Membership Directory for the LGBT Cancer Support Alliance
LGBT CANCER SUPPORT ALLIANCE
M embe r P rof i l e s
LGBT Cancer Support Alliance –
Members Directory 2016 – Introduction from the Chair I’m delighted to present the first directory of membership for the LGBT Cancer Support Alliance. The LGBT Cancer Support Alliance was set up in 2014 and recognises that the specific needs of LGBT people (Lesbian, Gay, Bisexual and Transgender) are not being addressed by mainstream cancer services. The group seeks to bring together professionals from a variety of organisations and backgrounds and people affected by cancer and their carers, to engage in a programme of work designed to address this inequality. Most members of the LGBT Cancer Support Alliance are based in the North West of England. We also recognise the contribution and commitment of members living further afield. We work in partnership with the Macmillan Cancer Support, particularly the Inclusion Team based in London, who are seeking to establish a National Macmillan LGBT and Cancer Taskforce. It is our hope that the Alliance will play an instrumental part in this project going forward. Equally, we recognise the contribution of the local Macmillan Team, providing resources and support without which it would not be possible to continue this project. The aim of this directory is to illustrate the wide range of individuals that have engaged with the Alliance to date. I’m sure you’ll agree it is a broad church. The NHS is well represented with both clinical and nursing, management and allied health professional staff. Community based organisations and charities are also represented, including a number of members from LGBT Foundation. Academics and Universities are also playing a huge role within the Alliance, and we are supporting a range of ongoing research projects. User Involvement is at the heart of our activity and we seek to co-create all our activities with patients, carers and families. I’m delighted that a number of individuals affected by cancer have included their details in the directory. On a personal note, I was very interested to hear from members what motivated them to join the Alliance and what they think some of our major challenges are going forward. This makes for very interesting reading. I look forward to seeing how some of these hopes and aspirations play out. We have already made significant progress and it is only through the continued commitment of our members that we continue to move forward. The LGBT Cancer Support Alliance does not directly support patients, but empowers others, individuals and organisations, to do so working both on “front-line” projects and at a strategic level. That being said, we are directly contactable via email, and also use social networking widely. We welcome contact from any individual – a professional or a person affected by cancer – who may wish to learn more or get involved.
Ben Heyworth
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LGBT and Cancer Strategy Manager Living with and Beyond Cancer Network Manager ben.heyworth@christie.nhs.uk
Lawrence Roberts
LGBT and Cancer Project Worker lawrence.roberts@christie.nhs.uk Twitter: @LGBTCancerSA You Tube: LGBT Cancer SA
CONTENTS Stephanie Mace 4 Maurice Nagington 5 Andrew Gilliver 6 Dr. Peter Mackereth 7 Polly Sangar 8 Paula Hewitt 9 Jo Coulson 10 Angie Bunn 11 Lawrence Roberts 12 Julie Fish 13 Sean Ralph 14 Helen Johnson 15 John Lancaster 16 Kathy McGuirk 17 Brian Hixson 18 Melody Holt 19 Ben Heyworth 19 Natalie Williams 20 Richard Hunt 21 Martin Wells 22 Claudia Carvell 23 Laurence Webb 23 Tara Hewitt 25 Louie Stafford 26 Nick Hulbert-Williams 27
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Stephanie Mace PhD student, University of Manchester Who are you and what is your day job? I’m a full-time PhD student, based in the Health Psychology department at the University of Manchester. My research is looking into LGB women’s experiences of clinical communication in breast cancer care. LGB women are at higher risk of developing breast cancer compared to heterosexual women, due to lifestyle choices that increase risk factors, and the presence of certain barriers to accessing healthcare services. This group is also one and a half times more likely to report a negative experience of healthcare compared to heterosexual women - this provided a key rationale for my current study. Could you tell us why you agreed to become part of the Alliance? When I started my research into the intersection of sexuality and cancer, it soon became evident that there was little on the ground to highlight the specific experiences of LGBT populations in cancer care, and how healthcare services could better attune to the specific needs of this group (LGBT Foundation and Julie Fish’s work to date have been of great use in helping to justify my research into this area). Having come across the Alliance, I was really encouraged to hear that
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work was already underway to address this knowledge gap and illuminate the experiences of a relatively silenced group in cancer care. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? As a newcomer to the group I’m looking forward to both discussing and sharing my research as it progresses, including the dissemination of interim publications to highlight my findings (the first publication will be a literature review). I’m also looking forward to sharing the contacts I’ve made to date, and linking in with any networking opportunities to boost the visibility of the Alliance and the work it is undertaking. I am very keen to contribute toward a better understanding of LGBT experiences of current cancer care services, and exploring ways in which such experiences can be captured, illustrated and ultimately improved upon in medical, charitable and academic fields of work. I look forward to exploring my role within the team further once I’ve attended my first meeting! If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Remove any trace of heteronormative culture in cancer care services, eliminate the barriers faced by LGBT populations in accessing effective cancer care, and better educate medical/cancer professionals as to the experiences of LGBT cancer patients,
so that healthcare services can be more open to, and accommodating of diverse populations in cancer care. What do you think is the biggest challenge for the group? Accessing LGBT people in research campaigns given that data on sexual orientation and gender identity is not readily available. Who inspires you? The breast cancer patients I have met with to date in pilot meetings- their willingness to meet with me and discuss their personal experiences of cancer care, the impact of their sexuality on this, and the barriers they have faced in communication in the breast cancer clinic has been a real inspiration and catalyst for me to continue with this work.
