By Emma Astra AKA The Disabled PhD Student
Context: This was used for one of my online Facebook Diary of a Disabled PhD Student posts which form part of my thesis.
Post 12 - 27/4/23 *Joanne (*name and distinguishing features changed)
When I started to write in Post 11 how wheelchair ‘two’ was kindly given to me by the NHS (after forms and assessment), it made me remember more just how gruelling the forms and assessment were. My mind wandered back to what Joanne experienced with her husband.
Just before my mobility took a turn for the worse, I was in the hospital due to my Ulcerative Colitis. In what I call the s**t ward, its official name is Gastroenterology, which is hard to spell for dyslexic and dyspraxic patients. Joanne was another patient brought in by her son. Joanne looked like a rabbit caught in the headlights. It was almost like she wanted to say, ‘What is this s**t?’ but she was far too classy to say that.
A Health Care Assistant (HCA) who worked on the ward must have hated me because every time she insisted on taking my obs (observations like blood pressure) through the night, I would complain when she put the lights on. Some HCAs’s left the lights off and shone a torch so as not to cause too much disruption, but this HCA didn’t. I decided this night to be nice because I would ask for a cup of tea. Joanne’s voice came from behind the transparent curtains. ‘’cup of tea sounds good’’. The HCA gave her due, accepted the request, and came back with 2 cups of tea. An hour later, but we still got them.
So Joanne and I were having a cup of cold tea at 2 a.m. with the curtains drawn back slightly so we could see each other (there was no one else in the bay at that point, so we weren’t disturbing their sleep). I learned about Joanne’s life story.
Joanne’s in hospital after just being diagnosed with lung cancer. She was in private healthcare, but I think her allowance reached its limit. She used to be a family solicitor. I couldn’t believe the connection as I was a Family Court Advisor at the time and spoke with many family solicitors. Joanne had long been retired by that point and was around 75 years old. Joanne said about one boy years ago who went back to his dad's care and committed suicide at the age of 12 at the family farm. ‘‘I wish I had done more and gone to the farm somehow before’’ she said slurping the cold tea. After the random talk at 2 in the morning over cold tea, I thought Joanne was more than a solicitor. A Solicitor mixed with a social worker and mum. She really cared.
Another time during our hospital stay, Joanne said she always seemed to get the short straw at Christmas and was on court duty. She would rush Xmas Eve to Marks and Spencer’s to get the Xmas dinner pre-prepared as much as possible. And how much her mortgage payments were when she started with a family that was finding it difficult to buy their children’s shoes. She’s currently helping her grandchildren, who are currently in £ 70,000 of debt and going through medical school. I thought, crikey, even posh people struggle.
After retirement, her husband became seriously Ill. I think a stroke and cancer. She was finding it difficult to care for him. Joanne and her husband asked if he could have a wheelchair. Her GP referred her to the NHS wheelchair service, which a company commissions. Joanne and her husband went for an assessment. ‘’Unfortunately, we have to go by the criteria. You are not eligible, Sir,’’ the man in a white suit said to them apparently. The one ticking boxes with a mouse instead of a pen and brain. Joanne took a slurp from another cold cup of tea whilst we were talking and fiercely said to me, ‘’I have never felt so degraded in my life.’’ I thought dealing with all the conflict she endured during her career must have been bad. She then had carers who treated her husband poorly. But then Joanne was lucky to find a lovely local carer who provided consistent care at a cheaper cost than before. Joanne’s husband then died.
Joanne said ‘‘I’ve just been able to talk after a nightmare endoscopy procedure.’’ Maybe she was making up for all that time of the lost voice tonight. Her two front teeth were knocked out during the process. Medics said she was exaggerating her pain. She then had emergency surgery because of a rupture somewhere in it. No apology.
So that’s how Joanne and her husband were treated after all those years of dedicated, loyal service and helping many people. Joanne spoke about how she and her husband liked to travel on their rare annual leave entitlement. Joanne wanted to go on a cruise. I hope she got to go on that cruise.
So when it later came to my wheelchair assessment, I was absolutely petrified from such discussions as with Joanne and others in the past. I’ll talk about that in another post because I shouldn’t have been so worried. During that first assessment, I was treated like a Queen, and they ordered an electric wheelchair after a lengthy referral process. However, I soon realised the wheelchair didn’t meet my needs. The second visit was quite different from the first, which I will talk about in another episode! It seems like the luck of the drawer and a never-ending story. Or stuck in limbo.
Photos below: my NHS electric wheelchair. I couldn’t find any photos of a hospital cup of tea, but a photo of hospital food:
Hospital Food during that stay:
Photo of the curtain at the top of this article credited to Absolute Home Textiles: https://www.absolutehometextiles.co.uk/antibacterial-cubicle-curtains-fire-retardant-thermal-insulated-room-darkening-geometric-design-double-sided-printed-pencil-pleat-1-panel/?gad_source=1&gclid=Cj0KCQjwlZixBhCoARIsAIC745DfKYKVVKSZ3hccunYu60gF25NGRbRSMny20knk2AWBm10kCBh9uzsaApK_EALw_wcB