Evaluation of LGBT Cancer Support Alliance Outreach Activity at Sparkle and Pride 2017 Who was involved? This piece of work was a co-production between members of the LGBT Cancer Support Alliance, which has expanded in 2017 to include representatives of local screening programmes. The work also built on the earlier successes of the Alliance’s Trans Cancer Awareness Event in March 2017, which included input from Manchester City Council and Action for Trans* Health.
Identified Need Review of literature showed a lack of existing resources which include or bespoke resources which specifically address the LGBT community around screening. Anecdotal evidence and recent studies suggest that screening uptake is lower amongst the LGBT community. LGBT people are sometimes given misinformation by other community members or healthcare staff, for example lesbian and bisexual women being told that they do not need cervical screening. Intended Outcomes ● To create a space for informal but meaningful conversations around screening at Sparkle and Manchester Pride ● To co-produce appealing and useful resources for the LGBT community using expertise from members of screening programmes and input from existing Alliance members ● To recruit new patient representatives for the LGBT Cancer Support Alliance and Greater Manchester Cancer Champions from the LGBT community ● To collect some broad demographic data during discussions for reporting and evaluation purposes ● To take forward any learning from working together on a multi-agency project, including ideas on how to better engage with the LGBT community and where to refer people for more information or support. Outputs Developed A manned stall at each event featuring: ● LGBT Cancer Alliance members on-hand to provide advice, alongside the expertise of volunteers from the screening programmes ● A short screening quiz to be completed verbally, featuring LGBT specific content ● A printed hand out featuring screening advice for LGBT people ● Other relevant printed hand outs and freebies from the screening programmes ● A chance to leave your details for further follow-ups and to sign up to be part of the LGBT Cancer Support Alliance and a Greater Manchester Cancer Champion
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â—? A social media campaign to support the events The figures In-depth Interactions totals: Sparkle: 176 people Pride: 84 people Total across both events: 260 people
Breakdown of Demographics Note: Demographic information captured where possible during discussions. Gender Identity Man / Trans man Sparkle
29
Pride Totals
Woman / Trans woman
Nonbinary
In another way
Not stated
60
4
3
1
48
93
0
0
1
77
153
4
3
1
We engaged with around twice as many people who defined as a woman or trans woman as those who defined as a man or trans man. 4 individuals defined as non-binary. Is you gender identity the same as assigned at birth? (Trans Status) YES
NO
Not stated 5
Sparkle
39
46
Pride
65
11
3
Totals
104
57
8
Around a third of individuals who responded to this question stated that they do not identify with the same gender they were assigned at birth. Sexual Orientation
2
Gay
Straight
Lesbian
Bisexual
Don't want to disclose 13
Sparkle
14
19
12
Pride
27
17
30
7
1
Totals
41
36
42
23
14
16
Nature of queries Lifestyle
Sparkle
Signs and Symptoms
40
Undiagnosed symptoms
81
2
24
42
1
64
123
3
Screening
125
Risk Reduction
Comms with GP
Cancer Genetics
Emotional support
17
3
2
5
67
8
0
5
3
192
25
3
7
8
Pride Totals
The figures show that most conversations were around screening and signs and symptoms, our intended aim. Contacts to follow up Type of follow up
Sparkle
Pride
Totals
Info Sheet
18
Alliance Info
11
Bowel Screening
19
Cervical Screening
14
Breast/Chest Screening
17
Cancer Champions
11
Other follow up
12
22 20 24 22 25 13 13
40 31 43 36 42 24 25
Stories Discussions at the stall prompted many who were having worries about screening to go to their GP for further discussions:
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Trans man having further investigation into breast. Gave support on this and also info about genetics as high incidence of breast cancer is family - advised to raise with GP Person who is within cervical screening age but not heard of the programme - will go to GP Partner of a woman living with breast cancer - interested in screening but did not want to wait to have info sent - had access to HCPs and plans to talk more to them A few visitors to the stand wanted to discuss family members who are affected by cancer: Trans person who had cared for father who died of prostate cancer and ex-partner who had a brain tumour but is now in remission. Gave some emotional support and offered one to one if needed in future. Very unhappy that mother ill with cancer - has a Macmillan nurse but not visited - advice given to use Cancer Information Centre plus Maggie's. And smoking was a hot topic at Pride: Partner died recently of lung cancer with late diagnosis - he had smoked since age 13. Worried about a lingering chest infection - over 3 weeks plans to go to GP - doesn’t smoke (passive smoker). General Public, smokes - has been a 'serial quitter'. Thinking about it again. Post-event feedback from Alliance members ● Both events proved to be useful forums for screening programmes to target information towards the LGBT community. ● The quiz worked well as an informal way to ‘test knowledge’ and impart correct information. ● The set-up at Sparkle in the LGBT Foundation Health Hub was bright and by a main thoroughfare, which resulted in lots of interactions. The Expo at Manchester Pride proved more difficult, being dark and out of the way. ● People at Pride came to chat about more complex issues, resulting in longer conversations. This could be why the numbers were lower for the Pride activity. ● Working together on a multi-agency project opened up new possibilities for learning and opportunities for referring patients to other services.