Maurice Nagington Researcher from the University of Manchester Who are you and what is your day job? Dr Maurice Nagington, lecturer/ researcher at the University of Manchester. Could you tell us why you agreed to become part of the Alliance My background is in supportive and palliative care research. However, I have always been interested in the health inequalities that LGBT people experience. I began trying
to explore these issues with two or three colleagues and had very limited success, it was also very hard to have a larger forum to build on ideas with. The LGBT cancer support alliance gave me the opportunity to meet with more than just academics; it gave me the opportunity to meet with service delivery people, managers, patients, and Macmillan professionals We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? As an academic, I can help with letting people know where the latest research is, how to do high quality research, and how to publish in academic journals. I also have some clinical links with palliative care organisations like hospices etc. I’m also keen to start bringing some of what the alliance discusses and learns into the teaching of nursing/healthcare/social care students.. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Large scale gender and sexuality monitoring for all health and social care services that are key to
supporting people with cancer. I’m not a statistician, and I tend to work (almost) exclusively with qualitative data, but even I recognise that at the moment we have so little idea about equity of access that it makes it hard to create arguments for funding.
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What do you think is the biggest challenge for the group? Ensuring we have enough time in meetings to cover a variety of business. Who inspires you? Things and actions inspire me rather than people.
Andrew Gilliver Community Involvement Co-ordinator for the LGBT Foundation Who are you and what is your day job? My name is Andrew Gilliver and I am Community Involvement Manager for LGBT Foundation based in Manchester. My main role involves connecting with LGBT members of the community around issues relating to health, wellbeing and social care. I also liaise with professional health and care organisations to ensure they are understanding of the specific needs of LGBT people. Could you tell us why you agreed to become part of the Alliance? Over the years we have received many requests from people in the community to do more around highlighting disproportionate need and gaps in service provision for LGBT people around cancers. Over a decade
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ago we began a campaign to highlight the need for lesbian and bisexual women to raise the issue of cervical screening with their GP’s. Also we have been aware that certain needs are not being met around cancer for men who have sex with men. Most recently we have become focused on the need to highlight invisibility around cancer support for transgender people. We are also in touch with many researchers who are involved in the field of LGBT cancer. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? My role is to try and understand what the key messages are for LGBT people and also to put forward the unique aspects of why and what is different for lesbian, gay, bisexual and trans people around cancer. Networking with interested organisations is extremely useful as it helps me to ensure that LGBT people are aware of what work is being carried out on their behalf and also I am able to support professionals by making sure their work is relevant to LGBT people themselves. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? I would really like to see LGBT people and projects included as part of mainstream cancer organisations work. It’s great that so much work is being undertaken but it would be greater still if this was included as
part of the wider message and in main communications rather than just segmented or segregated out. What do you think is the biggest challenge for the group? There is only one full time LGBT cancer worker in the group and there is so much work to address. There are so many individual projects to do and so much research and awareness to undertake and share. Prioritising which work to take forward is difficult as there is increasing demand on the time of group members. Meeting the needs of so many LGBT people and trying to ensure inclusion of LGBT issues around cancer is something that is needed constantly. Who inspires you? Not going to list anyone in particular but…….Anyone with drive and determination to ensure that seldom heard voices are represented. People who are passionate about what they do and who have a positive outlook.
Dr. Peter Mackereth Clinical Lead for the Complementary Health and Wellbeing Service at The Christie NHS Foundation Trust.
Who are you and what is your day job? Dr Peter Mackereth, Clinical Lead Complementary Health & Wellbeing Services. I manage therapists and health advisors. Our therapy team provide massage, reflexology, acupuncture, hypnotherapy and relaxation techniques – supporting patients whilst inpatients, during medical procedures and end of life. Health advisors support patient, carers and staff with smoking cessation. We have a Lead Health Advisor that helps with alcohol dependency and memory loss. We provide ‘drop in’ complementary therapy sessions and classes for outpatients. Our team have portfolio of research and run training programme/courses to disseminate best practice. Could you tell us why you agreed to become part of the Alliance? I am a founding member with the Alliance developing out of work of the Survivorship project undertaken at The Christie. I have worked with HIV/AIDS and LGBT services and have been part of an LGBT research interest group in nursing in the past. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I have a specific interest in improving care for LGBT people affected by cancer, ensuring respect and dignity. I contribute in terms of health and wellbeing issues (smoking cessation and alcohol advice) and symptoms
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management utilising complementary therapy intervention. I have research experience in developing studies, data collection, analysis, report writing and publication and I enjoy coming up with ideas and ways of moving forward. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Prevention, improve survivorship and reduce symptom burden by changing lifestyle e.g. smoking cessation What do you think is the biggest challenge for the group? Having such a wider area (over 200 different cancers), working with diverse groups and engaging with the LGBT community. Who inspires you? The next patient I meet living with cancer‌ personally Lisa Gerrard singer and composer!
