LGBT Project Quarterly Update: April to July 2016 Basics Project title
LGBT Cancer Support Alliance
Project start date
Ongoing since 2014; Macmillan funding from 26th October 2015
Project plan created and shared? Personnel
Yes
Project lead
Ben Heyworth (Macmillan LGBT Strategy Manager)
Project supporters (e.g. Lawrence Roberts (Macmillan LGBT Project Worker), LGBT Cancer Support team members, Alliance (Project Group) steering group Note: New members in this quarter appear in blue text. members, management lead, Tobacco Control Alcohol, Drugs and Allan Gregory clinical lead) Manager Tobacco Division | Health and Wellbeing Directorate, Public Health England Andrew Gilliver
Community Involvement Manager
LGBT Foundation
Angie Bunn
Development, Training and LGBT Officer
Disability Solutions Staffordshire
Ben Heyworth (chair)
Macmillan LGBT Strategy Manager
The Christie
Brian Hixson
Patient/Carer Representative
Claudia Carvell
Women’s Programme Coordinator
LGBT Foundation
Jo Coulson
Macmillan LGBT Scoping Lead
Disability Solutions Staffordshire
John Lancaster
Patient Representative
Helen Johnson
Prostate Cancer CNS
The Christie NHS Trust
Joy Hall
Researcher
Birmingham City University
Julie Fish
Researcher
DeMontfort University
Katie Merrick
Service Development Manager North West
British Lung Foundation
Kaz Molloy
Founder
Womb Cancer Support UK
Laurence Webb
Pride in Practise Coordinator
LGBT Foundation
LGBT Project Quarterly Update: April to July 2016 Lawrence Roberts (Coordinator)
Macmillan LGBT Project Worker
The Christie/LGBT Foundation
Louie Stafford
Trans Programme
LGBT Foundation
Peter Mackereth/Charlotte Finchett
Clinical Lead Complementary Therapies
The Christie
Martin Wells
Patient/Carer Representative
Out With Prostate Cancer
Maurice Nagington
Researcher
University of Manchester
Katherine McGuirk
Quality Improvement Manager (Cancer)
Greater Manchester, Lancashire and Cumbria Strategic Clinical Networks
Melody Holt
Tobacco Control Project Manager
Roy Castle Foundation
Natalie Williams
Researcher
Cancer Research UK
Nick Hulbert-Williams
Professor
University of Chester
Paul Martin
Director
LGBT Foundation
Paula Hewitt
Change Delivery Senior Officer
Prostate Cancer UK
Philip Bryce
Head and Neck Clinical Nurse Specialist
Central Manchester University Hospitals NHS Foundation Trust
Polly Sangar
Counsellor
Relate
Rebecca Mellor
Public Health Manager
Public Health, Policy & Performance, Wirral Borough Council
Richard Hunt
Associate Macmillan Development Manager – North West
Macmillan
Sean Ralph
Radiographer
Clatterbridge Cancer Centre
Stephanie Mace
Researcher
University of Manchester
Tara Hewitt
Equality, Diversity and Inclusion Lead
University Hospitals South Manchester
Val Bayliss-Brideaux
Senior Engagement Manager
Greater Manchester CCGS
LGBT Project Quarterly Update: April to July 2016 Recruitment (if relevant) Recruitment Complete. arrangements/progress Strategy Manager in post from 26/10/2015 Project Worker in post from 07/12/2015.
Anticipated Outcomes: Outputs to date: Improvements to â—? Output via the LGBT Cancer Support Alliance Twitter feed continues to be patient information managed day-to-day by LR. Number of followers has seen an increase of resources and support 200 in this quarter (note: increase same as first quarter). services that are Follower breakdown (approximate): sensitive to the needs of the LGBT 200 health or care organisations community will ensure that LGBT patients are 200 health or care professionals both visible and have 200 community members (some likely to be affected by cancer). access to information that is tailored and Total: 600 followers appropriate to their specific needs. Follower engagement with posts is good, with our content and messages scoring good to high on re-sharing rates by followers (see example post below).
