LGBT Cancer Support Alliance Project Report 2017 by LGBT Cancer Support Alliance

LGBT Cancer Support Alliance Project Report (2017)

Contents

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Contents

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Acknowledgements

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Executive Summary

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Introduction

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Glossary

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Background

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National Developments

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The Alliance: 1. Rationale, 2. Aims, 3. Membership

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Project Outputs

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LGBT Project Worker and LGBT Strategy Manager Reflections

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2018 - Next Steps

Acknowledgements We would like to thank the dedicated patient and carer representatives who are a crucial part of the LGBT Cancer Support Alliance’s meetings and activity. Your experience, knowledge and advice was of considerable value and importance to this work.

Thank you also to all of the professionals working in the field who have shared their ideas and support, the spirit of co-production has reached beyond our group in Greater Manchester in 2017 to involve the expertise and enthusiasm of colleagues from across the UK and beyond. Thanks in particular to staff at Macmillan Inclusion who have embraced the aims of our project and have worked collaboratively with us to further the aims of the project nationally.

We could not have achieved so much in 2017 without so many giving up time and sharing our projects and campaigns. We offer our extended thanks to those individuals who followed and shared our updates via social media – we couldn’t have got the word out without you.

Executive Summary

2017 was the third year of the existence of the LGBT Cancer Support Alliance, which was originally set up in 2015 to improve care and support for LGBT people with a cancer diagnosis in Manchester. This was the second and final year in which the LGBT Cancer Support Alliance was supported by two newly created Macmillan posts: LGBT Strategy Manager and LGBT Project Worker.

As well as project meetings, which are the foundation of the groupâ&#x20AC;&#x2122;s planning and decision making, the group agreed in 2017 that communication via a mailing list and emails between members could also serve the same function for those who could not attend meetings in person. The Alliance also maintained its public-facing outputs in 2017 such as social media accounts, reporting and space at LGBT events such as Manchester Pride.

Membership in 2017 continued to made-up of patients, researchers and professionals in the field. Additional members in 2017 included workers from the screening programmes in Manchester and new patient representatives.

The Allianceâ&#x20AC;&#x2122;s aims remained consistent with 2016, with the main outputs in each area being:

Aim one: To improve services and support available to members of the LGBT community who have a cancer diagnosis, are living beyond a cancer diagnosis, or caring for someone with a cancer diagnosis, to the benefit of all.

Main outcomes: Screening promotion at Manchester Pride and Sparkle Weekend reaching 250 community members with targeting information and support, the piloting of a bespoke evidence-based programme of training for healthcare professionals elements of which have now reached around 1000 professionals.

Aim two: To influence the public health agenda in order to promote healthy lifestyles, improve the general health of the LGBT community where lifestyle choices may impact on the prevalence of cancer, awareness of the signs and symptoms of cancer, and early diagnosis.

Main outcomes: Launch and release of the Proud2BSmokefree Report, incorporation of recommendations from report in Greater Manchester Tobacco Control Plan.

Aim three: Advocate for the reduction of health inequalities for the LGBT community

Main outcomes: Advocacy for sexual orientation, gender identity and trans status monitoring, ensuring that monitoring is embedded in new and existing projects (eg. eHNA, vMDT)

Aim four: To support academic research and learning in relation to the above.

Main outcomes: The Alliance published its own research on smoking and the LGBT community as well as supporting and promoting seven research studies.

In conclusion, 2017 was a year that the Alliance not only grew in scope and membership but became part of taking the conversation around LGBT people and cancer from local to national, reaching more people from around the country with its aims and messages than ever before. By the end of the year the Alliance can report a series of significant outcomes against its major objectives, but its members also wanted to emphasise its importance as a forum which gives confidence to, strengthens and supports individual members to undertake their own work at their respective organisations.

An ambitious set of objectives for 2018 shows both the confidence and momentum of the group, as well as the amount of work that there is still to do in this area. Despite personnel 5

changes that will affect the admin and strategy planning for the group it is hoped that Alliance members will continue to come together to work on projects against the existing aims.

Director of Population Health and Wellbeing (Manchester Health and Care Commissioning) David Reagan introduces the Proud2Bsmokefree Report at the launch event at the Peoples History Museum - January 2017

Introduction

The term ‘LGBT’ refers to lesbian, gay, bisexual and trans people. New research from Public Health England has shown that in Greater Manchester around 3.6% of the population are thought to be LGB, one of the highest concentrations of LGB people in the country along with London and Brighton (Producing Modelled Estimates of the Size of the LGB Population in England, PHE, 2017).

Results suggested a total of 1,358,848 LGB people living across England, although if people who responded ‘rather not say’ to surveys were included in the data, this figure would rise to more than three million.