Polly Sangar Relationship Therapist, Relate Greater Manchester South
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Who are you and what is your day job? I’m Polly Sangar: I’m a Relationship Therapist working for Relate GMS. I work with individuals, couples, young people and families. At Relate we strive to put healthy relationships at the heart of all groups in society. Could you tell us why you agreed to become part of the Alliance? I became part of the alliance whilst promoting a Relate counselling service for people affected by Prostate Cancer which coincided with the development of the alliance as an active and viable body. Despite the ending of the funding I have remained an active member of the alliance as I recognise the importance of the work in improving cancer services in the LGBT community. Research suggests that relationships are fundamental to our sense of wellbeing, have the same impact on our health as diet and smoking, and people in healthy relationships are 50% more likely to survive life threatening illness. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I consider my role is to represent Relate as one of the founding members of the alliance, to get involved with the various projects, and to promote the work of the alliance. I have attended various events, bullied folk into answering questionnaires, and have attended all the alliance meetings except one. My personal/professional
focus would be to promote healthy relationships across the LGBT community.
Paula Hewitt
If you could make one change to improve the experience of cancer for the LGBT community, what would it be? To create a cancer service (and society) where people don’t have to think twice or feel concerned about disclosing their sexuality for fear of discrimination/ discomfort and risk compromising their care.
Change Delivery Senior Officer, Prostate Cancer UK
What do you think is the biggest challenge for the group? The biggest challenge to the group links to my previous point, and as always comes down to funding and time this involves educating/training all staff working across the cancer network in raising awareness of the inequalities around LGBT and cancer, and how to take a more active stance (affirming rather than just accepting). Who inspires you? I am inspired by anyone who challenges inequality even in times of adversity. There is a rich history of such figures, however a modern day example that springs to mind would be Malala Yousafzai for her fight for female education. Closer to home, I am inspired by the work of the Alliance particularly around the ‘taboo’ topic of cancer and sex.
Who are you and what is your day job? I’m Paula Hewitt, Change Delivery Senior Officer for Prostate Cancer UK Could you tell us why you agreed to become part of the Alliance? My post within Prostate Cancer UK (PCUK) has recently changed but prior to that I commissioned services for men with prostate cancer and one of these was a Christie initiative and Ben Heyworth was my contact for this project. In discussion it came about that we were both interested in ‘seldom heard’ groups, particularly LGBT. PCUK was in a position to financially support the production of a series of postcards to distribute around the gay and bisexual community regarding prostate cancer and to fund a conference focusing on the gay, bisexual and trans women community and prostate cancer. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I think my role is about being the link with the national organisation of PCUK so that I am able to contribute information about any new initiatives/ campaigns/treatments to the Alliance. My role is also to feed back LGBT
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issues to PCUK. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Through the work of the Alliance and other activities, I hope people from the LGBT community are able to have a positive health care experience What do you think is the biggest challenge for the group? I think one of the biggest challenges is going to be prioritising the priorities! There are so many issues relating to cancer and LGBT people all of which are important but acknowledging that we can’t address all of them at the same time. Who inspires you? Clive Stafford Smith of Reprieve – lawyer who represents poor people in death penalty cases and secures the release of Guantanamo Bay prisoners amongst other things.
Jo Coulson LGBT & Cancer Project, Staffordshire Who are you and what is your day job? Jo Coulson – Scoping Lead for the LGBT & Cancer Project, Staffordshire
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Could you tell us why you agreed to become part of the Alliance? We are hoping to establish a similar group in Staffordshire (currently at scoping stage) and were greatly inspired by the work of the Alliance. Our populations are different but our aims and objectives are closely aligned and we hope to share our learning as things progress. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? Angie Bunn and I are part of the ‘Services for Trans People’ workstream in an advisory capacity. As well as learning from the group, we will feed back our findings from events and engagement in Staffordshire – the more insights and inputs we can both gather, the better. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Compulsory LGBT and Trans Advocacy training for health professionals to improve communication and awareness, reduce assumptions and awkward conversations, having to ‘come out’ and being fearful of the response, etc. Box-ticking and general ‘equality and diversity’ sessions don’t cut it. What do you think is the biggest challenge for the group? The current state of the NHS and uncertain future…
Who inspires you? Kathleen Hanna from Bikini Kill (punk feminist riot girl hero) inspire me, because when your group is not represented, do something about it and make it amazing.
Angie Bunn LGBT & Cancer Project, Staffordshire Who are you and what is your day job? Angie Bunn - Engagement support for the LGBT & Cancer Project, Staffordshire Also Disability Training Officer Could you tell us why you agreed to become part of the Alliance? We would like to establish a similar group in Staffordshire. I feel our objectives are similar and we would like to share our findings with the Alliance.
If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Compulsory LGBT training for health professionals also to improve communication and also awareness, reduce assumptions and awkward conversations, having the right literature in the right format, educational literature about LGBT & cancer for LGBT communities. What do you think is the biggest challenge for the group? No funding to implement any of the above training, literature, and the current state of the NHS. Who inspires you? My local community, I want the next generation to have equality and also to be more aware and informed of cancer support & services.
