Roger Newman MBE, co-founder of the LGBT support group of the Alzheimer’s Society, writes for PinkNews.co.uk about some of the key difficulties that LGBT people face when entering the care system.
I have had to arrange care on several occasions for people close to me, and each time there have been new challenges and different things to consider. Different people need different types of support at different times in their lives, and it can be a real struggle to find the best care, or even know where to begin.
My first experience of the care system was in the early 1990s when my ex-partner, David, started showing signs of severe dementia. This was a frightening time; at one point I had to have him sectioned and he ended up in the ward of a mental hospital before being transferred to an EMI (Elderly Mentally Impaired) home. Back then, I didn’t know or understand these terms, I didn’t even know anything about pre-senile dementia or Alzheimer’s so I was in a world that was entirely foreign to me.
Also, as a gay couple, my relationship with David was not legally established, and so things happened to him without my knowledge. At one point, he was moved from hospital to a residential home and I had no idea. I did not know what my rights were and how the social services could help me.
Understanding the care system can be confusing enough, let alone if you are looking to find services where you are comfortable with how they deal with your sexuality. This is why I’m supporting Find Me Good Care – a new website providing guidance on care and support options from UK charity, the Social Care Institute for Excellence. The LGBT search function on the directory of services is particularly helpful. It is important to find somewhere that makes you feel safe, honoured, respected and recognised as someone who is gay and therefore has unique needs. No one should ever feel like they need to go back into the closet when they’re receiving some kind of care.
In 2004, my new partner Michael was diagnosed with an aggressive form of cancer and was not given long to live. Building on my previous experience with legal issues caring for David, the first thing we did was sort Power of Attorney and create a will. When a loved one is ill, practical things like this can be the last thing on your mind, but it’s so important to plan ahead and it means there is one less thing to worry about down the line.
But I still feel like we still needed to teach the people who were caring for Michael how we wanted to be treated. Everyone was quite clear that they were going to be putting into practice equal rights, but we didn’t want to be treated equally or like an ‘honorary heterosexual couple’, we wanted to be treated as a gay couple, and it was a case of teaching them what we meant by that.
Care for LGBT people should be distinctive. We have our own community history as well as our own individual history and both should be acknowledged and used within the care situation. We have our own culture, literature and, for men, even our own language etc. All should have a place in enabling the person to feel confident that the best is being provided for them.
For me, the issue has never really been about discrimination, though I acknowledge that this is not true for some people. The issue is more about engagement from the provider towards the LGBT person. It is too easy to sign up to equal opportunities projects and then hide behind statements like ‘it doesn’t matter who you are – we treat everyone the same’. Carers should be asking questions, however searching, as it will become clearer how dementia affects a person and what their distinctive needs are. The consequence will be real insight and ultimately better care.
A wider issue facing the LGBT community is our ageing population. It is going to be increasingly relevant, for demographic reasons, to start to include matters relating to ageing and end of life care as they impinge on older LGBT people. Sooner or later ‘us oldies’ will be in the majority within our community and the implications of this will be huge. The LGBT community needs to rally round, like it did in the 90s for AIDs and HIV, and respond to the real need for older LGBT people to be supported in their search for care.
The LGBT community needs to get itself mobilised – it’s on its way, but it’s not there yet. There are pockets of really good practice, but we need to do more to make sure that people are receiving all the support they need. In terms of age, we are not far from being in a situation where the majority of LGBT people are over 50, and the vast majority of those people are not going to be in a civil partnership.
Roger Newman is an ambassador of www.findmegoodcare.co.uk – a service created by UK charity the Social Care Institute for Excellence, to provide advice and guidance on care and support options.
The site also includes a searchable directory with the option of leaving feedback. He also co-founded the LGBT support group of the Alzheimer’s Society and in 2007 was awarded the MBE by Queen Elizabeth for his charitable work.