A GIRES and Home Office study in 2012 estimated the number of trans people in the UK to be between 300,000 and 500,000, however recent evidence and an increase in referrals to gender identity services in the last five years suggest the actual number of trans people in the UK is likely to be significantly higher.

2017 was the third year of the existence of the LGBT Cancer Support Alliance, which was originally set up in 2015 to improve care and support for LGBT people with a cancer diagnosis in Manchester.

This was the second and final year in which the LGBT Cancer Support Alliance was supported by two newly created Macmillan posts: LGBT Strategy Manager and LGBT Project Worker.

As well as project meetings and communication via a mailing list between members the Alliance maintains public-facing outputs such as social media accounts, reporting and space at LGBT events such as Manchester Pride.

Glossary Sexual orientation: terms and descriptions Sexual orientation: A personâ&#x20AC;&#x2122;s sexual, romantic and/or emotional attraction to another person.

Bisexual: Someone who is sexually, romantically or emotionally attracted to people of more than one gender.

Gay: Someone who is sexually, romantically or emotionally attracted to people of the same gender.

Heterosexual/Straight: Someone who is sexually, romantically or emotionally attracted to people of the opposite gender.

Lesbian: A woman who is sexually, romantically or emotionally attracted to other women.

Sexual orientation monitoring: Asking someone who they are romantically, emotionally and sexually attracted to. This should be similar to asking someone if they are married or their age; it is not a question about a patientâ&#x20AC;&#x2122;s sex life. The only reason sexual orientation seems different is the potential embarrassment, unfamiliarity or hostility towards LGB people that exists.[1]

Gender identity: terms and descriptions Assigned Gender: The gender a person is given at birth and what gets written on their birth certificate when they are a baby.

Gender identity: A personal concept of oneself as either male, female, both or neither. It can be the same or different to the gender they were assigned at birth. It also may not fit with a binary (male/female) gender system.

Trans (or transgender): An umbrella term to refer to all people who do not identify with their assigned gender at birth and/or the binary (male and female) gender system.

Trans women: Those who were assigned male at birth, but who identify as women.

Trans men: Those who were assigned female at birth, but who identify as men.

Non-binary people: Those with a gender identity that is not exclusively masculine or feminine and may be comprised of elements of either, both or neither.

Transsexual: This term typically refers to the subset of transgender people who have hormone therapies or gender reassignment surgeries to change their gender from that they were assigned at birth.

Cisgender: A term used by some to describe someone who is not trans. ‘Cis’ is a Latin prefix meaning ‘on the same side’ and is used to describe someone who identifies with the gender they were assigned at birth.

Gender identity monitoring: Asking someone about what gender term or terms most suit them. People often see gender as binary, yet an increasing number of people do not feel these terms fit with their identity and they may identify as non-binary or in a variety of other ways.

Trans status monitoring: Asking someone if they feel their gender identify differs from that which they were assigned at birth. This should only be collected at present where there is no direct link back to respondents’ names or personal identifiable information, due to the additional confidentiality included in the Gender Recognition Act 2004.

Background There is an interaction between a personâ&#x20AC;&#x2122;s sexual orientation and/or trans status and their likelihood of receiving equal or appropriate care, which leads to health inequalities within this population group when compared to the general population. Equally, the impact of discrimination, either real or perceived, by healthcare professionals can act as a deterrent preventing LGBT people from accessing services. In cancer, this can influence the likelihood of early diagnosis, attendance at check-ups, follow-up or screenings, and it is also often associated with difficulties in talking about gender, sex and sexuality with healthcare professionals. In a 2014 survey, the LGBT Cancer Support Alliance found that 33% of LGBT people felt unable to talk to healthcare professionals about sex and sexuality. This is a particular problem for individuals who may be living with the consequences of cancer treatment.

There are significant limits to the amount of robust data that is available on LGBT people in general, and specifically LGBT people with cancer. Despite improving overall population monitoring, it is not currently known how many LGBT people are living with cancer in the UK, and it is not currently known how many LGBT in the UK die from cancer. However various UK and international agencies including Macmillan (Macmillan LGBT Emerging Picture, 2013â&#x20AC;?), Stonewall, the American Cancer Society (Sexual orientation and cancer, 2013), project work by the LGBT Cancer Support Alliance and focus groups by the Macmillan LGBT Taskforce have painted a picture of the specific needs of the LGBT community, and a new NHS Information Standard on Sexual Orientation introduced in 2017 will encourage more services to monitor their LGB cancer patients, though there is still no system wide monitoring of trans patients.