We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? Jo Coulson and I are part of the ‘Services for Trans People’ work stream. As well as learning from the group, we will feed back our findings from events and engagement in Staffordshire – the more insights and inputs we can both gather, the better.
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Lawrence Roberts LGBT Project Worker, The Christie NHS Foundation Trust Who are you and what is your day job? Lawrence Roberts, LGBT Project Worker, a brand new role funded by Macmillan and based at The Christie in Withington and LGBT Foundation. Could you tell us why you agreed to become part of the Alliance? As LGBT Project Worker I coordinate the activities and meetings of the Alliance, a lively role due to growing membership and an increased number of project areas for the upcoming year. I started in post in December and attended my first Alliance meeting in January, which happened to be our biggest yet. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I’m involved with a lot of the day-to-day running of the Alliance, that’s everything from running our Twitter profile to coordinating current projects. Under my title as LGBT Project Worker I’m also out and about, meeting people affected by cancer and health professionals, making connections, talking about our work at conferences and health and wellbeing
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events and recruiting new members and collaborators. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Sexual orientation and Trans Status Monitoring within our services is the change that really needs to happen, as currently we don’t often know who the LGBT people are in our care. This continues to limit the effectiveness of ‘person-centred’ individual care and also means we have limited data on LGBT people and their cancer experience. What do you think is the biggest challenge for the group? We have a huge evidence of need across a diverse range of areas and experiences of LGBT people. Everyone on the group is hugely invested and I think the biggest challenge is to put this on the radar of others within our respective organisations or areas. Being an Alliance we can share and discuss good experiences of raising awareness and influencing change. Who inspires you? Having worked for an art gallery for the previous seven years most of my influences are creative. The Icelandic singer Bjork is my biggest inspiration: unique, innovator, collaborator, visionary.
Julie Fish
improve cancer services for LGBT people.
Professor of Social Work and Health Inequalities, De Montford University
We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I make a contribution to taking forward the Alliance in relation to public and patient engagement. I often act as a point of contact for other researchers in LGBT cancer care and recently have had telephone or face to face contact in terms of suggestions for taking their study forward. I’m also interested in engaging other users of the work we undertake such as those within the NHS and in the charitable or voluntary sector. I am interested in patient and carer involvement in research design and informing service delivery.
Who are you and what is your day job? Julie Fish, Professor of Social Work and Health Inequalities, Director of the Centre for LGBT Research, De Montfort University Leicester. I have conducted research in LGBT health inequalities for twenty years on studies funded by the Department of Health, National Cancer Action Team, the ESRC, in collaboration with Stonewall, Lloyds /TSB, the NHS Cervical Screening Programme among others. I also teach on the social work programme and support student learning. Could you tell us why you agreed to become part of the Alliance? I am committed to ensuring that innovative practice, like the work of the LGBT Cancer Alliance is embedded in everyday practice. Twenty years ago, there were sexual health clinics for lesbian and bisexual women, Breast Cancer Care funded some work in London on LB women with breast cancer and Cancer Link, in the West Midlands, funded a member of staff. They did some important and innovative work, but there was no infrastructure and when key individuals left the organisation, the work was lost or it lost momentum. I have seen this happen more recently. So my involvement is to help the sustainability of the work we are engaged in to
If you could make one change to improve the experience of cancer for the LGBT community, what would it be? That the interpersonal relationships with cancer professionals takes account of people’s identities in the ways that patients themselves would wish and the advice given is tailored to people’s needs. What do you think is the biggest challenge for the group? Several: sustainability, the disbelief of colleagues, funding, burnout. Positive challenge to attract some substantial funding to underpin research so that dedicated time and energy can be devoted to it
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Who inspires you? Mike Richards – I thought he had energy and commitment in terms of taking the equalities agenda forward when he was cancer Czar. Stella Duffy for humorously sharing her cancer journey.
