Summer 2012 Patient Experience Team Newsletter Welcome Hello and welcome to the second edition of our newsletter Page 2 Cancer And Faith Communities Find out about the project we are running in conjunction with RAFFA Page 3 Current Projects Update Hear the latest news on some of our other innovative projects Page 4 Out and About Find out where we have been, as we hit the road to distribute copies of our latest health supplements Page 6
Editorial The Team Welcome to the second Patient Experience Team newsletter. This edition features some of the great partnerships we ve made with charities and organisations who have been helping us improve the experience of those affected by cancer using NHS services. I hope that you will enjoy reading the updates and consider becoming more involved via the calls to action, which can be found in the boxes at the end of each article. Over the last few months we have been busy working with new and existing partners. I hope you will agree that the projects with the arts and faith communities are both innovative and exciting. We hope you will get as involved as you can. As always we would like as many people as possible to have access to this newsletter, so please do feel free to distribute it to people who may find it useful. We are really interested in featuring work from Trusts and other organisations that are delivering high quality cancer patient services. If your Trust would like to be featured in a future issue please contact Claire Elshaw on: claire.elshaw@ncat.nhs.uk Paula Lloyd Knight Associate Director, Patient Experience Paula Lloyd Knight, Associate Director for Patient Experience (pictured to the left). Dennise Friday PA to the Assistant Director for Patient Experience. Suzi Chung, Equalities Project Manager. Claire Elshaw, Communications Coordinator. You can view updates on NCAT PE Team s work through our team website: www.cancerinfo.nhs.uk and our work with BME communities can be found via: www.bmecancervoice.co.uk Or follow some of our work through twitter @BMECancerVoice Publication Information Editors: Claire Elshaw and Paula Lloyd Knight Unless otherwise stated photography is by Claire Elshaw, Dennise Friday or Suzi Chung for the National Cancer Action Team. Anyone wishing to use any of this content elsewhere will require written permission from the Editor and NCAT. Contact the editor via email on: claire.elshaw@ncat.nhs.uk 2
Cancer and Faith Communities The National Cancer Action Team and RAFFA, are pleased to announce their Cancer & Faith Communities programme, which is part of the national Cancer does not discriminate campaign. The cancer & faith communities programme works with churches and faith communities across England to raise awareness and improve understanding of cancer. The programme includes awareness workshops, drop-in sessions, and the opportunity to train to become a local patient champion. The programme features a variety of events to cater to different needs. We are offering free one-off 90 minute workshops which provide participants with information on the early signs of breast, bowel, prostate, cervical and mouth cancer. Drop-in sessions can be requested by Churches and Faith groups. Individuals can also become a local champion after attending a short training course. Champions receive a handbook and resources once training has been completed. For further information about this initiative please visit: www.bmecancervoice.co.uk or http://www.raffa.org.uk/health-and-wellbeing Guests at a recent RAFFA Passing the Baton Health and Wellbeing event receiving cancer awareness bags. Photo provided by RAFFA The programme has been developed to work specifically with churches and faith communities, to help challenge some of the myths and barriers often held about cancer, and other long term conditions. The programme aims to: Help increase the levels of awareness of cancer and help earlier detection of cancer Increase knowledge and awareness of the national cancer screening programmes Provide information and support to people living with cancer and Provide information to men about prostate cancer, and healthier lifestyles If you would like copies of the posters and leaflets to put in your local church and faith groups, please contact Dennise Friday on: dennise.friday@ncat.nhs.uk If you would like to become a patient champion or know someone who would like more information, please contact Paula Lloyd Knight on paula.lloyd-knight@ncat.nhs.uk 3
Current Projects Update Children and Young People NCAT will be scoping the development of a children and young people s patient experience survey. Over the next few months, we will be contacting childrens leads to ascertain the current activity and previous surveys undertaken. This will enable us to start scoping out a comprehensive national children and young people s survey. We would be pleased to hear from people who have conducted surveys using mixed methodologies, aimed at children, young people and young adults. We would be especially pleased to hear feedback on the outcomes you have had from using various methods to engage with children and young people. health inequalities experienced by people from BME communities and how to access key health and social care services. This included discussion on the stigma attached to cancer within BME communities and how to reduce the risks of developing cancer. The first meeting took place on the 17th April 2012, 18 people attended the event and 7 survey forms where handed out and 2 completed forms returned. We will be pulling together a small working group to support the development of the survey. Please send copies of questionnaires and the reports to Paula Lloyd Knight at your earliest convenience. paula.lloyd-knight@ncat.nhs.uk National BME Cancer Voice Members recruitment Bristol Black Carers have been assisting the NCAT Patient Experience Team in recruiting members to the National BME Cancer Voice and also asking people from BME backgrounds to complete one of the surveys. The first event was held in a regeneration area of Bristol and took place in a newly refurbished Healthy Living Centre in Barton Hill, Bristol. The Adult Care Service Manager delivered a presentation on how to effectively address Photograph provided by Bristol Black Carers Patient Experience Interviews Some BME Cancer Voice members are taking part in an exciting project to capture their experiences of NHS cancer services on video. A cross section of patients and carers are currently being interviewed and these filmed discussions will be available on our NCAT youtube account. The videos are a good resource for both patients and Healthcare Professionals. Our NCAT PE Team youtube account can be accessed here: www.youtube.com/ncatpeteam The videos will be catalogued into discussion topics which can then be easily navigated. NCAT is keen to build this resource as there are very few videos depicting the experiences of cancer patients from black and ethnic minority communities. 4
