Category Archives: Health

November 14, 2023 · 3:43 pm

Bursting the balloon on the new Tory war on drugs

This article was written for Ecohustler. Please do check out the writing on their site.

It’s no laughing matter. When this government referred nitrous oxide, aka laughing gas or NOS, to its so called ‘Advisory Council on the Misuse of Drugs’ (ACMD) one assumed it was because they wanted to be advised. The reality is anything but.

Last week possession of NOS became a criminal offence. As a class C drug, possession can now carry a sentence of up to two years in prison. Those done for supply could face up to 14 years in prison. I will come onto the folly of imprisonment in a bit. But for now, let’s stick with the decision to stick it to the experts. For such a drastic move one would assume the evidence was clear. Far from it.

Ask an expert

The AMCD – you know, the experts – reported on the associated risks of NOS use and were very clear, saying: “Based on this harms assessment, nitrous oxide should not be subjected to control under the Misuse of Drugs Act 1971”. Because they argued, that the “current evidence suggests that the health and social harms are not commensurate with control under the Misuse of Drugs Act 1971”.

And so, after considering this expert advice closely, they of course wasted no time and … did the exact opposite.

To be abundantly clear, this was a political decision devoid of expert backing. First it was the Home Secretary in the form of Patel and then Suella Braverman who supported the criminalisation of laughing gas. But the nail in the coffin of common sense came when the Prime Minister himself backed the move.

In retrospect when Michael Gove quipped in 2016 around Brexit that “people in this country have had enough of experts” it might be fair to assume that by “people” he meant, “The Conservative Party”. Never have we been led by people less equipped to listen to expert advice. Those in power have suckled on their own mind-altering cocktail of extreme arrogance and entitlement combined with a nauseating populism. Like a night out that’s gone off the rails, the consequences are disastrous.

Eton mess

As easy it is to watch this like a melodrama play (and much how Laura Kussenberg’s “State of Chaos” presented it – detached from consequence) it’s essential we focus now on the harms this policy will do and think how best we can mitigate against them.

Firstly, this affects a lot of people. In England and Wales, nitrous oxide is the third most used drug after cannabis and cocaine. And this is heavily weighted towards young people. In the years leading up to COVID (where the numbers dropped for obvious reasons) about 8% of 16-24 year olds used laughing gas.

But, as with so much that relies on the criminal justice system, we know that marginalised and disadvantaged groups will be impacted the most. Trust me when I say we’re not going to see the future Prime Minister’s dormitories in Eton raided anytime soon.

Lock em up

One of the reasons the conspiracy ridden QAnon demand of “lock her up” garnered support was because of an unspoken assumption – that those in power don’t get locked up for serious crimes while others do for minor crimes. As if to cement this idea our political elite sometimes pass laws that threaten prison sentences for relatively innocuous crimes like, say, possession of laughing gas.

The ONS reports that the prison population of England & Wales quadrupled in size between 1900 and 2018, with around half of this increase taking place since 1990. 61% of our prison establishments are now deemed to be overcrowded.

But dig down deeper and you see trends emerge and who we are locking up – according to the radical hothouse, the House of Commons’ briefing 27% for example identified as an ethnic minority. And research shows a disproportionate number have low levels of literacy (62%] which is four times higher than in the general population. Around 47% of people entering prison have no prior qualifications. I repeat – raids on Eton are not what we are going to see on the back of this legislation.

Our prisons are overcrowded and ill-equipped. While prison sentences generally are known to have a long-term and negative impact on employability, they also can have negative impacts by disrupting family relationships and even putting accommodation at risk.

Snorting in derision

It seems mind blowing that people can’t spot the issue here with politicians on record talking about their own drug use sat in a building that had cocaine residue in 11 out of the 12 toilets tested saying that young and marginalised people should face imprisonment for the possession of a drug that has lower reported harms that many legal drugs such as alcohol.

Regardless, we’re left with a steaming pile of government policy that barely makes sense. For one individual convicted of possession it will cost us an approximate £48,000 a year of taxpayers’ money. A high cost, but nothing compared to the havoc it will wreak onto the lives of those convicted. The war on drugs teaches us that the damage of imprisonment will reverberate through their lives and erode their employability, expose them to serious criminals, potentially risk them losing their home, and put relationships at risk. Oh, and like a duff unregulated drug, it will do nothing to impact the associated harms of drug misuse.

Further reading from people who actually know what the fuck they are talking about:
 Transform Drug Policy Foundation’s response
 The Advisory Council on the Misuse of Drugs’ updated harms assessment
 Crew – A Scottish Charity has a good page on harm reduction measures if you are taking NOS
 Drug Policy of The Green Party of England and Wales as an example of what evidence based
policy looks like

Leave a comment

Filed under Health, Human rights, Politics

Tagged as ACMD, Ecohustler, Laughing Gas, NOS, Steve Hynd

May 26, 2020 · 10:55 am

The social distanced funeral and the need for primeval hugs

My Dad’s funeral was last week. It consisted of me, my four siblings and a vicar, all stood 2 metres apart in Gloucester Crematorium. The vast majority of people watched on through a live stream as the hymns and the eulogy echoed around the near empty room. The rows of empty silent pews speaking volumes about all the people who knew and loved Dad over the years who couldn’t be there.

After the funeral I have spent some time trying to answer people’s unimaginative question, “how was the funeral”? And I think this is the nearest I have come to an answer so far.

Crucially, both for coronavirus, but also for understanding what happened, there was no physical contact at the funeral at all. The vicar welcomed us with a polite nod of the head and my siblings and I all gave half smiles and weak waves back.

