Patient Information Forum Nov 2010 - Update Apologies for cancelling our October meeting (due to unforeseen circumstances). Our next meeting is on 14 December, 9:30am-12:30pm, Seminar Room 2, Cancer Centre, Belfast City Hospital. This meeting will include the review of the generic (all cancers) information pathway. RSVP to patientinformation@cancerni.net. It has been a busy few months in patient information since we last met! To try and keep everyone informed, I have given brief updates on various areas of the work. They are brief but plentiful in number! 1
1. Presentations to NICaN Board in September 2010 NI Scoping Study of Information and Support Needs key findings and recommendations were presented from Dr David Manning s report. The Board have asked me to work with the Trust Cancer Information Leads to identify what it would take to meet the recommendations. The report will be published on NICaN website (via www.cancerni.net/patientinformation). Guidance for HSC staff on the provision of information to people affected by cancer the Board approved this guidance and agreed that Trust Cancer Information Leads should champion its introduction in their Trust. Other patient information-related material presented to the Board included 1. Peer Review the NI report on the four cancer types peer reviewed this year has been published for breast, bowel, gynae. and lung. 2. Cancer Service Framework NICaN Board discussed the need to avoid standards being out of date by the time the framework is published. 2
2. Cancer lead nurses group September 2010 We acknowledged the wide range of work areas in patient information. The year s workplan was reviewed some objectives are going to be late but no areas of significant concern were noted. The Leads were reminded of the need to develop improvement plans as part of the GAIN-funded regional audit. We considered a range of options for information pathways implementation. Our discussion included a need to suit local staffing, skills and infrastructure. We considered encouraging patient empowerment to support them in identifying and meeting more of their own their own needs (including use of the Information For You mini-booklet developed recently). One concern about focusing on empowering patients at the moment (given our work in raising awareness among staff about information provision) is that it could muddy the waters for staff understanding clearly their responsibility for this area of care. The decision was made to maintain the current focus on provision by specialist nurses. Sally noted a focus in Belfast on outpatient nurses. 3. Pilots Information provision recording form SHSCT nurses have been piloting this and have provided feedback to inform its design and to suggest how it needs to be put in place. This has been written into a draft report. The report will be discussed by Trust Cancer Information Leads at their December meeting. Chemotherapy introductory information SEHSCT are piloting a brief booklet for people starting chemotherapy. Patients will be asked for their feedback, starting in December. Through the pilot, we aim to offer a template and to work with each Trust in adapting it for their own use. Lung cancer information folder BHSCT nurse specialists and social workers have been offering this to patients and seeking their feedback. This has been written into a draft report. The report will be discussed by Trust Cancer Information Leads at their December meeting. 3
4. Training Summer workshops Providing information to people affected by cancer we had to increase from two to four workshops to meet demand. Given that we turned bookings away, and had last minute cancellations and no-shows, we may need to consider in future charging for no-shows or cancellations within e.g. two days. Participants are asked to rate their understanding of key elements before and after the workshop each learning objective has shown an overall increase in understanding. SHSCT have asked for the workshop to be delivered to its staff in the new year. This will include a bolt-on to familiarise staff with information pathways and recording information provision. Belfast HSC Trust have established a Pathways Implementation Group. The group s work includes a clinic for staff who are developing information. We have drafted a tool to support staff who are developing information. NHSCT have held a staff workshop on patient information for nurses including a presentation about information pathways. I have presented to SHSCT nurses about information pathways. Plain English training was held for eight Readers Panel members and ten BHSCT staff in October and November. In December, I will be presenting on our prostate cancer information work at the Macmillan Professionals Study Day on Urological cancers. Again, Margaret McManus and I are scheduled for QUB teaching/presentations to nurses studying specialist practice. A health service masterclass on learning technologies was held recently. This highlighted the need to blend learning support for staff, to include the likes of e-learning where appropriate and where possible. A group of us from BHSCT, Queens University Belfast and NICaN team are looking at education for staff about providing patient information. Macmillan Cancer Support held a conference for information professionals in November 2010. Margaret McManus, Angela Small, Karen Kelly and I attended. Talks included Value based decision making, and information that makes a difference. Conference presentations and materials will be made available on Macmillan Learnzone (http://learnzone.macmillan.org.uk - you can become a member whether you are a Macmillan professional or not). 4
