#Pride 2023: An interview with Joanna Sedley-Burke

Joanna Sedley-Burke is a Trustee of Widowed & Young and became the chair in July 2021. She talked to The Widow's Handbook about her wife Paula, and about being an LGBTQ+ widow.

 
You and Paula were part of the campaign for same-sex marriages in the UK
Yes. We collaborated with the Stonewall campaign for civil partnerships, and then for same sex marriages. We were lucky enough to be the first civil partnership  at The Ritz in London, and we where then invited to be one of the first five same-sex marriages at Westminster. Whilst we were married for 11 years, we were together for 20 years.
 
I am lucky to be able to say that her family have been nothing other than supportive; in fact, they call me their fourth daughter.
 
Tell me about Paula's illness
Paula had autoimmune conditions, including Crohn's disease and ankylosing spondylitis, and she had a number of flare ups over the years we were together. She wasn't well, but she wasn't seriously ill by any means. Back in February 2017 she was having chest problems, and we went to A&E, where she was X rayed and they told us that there was nothing wrong. We went home.
 
Paula clearly still wasn't well. We went back in and they did more blood tests. We were told at this point that she had an infection, but they weren’t about to specify where, and they sent us home with antibiotics. She got worse during the following week, and they finally diagnosed a chest infection, and gave her different antibiotics. But her breathing got worse, and I called 999. We were blue-lighted into our local hospital and went straight into the resus unit. At this point they did more X-rays, which showed a shadow on her lung, indicating pneumonia. We were relieved as there was a fear she had sepsis.
 
They put Paula on oxygen, and it must have helped because she demanded a roast chicken dinner. She never lost her sense of humour, all the time that she was ill. The doctor said that she would probably in for a number of weeks because of her compromised immune system.
 
I went home, and I tried to call her mobile later, but there was no signal. The next morning I called the hospital and they said she'd had a quiet night, and to call back in half an hour. When I did, her speech was slurring a bit, but she was like that when she was hungry. An hour later I received a call asking me to come in and talk to the doctors.
 
She had developed hypoglycaemia which then triggered sepsis. She was already underweight, and the infection set off a downwards spiral. The nurses had paged the doctor, but sadly no one responded to the call out. Paula died five minutes after the hospital called me.
 
What were the issues that you had with the hospital?
Three months later my mother-in-law told me that the hospital had called her indicating that the X-ray had shown that there was a problem. I put in a complaint to say that they should not have divulged this to her mother. Not only was she in her late 70s with a heart condition, but more importantly I was Paula's next of kin. In my head this was a breach of confidentiality. The hospital's response was that they could as because Paula had died, it was no longer a data breach.
 
I requested all of her medical notes and much to my horror I found out that the hospital had put a DNR [do not resuscitate] in place. Paula and I had discussed this, and I could not believe that she would ever have asked for it. She hadn't mentioned it to me.
 
The hospital had referred itself for a serious incident investigation. This review took months, and when I saw the report, I couldn't believe it. They spelled my name wrong, said that I was the husband, got Paula's date of death wrong, and said that I had put the DNR place. It was as if it was written about a completely different person. This really wasn't a proper investigation, and had 48 major errors in it, despite it having been read and approved by six different senior managers in the Trust.
 
Going through the report just left me reliving the original trauma, and the way I coped was treating it as if it was a work project. I had to detach myself.
 
Did they finally get a revised report to you?
I finally managed to get a revised version of the report after four months. I questioned everything that had happened. Finally, the Trust admitted that the doctor had put the DNR in place without discussing it with anyone.
 
Luckily for me, I had a medical friend look through the information. One thing that was particulally hard was finding out that the X-ray that had been taken in February had shown evidence of a shadow, but that this hadn't been passed on to Paula's GP, so nothing was ever done with the results. However, something that did help was my friend telling me that when the doctor finally saw Paula on the ward as part of the rounds, she was already at a point where she could not have survived. That she was just going to fall asleep and never wake up.
 
What did you do next?
I wasn't happy with how things had been handled and after months or formal complaints not being dealt with appropriately, I went to the Parliamentary and Health Service Ombudsman (PHSO), and they were amazing. I felt zero discrimination, and I felt that I was working with someone who was doing it for me and for Paula, and doing it to bring about policy change. We made the hospital's life hell, because I felt that if it could happen to Paula, it could happen to anyone, as nothing had changed in the hospital's processes. Eventually the PHSO found in my favour, and I take some consolation that the hospital was forced to change its processes and systems to avoid these errors happening again.
 
How is being a widow in a same sex marriage different to a heterosexual widow?
It sometimes feels like you are having to come out all over again. And again. But without the excitement of that first coming out.
 
Perhaps as a response to years of lived experience and of unconscious bias, there were times during Paula's illness and after her death where I started to doubt myself, or ask myself 'would you have done that if I was straight?'
 
After her death, when I went back to work, the response of one of my colleagues to the news was 'but I didn't know that you were gay', as if that information trumped the news of her death. And that left me feeling that the most important thing about me was that I was gay, not that my wife and partner of 20 years had died.
 
When I went to register Paula's death, I was asked if I was her daughter or her mother. When I started the admin after her death, on the very first call when I said that I was a widow, the immediate response was 'when did your husband die?' I know that same sex marriage was relatively recent then, but it put another layer on something that was already hard.
 
Some businesses had it right. John Lewis for one, they train their staff in dealing with people who are grieving. But others were harder. When I cancelled her phone contract, I wanted to be assured that her number wouldn't be handed on to anyone else, and that took almost as long as probate.
 
How did you find WAY and what were your first impressions?
I found it by accident, through a friend's sister, but I didn't get involved initially, because I thought it was a dating group for straight people! There certainly weren’t any resources for LGBTQ+ widows. I suspect I also didn't want to accept that I was a widow. But I went back and joined a few months later and found my fears completely unfounded. The support and friendship have been a life saver for me. Just having people who ‘get it’ is invaluable. WAY has shown me that I am valued.
 
I’ve never been one to stand in the shadows and when I looked at the trustees and saw older white men, I contacted the then Chief Executive Rebecca Cooper and talked to her about diversity. She invited me to join the board. Five years' on, WAY has a wonderful LGBTQ+ widows' group that is a safe space, and we are working to improve our diversity.