This article was published on Open Democracy.
Sat in the waiting room of Cheltenham Hospital with my Dad I started to google ‘Arriva NHS patient transport’. I had already read all that Hello magazine had to offer, what else was I to do?
And so, I read to fill the time. I read about the company that many local NHS Trusts have contracted to provide patient transport. I read with bemusement about their commitments “to the highest quality of care” and about how patients “inspire” them “to achieve excellence” and laughed to myself about how this failed to tally with my experience. I also started to read alarming numbers of patient testimonies describing being let down by them. About how the most vulnerable were being left for hours with no adequate care.
That morning I had sat by myself for hours as my Dad failed to show up for his appointment. He was coming from Cirencester, less than half an hour’s drive away, but finally arrived close to 2 hours late. They had picked him up 15 minutes after his appointment time and then proceeded to pick other patients up on the way meandering through Cotswold villages.
In that time, I rescheduled his appointment, twice. The receptionist was wonderfully understanding and yet deeply scathing about Arriva. She gave me their direct number saying that the dispatch office of Arriva no longer listened to her. “It shouldn’t but it happens all the time, where we can we will always try and fit people in. Often, I end up having to book patients taxis, it’s not right that people should have to wait around like this” she said.
She was apologetic, nice, but in her mind, unable to help or affect the system that was failing patients.
After the appointment was over Arriva informed me that they were, once again, running late. I rang them directly. They apologised over the phone to me and said that there would be an hour delay in getting my Dad picked up. This was at 12:15, about the time I had originally agreed to take over looking after my 5-month-old baby, and about 1 hour after my 2-hour parking ticket had run out.
What happened next was bordering on the farcical. To be exact:
- I rang at 12:15 to be told they would be there by 1:15.
- I rang at 1:30 to be told they would be there by 2:00
- I rang at 2:15 to be told they would be there by 2:30
- I rang at 2:45 to be told they would be there by 3:00
- I rang at 3:10 and they arrived a few minutes later.
When they did arrive, they apologised for being late by saying “we weren’t sure which department you were in”. I didn’t quite have the emotional energy to respond. I had arrived that morning at 10:30 to support my Dad through a 5-minute routine appointment. I was leaving close to 5 hours later.
Sadly, though this seems far from unusual. As one nurse who came out to see us still waiting retorted, “why am I not surprised to see you still here?”. My cursory google search gave dozens of comparable stories. 67-year old Brian Cropton from Stonehouse commented that “it’s just getting worse and worse” after he found himself regularly let down by them being left for hours and on occasion completely abandoned.
This chimes not only with the experience of the NHS staff who I spoke to, but also one of the official records. Last year in July members of Gloucestershire County Council’s Health and Care Overview and Scrutiny Committee told Arriva its performance was not good enough. One local Cllr commented that “Arriva have patently failed in a number of areas and it simply isn’t good enough” and that “[The] report is full of excuses”.
This came a year after an official warning was issued in late 2015 for “consistent failure to achieve a number of required Key Performance Indicator standards”.
I write this now not just because my own experience was awful but because it fits into a wider pattern – not once since Arriva Transport Ltd took the Gloucestershire NHS contract have they hit their own target of 95% of patients being dropped off between 45 minutes before and 15 minutes after their appointments. Pause on this point for a minute. Even if they had hit their targets, 1 in 20 patients would not be dropped off within an hour slot of their appointments. Can you imagine the logistical and financial impact this is having?
With one year left on their contract, I wonder if anything will change. Will it just be renewed? Is the NHS in a financial state to pay for better services? Is there any reason not to bring the service back in-house?
I don’t know. What I do know though is that the receptionist I spoke to told me about an elderly man who cried in her waiting room because he just wanted to get back to his bed and I know that is not OK.
Reflections on my Mum’s advanced dementia
“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’” Hendri Coetzee – Living the Best Day Ever
Sitting across from each other on slightly uncomfortable wooden chairs in the care home I watch my Mum interact with one of the staff. The young girl lays her hand on my mum’s shoulder, raises the volume of her voice slightly and asks if “everything was alright dear” and if my Mum would “like any help?”.
My mum looks up at her and smiles with wide unfocused eyes. The staff member smiles back, hovers awkwardly for a moment trying to decipherer what this blank stare means before finally she walks over to another resident. As she makes her way over to a lady sat hunched in the corner I look back at my Mum and catch just the faintest flicker of a death stare from behind her eyes. It was an unmistakable reflection of something deep within her that these days only occasionally surfaces. Today this was a split second of a “fuck off am I your dear”.
Of course, I could have imagined it, I could have simply wanted to see a bit of her old self and so read too much into a distant stare. But, in that moment I think I saw my Mum: proud, wanting to help others – not wanting to waste people’s time in being helped, and ultimately using anger as a shield to hide away from all the insecurities and uncertainties of her life.
She focuses her eyes back on me, a second of surprise or alarm gives way to a meandering anecdote about the walk she believes she had taken that morning over Dartmoor. I ask if she saw any deer and she responds that she had, but only in the distance. This follows a second of silence and a drop in her eyebrows before she asks if I was OK to count? I promise her that I was more than happy to count to which she scoffs and says she doubts it. I once again miss the nuance of her reality.
Asking questions of dementia patients often only increases distress and confusion and so I try to steer the conversation back onto safe territory and say it was a beautiful crisp winters day outside. Her eyes look at me. One, two, three. Seconds pass with no response. I try a new path. I tell her that I recently spoke with her nephew, my cousin, and that he is happy and doing well. One, two, three. Eyes wide. No response. I try three of four times more and get little in response.
I decide not to push conversation. I sit with her in the weak winter sun surrounded by the stuffy air of the car home. Silence.
In the silence my mind jumps to memories at random. I think back to my mum cutting all the fire wood for the house by hand insisting that she was perfectly happy with her bow saw and no, she didn’t want me to come around with a chainsaw. I think back to her carrying heavy trestle tables out of the local scout hut as all the other mums stood and watched. I think about her slapping down any idea or suggestion that she might in anyway need any help.
With these thoughts in mind I smile at her thinking that I might get going soon. She doesn’t smile back. The staff member approaches and puts her hand on Mum’s shoulder and, just before Mum smiles up at her, she gives her a split second of that recognisable death state. The staff member either doesn’t notice or chooses not to.
The thing I feel saddest about when I leave is that Mum has so little capacity, so little control. Despite both the care home and my family doing all they can, we are no longer able to play by her rules and there is nothing we, or she, can do about it. She is left to be looked after by others. She is clearly being looked after well but they also clearly miss the very essence of her. I don’t think I am sad that she will pass away in the coming, weeks, months, or possibly years. I am just sad that it must be like this, not on her terms.
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Tagged as Advance dementia, Care home, death, Dementia, dying, Hendri Coetzee, Living the best day ever, Living with