Cancer-related findings from the World Health Organisation include: Lesbian women appear to possess more risk factors for breast cancer including null parity (having no children), alcohol dependency and cigarette use, menopausal HRT, and obesity. Lesbian and bisexual women are more likely to be diagnosed with breast cancer than heterosexual women, despite similar use of screening mammograms by study participants of any sexual

orientation. Amongst lesbians, there are major lifestyle risk factors for uterine cancer, ovarian cancer, cancer of the endometrium, cervix, head and neck, colon and lung.

Among gay men, greater use of alcohol and tobacco when compared to the heterosexual population raises the risk for more than a dozen types of cancer. A 2004 survey found 33% of gay men were smokers, far higher than the tobacco use rate for men in general, which was 21%. (Tang, H, Greenwood, GL, Cowling, DW, Lloyd, JC, Roeseler, AG and Bal, DG (2004) Cigarette smoking among lesbians, gays, and bisexuals: How serious a problem? Cancer Causes and Control, 15(8): 797â&#x20AC;&#x201C;803.) The LGBT Cancer Support Alliance published a Proud2BSmokefree Report in early 2017 which detailed research with members of the LGBT community around their smoking habits and recommendations for smoking cessation services on how to better cater for the needs of this population group.

The LGBT Cancer Support Alliance asked 203 gay or bisexual men at Manchester PRIDE 2014 about their experiences of using health services. 13% (27) of responders indicated that they had experienced some form of discrimination from a healthcare professional.

For trans communities, access to appropriate treatment can be particularly challenging, as services are often gendered and literature and imagery assumes that all patients will be cisgender (not trans).

(The LGB&T Public Health Outcomes Framework Companion Document, Public Health England http://www.lgf.org.uk/policy-research/the-lgbt-public-health-outcomes-frameworkcompaniondocument/)

LGBT people with cancer are less likely than heterosexual and cisgender people to say that they believe that hospital staff always did everything they could to control their pain.

(Cancer Patient Experience Survey 2012-2013, Department of Health, http://www.qualityhealth.co.uk/resources/surveys/national-cancer-experience-survey/2013-national-cancer-

patient-experience-survey-reports/301-2013-national-cancer-patientexperience-surveyprogramme-national-report/file)

Importantly sexuality and gender concerns cut across diverse cultures and ethnicities, with individuals living with cancer often isolated and less likely to access services. The intersection between a personâ&#x20AC;&#x2122;s identities must be considered, a concept referred to as â&#x20AC;&#x2DC;intersectionalityâ&#x20AC;&#x2122;. For example, a lesbian Muslim women experiencing symptoms may encounter discrimination in her religious community and therefore may not access services in a timely fashion or have their needs met holistically when they do.

National developments More and more patients were finding ways to connect with their peers. One example of an LGBT individual who had particular success was Dean Eastmond, who not only ran a selfpublished cancer blog but reached a wider audience nationally with pieces in the Guardian, Teen Vogue and the Independent about a variety of subjects relating to his cancer experience including frank discussion of discrimination, masculinity and hair loss. In Greater Manchester the Cancer Champions social movement aimed to sign up 20,000 community members to use their own experience, knowledge and passion to support those at risk of developing cancer and those recently diagnosed with the disease.

Discussions around the rights of LGBT people continued to be a high profile subject both in society and the media in 2017. The introduction of a sexual orientation monitoring standard by NHS England made the front pages, with the LGBT Foundation coordinating an effective campaign to mitigate the misinformation propagated in some newspapers. The national debate around trans identities also stepped up a level, appearing on the front pages of more 14

newspapers than ever, with trans activists and allies using social media as a forum to counter false claims and scaremongering.

Successes such as LGBT people gaining the right to equal marriage in Australia were countered by the continued media coverage of high levels of hate crimes against LGBT people, with Stonewall reporting that more than half of gay men in Britain would not feel comfortable holding hands with their partner in public (BBC News, http://www.bbc.co.uk/news/uk-41179976)

Findings from other recent reporting by Stonewall on the unhealthy attitudes of health and social care staff (Unhealthy Attitudes, Stonewall, 2015) and Marie Curie on discrimination in end of life care (Hiding Who I am, Marie Curie, 2016) seemed still to resonate with healthcare staff and patients. If anything there was a sense that there is still much more work to do.

The Alliance 1. Rationale

The LGBT Cancer Support Alliance was established in recognition of the need to work across organisational boundaries. Its goals are to improve services and support available to members of the LGBT community in Greater Manchester who have a cancer diagnosis, are living beyond a cancer diagnosis, or caring for someone with a cancer diagnosis, to the benefit of all.

Bi-monthly meetings, of which six were held at different locations across Greater Manchester in 2017, are at the core of the Allianceâ&#x20AC;&#x2122;s decision making and a discussion forum for new ideas. The group also decided that email communication and mailing list updates could provide an acceptable and equally useful function.