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Conclusion and next steps This work has demonstrated the need for cancer expertise and advice at Sparkle and Manchester Pride, as the need for information and support is more extensive than could be catered for at a general health stand. The next steps from this project were agreed by the group as: -
Screening services should look to further incorporate learning from this project. Screening services should monitor sexual orientation and trans status to investigate rates of uptake for screening programmes. Future work at the Health Hub at Sparkle 2018 and Pride’s Big Weekend could investigate the impact we have had and/or build on the success of this year’s campaign
Appendix A. Sparkle Screening Quiz B. Pride Screening Quiz C. Screening Information Sheet
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TRANS CANCER SCREENING QUIZ 1. The UK has cancer screening programmes for three areas of the body. What are they? Answer: Bowel, breast/chest, cervix (There isn’t a national screening programme for the prostate. There is an informed choice programme called ‘Prostate Cancer Risk Management’ for people with a prostate aged 50 or over who raise concerns with their GP)
BOWEL CANCER SCREENING 2. After which birthday will you get your first screening kit through the post? Answer: 60th - a kit is sent every two years until the age of 74. 3. Can the kit help to detect the signs of bowel cancer at an early stage, before any symptoms appear? Answer: Yes. It is looking for tiny traces of blood that can be an early sign. If bowel cancer is detected at an early stage, before symptoms appear, it's easier to treat. 98% of people with bowel cancer survive if caught early enough. The kit could save your life! (Blood in your poo could also be from an undiagnosed bowel condition, a bleeding polyp (polyps can develop in to cancer), digested animal blood (food) and piles. This would be checked out by further investigation (colonoscopy). An additional one-off test called bowel scope screening is gradually being introduced in England at the age of 55.)
BREAST/CHEST SCREENING 4. Can anyone develop breast/chest cancer?
Answer: Yes
5. What is the national age range for breast/chest screening (mammogram) - 40-70 45-65 or 50-70? Answer: 50 - 70 (Some areas like Manchester are part of a trial of an extended age range, 47 – 73.)
6. If you have breast tissue, are you recommended to go for screening? Answer: Yes (If you think you may be eligible for screening and have not received an invitation to attend then speak to your GP) 7. If you are a trans woman taking hormones are you advised to have screening? Answer: Yes 6
CERVICAL SCREENING 8. If you have a cervix, are you advised to have cervical screening? Answer: Yes 9. What age does cervical screening start in the UK – 20, 25 or 30? Answer: 25 (The age range is 25-64. Every 3 years age 25-49 and every 5 years age 50-64.)
10. Cervical screening is the best way to detect early changes to the cervix. True or false? Answer: True. Screening prevents many cases of cancer. INVITATIONS TO SCREENING 11. You can choose which gender you are registered under in the NHS system without a Gender Recognition Certificate. True or false? Answer: True. (Your GP practice may include trans status in their monitoring. All GPs in Manchester signed up to ‘Pride in Practice’ are encouraged to do this.)
12. You are a trans man or non-binary person assigned female at birth and your record with your GP shows you as male, will you be routinely invited to breast and cervical screening? Answer: No You may appear on some IT systems but it’s always best to check. If you would like a mammogram or cervical screening, talk to your GP.
13. You are a trans woman or non-binary person assigned male at birth and your record with your GP shows you as male. Will you be invited to breast screening? Answer: No If you are on long term hormone therapy, you may want to speak to your GP about having a mammogram.
14. If you are a trans woman and your record with your GP shows you as female. Will your GP have conversations with you about prostate cancer? Answer: No If you are over 50 and want to talk about the informed choice programme called ‘Prostate Cancer Risk Management’ you may want to raise this with your GP.
It’s important that you always feel you are treated with dignity and respect at any point in screening services. 7
MANCHESTER PRIDE CANCER SCREENING QUIZ - Answers 1. After which birthday will you get your first bowel cancer screening kit through the post? Answer: 60th - a kit is sent every two years until the age of 74.
2.
Can anyone develop breast/chest cancer?
3.
What is the national age range for breast/chest screening (mammogram) 50-70
4. to
If you have breast tissue, are you recommended go for screening? Yes
Yes
(If you think you may be eligible for screening and have not received an invitation to attend then speak to your GP)
5. If you are a trans woman taking hormones are you advised to have breast screening? Yes 6.
If you have a cervix, are you advised to have cervical screening? Yes – A trans man will still have a
cervix unless they have had a total hysterectomy. A trans woman will not have a cervix. Lesbian and bisexual women should be screened.