Sean Ralph Therapeutic Radiographer, Clatterbridge Cancer Centre Who are you and what is your day job? My name is Sean Ralph and I work as a Therapeutic Radiographer at The Clatterbridge Cancer Centre NHS Foundation Trust on Merseyside. For the past year I have also been on a clinical academic research internship with the National Institute for Health Research during which time I have undertaken a qualitative research study exploring the views and experiences of health professionals on discussing sexual orientation and sexuality with lesbian, gay and bisexual patients in an oncology setting. Could you tell us why you agreed to become part of the alliance? Since 2011 I have been involved in work addressing the information and support needs of gay and bisexual men with prostate cancer. This work has involved developing targeted patient information publications for this group of men, setting up the support
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group ‘Out with Prostate Cancer’ and also addressing the educational needs of health professionals on these issues. Ben Heyworth attended an information session that I ran for staff at the Manchester Royal Infirmary and invited me to become a part of the then unnamed alliance, which I was very keen to do in order to take a more strategic approach to the work that I was already involved in. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? As one of the clinicians and researchers of the alliance and also someone who has been actively involved in addressing the needs of LGBT people with cancer I see my role as being someone who can share my knowledge and expertise in order to facilitate the excellent work of the alliance and its members. Through the connections that I have made through my work I have also recruited several new members into the alliance, many of whom are other researchers, as it is extremely important that our work is evidence based and that we continue to facilitate LGBT cancer research studies. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? I would have sexual orientation monitoring introduced as standard practice throughout the NHS as without this data being fed into cancer registries we don’t know what
the spread of disease is throughout the LGBT community. This makes addressing health inequalities extremely difficult to do as we don’t have the robust evidence we need to identify them in the first place. What do you think is the biggest challenge for the group? In the current climate of austerity within both the NHS and third sector the biggest challenge for the alliance is ensuring the needs of LGBT people with cancer are kept on the agenda and are not seen as something that can be cut or ignored especially when you consider that LGBT people contribute an estimated £6 billion annually to the NHS. Who inspires you? Martin Wells who I set up Out with Prostate Cancer with is a continuous source of inspiration. It has been a pleasure and privilege to work with and get to know Martin over the past few years. He always speaks extremely candidly about his lived experience of prostate cancer as a gay man, be this in the support group setting or in front of a conference full of health professionals. It is extremely humbling to hear Martin speak so open and honestly, particularly since this is something that most people find difficult to do on a one-to-one basis with a health professional.
Helen Johnson Urology Oncology Clinical Nurse Specialist, The Christie NHS Foundation Trust Who are you and what is your day job? Urology oncology clinical nurse specialist Could you tell us why you agreed to become part of the Alliance? Initially there was a lot of work going on around prostate cancer in the LGBT community and I felt that there needed to be some clinical input into this. I have since discovered there is massive amount of work to be done around patient empowerment and health care professional education around LGBT issues in the subsector of cancer patients I work with. I want to be part of promoting inclusivity and I just want to make sure that all cancer patients get access to equal standards of care no matter who they are. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I’d like to offer support in the clinical sense to the group and to support the work around men only cancers. To share the work with wider teams in clinical environments and champion the work of the alliance in other areas in which I work
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If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Educate health care professionals to understand why things may be different for the LGBT community with a cancer diagnosis and how to deal with these in a sensitive non-discriminatory way.
We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? My role is that of patient representative, especially someone with a non-gender specific Cancer, and helping support the Alliance move forward in improving the experience of LGBT people.
What do you think is the biggest challenge for the group? See above!
If you could make one change to improve the experience of cancer for the LGBT community, what would it be? The one change I would make is to not assume heterosexuality, and accept that friends supporting me are friends and not ‘partners’. (Difficult ask I know)
Who inspires you? Somebody different every day
John Lancaster Patient and Carer Representative Who are you and what is your day job? My name is John Lancaster and I am a semi-retired Respiratory Specialist Nurse, who Chairs a Support Group for people experiencing Lung Disease. Could you tell us why you agreed to become part of the Alliance? I asked to become part of the Alliance after finding out about it at Manchester Pride 2015. I was newly diagnosed with Cancer and was looking for some specific support.
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What do you think is the biggest challenge for the group? That some people in the LGBT world do not see that we have specific issues and needs around support and not just gender specific cancers. Who inspires you? My patients inspire me on a daily basis, and people I see at The Christie every time I visit.
Kathy McGuirk Quality Improvement Manager, Strategic Clinical Network Who are you and what is your day job? Kathy McGuirk, Quality Improvement Manager at the Strategic Clinical Network. Could you tell us why you agreed to become part of the Alliance? The function of the Strategic Clinical Network is to improve quality of care and reduce unwarranted variation in services. I am very conscious of the multiple barriers to cancer services many LGBT people experience. Research demonstrates a poorer quality experience compared to heterosexual, cis gendered peers and the poorer health outcomes that result. The SCN are passionate that work needs to be done to achieve equity of access.
monitoring and can discuss with commissioners why full demographic monitoring should be a requirement from providers. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Service providers to correctly address people eg.by their preferred pronoun or as partners not friends. What do you think is the biggest challenge for the group? Often the people we want to educate can feel criticised, or defensive. The biggest challenge is helping people to see where their service maybe disadvantaging LGBT people unintentionally and providing practical solutions to services. Who inspires you? The patient representatives and volunteers who give up their time to champion the health of others inspire me.