Prosthesis Project NCAT, in partnership with Betterdays Cancer Care, will be looking into the experiences of BME Breast cancer patients who require a prosthesis. This work has come about due to a number of patients who have reported receiving inappropriately toned prostheses. We hope to work with the breast cancer nurse forum on this piece of work, which is currently still in its initial stages. We will keep you updated on the progress. TIN - Using the arts to raise awareness It was very useful being there as a number of people then approached us afterwards to discuss concerns and issues related to their or a family member s experience of cancer. NCAT would like to thank the Christie for their involvement in the play and those Trusts who have expressed an interest in hosting the play in the future. Champions for Change NCAT has commissioned BME Cancer Communities and Bright Ideas to deliver Champions of Change: Cancer Services a new Nottingham based service. This programme is aiming to improve NHS cancer services in Nottingham City for black and minority ethnic (BME) patients. The project is part of NCAT s Cancer does not discriminate campaign, which aims to raise awareness of the early signs and symptoms of cancer and provide a voice to people from BME communities affected by NCAT s Cancer does not discriminate campaign, is proud to support a new play by Garry A Morris. The play depicts the story of two women from Yorkshire, and their experiences of cancer, life and family relationships. The play was performed at the Lowry Theatre in Salford in June and featured a question and answer session at the end with the actors, the playwrite and cancer clinicians from the Christie Hospital. Dr Pete Mackereth, Clinical Lead for supportive care and smoking cessation at the Christie, wrote to the play s director, Olusola Oyeleye, afterwards to express his gratitude and experience of being involved. The very interactive Q & A sessions with the audiences clearly demonstrated the power of both the actors performances and the narrative to raise key issues. Photograph courtesy of Champions for Change A network of Champions, local people from visible and non-visible BME groups, have been recruited. Champions volunteer their time to provide their views and opinions on cancer services in Nottingham, as well as feeding into the National BME Cancer Voice. There are two types of Champion; Network Champions: people from BME groups with recent experience of using cancer services or being a carer for someone using cancer services, and Community Troupe Champions: people interested in cancer and carer issues who want to support others to put forward their views and promote the service within their community. 5
NCAT out and about NCAT s Patient Experience team has been heading out to local events to distribute copies of the latest health supplements. We have been helped in this by a wonderful group of volunteers from some of our partner organisations, including The Federation of Irish Societies and Roy Castle Lung Cancer Foundation. Whilst at the events, we have been making sure that valuable cancer awareness and screening information is directly in the hands of our target audiences. London Irish Rugby Match On the 14th April we headed over to the Reading and the Madejski Stadium for the London Irish versus Saracens rugby match. Over 3,000 copies of the Irish health supplement were given out to home and away supporters. We even had help distributing them from one of the London Irish mascots. Vaisakhi Festival The next weekend saw the team at the Vaisakhi festival in Birmingham. The festival was a fantastic, lively, colourful day and over 3,000 copies of the Asian health supplement were handed out from our stall. Photograph provided by the Federation of Irish Socities. St Patrick s Day Parade We launched the Irish health supplement at London s St Patrick s Day parade. With the help of the Federation of Irish Societies we handed out over 4,000 copies to those attending the festivities. All three events were really fantastic, good fun and very worthwhile. We would like to thank everyone involved. We will be at a range of other events throughout the summer. If you would like to volunteer to hand out supplements at an event near you please contact Claire Elshaw on: claire.elshaw@ncat.nhs.uk 6
NCAT Community Ambassadors - out and about Last month we told you about the great cancer awareness radio shows our community ambassadors have been hosting. However, their work does not end there. They also head out into the community to raise awareness of cancer, talk to people about their issues and concerns and help to open up cancer debates in their own communities. Independence Day Celebrations and the Ghana Independence Day celebrations as well as church and faith events. They have attended key cultural and community events such as Bangladeshi Photographs in this article provided by Spectrum Radio At events they spoke to people one to one and signposted them to further information where required. You can find out more about the events they have attended and listen to previous radio shows at: www.spectrumradio.net/ncat CERP needs you! Do you have any written content about projects you ve run with BME communities? Have you uploaded it to the Cancer and Ethnicity Research Portal yet? We re looking for more great content, it can be research papers, project outlines conference abstracts, posters and more! Go to www.cancerinfo.nhs.uk/cerp to find out more today.