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Cervical screening is one of the best ways to prevent cervical cancer, but there are a wide range of factors which can make attendance hard. For LGBT+ communities there can be additional challenges. On Wednesday 24th March we joined together with the All-Party Parliamentary Group for LGBT+ Global Rights for a roundtable entitled, “Roundtable on cervical screening in LGBT+ communities: Exploring the barriers and identifying opportunities to reduce inequalities.”
We facilitated this roundtable in order to discuss the specific experiences of cervical screening in LGBT+ communities, explore the barriers and stigmas that exist, and identify opportunities to improve access and reduce inequalities.
Our expert speakers included: Jacob Bayliss, the CEO of Switchboard; Dr Alison Berner, Clinical Research Fellow in Medical Oncology and Specialist Registrar in Gender Identity; Alex Davies-Jones MP; Baroness Barker representing the APPG On LGBT+ Global Rights; and Jo’s Cervical Cancer Trust media volunteer Seb.
Jacob Bayliss, the CEO of Switchboard, discussed the need to ensure everyone with a cervix has accurate information about cervical screening and feels included in the cervical screening programme. Misconceptions and inaccuracies can stem from gaps in understanding about HPV, risk, and transmission. Education for health professionals, in addition to literature which includes the LGBT+ community is essential to this.
New UK-based research presented by Dr Alison Berner found that more than half of a sample of trans and/or non-binary people with a cervix have never attended cervical screening.
Specific barriers to screening for this community include: gender dysphoria from cervical screening and from the associated correspondence, physical pain, technical difficulty with the procedure, stigma and discrimination, gendered information, and providers that fail to encourage screening to all people with a cervix.
Previous studies have found that the speculum was the most off-putting aspect of cervical screening for this community [Reference: McDowell et al. (2017) LGBT Health]. A potential solution was presented by Dr Alison Berner from her research, “A Survey of Attitudes to Cervical Cancer Screening in Trans Men and Non-binary People in the UK”. HPV self-sampling could offer an option for many who feel unable to attend cervical screening, with half of participants in her study saying they would prefer this. Dr Berner called for a dedicated HPV self-sampling pilot for this community, to ensure that as and when it is introduced into the cervical screening programme their needs are met.
Jacob shared how positive experiences of healthcare – like cervical screening – can have a knock-on effect and make people more inclined to seek help or access other services. The positive impact of inclusive conversations and inclusive care can shape people’s health-seeking behaviour for years to come.
Seb shared his experience of attending cervical screening as a trans man. He spoke about the need to establish your own boundaries and share your needs with healthcare professionals. However he also shared this can take its toll and can be “exhausting”. Seb asked healthcare professionals to learn how they can better support the trans population, for example asking for accurate pronouns, rather than waiting for patients to do so.
Jacob reminded us all of the importance of gathering accurate data. For services to best serve communities, they need accurate data in order to inform and shape how they work. It is crucial for them to know who they’re talking to and also who they are currently failing to reach.
Our own Information Manager, Imogen Pinnell, shared our concerns that the current IT system used by the screening programme is not fit for purpose and presents a barrier to those who are not registered as female with their GP and have a cervix. Invitations to cervical screening are only generated to those registered as female, with no solution in the current central screening IT system to invite trans men or non-binary people with a cervix whose records show them as Male. This leaves responsibility with individuals to understand and feel able to request an appointment, which presents many challenges.
A key question raised by Jacob was, “When someone walks through the door of a practice, what message are they being given?” He called for healthcare services to make it clear that they are inclusive and safe spaces. This was reiterated by Baroness Barker, who has previously written about her experience of attending cervical screening as a lesbian woman. Initiatives like the NHS Rainbow Badge, to looking at the imagery and messaging used in resources, can help make a service feel more welcoming and inclusive. Crucially, an inclusive service or resource cannot be created without the group it is being created for involved from the outset. So listening, asking questions, and co-designing resources is essential.
Alison Berner called for greater education for healthcare professionals at undergraduate and postgraduate level, and for cultural sensitivity training that extends beyond the current Diversity and Equality offering to be given to all staff in healthcare settings, including receptionists. As Seb shared, “everyone’s body deserves care, love, and health.”
If you have any questions, please do contact Imogen Pinnell (Jo’s Cervical Cancer Trust – Information Manager): [email protected]