‘Cancer doesn’t discriminate, but people sometimes do’ – Meet the first ever LGBT and Cancer Programme Co-ordinator

Lawrie Roberts, 31, is an LGBT and Cancer Programme Co-ordinator at LGBT Foundation in Manchester – a role which is entirely funded by Macmillan Cancer Support.

Here he talks to Attitude about what this role is like and how he works to support LGBT people with cancer.

Cancer doesn’t discriminate. No matter where you are from, your background or what your sexual orientation or gender identity is, it affects people from all walks of life, in countless different ways.

Each person affected by cancer has their own set of needs, medical or otherwise, unique to their individual circumstances, their diagnosis and who they are. As a result, care and support for someone living with cancer should be tailored to every individual, taking account of every aspect of their lives.

Yet, we know this is less likely to be the case for cancer patients from lesbian, gay or bisexual communities, and anecdotal evidence from trans communities suggests a similar picture.

This is where Macmillan wants to drive change and ensure that the quality of care that is provided does not discriminate, and I’m privileged to be the first full time worker in the country working solely to explore the unique needs that emerge from the intersection between LGBT identities and experiences of cancer care.

This work has been vital from the start as it has always been very tricky to get a full picture of the experiences of LGBT cancer patients. The main issue is a lack of data, as it is not yet standard practice to ask about someone’s sexual orientation or trans status when they are registered in cancer services.

The knock-on effect of this is that this information is less likely to be used to shape someone’s care (unless you have the confidence to ‘come out’ to your doctor or nurse) and the experiences of LGBT communities as a collective within these services remain invisible.

Furthermore, national patient questionnaires such as the Cancer Patient Experience Survey, which give us key figures on patient satisfaction, have only started to measure responses based on sexual orientation in the last few years – and are yet to be able to measure which responses are from trans patients.  

My work aims to explore the “hidden” voices of LGBT patients within cancer services. This is achieved by working closely with a group of LGBT people living with cancer.

Macmillan’s funding of this work has created a space where these patients are encouraged to be themselves, share their experiences and give us feedback on what could have been done better.

And we hear some tough stuff.  This is because many patients have found that they felt unable to communicate these experiences back to the service providers at the time of their care, either through fear of seeming to be creating a fuss or being unsure that services would have the required level of knowledge around LGBT identities. Hopefully this is something that will change in the future.

So what have we done so far? We start by ‘tooling-up’ staff in cancer services via a training programme on LGBT issues.

For example, we teach healthcare professionals to use gender neutral terms such as ‘partner’, explore how to make environments LGBT-friendly using rainbow symbols and representative imagery, and encourage the provision of LGBT-friendly written materials as much as possible.

We’ve also been looking to the future – LGBT Foundation has been working with Manchester Medical School on how they can better embed LGBT issues into their curriculum to ensure doctors of the future appreciate the need for personalised cancer care for LGBT cancer patients.

Beyond this, together with my patient group, we have been building and running a programme of events, activities and campaigns, which reflect the needs and concerns of LGBT communities living with cancer or caring for someone with the condition in the Greater Manchester region.

The issues that influence the experiences of LGBT cancer patients are wide-ranging. They include problems with everyday communication with healthcare professionals, being treated with dignity and respect, and issues with accessing adequate practical and emotional support.

We have shown how much someone’s sexual orientation or trans status can impact on the quality of the care they receive. This can mean anything from making sure someone is made to feel welcome as a trans woman accessing prostate cancer clinics, to involving a patient’s same sex partner(s) in discussions with their doctor about your sex life while living with cancer.

As issues like these are identified, I work with our patient group to explore solutions or create spaces for further discussion.

For example, we discovered that cancer patients were unaware of LGBT-specific counselling and peer support services in the region, which they could have accessed during their treatment, and a new campaign through Macmillan’s Information and Support Centres in the region will now address this.

Similarly, during Manchester Pride weekend we worked in collaboration with Superbia and Manchester Metropolitan University to give four local artists the floor to explore some of the assumptions that are made about women and what they want in terms of support with their recovery.

It emerged that while long wigs, makeovers and make-up tutorials make a huge difference for some, they don’t quite do it for others.

This event attracted a huge audience, which demonstrates how creating these spaces to have difficult conversations about our expectations and experiences of healthcare really is of importance to people. 

Although on the whole I have received enthusiastic responses to my work from local health professionals, it can still be really difficult to get everyone on board – whether that be through a lack of understanding of the importance of awareness about LGBT communities or, plainly, discriminatory views.

What’s more, discrimination exists not just in the domain of patient-professional relationships, but within patient acquaintances too.

For example, I know a number of LGBT cancer patients who have experienced either homophobia, biphobia or transphobia while attending self-help groups – a space in which you would hope (at the very least) everyone attending would feel safe and totally accepted.

So although there is still far to go, I hope that through work such as this and with the backing of charities like Macmillan Cancer Support, we can go a long way to improve the experiences of LGBT communities and show those working in cancer services that LGBT people’s needs must be considered.

Let healthcare professionals – like Lawrie Roberts – help people with cancer to live life as fully as they can, by joining Macmillan’s Coffee Morning this Friday.

macmillan.org.uk/coffee