We have lots of different individuals participating in the Alliance. Could you sum up you role within the Alliance? I work closely with cancer services commissioners and quality improvement managers and can help shape future plans and innovations as well as bringing knowledge about cancer services from across the North West. I’m also a huge champion of data collection and demographic
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Brian Hixson Patient and Carer Representative Who are you and what is your day job? My name is Brian Hixson and I am a retired Psychiatric Social Worker. Could you tell us why you agreed to become part of the Alliance? Apart from being invited by Mr Heyworth I am convinced that the way forward is teamwork rather than the old hierarchical ways. I was part of a struggle in the 1970s to establish multidisciplinary team working in a traditional psychiatric hospital. Once it was established it began to show very positive results for our patients and even most of the old guard staff were won round. The Alliance is part of a similar movement where the value of teamwork is more than the sum of the constituent parts. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? The role of Patient participation is a late entry into multidisciplinary working. For a long time resisted by the professionals who liked to think they knew best but who are now starting to be recognised as a vital part of the whole process. My cancer diagnosis was in 2003 and after
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radiotherapy and salvage HIFU I have found enormous value in support groups which gave information not supplied by the professionals. Patient Reference Groups then developed from this and are now becoming acknowledged for making a unique contribution. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Part of the developing process is recognition of LGBT requirements which are the same as everyone else but with their own differences. This is similar to some of the cultural differences which are now generally being taken on board. The big obstacle remains in many cases for LGBT people to be confident to assert their identity and for professionals not to be squeamish about recognising we are all varied sexual beings (including themselves!) What do you think is the biggest challenge for the group? I think the biggest challenge will be to stop the establishment from dragging its feet and clinging on to the old hierarchies. There are still a few instances of cultural and/or religious prejudices which unprofessionally pass judgement on some patients. Who inspires you? I am inspired by professionals who are becoming secure enough to abandon their “fortress mentality� e.g. Dr. Wendy Makin (Associate Medical Director at The Christie and
Director for Living with and Beyond Cancer at Manchester Cancer) and by patients like Mark Davies who question and resist the easy production line mentality and assert their own individuality.
Melody Holt Project Development Manager, Roy Castle Lung Cancer Foundation Who are you and what is your day job? Melody Holt: Project Development Manager, Roy Castle Lung Cancer Foundation Could you tell us why you agreed to become part of the Alliance? I agreed to become involved to ensure that both Lung Cancer and Smoking Cessation (sometimes as separate issues) would have representation within the Alliance. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? Roy Castle Lung Cancer Foundation are able to offer support and advice in a variety of ways. We would like to see LGBT focussed smoking cessation projects as well as looking at any gaps in lung cancer diagnosis within LGBT communities.
If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Remove any barriers that prohibit patients receiving a complete service as they should, throughout their whole cancer journey. What do you think is the biggest challenge for the group? Sustaining membership of those who can make a difference. Who inspires you? People who are experiencing a cancer journey.
Ben Heyworth Macmillan LGBT Strategy Manager, The Christie NHS Foundation Trust Who are you and what is your day job? Ben Heyworth, Macmillan Survivorship Network Manager at The Christie and also the Macmillan LGBT Strategy Manager for the LGBT Cancer Support Alliance. Could you tell us why you agreed to become part of the Alliance? I was the initial instigator and one of the founding members of the Alliance.
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We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I chair the LGBT Cancer Support Alliance meetings, and am ultimately responsible for the Alliance. Through consensus with members and wider consultation with patients and carers, I ensure that we have a comprehensive programme of work which is being supported and delivered by members of the Alliance. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? I would like to see all members of the LGBT community affected by cancer having the best possible outcome and the best experience of care, free from real or perceived discrimination and heteronormative assumptions. What do you think is the biggest challenge for the group? A great challenge will be overturning deep rooted, conservative views amongst health care professionals around the need for cultural change with organisations – enabling us to tackle homophobia, discrimination and a lack of awareness around the needs of LGBT people and cancer. Also, continuing to find adequate funding to maintain the group and undertake projects. Who inspires you? Individuals who are able to communicate incredibly complex ideas in a clear, engaging and entertaining manner, whether it be an expertly
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delivered university lecture, a well presented television programme or at a health and social care conference.
Natalie Williams Health Professional Engagement Facilitator, Cancer Research UK Who are you and what is your day job? I’m Natalie Williams, and I work for Cancer Research UK as a Health Professional Engage Facilitator in Bolton, Wigan, Chorley and South Ribble and Greater Preston. Could you tell us why you agreed to become part of the Alliance? I became part of the Alliance whilst working for NHS England as Quality Improvement Manager right back in the early days, and being drawn into it by Ben. I worked as a Public Health Specialist in a Public Health Sexual Health Team for 6 years where I established sound links with the LGBT Foundation and I’ve maintained solid links with them since. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? My role within the Alliance has and continues to be a varied one. I helped develop the business case from an NHS perspective for the Alliance Project worker. I’m now nearing the end of my MSc dissertation which is
an exploration into the experiences of trans women and prostate cancer services. So my role at the moment is keeping everyone abreast of where things are up to and planning how and where to share the findings of the study. The Alliance have supported me in a number of ways, linking me to other research projects and trans women support groups. For me, the alliance is a two way relationship. You get out of it, what you put into it. I’ve had the pleasure of meeting some amazing people with the same shared vision of wanting to improve cancer outcomes for the LGBT population and that shines through everything we do. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Prostate cancer awareness, education and information for trans women and ALL health care professionals!!! What do you think is the biggest challenge for the group? I think the biggest challenge for the group is raising the profile and needs of trans people in the current climate of budget cuts and refined priorities. Who inspires you? Martin Wells inspires every day. His commitment to improving cancer experiences for LGBT community and creativity is inspiring.