Whilst the Allianceâ&#x20AC;&#x2122;s work relates to a specific a geographical area we recognised that other areas are not served by similar work, and the group made occasional exceptions to allow members from other areas to travel to our meetings and/or be part of the mailing list, providing support for their work where possible.

The Alliance addressed specific topics identified by patients and carers, by undertaking bespoke projects which could include (but not be limited to) service improvement projects, supporting academic research, audits and surveys, community involvement and capacity building across the whole of the cancer pathway. It represented a unique opportunity to promote the needs of the LGBT community by promoting cooperation and collaboration both between organisations but also by integrating the voice of patients and carers who are also represented on the group, both as individuals and as representatives of patient support groups.

The capacity to undertake this remit continued to be supported by two roles, which were funded by Macmillan for a second year in 2017 â&#x20AC;&#x201C; Macmillan LGBT and Cancer Strategy Manger and Macmillan LGBT and Cancer Project Worker: 16

Both roles were dual branded in partnership with Macmillan and were employed by The Christie NHS Foundation Trust. 2. Aims

The aims of the Alliance in 2017 were: 

To improve services and support available to members of the LGBT community who have a cancer diagnosis, are living beyond a cancer diagnosis, or caring for someone with a cancer diagnosis, to the benefit of all.

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To influence the public health agenda in order to promote healthy lifestyles, improve the general health of the LGBT community where lifestyle choices may impact on the prevalence of cancer, awareness of the signs and symptoms of cancer, and early diagnosis.

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Advocate for the reduction of health inequalities for the LGBT community

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To support academic research and learning in relation to the above.

3. Membership At the beginning of 2017, the following organisations were represented: 

The Christie Hospital NHS Foundation Trust

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The LGBT Foundation

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TLC (formerly Relate GMS)

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Prostate Cancer UK

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Out With Prostate Cancer – Support Group

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NHS England / Greater Manchester and Cheshire Strategic Cancer Network

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University Hospital of South Manchester 17

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Central Manchester NHS Foundation Trust

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Macmillan Cancer Support

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Roy Castle Lung Foundation

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Disability Solutions, Staffordshire

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DeMontford University

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University of Manchester

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Womb Cancer Support

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Birmingham City University

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Alcohol, Drugs and tobacco Division – Health and Wellbeing Directorate Public Health England

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Chester Research Unit for the Psychology of Health (CRUPH) at the University of Chester.

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Public Health, Policy and Performance, Wirral Borough Council

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The Clatterbridge Cancer Centre

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Greater Manchester CCGs

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LGBT people affected by cancer and their carers

During 2017 the Alliance expanded to include members from Wigan and Leigh Hospice, Kirkwood Hospice, Greater Manchester Bowel Network, Jo’s Trust, Salford Royal NHS Foundation Trust, TransForum and additional representation from Pride in Practice and The Christie NHS Foundation Trust.

Visiting speakers and delegates at meetings in 2017 included Age UK, The Christie Patient Centered Research group and Macmillan Scotland.

Spotlight: Screening Activity at Manchester Pride (26th-27th August 2017) and Sparkle Weekend (8th-9th July 2017) â&#x20AC;&#x201C; working in partnership with:

As a response to the lack of LGBT specific screening information available, as well as the unique needs of trans people, the LGBT Cancer Support Alliance decided to promote the three screening programmes (breast/chest, bowel, cervical) at Manchester Pride and Sparkle Weekend, which is the largest transgender festival in the world.

Bespoke resources developed for these events included: -

A quiz

A resources sheet

A sheet for people to request further information about the three screening programmes, becoming a Greater Manchester Cancer Champion and request further information about the LGBT Cancer Support Alliance.

Organisations involved in co-production and delivery of this work included Greater Manchester Bowel Movement and Joâ&#x20AC;&#x2122;s Cervical Cancer Trust, who were both connecting to the Alliance for the first time through this multi-agency project.

The group facilitated 250 interactions with community members across both events, and demographic data captured at the events showed that around a third of these were trans people.

Other outputs:

A bespoke evidence-based programme of training for healthcare professionals continued to be piloted in 2017, building on the positive feedback from initial trials at the Macmillan Professionals Conference in 2016. Trial sessions were delivered in Brighton (9th October, 16 delegates), Edinburgh (13th November, 9 delegates) and South Wales (26th October, 18 delegates), where a Train the Trainer session was also delivered. These sessions were independently evaluated by the Learning and Development Teams in each area.

Elements of the training package were delivered to staff at regular team meetings where possible. For example, the HR and Gynae Teams at The Christie NHS Foundation Trust, AHP and nursing staff at UHSM and the Stonewall Champions Network at Salford Royal NHS Foundation Trust.

