Members of the LGBT Cancer Support Alliance

Stoke Pride 2017Survey Report Jo Coulson and Angie Bunn

24th June 2017

INTRODUCTION

The LGBT and Cancer Project is now midway through its scoping exercise to find out more about the experiences and unmet needs of LGBT people affected by cancer. Based at Disability Solutions and working in partnership with Macmillan Cancer Support, the project began in January 2016 and will run until January 2018. The aim is to engage with the LGBT community and collect evidence by way of surveys and questionnaires, patient interviews, public engagement and more.

Stoke Pride is a large, annual, colourful event attended by both the LGBT and straight communities. It is a family-friendly day with activities, entertainment, a wealth of food and drink outlets and stalls to facilitate community engagement for local organisations. Their aim is to celebrate community diversity and learn from each other, increasing compassion, understanding, equality and wellbeing.

This year there was a change of venue. The event moved from its usual location at Northwood Park to the much bigger and more open Hanley Park. There were more stallholders this year than ever before, along with a parade with performers and people marching to represent subsections of the community.

Unfortunately, the Macmillan bus was not available this year, however the LGBT and Cancer Project joined forces with Staffordshire Breast Screening Services and co-hosted a stand. The team had plenty of information, leaflets and people with enough knowledge to signpost. Again, the artificial breasts and testicles were highly successful at attracting interest and subsequently raising awareness of screening and the importance of self-checking.

SURVEY

With the larger venue and higher number of attendees, the team managed to collect 100 survey responses this year. In addition to the questions asked last year about experiences of cancer, the survey included an additional section on smoking habits, with a view to further investigation at a later date. Respondents were again given the option to remain anonymous or to give details for further information and updates about the project. Those who gave email addresses will be added to the project’s mailing list for future e-newsletters.

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RESPONSES

1. HAVE YOU BEEN AFFECTED BY CANCER?

YES 82

NO 18

2. SEXUAL ORIENTATION AND GENDER IDENTITY

Others: “Not sure”, “Panromantic”

GENDER STATUS

3

26

1310

13

15

4 1 2

Sexual orientation

Heterosexual Bisexual PansexualGay woman Gay man AsexualPrefer not to say Other

28

47

4 1 5

Gender Identity

Male Female Trans manTrans woman Non-binary OtherPrefer not to say

Heterosexual 26

Bisexual 13

Pansexual 10

Gay woman 13

Gay man 15

Asexual 4

Prefer not to say 1

Other 2

Male 28

Female 47

Trans man 4

Trans woman 1

Non-binary 5

Other 1

Prefer not to say 0

Other: speculating trans

The LGBT Foundation have published recommended questions for monitoring gender/trans status: http://lgbt.foundation/assets/_files/documents/apr_16/FENT__1459778593_Briefing_Sheet_-_Trans_Status_.pdf

This year saw a marked increase in the number of respondents identifying as non-binary.

3. AGE

4. HOW ARE/WERE YOU AFFECTED BY CANCER?

Patient 10

Carer 1Husband/wife/partner 1

My parent 23Other 45

4

36

812

24

4

Age

16-25 26-35 36 – 45 46 – 60 >61

16-25 36

26-35 836 – 45 12

46 – 60 24>61 4

Others:

Sister (7)

Friend’s mum (1)

Grandparent (17)

Brother (1)

Family member (11)

Friend (4)

Uncle/Aunt (3)

Cousin (1)

The options given on our form did not account for the multitude of relatives and family members. The option for ‘grandparents’ was a glaring omission as the numbers would have been second to parent.

5. HOW LONG HAVE YOU BEEN AFFECTED BY CANCER?

Within the last 6 months 9

6 – 12 months 6

12 months – 2 years 17

Longer than 2 years 43

6. WHAT IS YOUR EXPERIENCE OF LOCAL CANCER SUPPORT SERVICES?

5

7. DO YOU THINK HEALTHCARE PROFESSIONALS HAVE GOOD LGBT AWARENESS AND UNDERSTANDING?

No awareness 5

Poor awareness 37

Good awareness 44

Excellent awareness 2

6

Very poor Poor Satisfactory Good Excellent0

5

10

15

20

25

30

Experience of local cancer support services

No awareness

Poor awareness

Good awareness

Excellent awareness

0 5 10 15 20 25 30 35 40 45 50

LGBT awareness of healthcare pro-fessionals

Very poor 4

Poor 5

Satisfactory 25

Good 20

Excellent 20

8. WHICH OF THE FOLLOWING WOULD BE HELPFUL TO LGBT PEOPLE AFFECTED BY CANCER?

LGBT specific cancer information (eg leaflets) 52

A support group for LGBT people affected by cancer 65

LGBT awareness training for professionals 67

An LGBT point of contact for support / to act on their behalf 59

LGBT therapy / counselling / psychological support 60

Telephone support 46

Internet support 51

Other (suggestions) 0

Respondents chose multiple options with many ticking every box. There were no other suggestions.