â—? Twitter continues to be an effective and immediate way to share information on events, and, using hashtags, group together tweets under
LGBT Project Quarterly Update: April to July 2016 themes/join other debates. The Alliance now has a Storify account to bring together event tweets. A good example was the Cancer Doesn’t Do Labels event, where participants were urged to use the #CancerDoesntDoLabels hashtag. This increased visibility for the event, and resulted in a new academic contact getting in touch about future work. the Storify for this event can be viewed here. ● Partner organisations continue to share and support our campaigns on social media (e.g. The Christie, LGBT Foundation, Greater Manchester CCGs). ●An LGBT Cancer Support Alliance Membership Directory has been produced and printed, for distribution at events and circulation online throughout the rest of the year. The directory contains bios and information about the involvement of each Alliance member. ● Content on the Alliance Youtube channel continues to be managed by member Martin Wells. Two event summary videos have been uploaded this quarter, however existing content from the first quarter has continued to be shared widely. Future content for the channel has been filmed and is currently being edited for release in the next quarter (eg. Cancer Doesn’t Do Labels presentations).
Increases in awareness of the signs and symptoms of cancer, early diagnosis, access to screening, and where to find help for people living with and beyond cancer amongst the LGBT community will, in turn, contribute to better clinical outcomes.
● Resources and advice given to Macmillan Bus North colleagues attending an International Day Against Homophobia, Biphobia and Transphobia event themed around ‘LGBT Health and Wellbeing’ in Carlisle on 17th May. 77 people from the LGBT community visited the Macmillan stand and over 40 hand-outs were distributed, including LGBT-specific cancer information.
LGBT project represented at a “Digital Pride” Event by BH and LR. The event in Central London, on 30th April, was attended by around 200250 people from the LGBT community and other major charities (Macmillan were the only cancer charity to take part). 50 people visited the stand during the day, and a Twitter post from Macmillan about the event was liked over 60 times and shared 30 times. At the stand there were discussions about LGBT cancer awareness with younger people aged 18-30 and discussions about inequalities with several older attendees affected by cancer, who were also given information about the LGBT Taskforce and Macmillan’s LGBT work. At least one new taskforce member was recruited as a result of this event. This event also proved to be useful for networking with professionals at other stands, in particular colleagues from Public Health England, Stonewall and Alzheimer’s Society.
LGBT Project Quarterly Update: April to July 2016
●A session with the ‘Older and Bolder’ group at LGBT Foundation on 25th May was attended by a diverse group of 15 gay and bisexual men over 50. The two hour session led by LR featured interactive activities and Q&As with Alliance members who are affected by cancer, covering topics such as cancer inequalities for LGBT people and information around access to screening. After the session information and resources were shared on the group’s Facebook page, to reach group members who were unable to attend on the day. “Informative and interactive, the group really enjoyed and benefited from your session” Carl – Group Leader LR’s video summary of the event (Youtube Link) ● The project group’s sexual orientation and trans status monitoring workstream continues to highlight and encourage the use of monitoring questions across connected healthcare organisations and in research studies. Over this quarter the group have developed an aspirational strategy around influencing commissioners at the point of service renewal, making sure that an LGBT equality target is written into service objectives, thus requiring monitoring. At the Christie there have been discussions with E+D and the Project Management Office around how to improve responses to the sexual orientation monitoring question on the Outpatients registration form, and further training for administrative and clerical staff is to be planned over the next quarter.
Discussions continue in the work-stream around Sexual Dysfunction. This sub-group are looking to take forward existing work around the “Prostate Postcards” and continue to gather evidence to support new projects around improving access to information and support following treatment around sexual dysfunction.
The “Postcards from the Edge” academic paper reflecting on the cocreation of the Prostate Cancer Postcards with patients and the potential impact of the project has now been published in the Journal of Sexual Therapies: Cancer and Sex (special edition).
LGBT Project Quarterly Update: April to July 2016
The specific work-stream to look at services for trans patients has continued to link in with the “Trans Programme” at LGBT Foundation. LR and BH appeared on panel around screening at the first TransMCR event on 14th May. A ‘study day’ event Cancer Doesn’t Do Labels organised and delivered by this sub-group is covered later on in the report.
Members in LGBT, Public Health and cancer work-stream have been writing the “Proud 2B Smokefree” report, which looks at the prevalence of smoking in the LGBT community, smoking cessation and knowledge of the links to different cancers within the LGBT community. A separate research article for the BJN has been submitted for review.