Richard Hunt Associate Macmillan Development Manager Who are you and what is your day job? I’m Richard Hunt and I’m an Associate Development Manager for Macmillan Why did I agree to be part of the alliance? Macmillan Cancer Support has a vision to support all people affected by cancer. I was involved with the LGBT alliance from its early days. I saw the importance of developing a group of People Affected by Cancer or services that can reach out to the LGBT community. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I am the main point of contact for Macmillan within this group. My role has been to help fund a project to support this group and help drive the work of this group to reach to a national level. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? I would like to see the experiences of healthcare vastly improved for LGBT people and not feeling discriminated against in their experience of healthcare.
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What do you think is the biggest challenge for the group? This is a small group trying to make a big difference! Who inspires you? Sorry to be obvious but Rosa Parks has always been an inspiration, where one person can drive huge changes.
Martin Wells Patient Representative & Co-Founder of “Out With Prostate Cancer” Who are you and what is your day job? Martin Wells – a man with Prostate Cancer, self-employed and co-founder of “Out with Prostate Cancer” Support Group (the UK’s first support group for gay and bi men and trans women with prostate cancer). Could you tell us why you agreed to become part of the Alliance. The LGBT Cancer Support Alliance came about from the work I have been involved with over the past three years with the “Out with Prostate Cancer” Support Group. I wanted to continue ‘pushing the envelope’ and ‘having real conversations’ for gay and bi men and trans women who have prostate cancer and don’t seem to have a voice
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in the mainstream. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? As a patient, a gay man with prostate cancer, and chairman of a support group for gay and bi men and trans women with prostate cancer, I believe I can offer a unique point of view and help steer policy from the patients perspective. I bring my skills as a videographer and social media expert to help promote the messages of the Alliance. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Having real conversations - for a change! What do you think is the biggest challenge for the group? Being clear about what quantitative data is needed and then collected to support qualitative or anecdotal evidence. Who inspires you? The guys and girls who sell “The Big Issue”.
Claudia Carvell Women’s Programme Co-ordinator Who are you and what is your day job? My name is Claudia and I’m the Women’s Programme Coordinator at LGBT Foundation. I run the specialist programme of work for lesbian and bisexual women. Could you tell us why you agreed to become part of the Alliance I felt it was important for me to be part of the Alliance because it’s a vital area of specialist work that requires the support of professionals and individuals that have cultural competency around LGBT identities. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? It’s my passion to raise awareness of the interests and needs of lesbian and bisexual women across the sector. For example, I have recently become part of the Alliance’s “Sexual Dysfunction” work where I will be championing the experiences of lesbian and bisexual women. If you could make one change to improve the experience of cancer for the LGBT community, what would it be?
To have services that catered towards the intersectional identities of LGBT people so that they could experience effective ‘person-centred care’. This in itself would require that we ask the right questions, rather than rely on assumptions about a person’s identities and experiences. What do you think is the biggest challenge for the group? I think the biggest challenge is actually highlighting those intersectional perspectives that highlight how LGBT people are not a homogenous group. Often in the fight for visibility, we feel the need to prioritise our similarities rather than appreciate our differences. Who inspires you? (doesn’t have to be LGBT specific) Non-judgemental, down-to-earth attitudes inspire me most.
Laurence Webb
Pride in Practice Co-ordinator Who are you and what is your day job? I’m Laurence Webb and I’m the Pride in Practice Co-ordinator at LGBT Foundation. Pride in Practice is a quality assurance and support service for GP Practices and their lesbian, gay, bisexual and trans patients – simply put I help GP Practices to make their services more inclusive to LGBT people and I help LGBT people to know which GP Practices will understand their specific health needs.
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Could you tell us why you agreed to become part of the Alliance Working within a Primary Care context I often come across health professionals who don’t realise that cancer can be a completely different experience for an LGBT person and that we have specific needs, concerns and questions that are not always met by mainstream services. Health professionals want their services to be as inclusive as possible and I want to support them to be able to implement this by bringing together Pride in Practice’s primary care expertise and the expertise of the Alliance, especially embedding the voices of LGBT people who have experienced cancer to make sure that their needs are understood and better able to be met. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I advise on matters specifically relating to GP Practices and Primary Care services and am involved in three workstreams: Education for Primary Care Professionals, Services for Trans Patients, and Sexual Orientation and Gender Identity Monitoring. My primary role is as a facilitator/trainer. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? Comprehensive sexual orientation, gender identity and trans status monitoring across all cancer services. We are consistently limited by the fact that because of a lack of monitoring,
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there is little data or evidence out there about LGBT people’s experience of cancer services. We know that if people are not counted, their needs often don’t count and we need to start counting so that we can make real, tangible improvements for LGBT people. What do you think is the biggest challenge for the group? The LGBT community is a vast and diverse group of people with different backgrounds and different experiences and many of us also have another minority identity; we may be disabled, from a minority ethnic background, have a faith or religion, or be going through the immigration or housing process. Our biggest challenge is to take a leaf out of Audre Lorde’s book and make sure we understand that we cannot make cancer a single issue struggle because we do not live single issue lives. Who inspires you? (doesn’t have to be LGBT specific) Marsha P. Johnson, who helped found the gay rights movement as we know it today at the Stonewall Riots and who dedicated her life to supporting LGBT people and campaigning for justice for trans women, drag queens, people living with HIV, sex workers and those living on the streets.