Elements of the training package were also distilled into an hour long presentation delivered to two groups of radiotherapy students (a group of 80 at Liverpool University and 70 at Birmingham City University) and at a presentation at Sunderland NHS Trustâ&#x20AC;&#x2122;s End of Life Care Conference on 22nd November. Overall elements of this training package have reached around 1000 professionals over the last two years.

Supplementary education events supported by the Alliance included a Grand Round at The Christie NHS Foundation Trust on 15th December (with 63 delegates and 9 viewing a livestream online) and a conference by the Macmillan Staffs project, both on the theme of how to talk about sex and sexuality with patients. 20

The Macmillan Project Worker facilitated stronger links with The Christie Equality and Diversity Team in 2017, holding monthly catch-up meetings and feeding into a workplan detailing project action to be undertaken at The Christie (see appendix G).

Work with Macmillan inclusion Team continued to build on existing areas of need identified by the Macmillan LGBT Taskforce in 2016, for example the development of a poster featuring a gay couple to be displayed on Macmillan’s buses and inside Information and Support Centres and two focus groups around support groups at the Macmillan Voice Conference.

Essays and content for a Macmillan booklet on ‘Supporting Lesbian, Gay, Bisexual and Transgender People Affected by Cancer’ were also provided by Alliance members, and this guide was distributed to every Macmillan professional in the UK. This can be accessed here: https://www.macmillan.org.uk/aboutus/healthandsocialcareprofessionals/newsandupdates /macvoice/spring2017/mac-voice-spring-2017.aspx

The Alliance facilitated links to hospices and hospice staff, for example supporting research projects by Rebecca Lennon at Wigan and Leigh Hospice and undertaking the delivery of two training sessions to regional Marie Curie staff. 21

The Alliance hosted an event at the MRI as part of the University of Manchesterâ&#x20AC;&#x2122;s Sexuality Summer School (25th May) which used performance art and comedy to look at living with and beyond cancer.

Spotlight: Proud2BSmokefree Report Launch Activity â&#x20AC;&#x201C; Spring 2017

Smoking cessation has been identified as one of the key 6 areas in the Greater Manchester Plan. This report looks at the prevalence of smoking in the LGBT community, smoking cessation and knowledge of the links to different cancers within the LGBT community.

Pictured L-R: Greg Thorpe (Manchester Pride), Melody Holt (Roy Castle Lung Foundation), Ben Heyworth (LGBT Cancer Support Alliance), Julie Jerram (Manchester Health and Care Commissioning), Peter Mackereth (formerly of The Christie NHS Foundation Trust)

A launch event was held at Peopleâ&#x20AC;&#x2122;s History Museum on 28th February. Around 50 attendees from LGBT organisations and smoking cessation services were there to hear speakers including Councillor Paul Roberts and David Reagan, Director of Public Health for Manchester at Manchester City Council and a panel discussion, moderated by Melody Holt, from the Roy Castle Lung Foundation featuring Peter Mackereth, former Tobacco Control Lead; Greg Thorpe, Project Manager of Superbia, Manchester Prideâ&#x20AC;&#x2122;s year-round calendar of cultural events; and Andrea Crossfield, CEO Healthier Futures.

Key discussion points at the event included introducing monitoring, Manchester Pride and tobacco control in LGBT spaces, health inequalities (cancer) and the linking-up of services to provide support for LGBT people

Main outcomes from the event included:

Distribution of copies of the report to key stakeholders and agreement to share the report with colleagues and receive further updates via a Proud2BSmokefree mailing (75 contacts are now held on this list). 24

Representation of the Alliance on the Greater Manchester Tobacco Control Board going forward. Ben Heyworth attended first meeting on 7th March and gave a presentation on the report. Ben Heyworth is currently consulting on the development of the Greater Manchester Tobacco Control Strategy which is due to be completed in early 2018. Health inequalities linked to the LGBT community and tobacco use will be clearly embedded in this document and any future planning taken forward by Manchester City Council.

Agreement by stakeholders to take the recommendations back to their own organisations and share examples of progress for use by the Alliance to show report impact and as case studies.

Other outputs: Copies of the report were distributed by Alliance members via pop-up stands at CMFT (7th March), The Christie (8th March), Salford Royal (9th March).

The report was launched as a PDF online version on No Smoking Day (8 th March) and shared by Alliance members and related organisations. The report can be viewed here. 25

The Proud2BSmokefree report has been showcased at two conferences, spreading the word about the project to around 500 professionals. These were Second Malignant Neoplasms after Cancer in Childhood (Birmingham, 9th November) and the UKONS Conference (Harrogate, 10th November) where the project also appeared as a poster presentation.