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LGBT sp

ecific c

ancer in

formation (e

g leaflets)

A support g

roup for L

GBT people affected by c

ancer

LGBT awareness

training fo

r professi

onals

An LGBT point o

f contact

for support

/ to act

on their b

ehalf

LGBT th

erapy / co

unsellin

g / psyc

hological s

upport

Telephone support

Internet support

Other (su

ggestions)

0

10

20

30

40

50

60

70

80

9. HOW WOULD YOU RATE YOUR OWN AWARENESS OF THE RISKS, SCREENING ISSUES AND EFFECTS OF CANCER ON LGBT PEOPLE?

No awareness 8

Poor awareness 28

Good awareness 44

Excellent awareness 12

8

8

28

44

12

LGBT cancer awareness

No awareness Poor awareness Good awareness Excellent awareness

10. ARE YOU A CIGARETTE SMOKER?

Yes 30

No 65

10. ARE YOU A CIGARETTE SMOKER?

Yes 30No 65

11. HOW MANY CIGARETTES DO YOU SMOKE A DAY?

Less than 5 a day 25-10 a day 910-20 a day 10More than 20 a day 6

12. HOW MANY TIMES HAVE YOU TRIED TO QUIT?

Never 41 or 2 times 153-10 times 6More than 10 times 3

9

8

28

44

12

LGBT cancer awareness

No awareness Poor awareness Good awareness Excellent awareness

32%

68%

Are you a cigarette smoker?

Yes No

13. WHAT ARE THE REASONS YOU SMOKE?

It helps me with nerves 15It helps me to socialize 10For a reward or break at work or home 8Addiction to nicotine 18I enjoy the taste/feel of cigarettes 10It helps me to lose or control my weight 3It helps me to relax 18It helps me to concentrate 10Other 1 - “stupidity”

It helps me with nerves

It helps me to socialize

For a reward or break at work or home

Addiction to nicotine

I enjoy the taste/feel of cigarettes

It helps me to lose or control my weight

It helps me to relax

It helps me to concentrate

Other

0 2 4 6 8 10 12 14 16 18 20

Reasons for smoking

14. WHAT DO YOU THINK WOULD HELP YOU TO QUIT SMOKING?

Products (patches, inhalators, gum, etc) 7An e-cigarette 18Hypnotherapy 5A support group 4

10

Going cold turkey 3Prescribed medication 8Other

COMMENTS

It varies from person to person but some training for awareness for everyone would help

A+++ to the Dougie Mac

Some healthcare professionals are LGBT aware but I think there is a need for greater awareness

The odd conference goes a long way towards sparking interest and getting everyone together

Don’t feel qualified to express an opinion

I used to smoke 35 a day!!

We need to ensure services like the NHS take account of relationships and gender identity

Cancer services are trying their best but the NHS is chronically underfunded

Cancer doesn’t have to be a death sentence anymore

More awareness of trans and nonbinary needed

Good to see this at Pride

All the fucking support straight people get should be available for LGBT

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Products (patches, inhalators, gum, etc)

An e-cigarette

Hypnotherapy

A support group

Going cold turkey

Prescribed medication

0 2 4 6 8 10 12 14 16 18 20

What do you think would help you to quit smoking?

CONCLUSION

The first Stoke Pride scoping exercise was carried out on 9th August 2014 and collected 125 responses. The questions were much more general and answers indicated the overall feeling that there was a need for LGBT specific cancer information and support. The second survey began to explore what that might look like, with overwhelming support for the introduction of LGBT cancer support groups, LGBT psychological support and more/better LGBT awareness training. This year’s survey re-iterates those feelings with the need for training for healthcare professionals being the strongest recommendation again.

There are more respondents to this year’s survey compared to last year’s however fewer respondents added additional comments. Some of the questions on the form were updated slightly (eg ‘homosexual’ became ‘gay man or gay woman’), which reflects the project’s learning and awareness of current terminology. It could be a reflection of the higher numbers of people coming out as trans or non-binary that these were more common this year.

The section on smoking has provided some potentially valuable data. We know that smoking rates are higher for the LGBT community, but also for Stoke on Trent as a region, so there is a double impact. Our survey has shown that 32% of Pride attendees smoke, which is significantly higher than the current national rate of 16.9%1 Smoking accounts for one in four cancer deaths in the UK so this work fits neatly with the project’s aims.

There is potential for further scoping into the causes, barriers and effects of smoking on the LGBT community locally. The LGBT Cancer Alliance in Manchester published a report called Proud 2 Be Smoke Free2 recently, addressing some of these issues. They point out that smoking after receiving a cancer diagnosis is a major health concern. Furthermore, smoking cessation services are limited locally following recent cuts. Given an opportunity to take this work forward, it would seem there are major gains to be made for the improvement of general health and wellbeing as well as cancer outcomes.

Jo Coulson and Angie BunnLGBT & Cancer, Staffordshirejcoulson@disability-solutions.netabunn@disability-solutions.net

1 http://www.bbc.co.uk/news/health-37406105 Smoking rates in England fall to lowest on record2 https://www.surveymonkey.co.uk/r/LGBTSA

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