BH and LR involved with developing, facilitating and evaluating a two further LGBT Taskforce engagement events in collaboration with Macmillan Inclusion UKO and SWARM (a creative collaboration company). The wider project group supported recruitment for both events and some members attended on the day. The taskforce event on 28th April in Birmingham brought together 20 LGBT people affected by cancer with an aim to establish a fuller picture of the issues faced that are unique to this community. The group built on areas of focus agreed at the first event; educating health professionals, sex, body image, emotional and psychological aspects, family, friends and carers, financial issues, LGBT peer support and LGBT specific resources.
Through supporting academic research and collating the evidence base, we anticipate the Alliance will be able to guide future work around LGBT and Cancer, and signpost academics to existing literature.
The taskforce event on 18th July in London brought together people affected by cancer, Macmillan staff and staff from partner LGBT organisations to hear issues and develop solutions in key areas of educating professionals, combatting homophobia, biphobia and transphobia in support groups and improving support and information for LGBT patients. The day was attended by around 50 people, initial feedback from attendees was positive and reporting is currently being written up by Macmillan Inclusion team ahead of further focus groups around Macmillan’s written information and online community.
The project group continued involvement with researchers in the area of LGBT people and cancer, with around 6 members currently completing studies. Discussions over the ways in which the Alliance can support the establishment of a ‘researcher’s network’ are ongoing, and will have more of a focus in Alliance meetings during the next quarter.
Updates from supported research studies in this quarter: The project group published a press release in support of Joy Hall’s study around lesbian and bisexual women’s relationships and cancer. Feedback was also given on a new website set up to promote the project. Interviews for this study have now been completed and writing up will begin in the
LGBT Project Quarterly Update: April to July 2016 next quarter. Natalie Williams submitted an Alliance-supported dissertation which captured trans women’s experiences of prostate cancer. Natalie was invited to present the findings of this dissertation at the Cancer Doesn’t Do Labels study event on 5th July. Nick Hulbert-Williams from the University of Chester submitted for review his analysis of the national Cancer Patient Experience Survey in relation to LGBT people affected by cancer. Julie Fish published a paper in the European Journal of Cancer Care around ‘minority stress’ in relation to LGB cancer inequalities, and a paper in a special edition of the Journal of Research in Nursing discussing a knowledge exchange project led with Macmillan and Breast Cancer Care. Sean Ralph published a paper in Radiography titled ‘Improving the health care experiences of lesbian, gay, bisexual and trans patients’. Maurice Nagington’s study into the experiences of LGB patients has been completing interviewing over this quarter, and will report back initial videos and findings in the next quarter.
Greater awareness amongst key stakeholders involved in commissioning and delivering cancer services will ensure that the specific needs of the LGBT community are embedded into future strategic planning and commissioning arrangements across the region.
Improvements made to representation on the project group, for example E+D representation (Tara Hewitt - UHSM) and commissioning representation (Val Bayliss-Brideaux – GM CCG), which is helping to increase the scope of input and the influence of the group. Attendance and involvement from people affected by cancer is consistent.
Discussions have been active and ongoing around BME representation, involving lesbian and bisexual women affected by cancer and clinical representation.
Cancer Doesn’t Do Labels study day at UHSM on 5th July was attended by around 50 healthcare professionals. The event aimed to introduce and move-on the discourse around trans people and cancer, whilst raising visibility, being held at a major NHS site UHSM. Presentations included a welcome and discussion of inequalities from Dr John Crampton, a ‘Trans 101’ session led by the Trans Programme at LGBT Foundation and Action For Trans Health (pictured below), a session on ‘Intersectionality’ led by Tara Hewitt, E+D Lead at UHSM, and a session on trans women’s experiences of prostate cancer led by researcher Natalie Williams. Interactive sessions were led on ‘the cancer journey’ and ‘improving services for trans patients’, and attendees were asked to complete a pledge/action form at the end of the day. The range of pledges submitted by delegates at the end of the event showed good engagement with our key messages, and delegates gave a 94% “likelihood” scoring to sharing learning from the day with colleagues, meaning the day will have a reach beyond those who were in the room.