5. Development and review of information materials currently underway Metastatic Spinal Cord Compression information for i. people at risk (symptoms awareness) and ii. people diagnosed with the condition. The remit has recently extended to GP awareness of symptoms etc. too. Pathways and resources currently in development - Prostate, Ovarian, Lymphoma, Myeloma, Oesophageal cancer information pathways. - Information being consulted on until end of November for Surgery for Ovarian Mass and Transurethral Resection of Prostate. - Other information under development includes (i) Follow Up after prostate cancer treatments, (ii) prostate Brachytherapy, (iii) TRUS-guided biopsy (prostate), (iv) Debulking surgery for suspected ovarian cancer. The following are currently being reviewed generic*, breast and lung cancer information pathways. - Generic information pathway: workshop being held in Belfast on 10 December (afternoon) to review this. Attendance and/or email comments are welcome! - Lung cancer information pathway: workshop being held in Antrim on 16 December (morning) to review this. Attendance and/or email comments are welcome! - NICaN Breast Cancer Network have been asked to review the breast cancer information pathway. Contact me if you are interested in contributing. If you would like to get involved or hear any more about the items in bold above, please contact me. Email: patientinformation@cancerni.net. 5
6. Information Prescriptions and other work in the rest of UK The National Cancer Action Team (Dept. of Health in England) and Macmillan Cancer Support set up a four-nation discussion earlier this month to share learning and experiences of patient information among the four nations. I attended this meeting to represent N.Ireland. Each nation is taking a different approach. We agreed the need to share resources where possible and have arranged to teleconference every quarter to aid this. One item I asked about was the possibility of us being able to use information materials that are on the English information prescriptions website. I will keep you informed about this. 7. Patient information HSC-wide (i.e. wider than cancer) Awareness at executive level that information has an important part to play in health and social care is particularly valuable in the current financial climate. DHSSPS are developing high level guidance for HSC on care for people with long term conditions. The guidance is not yet completed or published. Back in April, I worked with the Patient & Client Council (in my role as NI rep for Patient Information Forum UK) to co-host a patient information workshop for senior staff in HSC. The report from the workshop was able to be used as the main source of patient information recommendations for the draft DHSSPS guidance. 8. Recent events promoted on NICaN website: Brain Tumours Information Day (Brainwaves) Laryngectomy conference (UCF/NALC) Lymphoma Awareness Day conference (UCF) Lymphoedema awareness study day for staff (LNNI) Lombardi Movement-based Workshop (MSIC/BHSCT) October = Breast Cancer Awareness month November = Lung Cancer Awareness and Mouth Cancer Action month If you need events like this put on our website, please send to press@cancerni.net. Nb. We are not able to publicise events where the primary purpose is fundraising. 6
8. Individuals with responsibility for patient information and user issues The Manual of Cancer Standards (against which some cancer services were Peer Reviewed this year) includes the standard that each multi-disciplinary team (MDT) and each (NICaN) network group has a nominated person responsible for patient information and user issues. Our teams and NICaN groups are currently working to identify individuals to take on this role. The Manual stipulates that it must be a staff member rather than a PPI member. 9. Macmillan Information Service developments The Macmillan Information Service at the Ulster Hospital for more information contact Karen.kelly@setrust.hscni.net tel 02890 553246. The Macmillan Information Service, the Royal Hospitals was officially launched on 20 October. For more information contact cancerinfo.royal@belfasttrust.hscni.net tel 02890 663022. 10. Patient Information Forum planning for next year We will consider at our December meeting the value of the forum, the purpose, frequency and venue for meetings. If you aren t able to attend, but want to make any suggestions, please email me. Our next meeting is on 14 December, 9:30am-12:30pm, Seminar Room 2, Cancer Centre, Belfast City Hospital. This meeting will include the review of the generic (all cancers) information pathway. RSVP to patientinformation@cancerni.net. 7