The findings of the report have been used to support an amendment and additional information added to Manchester City Councilâ&#x20AC;&#x2122;s Joint Strategic Needs Assessment on LGBT people.

Aim three: Advocate for the reduction of health inequalities for the LGBT community Spotlight: Embedding Sexual Orientation Monitoring in new and existing services

The NHS Digital Info Standard on sexual orientation monitoring was published on 5th October, and the Alliance has embedded promotion of the standard and best practice around monitoring into all of its advocacy work in 2017. The standard can be viewed in full here: https://www.england.nhs.uk/publication/sexual-orientation-monitoring-fullspecification/ Although there is no service-wide drive to improve gender identity and trans status monitoring the Alliance has also advocated for this concurrently.

The LGBT Cancer Support Alliance has produced a number of advice papers for new and existing services, which has allowed for the adoption of better monitoring. Gender identity monitoring was improved in the system for the Macmillan virtual Multi-Disciplinary Team (which was launched in 2017), and an advice paper for the electronic Holistic Needs Assessment (published October 2016) means that sexual orientation monitoring appeared in the 2017 system update.

A consultation with the Engagement Manager at The Christie in December 2017 means that the hospitalâ&#x20AC;&#x2122;s compliancy with the standard is currently under investigation. 27

The Alliance has shared and supported the LGBT Foundation’s #ThanksForAsking campaign on social media to mitigate misinformation about the standard propagated in the UK media.

Other outputs: The LGBT Cancer Support Alliance’s social media audience grew in 2017, providing further visibility for this community of identity within the cancer world. On Twitter we were followed by 300 accounts in 2017, bring our total number of follows to 1,100. Our recently launched Facebook page currently has 200 followers.

The social media campaign for National Lesbian and Bisexual Women’s Health Week in March was of particular note for reach to a targeted audience. Across 7 days relevant videos from Maurice Nagington’s study ‘LGBQ Experiences of Cancer’ were shared. Macmillan’s main social media feeds also promoted the study and showed support for lesbian and bisexual women affected by cancer, for example the post below which received a large number of retweets:

Maurice reported high numbers of views to the website (by 16 th March the site had received 204 visitors, 735 page views and recorded 9hrs 20 minutes of Youtube view time) and the Alliance accounts reported a high number of shares for the social media posts and a number of new followers from the lesbian and bisexual women demographic during the week.

The Alliance has positioned itself as advice-giving body for cancer professionals, through contact via email or where possible giving advice in person, for example at the UK Radiation Oncology Congress (12th-14tth June 2017) where we supported a keynote on coming out as an LGBT cancer professional with a stand.

The Alliance has lead workshops at the Manchester Cancer Improvement Partnership Conference at Old Trafford (10th February) and has further supported staff who attended our workshops at the 2016 Macmillan Professionals Conference in implementing change.

As a result of this support Mount Vernon Hospital were able to introduce gender neutral signage for toilets at their site. The LGBT Project Worker appeared in The Christie Schwarz Round to talk about their experience of discrimination.

The Alliance has supported a number of patient advocates throughout the year, with supported activities at Pride and Sparkle events.

Some patients have allowed us to utilize their own outlets to spread our message to the community, for example appearing on community radio to talk about the project.

The Alliance were featured in a new Care Quality Commission publication on good practice around â&#x20AC;&#x2DC;equality and human rightsâ&#x20AC;&#x2122;, which can be viewed here:

http://www.cqc.org.uk/sites/default/files/20170913_equally_outstanding_ehr_resource_1. pdf (the Alliance is featured on page 24 as part of The Christie Case Study)

Aim four: To support academic research and learning in relation to the above. Spotlight: The Alliance supported a number of studies which were published in 2017.

These were as follows:

Researcher: LGBT Cancer Support Alliance Title/Publisher: Proud2BSmokefree report (self-published) Summary of study: The presentation of research around smoking habits in the LGBT community, including recommendations for professionals around improving the efficacy of smoking cessation services for this community Alliance input: Based on Alliance research, drafts peer reviewed by Alliance members.

Researcher: Lawrence Roberts, Peter Mackereth, Ben Heyworth, Andrew Gilliver Title/Publisher: Smoking and vaping amongst the lesbian, gay, bisexual and transgender community: results of a Proud2BSmokefree survey (Cancer Nursing Practice)

Summary of study: A summary of the Alliance’s research around smoking habits in the LGBT community, including recommendations for professionals around improving the efficacy of smoking cessation services for this community Alliance input: Based on Alliance research, drafts peer reviewed by Alliance members

Researcher: Maurice Nagington (University of Manchester) Title/Publisher: LGBQ Experiences of Cancer (the website for the study can be viewed here) Summary of study: Macmillan-funded study to investigate LGBQ experiences of cancer and produce recorded videos of patient interviews for use in education for professionals. Alliance input: Research proposal and marketing materials peer reviewed by the group in 2015, aided recruitment of patients for the study, supported website launch with tweets for Lesbian and Bisexual Women’s Health Week.