LGBT Project Quarterly Update: April to July 2016
“A thoroughly interesting and knowledge-filled day. Some very good speakers – we felt your passion!” Conference Delegate After agreement in the first quarter by all Greater Manchester Macmillan Information centres to take-up an hour long LGBT awareness session, LR completed delivery across this quarter. 30 staff from Information Centres across Manchester took part in these sessions. Other staff members who dropped into sessions included an Assistant in Equality and Diversity from UHSM, 10 Clinical Leads at Beechwood Cancer Care Centre, 12 Macmillan Wellbeing Volunteers, 4 Macmillan Wellbeing Counselling Volunteers, 6 Macmillan Nurses, 1 Palliative Care Support Worker from Macmillan Oldham 1-to-1, 1 Volunteer Manager for a local Voluntary Organisation. A further 8 Macmillan Information Managers attended a project debrief at the beginning of July. This project has so-far delivered awareness and training to 74 people across a wide geographical area.
Each session featured the discussion of first-hand experiences from LGBT people affected by cancer (used to explore the facts around inequalities for LGBT cancer patients), a discussion around trans patients, and simple/practical ways to make services more inclusive (eg. getting LGBT leaflets ‘out of the drawer’ and on display, use of inclusive language).
LGBT Project Quarterly Update: April to July 2016 Follow up actions from these sessions include the creation of an LGBT specific poster by Macmillan which can be displayed in the centres, and looking at how this network can be kept ‘in touch’, plus how the training could be rolled out beyond Greater Manchester and to mobile teams.
Improvements to the experience of LGBT patients at all stages of the cancer pathway, including the experience of patients living with and beyond cancer, will contribute to creating a service where positive LGBT patient feedback illustrates a reduction in real or perceived discrimination and a more person-centred service.
Next steps:
•A session on LGBT people and care at the end of life was delivered to 25 staff from Wigan and Leigh Hospice by LR and Martin Wells on 8th June. The session was attended by 13 nurses, 3 doctors, 5 AHPs and 4 other care workers. Feedback from the session was very positive, and staff said they would be able to use the learning from the session straight away with patients. Some staff requested a return visit for further training, LR to check-in with the hospice in the next quarter to offer further advice and support.
As part of a Carers Week LGBT information and resources were included as part of a display in the Glass Corridor at the Christie. Links to an LGBT survey written by Carer’s UK and LGBT Foundation were shared at the Christie and online.
• Exploring a collaboration with academics at Manchester Medical School to educate medical students around LGBT people and cancer. • Establish a Facebook page to broaden and extend the reach of news and updates from the project group. • Set up a researcher’s meet-up, to facilitate discussion around strengthening and establishing a network of academics who are completing studies on LGBT people and cancer. • Develop a study day for junior doctors around LGBT and Cancer. • Closer collaboration with E+D and the Project Management Office at The
LGBT Project Quarterly Update: April to July 2016 Christie to improve LGBT visibility, patient monitoring and staff training. • LGBT projects to be featured as part of Survivorship Network’s ‘Coming Together’ event at The Christie at the end of the year. • Raising the profile of cancer at Manchester Pride at the end of August, and exploring further partnership working with other LGBT charities (eg. Stonewall). • Publication and distribution of Proud2BSmokefree report. • Explore partnership working with the Vanguard around Public Health and Education • Develop membership of the LGBT Cancer Support Alliance (BAME, Primary Care, lesbian and bisexual women affected by cancer) and continue to develop outputs for the group within each work-stream. • Showcase the work of LGBT project group and introduce LGBT issues at a number of autumn conferences: September: NHS Health and Care Innovation Expo (Manchester) October: World Lung Health Conference (Liverpool) November: Macmillan Professionals Conference (Birmingham), UKONs Conference (Brighton). • Deliver an event which addresses the needs of lesbian and bisexual women affected by cancer. • Explore the ways in which learning from LR’s sessions with Macmillan Information Centres can be extended to staff outside of Greater Manchester. •BH to advise eHNA team at Macmillan UKO on the introduction of sexual orientation monitoring. Monitor impact of integrating sexual orientation into the eHNA project. Explore opportunities to embed monitoring within other Macmillan projects. e.g. vMDT Project Additional reporting
LGBT Cancer Support Workstream briefing LGBT Cancer Support Cancer Doesn't Do Alliance Minutes 24 May 2016.doc document.pdf Alliance Member Profiles Labels 2016.pdf Debrief.docx
LGBT Macmillan Information Centres Report June 2016.doc