survey • 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

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

11. On what occasions did you have contact with your Nurse Specialist? St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

12. 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. Survey continued St Helens & Knowsley Teaching Hospital NHS Trust 2008-2009

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

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

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

17. Gynaecology Oncology Action Plan 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

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