Patients urged to take part and improve hospital care
 
Health and Social Care Trusts have begun posting out Northern Ireland’s first cancer patient experience survey.  Around 5,500 adults, who were diagnosed with cancer and discharged from hospital between 1st December 2013 and 31st May 2014, will be asked to take part and report back on their experience.
 
Macmillan Cancer Support has produced the questionnaire in conjunction with the Public Health Agency and the results are due to be published this summer.  The leading cancer charity has been campaigning for surveys to be carried out right across the UK. 
 
The data will show if cancer care standards are being maintained, and where improvements can be made.
 
Dr Miriam McCarthy, Consultant in Public Health Medicine with the PHA, says: “The best people to ask how well cancer services are being delivered are the patients themselves.  When a patient is told they have cancer, their whole world may change.  Patient experience isn’t just about clinical care. This survey asks patients about the way they were told they had cancer and whether they felt involved in decision-making. It covers each stage, from diagnosis and hospital treatment through to home support.  I would encourage anyone who receives a survey to fill it in because the information provided will tell us how well we are meeting patients’ needs and allow us to improve cancer services in the future.”
 
Heather Monteverde, General Manager for Macmillan Cancer Support in Northern Ireland, says:  “Macmillan is delighted to be involved with the PHA in conducting the first ever Northern Ireland cancer patient experience survey.
It’s vitally important to measure survival rates and waiting time targets, but it’s equally important to find out what patients really think about the quality of care they receive in and out of hospital. We hope that all five Health and Social Care Trusts will take the results of this survey into consideration, when planning future cancer care to make sure the services they provide meet people’s clinical and non-clinical needs. Cancer treatment goes beyond surgery, radiotherapy and chemotherapy. We need people-centred care, not just symptom-focussed treatment.”
 
Macmillan believes the survey provides an opportunity to test policy, asking questions about access to cancer specialist nurses and written care plans.  The leading cancer charity hopes it will lead to a better understanding of patient experience, based on cancer type, age group or gender.
 
63-year-old Barbara Bailie from Donacloney was diagnosed with breast cancer in 2008.  She now sits on a patient steering group at Craigavon Area Hospital.  She says she wants to give something back and help improve cancer services: “My son died from stomach cancer in 2000.  He was only 27.  By the time I was diagnosed with breast cancer eight years later, cancer care had moved on and improved so much.  Staff are much more aware of patients’ needs now but they need the feedback – good and bad. This cancer patient experience survey is a chance for everyone taking part to tell their individual stories.  That way we can see what’s working well and what needs further improvement. For instance:  I was talked through every stage of my treatment.  Not everyone is.  And that is so important because it helps take the fear away, or at least keep it under control.”
 
The Cancer Experience Survey will be sent through the post, with a Freepost envelope to return the completed form.  There will also be a FREEPHONE helpline, so anyone who needs assistance with the survey can call 0800 783 1775.

Barbara Bailie (centre) with Roberta Brownlee, Chair of Southern Health & Social Care Trust, Macmillan volunteers and Information Centre and Trust staff.