Meet the lgbt cancer taskforce reference group members

I come from both a Pakistani and LGBT point of view, which is a double-edged sword! I would like to influence from a diversity perspective – no one size fits all! In my experience, the LGBT itself hasn’t always been very culturally inclusive. I feel that a BME voice is needed, and the issue of stereotyping to be addressed, and how individuals and different cultures approach gender and sexuality, including people affected by cancer and health professionals. I have experienced some positive outcomes, which have given me the confidence to talk about cancer. I am a carer for my mum so sometimes forget what my own interests are, but I like Bollywood dancing, and going out for meals to relax, and having quality time with my mum.

Email: khan.hameed796@gmail.com

I live in Manchester with my partner Emily, and two-year-old girl. In 2015, I had my diagnosis and underwent treatment, and got the all clear last year. I was treated under the Christie Hospital and received 95% good care, but did feel there were a few areas that needed improvement. I joined a focus group looking at information for LGBT people, and from there joined the LGBT Taskforce as I felt that I wanted to give something back to Macmillan. I was nervous joining the Taskforce, as I’d had mainly good experiences, however, I was assured I would still be able to contribute. Having cancer with a young child presented its own challenges – and treatment brought up issues around fertility. I also have cats, enjoy swimming, and work at the University of Manchester.

Email: kathyleadbitter@hotmail.com

I live in West Yorkshire in a village called Holmfirth (which some of you may remember as the setting for Last of the Summer Wine!) with my cats, and the neighbouring sheep and cows. I joined the Taskforce in November 2015, after my partner died in the August, from bowel cancer. The care my partner, and I, experienced, was supportive, but the communication we received lacked any LGBT acknowledgement (assuming my partner was my wife, not using the word husband, referring to us as friends). I received excellent bereavement counselling, and have now started a counselling course. I am also undertaking a scoping exercise, scoping the need for and gathering evidence around the need for a more inclusive environment.

Email: oboe57@gmail.com

I do some work in the area of sexual health for LGBT people, particularly older LGBT people. I have been involved in NHS England stakeholder engagement, public engagement and specialised commissioning, from a trans point of view. I am working to address access to healthcare services for trans people and their experiences – there are issues around awareness and confidence accessing services in particular. I’ve been involved in a HEE pilot project, looking at competencies and training for staff as there is a gap in the existing training. However, we do seem to be pushing at an open door, which is really good. I heard about the LGBT Taskforce at an event in Manchester, shortly afterwards my wife was diagnosed with cancer. She had been diagnosed with breast cancer before, twenty years ago – when we first went through the experience I was Stephen, and this time I am Suzanna, so it was a different experience, which was handled very well, as it should be.

Email: SuzannaHopwood@aol.com

I had a personal and professional interest in joining the LGBT Taskforce. I am part of the Staffordshire scoping project, which is partnered with Macmillan, looking at the unmet needs of LGBT people with cancer. It’s a two year project, and we are half way through. We hear people’s experiences, which range from the good to the toe curlingly awful. We will be presenting the stories and our recommendations to commissioners at the end of the project. I have been involved in work with Macmillan for a few years now. I identify as bisexual, and was diagnosed with bladder cancer in 2012 – I also had a little boy at the same time. I had to push for the treatment that I wanted, which was a bit of a battle. It wasn’t an easy option, the treatment, but it was the right one for me. But I had to do my own research and stand up for what I wanted. My treatment brought up questions around fertility, and the assumption was always that I was heterosexual, and doctors were really bad about having conversations around sex and sexuality – communication was poor and awkward! I also have a cat.

