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Guest blog Allison O’Kelly

Allison O’Kelly is a Queen’s Nurse and Clinical Lead in Memory Services in East Cornwall, working for Cornwall Partnership NHS Foundation Trust. She specialises in getting dementia services right for people who identify as LGBTQI*, and their carers.

“I have worked in dementia care since I qualified in 2001. In 2005, I piloted the first recognised memory clinic, which has since been replicated all over Cornwall. In 2010 I met my first trans patient, she was in her early 60s and had fully transitioned in her 40s. She was diagnosed with Alzheimer’s and deteriorated quickly, becoming distressed about her gender identity.

“Working with her made me realise just how unprepared we are for the challenges facing trans people, as well as others under the broader LGB* umbrella, if they have to go into care as a result of dementia. So I set about educating myself.

“In Cornwall, there are plenty of remote places which offer the freedom, to those who do not identify with the gender they were assigned at birth, to live as they wish, beyond the scrutiny of prying eyes. That is, until they become ill, either physically, mentally or both. Dementia doesn’t discriminate. Things you have had hidden for years are going to be exposed – whether you want them to be, or not.

“As my specific area of expertise is dementia, I looked at how members of the LGBTQI* community transitioned into care and what the impact was. I found that, in many cases, there was simply no guidance in place in terms of how best to manage the transition – both on the part of the patient themselves and from the perspective of the care giver. Many hard won battles were simply ignored for an ‘easier’ transition in to care as the patient’s mental health deteriorated.

“The devastating impact which this can have on the patient, but also their loved ones, cannot be underestimated.

“So I began specialising in this field. As part of my research I travelled to Australia, a trip which was funded by a Winston Churchill Fellowship. Australia is streets ahead in terms of its proactive approach to supporting those whose sexual orientation or gender may differ from what is recognised as the ‘norm’.

“I travelled to Sydney, Adelaide, Melbourne, Brisbane and Cairns and met many people who are training care staff in the diversity of dementia. I attended workshops and took away a lot of training material. I am now working on bringing this excellent training back to my NHS Trust and ultimately rolling it out further afield.

“One very simple tool which was in place for trans patients was a ‘Gender Passport’. This document bypassed the need for patients to continually come out to care givers. Instead they simply hand over the booklet, which can be uploaded onto the patient record, and that person’s trans identity is acknowledged and respected.

“This is something I am hoping to be able to replicate initially for our patients in Cornwall. I believe that knowing they can show their card, without having to explain their personal situation in detail, will break down barriers. It will put the care giver at ease, knowing they do not need to question the patient’s gender journey, but it will also, I believe, encourage patients to go to their GP surgeries for vital anatomy-based screening, such as cervical and prostate cancer,  without fear of ridicule or judgement.

“While we are seeing more and more people come out as transgender, this is still a largely hidden population. It is not unusual, especially for those living in remote areas, for their identity to go undisclosed for fear of discrimination. When patients lose their autonomy, due to ill health, if they have not stated that their gender differs from the one which they were assigned at birth, it would not be unusual for the caregiver to revert back to the gender marker on the patient’s passport.

“This is why having an advance care plan in place is so vital. Being able to provide clear guidance to those providing your care can mean the difference between a patient being able to live out their final years in their true identity, which they have often fought incredibly hard to realise, and giving it all up – something that would have been unthinkable if that person were not mentally incapacitated.

“Education is two fold, as well as those needing care being clear in what they would like in terms of a care plan, it is crucial that those providing their care are sensitive to the patient’s needs and that they are respected. Treating every person as an individual. Simple steps such as offering patients a choice of clothing can help, as can making sure you are using the right pronouns and respecting diverse partnerships.

“Where hormones are prescribed, ensuring these are administered can greatly alleviate a patient’s distress, even in cases where the patient no longer actively requests these. Assigning power of attorney to a trusted family member or loved one is also a critical factor in ensuring wishes are respected, even when the patient is no longer able to have any influence over their own care.

“In Australia, training in dementia awareness for LGBTQI* patients is Government funded and delivered in every territory by different organisations to care home staff. This significant commitment by the Australian government to train and educate carers, has put the needs of LGBTQI* patients front and centre. The country is huge and yet the network and awareness in this area feels very tightly coordinated and managed. Everyone knows what they need to do and where to go to get the training. In the UK, this still feels some way off. Yes, there is awareness, but there is also a lot of resistance.

“Having said that, it is not all plain sailing in Australia. The head offices of two of the largest organisations that I went to meet with, were not easy to find, a symptom of the homophobia and transphobia that still exists, even in this enlightened country.

“I want to teach the fundamental principal that gender and sexual orientation are not something to be questioned or ignored, but accepted and respected. However, in order for this to become the norm it has to come from all areas of the NHS.

“GP surgeries, for example, need to take the lead in showing that they are gender inclusive. Putting policies in place, training a practice nurse so that they are able to demonstrate that they are LGBTI* aware. Until they truly believe that they won’t be judged or discriminated against, it is unlikely that all those who need to do so, will come forward for help.

“It is a fascinating area. People are not objects of curiosity, they should be free to live their lives in whatever way they feel comfortable. As care providers – particularly towards end of life – our job is to make this process as respectful as possible.”

Allison worked with the Alzheimers’ Society in writing its guidance on supporting LGBTQI* patients with dementia. This is available for download here:
https://www.alzheimers.org.uk/download/downloads/id/3555/supporting_a_lesbian_gay_bisexual_or_trans_person_with_dementia.pdf