7. What age does cervical screening start in England – 20, 25 or 30? 25 (20 in Wales and Scotland) (The age range is 25-64. Every 3 years age 25-49 and every 5 years age 50-64.)
8. Cervical screening is the best way to detect early changes to the cervix. True or False? True
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9.
Is there a national screening programme for Prostate Cancer? No, anyone with a prostate aged 50 or
over can raise concerns with their GP and access an informed choice programme
10. Are Trans women at risk of prostate cancer? Yes – the prostate gland is not removed during surgery
11. What are the signs and symptoms of prostate cancer? Prostate cancer doesn’t normally cause symptoms until the cancer has grown large enough to put pressure on the urethra, at which point problems such as urgency, a feeling that the bladder is not empty, hesitancy, and straining are common.
12. You can choose which gender you are registered under in the NHS system without a Gender Recognition Certificate. True or False? True 13. You are a trans man or non-binary person assigned female at birth and your record with your GP shows you as male, will you be routinely invited to breast and cervical screening? No – always check
14. Lesbian and bisexual women will automatically get an invite for cervical and breast cancer screening? True or False? Yes, everyone registered as female will receive an invite every three years from the age of 25
15. If you are a trans woman and your record with your GP shows you as female. Will your GP have conversations with you about prostate cancer? Highly unlikely, you may need to raise this with the GP yourself.
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Screening Information Sheet The UK has cancer screening programmes for three areas of the body: bowel, breast/chest and cervix.* Find out if you are eligible for each programme below:
Bowel screening
You get your first home testing kit through the post after your 60th birthday. Then every two years until the age of 74. The test can help to detect the signs of bowel cancer at an early stage, before any symptoms appear. This means it’s easier to treat and there’s a better chance of surviving it. 98% of people with bowel cancer survive if caught early enough. The kit could save your life!
Every person from the LGBT community will be eligible to access this programme.
Breast/chest screening
The national age range for breast/chest screening (mammogram) is 50-70yrs. Some areas, like Manchester, are part of a trial of an extended age range, 47-73yrs. If you have breast tissue, screening is recommended. If you are a trans woman taking hormones, you are advised to have screening.
Anyone from the LGBT community who has breast tissue is eligible to access this programme (including trans and non-binary individuals).
Cervical screening
If you have a cervix, you are advised to have cervical screening. The age range for cervical screening in the UK is 25-64yrs. Cervical screening is the best way to detect early changes to the cervix. It prevents many cases of cancer.
All trans and non-binary individuals with a cervix are eligible to access this programme. Lesbian and bisexual women should attend screening.
*There isn’t a national screening programme for the prostate. There is an informed choice programme called ‘Prostate Cancer Risk Management’. All gay and bisexual men and trans or non-binary individuals with a prostate aged 50 or over can raise concerns with their GP to access this programme.
Invitations to screening
You can choose which gender you are registered under in the NHS system. You don’t need a Gender Recognition Certificate. The choice is usually ‘Male’ or ‘Female’ or ‘NonBinary’ and your GP practice may include an option to record trans status (all GPs in Manchester signed up to ‘Pride in Practice’ are encouraged to do this). If you are a trans man or non-binary person assigned female at birth and your record with your GP shows you as male, you won’t be invited to breast and cervical screening. Speak to you GP if you would like screening.
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If you are a trans woman or non-binary person assigned male at birth and your record with your GP shows you as male, you won’t be invited to breast screening. If you are on long term hormone therapy, you may want to speak to your GP about having a mammogram. If you are a trans woman or non-binary person assigned male at birth and your record with your GP shows you as female, your GP will not have conversations with you about prostate cancer. If you are over 50 and want to talk about the informed choice programme called ‘Prostate Cancer Risk Management’ you may want to raise this with your GP.
It’s important that you always feel you are treated with dignity and respect at any point in screening services. If going for screening is difficult for you, speak to services. They can provide a more suitable time, eg. first of the day, or a longer appointment to allow time to remove binders or deal with emotional aspects. For more information: National Bowel Screening Programme 0800 707 60 60 Screening For Life Transgender Information www.screeningforlife.wales.nhs.uk/transgender-information LGBT Foundation Helpline 0345 3 30 30 30 Action for Trans Health info@actionfortranshealth.org.uk Macmillan Information & Support Service, Manchester City Council 0161 227 3727 LGBT Cancer Support Alliance On Twitter @LGBTCancerSA or our Facebook group Jo’s Cervical Cancer Trust https://www.jostrust.org.uk/ Greater Manchester Bowel Movement http://www.gmmovement.co.uk/ Greater Manchester Health and Social Care Partnership http://www.gmhsc.org.uk/
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