Researcher: Rebecca Lennon (Wigan & Leigh Hospice) Title/Publisher: Developing accessible and inclusive palliative care for LGBTQI patients and their carers (self published poster and report) Summary of study: Understanding the issues facing LGBTQI patients and their carers in palliative care and exploring service development ideas with staff and external stakeholders. Alliance input: Group advised around scope of project, monitoring and policy review.

Researcher: Jeremy Wiggins (Victorian AIDS Council) Title/Publisher: Research into co-production of services with trans people (self-published, internal reporting) Summary of study: Churchill Trust Fellowship study to research co-produced services with trans people, with the view to taking ideas back to implement in Australia. Alliance input: Summary of Alliance’s working model provided, links to other projects at LGBT Foundation shared.

Other outputs:

The Alliance supported the Christie Patient Centred Research group in their accommodation of appropriate demographic monitoring practice of LGBT research participants. 32

The Alliance submitted a bid to Cancer Research UK to further the Proud2BSmokefree research project into LGBT smoking habits in 2018.

The Alliance continues to support a number of ongoing studies which will publish in 2018:

Researcher: Shaun Ralph (University of Manchester) Title/Publisher: TBC (University of Manchester dissertation) Summary of study: Research into the consensus around the amount of time a person should abstain from anal sex before a PSA test. Alliance input: Provision of supportive statement.

Researcher: Julie Fish (DeMontfort University) Title/Publisher: Experience of cancer treatment as an LGBT patient Summary of study: Targeted study capturing interviews with LGBT patients about their experiences of treatment at five hospital sites across England. Alliance input: Aiding with recruitment at The Christie NHS Foundation Trust, social media promotion.

Researcher: Sue Benbow (Age UK) Title/Publisher: Trans Age Project (Age UK) Summary of study: Research into older trans people’s experience of health and social care, with the aim to produce a toolkit for professionals. Alliance input: Review of project direction, connections and links provided to community bodies who can input into the study.

Researcher: Hannah Burton (University of Liverpool) Title/Publisher: Trans people’s views of Macmillan’s printed information (University of Liverpool dissertation) Summary of study: A review of Macmillan booklets “Managing the late effects of pelvic radiotherapy in women” and “Managing the late effects of pelvic radiotherapy in men” by

members of the trans community and suggested guidelines for making the guides more inclusive. Alliance input: Review of project direction, connections and links provided to community bodies who can input into the study, advice around demographic monitoring, access to the results of Macmillan information focus groups from Winter 2016.

Macmillan LGBT Project Worker Personal Reflections: Lawrence Roberts

As I come to an end of my time as Macmillan LGBT Project Worker I can say that itâ&#x20AC;&#x2122;s been a real privilege to co-produce this cutting edge portfolio of work with so many dedicated staff and patients.

2017 was a year in which the project really accelerated in terms of both scope and reach, leading us into new areas of work and new contacts. One project which worked really well was our outreach around screening at Manchester Pride and Sparkle Weekend. Having identified the need for LGBT-specific screening advice and information it was the expertise and enthusiasm of partners from the screening programmes across Greater Manchester that allowed this multi-agency project to have such a high quality of output, not only allowing us to produce an excellent set of resources but also to have our stalls at both events manned with the best expertise in the city, all of whom had received the latest training from the Alliance on LGBT awareness.

In the later part of the year there was a noticeable demand from university courses across the country for expertise in developing the inclusivity of their courses. As well as delivering lectures at Liverpool University and Birmingham City University (where I was delighted to be invited to speak as part of a student-programmed study day) we forged links with Manchester Medical School, where it is hoped that an exciting partnership in 2018 will improve the LGBT content across all of their courses.

One of the biggest challenges was our stakeholder meetings, which were packed out in 2016 but saw a falling attendance throughout the year â&#x20AC;&#x201C; had our project areas progressed so much that we had moved away from areas of investment of the existing group? We did recruit new members to mitigate this and seek the appropriate expertise for our current focuses, for example bringing on board all of screening teams for our Sparkle and Pride campaigns around screening in the summer. Or maybe due to ever growing demands on the NHS it was difficult for healthcare staff to get time away from their work?

Macmillan LGBT Strategy Manager Personal Reflections: Ben Heyworth

Another successful year for the Alliance included some real highlights including the launch of the Proud2Bsmokefree Report which was well timed to coincide with the launch of the GM Tobacco Alliance and a new strategy around tobacco control across the region following the devolution of the GM health and social care budgets.

