A year ago right now I was lying on my Mum’s bed, holding her hand and talking to her as she spent her last living, breathing hour on this earth. Mum was at peace with the fact she was dying, and that peace was a total gift to those of us who love her. Given the year that has followed I’m deeply aware of how lucky we were that Mum died how and when she did.
I wanted to share a post about candour, the power of it, and the impact it had on my Mum’s life, and mine. Those who work in the NHS have a Duty of Candour, you can read the legislation here (paragraph 20), in a nutshell the duty of candour is a legal duty to be open and honest when things go wrong. Sounds simple doesn’t it.
I’ve spent the last five years campaigning and reporting on the premature and preventable deaths of learning disabled people, amongst others. I can count the incidents of genuine candour I’ve witnessed, or seen reflected in documentation, on one hand. At Connor Sparrowhawk’s inquest, Winnie, one of Connor’s named nurses, asked whether she could address Connor’s family before the family’s QC questioned her.
The atmosphere in that court room was electric at that point; I can still feel it as I type. It must have taken tremendous courage for WB to make that apology, to look Connor’s family in the eye and take responsibility, especially in a court room where many others were actively shirking responsibility, denying any errors or indeed diminishing the family’s accounts.
About 18 months ago, in September 2019, I was in Sheffield for what was meant to be Thomas Rawnsley’s inquest. It was adjourned on day two, which meant I was able to return home and attend an appointment the next day with Mum. The appointment was long hoped for, and was with an orthopaedic consultant. Mum had been in pain for over a year, excruciating pain.
Pain killers wouldn’t touch it. Mum’s GP had seen her on numerous occasions. Mum endured a year of physiotherapy, which was awful, more than one physio told her she clearly wasn’t doing the exercises properly, she spent her money on acupuncture, she tried everything and anything, and nothing helped. Mum’s GP tried to refer her to orthopaedics but the physios had blocked it, said she needed to continue with exercises first. Eventually Mum’s GP phoned the orthopaedics department and managed to get her a cancellation appointment. It was that appointment that I joined Mum for.
The consultant was lovely, really lovely. He commented on the number of people he has who arrive, in floods of tears and extreme pain after a year of futile physio, or as he put it ‘with no relief’ (something is very wrong there, but I’ve not had the emotional energy to make a formal complaint, I may still write to them).
He took more scans and his plan was to do a full shoulder replacement for Mum, he booked her in for a pre-op which we attended the following week. Mum was an otherwise fit and healthy 73 year old and he was confident she’d be able to get back to dressing herself, maybe even gardening, driving, all things she’d not been able to do latterly.
Less than two weeks later we got the call, could we return to his clinic. Neither of us felt good. We sat in the beige room and I held Mum’s hand as he told us how terribly sorry he was, he couldn’t operate as planned, the scan’s had revealed that Mum had no shoulder left… it had been replaced with a dirty great big tumour.
I’ll save you all the details, but what followed was a two week stay in hospital as more tests were done, and medication was adjusted. Mum’s cancer was rare, super rare (of course it was, both my parents, less than one in a million, but then they were one in a million parents too). Mum’s cancer had spread, she had tumours in her ribs and in her brain. There was no treatment available, beyond pain control, it had been found too late.
In October we brought Mum home, vaguely optimistic that she might have a while yet, even though everyone told us she probably didn’t and in our hearts we could see her deteriorating, quickly. Mum received radiotherapy for pain relief, her medications were adjusted and increased. We had wonderful support from the specialist nurses and the District Nurse Team who were truly life changing in their support.
We crammed as much in as we could, we had brownies at her beach hut, we went out for coffee, we went up on Dartmoor, we did normal stuff. Perhaps the most important trip we made, and the one I’m meant to be telling you about in this post, was a visit to her GP, a week after she came home from hospital.
Mum was starting to be confused at times, she was having seizures, but she was on sparkling form for this meeting. We went into the room I remember visiting as a young child with Mum, except this time it was me supporting her. The first thing her GP did was ask how she was, and Mum explained how relieved she was to finally know what was wrong, how she had been beginning to think she was imagining things, how she was at peace because she knew now what was happening.
Her GP listened, and when she’d finished he calmly and simply said he was sorry. He apologised for missing the cancer for so long. He apologised for not managing to get her seen by a consultant earlier. He apologised for not knowing, despite knowing himself something was off. Mum was quick to jump in and defend him, to acknowledge she wasn’t always a perfect patient, hadn’t consistently taken the pain killers he’d prescribed because the side effects were so bad. She didn’t want him blaming himself.
He was having none of it. He listened again and then said it wasn’t that he blamed himself as such, but he had needed to check his practice. He’d been over his notes, and he was sorry that he’d not got a diagnosis earlier. He explained to Mum and I that he had a Duty of Candour. He felt that there were some points where he wasn’t sure but perhaps if he’d taken a different course of action, this situation might now be different.
He wasn’t saying that he could have stopped Mum having cancer obviously, but there might have been different treatment options if it had been found earlier, there were some test results that maybe should have led to more digging. At the very least it might have been possible to get Mum’s pain under control earlier.
Mum asked him how long she had. She requested he be honest with her. That she didn’t want it sugar coated. His response, that he suspected we were talking ‘days not weeks, maybe weeks, but not months’. We were in no doubt Mum didn’t have long left.
I felt like I was having an out of body experience. I was carrying so much anger. Anger at the phyios who had not really listened to Mum and had doubted her so much. A little anger was aimed at this GP, how could he have missed it for so long, and quite a lot at myself, while I was running around the country worrying about others failed by the NHS, I’d missed what was right underneath my nose.
I can honestly say that doctor’s appointment was so healing. His honesty and candour was so powerful.
The conversation continued, we were well over the allocated time slot now, but I’d noticed we’d been given the final appointment of the day (another kindness). A discussion was had about medication, and he gave me his secretary’s email address. As the conversation came to an end he asked Mum if there was anything she needed.
My Mum being the best human to walk this planet (I know I’m biased) asked if she was allowed to give him a hug. He came out from behind his desk and they hugged, I wasn’t sure Mum would ever let go. Again, for me the atmosphere in that room was electric. The power of candour, it’s truly remarkable. That and a long held relationship between a patient and a GP.
This same GP had visited my Dad, on his weekend off, a few days before he died years earlier. Mum had such trust in her GP, and any doubts or hesitations I had dissolved in that moment.
This was October, I had a few phonecalls in the weeks that followed and he came out and visited Mum the day before Christmas Eve and told her of his plans for Christmas, to go home to Ireland and visit his newborn grandchild. She was so excited for him.
As he left that day he told her he’d see her next year. I remember thinking he was stretching it, that Mum was never going to see 2020. Turns out he was right. Mum did live to see 2020, in fact she lived for a whole month of 2020, dying on 3 February 2020.
Mum’s GP has retired since her death, I wrote to him, to thank him for the care shown to both our parents. I’d been meaning to do it for months but couldn’t find the right words, in the end I just had to say something and I wanted him to know how powerful his candour was. I received a completely unexpected response a few days later thanking me, and saying it had brought him to tears and what a privilege it had been to care for our parents.
I’ll always wish we’d found Mum’s cancer earlier, but in the absence of that, honesty and transparency meant Mum was at peace with her end, which made it all the more easier for those of us left behind to accept it. There we have it.
Candour, it’s a super power really.