Email: jocoulson@disability-solutions.net

This will be my 4th year with Macmillan. I was part of a trans support group and we had a talk about cancer. It really opened my eyes to the lack of awareness in the trans community around cancer. I was asked to support some work being done by Macmillan around cancer information and to be an LGBT health champion. I have since travelled around the country supporting this work. I am also involved in mentoring, advocacy, and support work. I had previously experienced mental health issues, but a new world opened up for me when I started the transition process. When my wife was diagnosed with cancer, I felt that none of the information or communication applied to me. I realised there was a real lacking in the needs of us as a couple and the focus often ended up being on me being trans, and not my wife. In the end, my wife ended up going to the appointments on her own. We did have a great Macmillan nurse, and I wanted to give something back to Macmillan. If I can make someone else’s life easier, I find that quite humbling – I’m putting my head above the parapet for others so no one experiences what I did. I also have a cat called Barbara, who is crazy.

Email: tiernantomlinson@yahoo.co.uk

I'm 63 and a self-employed consultant/facilitator. I've worked for myself for over 20 years and need to work to generate my income. I was diagnosed with prostate cancer 9 years ago, had a radical retro pubic prostatectomy, then 5 weeks of radiotherapy and 2.5 years of chemical castration. My PSA is currently undetectable. I live in Burnley, East Lancashire. I'm in a relationship with a really sweet guy who understands my circumstances. I'm also on the autistic spectrum. I've realised I've always perceived things and my life different to others. I've also had a natural curiosity for finding explanations to things I don't understand. When diagnosed with prostate cancer I started to experience a journey that seemed different to guys who were not gay or bisexual. Having formed "Out with Prostate Cancer� a support group for gay and bisexual men with prostate cancer to help resolve the issues I was experiencing, I wanted to continue this within a wider context. I want to help develop real conversations for a change.

Email: martin.wells@virgin.net

I am a registered BACP Senior Accredited Supervisor of Individuals and Senior Accredited Counsellor with experience of working in busy and pressured environments within the commercial, voluntary, and statutory sectors. My clients are from diverse backgrounds with a wide range of issues, responding to my integrative style of collaborative working, often within a time limited framework. I enjoy working in individual and group settings with compassion, enthusiasm, resilience, humour and creativity. I'm also an author, actor, and sometime fire-eater. I go to the gym when I can, travel (some favourite places have been New York, Rio (where I hang-glided - amazing but terrifying), the Rockies & Vancouver, New York, China, Iceland (yes, the Northern Lights are amazing!!!) the Grand Canyon (which I white water rafted down and camped in - an incredible experience), Cuba, Morocco & the Sahara, hot air ballooning in Turkey, Italy & Sri Lanka. I'm a big Boney M fan, recently completed a diploma in mindfulness and also in shamanic healing, love a good film, cooking a great vegetarian meal (or cake!), watching a great film or curling up with a book to read. I was fortunate enough to recover from testicular cancer 4 years ago, after a brief treatment and surgery, and hugely enjoyed being part of the research project which was stimulating, and supportive. I have experience in health education as an LGBT activist and through work with the Terrence Higgins Trust, and also my work as a therapist. I want to help empower patients to be 'extraordinary patients' survivors and their own compassionate friends, and to educate professionals to embrace the diversity of gender and sexuality to help treat and work collaboratively with patients sensitively, respectfully, and holistically. I have also survived emergency heart surgery and am interested in supporting dual/multi diagnosis patients.

Email: ianlucas021@btinternet.com

I wanted to join the Reference Group because I want to build on some of the skills I have learnt from the Taskforce, also I want to share some of my experiences of cancer, such as the periods of depression, self-isolation, and loneliness, and feeling at hospital appointments like I was not able to talk about these things because of time being so short. I want to explore further my experience as a black lesbian and not feeling safe, being a black women and seeing that fear on other black women's faces because breast cancer is a white women's illness. I want other women to know that we live, I want to do some educational work within the community about looking after ourselves pre and post cancer. I want to continue to work with other people, for me this has been one of the biggest things, learning from each other. I want to achieve less fear, it’s a huge subject area, I want there to be better understanding and training amongst professionals.

Email: pepowell63@yahoo.co.uk