I felt it was a great example of how best to time the publication of a report to ensure it had maximum impact and response from those groups we were seeking to influence. Whilst we have yet to see a significant reduction in smoking rates amongst the LGBT community I feel confident that we have positioned ourselves to influence the proposed campaigns and activity through the Public Health teams at Manchester City Council in the next few years, as well as highlighting to stakeholders within the LGBT community that they have a responsibility to consider how their own activities have an impact on the health of the community.

Chief amongst these are the LGBT Foundation and Manchester Pride. It is also to the credit of this project that we have been able to represent Alliance members and in particular The Christie NHS Foundation Trust and Macmillan Cancer Support in the newly formed Tobacco Alliance, reaffirming the understanding of the relationship between smoking and cancer, and reminding the group that smoking cessation is a priority highlighted by the GM Cancer Plan.

2017 was a year in which we struggled to attract the same level of engagement at regular Alliance meetings whilst conversely hugely increased our reach via electronic communication, social media and presence at other groups, including the aforementioned GM Tobacco Alliance, but also including the Bowel Screening Network and the Voluntary and Community Sector Stakeholder Group.

It is clear that as demands on front line services increase, it is difficult for clinical staff to commit to meetings, especially where the activity falls outside their core responsibilities (despite having a strong interest in the topic area). Throughout the year there was much debate about how to address this but I never really felt we came to an acceptable 37

conclusion. It is certainly something that I have noticed in other projects outside of the LGBT work, and requires some thought.

Funding and resourcing remains a considerable problem and whilst we have been able to attract further funding from Macmillan to rehouse the Project Worker role at the LGBT Foundation, it is a shame we were unable to agree funding from other sources, particularly when the evidence for the continued existence of the Alliance as a force for tackling health inequalities in the LGBT community presents a compelling case.

As things stand, unfortunately we look set to continue without the intrinsic value of that umbrella branding. The real innovation of the Alliance was the ability to take forward work without the constraints imposed by organisational barriers and it is a shame that this element has been lost. I am particularly grateful to a specific sponsor who through the Christie Charity has enabled the trust to retain my specific remit around LGBT and Cancer for a further twelve months. Beyond that, for both posts, the future remains somewhat uncertain.

I would particularly like the thank the efforts of my colleague Lawrence Roberts, who I feel has delivered over and above his grade and been able to drive forward many of our ideas and initiatives despite the ups and downs that 2017 has presented. I look forward to working together in partnership with him in the future. I would also like to thank colleagues at Macmillan UKO, especially Fatimah Vali, who has been a constant and enthusiastic advocate for LGBT people affected by cancer and greatly enhanced our ability to influence and shape the agenda at Macmillan nationally.

From a personal development point of view, it is very pleasing to be seen as an expert in the field, and not just locally. The many invites to speak at events including (but not limited to) the UKONS conference, the Macmillan training events across the regions and in Brighton, trips to Sunderland, Birmingham and Liverpool, and of course in Greater Manchester, have all increased by confidence as a presenter and enhanced my professional reputation.

Finally, Iâ&#x20AC;&#x2122;m delighted to have been involved in the various research projects (as noted under Aim 4) that have been undertaken by various members of the Alliance this year. It is quite amazing what can be achieved when individuals of the same mind come together to address an issue, and the increasing evidence base around LGBT and Cancer is a testament to the skills and commitment of the academics and researchers who have committed to undertaking work in the area.

2018 - Next Steps The Alliance has collectively proposed a number of objectives for 2018, which are examined in more detail in the project plan (available on request). The suggested areas of work are as follows:

Monitoring and Safeguarding Including advocacy for sexual orientation, gender identity and trans status monitoring in local clinical systems, creating LGBT inclusive spaces in hospitals and ensuring the LGBT community are included in the implementation of the Recovery Package by local services.

Following up on the Equality Impact Assessment for the Greater Manchester Cancer Plan

Proud2BSmokefree Including support and promotion of the Greater Manchester Tobacco Control Plan to health care professionals (which includes Proud2BSmokefree recommendations) and a qualitative research project which builds on the Proud2BSmokefree report.

Education Including national rollout of the LGBT and cancer session to Macmillan staff, updates to the Christie induction to include examples of LGBT patients, a sex and sexuality study day, a partnership with Manchester Medical School and ensuring LGBT and cancer is reflected the Vanguard education modules.

Sexual Dysfunction Including a project on MSM and sexual health following cancer and campaigning and advocacy for to widen the provision of the HPV vaccine to boys

Screening Including follow-up activity to screening promotion and activity in Summer 2017.