Tara Hewit Equality, Diversity and Inclusion Lead for University Hospitals of South Manchester Who are you and what is your day job? My name is Tara Hewitt and I work as the Equality, Diversity and Inclusion Lead for University Hospital of South Manchester NHS Foundation Trust (UHSM). My role involves advising senior leaders on our statutory and contractual compliance in relation to Equality and Human Rights and leading on the development of quality and improvement initiatives that will support the valuing of diversity and promoting inclusion across the organisation. Could you tell us why you agreed to become part of the Alliance? I believe that equalities work needs to be focused towards reducing specific health inequalities and improving health outcomes for patients. The best way to create sustainable and effective improvements in the delivery of services is to identify opportunities for effective partnership working. I was really excited by the prospect of health providers, third sector organisations and other public bodies coming together to work with the LGBT community addressing health inequalities.
We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? My role within the alliance has four main elements to it. I ensure projects are designed to meet the operational needs that exist within the context of a large hospital environment. I am a point of contact, bridging the gap to other key health professionals working within my own organisation and across the wider health networks. I bring my wider Equality and Human Rights knowledge as a professional working person in this. Finally, as a trans and bisexual woman, I bring my lived experience to the table. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? I believe every contract that is commissioned in relation to cancer services should include a SMART health inequalities reduction target linked to a protected characteristic. This target supports NHS organisations in meeting its statutory duty under the Health and Social Care Act to reduce health inequalities and also leads to targeted projects that improve the overall health care for the local LGBT community. Who inspires you? Hillary Clinton, as one of the world’s leading women she has overcome so many barriers and challenges in her life to get to where she is today and right now she has the potential to make history as the first woman to be President of the USA. Her dedication to
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equality and human rights has been a shining light through a time in the USA where oppression and discrimination is still common place. I hope in the future her legacy and the legacy of other diverse and inspirational role models around the world will be a place where all diversity is valued and inclusion is “just how things are done”.
Louie Stafford Trans Programme Coordinator Who are you and what is your day job? My name is Louie and I’m the Trans Programme Coordinator at LGBT Foundation. I run a specialist programme of work for the trans community. Could you tell us why you agreed to become part of the Alliance I felt it was important for me to be part of the Alliance because it’s an area of work that we know disproportionately effects the trans community. Trans people face a multitude of health inequalities as a result of stigma and transphobia creating barriers to accessing many services, including screening, diagnosis and cancer care. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I see it as my role to raise awareness of the interests and needs of trans
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people across the sector. I want to share knowledge and my personal experiences in order to educate others on how to sensitively and effectively engage with the trans community. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? To have screening services that are safe for all LGBT people to access and that trans people have the same level of care as everyone else. This requires us to understand trans and non-binary people’s health needs. What do you think is the biggest challenge for the group? I think the sheer scale of the issues involved. This is an ambitious and large group of people and it is my hope that we can effectively influence change through partnership and learning from each other, not an easy task. Who inspires you? People who are solution focused reflective. People who are willing to make sacrifices and put the aims of a group, community they work for before themselves.
Nick Hulbert-Williams Coaching Psychologist and Professor of Behavioural Medicine
Who are you and what is your day job? Nick Hulbert-Williams - I’m a Coaching Psychologist and Professor of Behavioural Medicine. My main job is at the University of Chester where I’m director of the Chester Research Unit for the Psychology of Health (CRUPH) but I also run a coaching psychology practice and consultancy business (Live Now Ltd.) with my partner, Lee. Could you tell us why you agreed to become part of the Alliance Because the work of the Alliance is hugely important! As a researcher, I’ve been working in cancer care for over a decade now. My specialist area of research is on the psychological aspects of cancer care, and despite great progress, much of what we know is based on a really limited participant demographic. Equality and Diversity are important issues, and that goes for all aspects of cancer care — right from research through to front-line health services. Our recent research has shown substantial inequality in the patient experience and satisfaction with care received between heterosexual, gay, lesbian and bisexual patients, and we need to change that. We have lots of different individuals participating in the Alliance. Could you sum up your role within the Alliance? I guess I see my role as bringing a
researcher perspective to the group. Research is a powerful tool to document both what’s happening here and now in cancer care, and as a tool for change for driving future development to improving cancer care for patients who are LGBT. If you could make one change to improve the experience of cancer for the LGBT community, what would it be? For health professionals to provide the best care possible, they have to have the knowledge and skill to provide patient-centred care. If they don’t know the sexual identity of their patients, then they simply don’t have enough knowledge to do this properly. I would like to change this — we need to break down communication barriers from wherever they exist if we are to improve the cancer experience for the LGBT community. What do you think is the biggest challenge for the group? That there is so much work to be done. But challenging or not, I don’t believe that any of it is impossible. Any progress that the group can make to improve the cancer experience for this community will be worthwhile. Who inspires you? Perhaps I’m too easily inspired, but there are too many people to mention! I like life to be exciting so I try to surround myself with people who are passionate, excited by life, and willing to go that extra mile to improve the world in many different ways. That’s where I draw my inspiration from I think.
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LGBT CANCER SUPPORT ALLIANCE Twitter: @LGBTCancerSA