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

 National Audit Office carried out a national survey of cancer patients  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 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

 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

 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

 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

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

Information St Helens & Knowsley Teaching Hospital NHS Trust %

Next Stage St Helens & Knowsley Teaching Hospital NHS Trust %

NetworkTrustGynae Did you see a nurse specialist? If Yes did you know who your nurse specialist was? Did you feel you received enough support? Nurse Specialist St Helens & Knowsley Teaching Hospital NHS Trust

NetworkTrustGynae Before diagnosis was given When diagnosis was given After your diagnosis was given During treatment Never101 St Helens & Knowsley Teaching Hospital NHS Trust On what occasions did you have contact with your Nurse Specialist?

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

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

 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

 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

 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

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 Gynaecology Oncology Action Plan

St Helens & Knowsley Teaching Hospital NHS Trust