Macmillan Cancer Support and Brighton & Hove LGBT Switchboard today published the findings from recent research, about the experiences and needs of LGBTQ people in Sussex who are affected by cancer.
It provides an insight into how LGBTQ people affected by cancer in Sussex can be best supported and areas where patient experience can be improved. The report is based on findings from a small online survey, several in-depth interviews and two small focus groups with LGBTQ people affected by cancer and healthcare professionals.
The issues raised by participants included a lack of LGBTQ-specific information and support; LGBTQ people being afraid to disclose their sexual orientation or trans status because of fears about homo-/ bi- /transphobia; lesbian women being told they do not need cervical screening; and transgender people not receiving adequate information about the need for cervical and prostate screening.
Research participant Jackie Hutchinson said: “This research into the experiences of LGBTQ people affected by cancer is an important piece of work. Attending the consultation has already improved my experience of accessing healthcare for cancer as a bisexual person, because it gave me a chance to review things, share information and gain perspective. Monitoring of LGBTQ+ people is an important step to improve our experiences of service provision and reducing inequalities in healthcare.”
Recommendations in the report include providing LGBTQ awareness training for all cancer healthcare professionals; develop LGBTQ-specific cancer information resources; and develop LGBTQ-specific peer support groups for those affected by cancer.
Valentine Mulholland, another participant, said: “A cancer diagnosis is already devastating and touches on every part of your life. Providing the support cancer patients need means recognising who they are, including their sexual and/or gender identity and who their significant others are. Whilst the NHS services in Brighton were amazing, I did encounter some issues with a national charity and a hospital outside Brighton that were unhelpful at a time when the last thing you need to do is fight to be recognised. I participated in this research to shine a light on why all cancer healthcare services and providers need to be inclusive of LBGT people.”
Daniel Cheesman, CEO of Brighton & Hove LGBT Switchboard, said: “This is an important piece of research and one that highlights the barriers that LGBTQ people face receiving and experiencing care. Whilst there is so much good work happening with regards to equality, it is disappointing to learn that many people still face significant prejudices and at times when they are most vulnerable. Wrong assumptions are often made about a patient’s sexuality or gender identity and this is very damaging. It is encouraging Macmillan are so open to improving the patient experience for LGBTQ people and we welcome the opportunity to work with them through our successful improving health project.”
Richard Longrigg, Partnership Quality Lead– South East, said: “We’ve gained valuable insight from this work, about the experiences of LGBTQ people living with and affected by cancer. It’s shown what areas to consider to further improve patient experience; and where support and information is required to enable professionals to feel confident identifying specific areas of support relating to a patient, carer or family members LGBTQ identity. We would like to thank all of the participants, both LGBTQ community members and professionals, who volunteered their time to share their personal experiences to help us better understand the needs of LGBTQ people living with and affected by cancer.”
About Macmillan Cancer Support in the Sussex area
Every year, more than 10,000 people in the Sussex area find out that they have cancer. There are at least 48,000 people living with cancer in Sussex, and the sad truth is, this number could increase to an estimated 93,000 by 20303.
One in two people in the UK are likely to get cancer in their lifetime4. Cancer can affect everything, including a person’s body, relationships and finances.
Macmillan Cancer Support provides practical, emotional and personal support to people affected by cancer every year. The charity is there to support people during treatment, help with work and money worries, and listen when people need to talk about their feelings.
In 2016, there were around 200 Macmillan health and social care professional posts, often based at hospitals and in the community in Sussex, to support people with cancer and their families through difficult times. 2,000 people in the county phoned the Macmillan Support Line for information and support. Macmillan mobile information buses were out and about in supermarkets, town centres, faith centres and workplaces in the Sussex area, visited by around 2,100 local people for support. To help with money worries, around £1,460,400 in unclaimed benefits was unlocked for people in Sussex, and 620 people received Macmillan Grants, totalling over £215,000.5
Macmillan receives no government funding and relies on generous donations from the public. People up and down the country show their support for Macmillan – from hosting or attending a World’s Biggest Coffee Morning to running a marathon or giving up alcohol – so the charity can help more and more people affected by cancer every year.
Life with cancer is still your life and Macmillan is there to help you live it. If you want information or just to chat, call 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit www.macmillan.org.uk. To get involved or make a donation please call 0300 1000 200.