At the end of the service there were no hugs, no shared tears, and no sharing of marginally inappropriate anecdotes at the boozy wake. There wasn’t even the usual socially awkward British handshake (or my personal favourite, when one persona goes in for a handshake and the other a hug) from friends from Dad’s distant past. Instead there were just awkward good-byes and splodges of hand sanitizer as the next cask was wheeled in for the next small group of mourners. As we all disappeared off to our own separate lives even the warmth of sun felt inappropriate. It was a beautiful warm day and I knew the next time I would speak to my siblings it would be through a Zoom call or a shared meme on WhatsApp.

To me it felt inadequate, a poor fraction of a funeral for a man that burst at the seams of life. I wanted a festival for him, I wanted to hear first-hand about how he used to rally cars, how he spent hours preserving ancient machinery, how at one point or another he would have poured everyone there a glass of desert wine and watched expectantly for their reaction as they took the first sip.

Instead, the inadequacy compounded a hurtful sense of the inadequacy in not being able to be there to support my Dad in his final weeks of life. Instead of holding his hand in those final weeks I counted down the hours and days left of his life just 20 miles from the hospital where he rested. I still feel disproportionately grateful to the palliative care doctor who told me she sat and held his hand while she spoke to him about steam trains.

Although I answer honestly when I tell everyone “I’m fine” it is, I think, important to acknowledge that with death comes a form of psychological pain. And ritual and contact normally plays an important role is helping us all deal with that pain.

While people deal with this pain in their own personal and socially specific ways, I read that everyone uses the same regions of the brain to process this pain. To one degree or another it’s a shared experience. When we come together to mourn a death remarkably similar thought processes are occurring in all of our brains.

Crucially though, these processes are the same parts of the brain that are used to process physical pain. To deal with this, most of the world has developed a form of ritual that helps release endorphins to dampen this pain – in our society this is around the social gathering and shared embraces at a funeral.

We know that endorphins dampen, incredibly effectively, our psychological pain. That is why at funerals hugs are shared so freely when in general in British society we normally avoid that close embrace of a hug. It’s thought that these endorphins produce an opiate-like analgesic effect but just much stronger (one study suggests 18-33 times the effectiveness). We have evolved this behaviour as social creatures over millions of years. As a behaviour pattern it really isn’t dissimilar to the grooming of primates. Cuddling, with its stroking, patting and even the occasional leafing through the hair (that’s a joke) is the human form of primate grooming, and is designed to create and maintain our relationships and to soften pain. Anyone parent will know the impulsive response to hug their child equally when they fall over as when they are upset about something.

In an increasingly isolated world that has become more and more physically distanced (I had a cousin watch dad’s funeral from New Zealand), these rituals of gatherings around births, deaths and weddings are more important than ever. Sometimes a decade could pass and these are the only occasions when my extended family will have got together. These are our backstop to maintaining the loving relationships that sit as the foundation blocks to personal, family and social well-being.

That’s why I feel a funeral could and should be a time to gather and share stories of love and shared history but perhaps more importantly to be there, physically, for each other. Instead it feels like the coronavirus not only stole the last part of my Dad’s life, and indeed also the small but important role that we his children could play – to be there physically for him, but it also stole so much of the ritual that we all rely on to help us through the mourning process. In these socially distancing times, it feels like we are being asked to go against the most primeval of instincts embedded within all of us. To gather, to give and receive a hug and to share our memories.

One of the most comforting thoughts now is the promise of a gathering when “all this is over”. I know that this is unlikely to happen any time soon but the prospect of it is something to hold onto. To really say good-bye to my Dad I want warm ales on a hot day and long anecdotes about narrow-gauge railways all shared by the unusually diverse group of friends that my Dad managed to hold onto. But most of all I want a moment when everyone is deep in conversation and the booze is flowing that I can turn to someone who knew him and loved him as much as I did and hug them, and to mutter softly how much he would have loved us all being there together.

Until then I am making do with photo-albums and the incredibly lucky sensation of constantly having two children climbing over me and to be sharing this all with the most loving wife.

I know in this sense I am lucky and my heart breaks for all those in comparable situations going back to empty houses. If you are still reading this I urge you to take the time to reach out to those people living alone – I’m really OK and they might well not be. This unprecedented time isn’t just changing the basics of the modern society that we have grown so use to, but also the slowly evolved rituals that we rely on more heavily than most of us realise. There is little that can replace the importance of a hug but just letting people know you’re there for them is also important.

5 Comments

Filed under Blogging, Health, Social comment

Tagged as coronavirus, covid, funeral

May 2, 2020 · 12:37 pm

To the care staff, you deserve the world and I gave you a bottle of wine

I’ve never seen someone look more tired. The luminous orange jumpsuit he was pulling on looked paper thin, but the way he handled it made it look like it was weighing him down. The rain didn’t help either, coming down as it was in thick heavy droplets. He steadied himself and leant awkwardly up against the police van trying to dress himself. I didn’t like to stop and stare, but it was hard not to.

I sat there in my car for some minutes. How many exactly I can’t say for sure. It smelt sickly of limoncello, from the hand sanitizer that rested permanently now in the driver’s door. Another small visual clue of how things have changed. A few months ago, I was not the type of guy to religiously use hand sanitizer. Now though as rain blurred my windscreen and limoncello filled my nostrils, I watched two young police officers pull on full protective clothing outside of a medium sized residential care home on the outskirts of my hometown, Gloucester. I learnt later that they were undertaking this task to free up capacity amongst medical personnel.

Sat there I thought back to visiting the care home in the last few months. The gush of warm air as you open the door. The biro by the visitor’s book perched next to the inexplicable bowl of foxes mints. How a sea of faces would look up as you entered the living room; One resident, chair-bound and staring, another engrossed in knitting, and my Dad always, and I mean always, fast asleep. All of them frail, elderly and often with poor health. Each of them deemed ‘vulnerable’ by the new vernacular of our new age. And none of them with any real agency to control the threat that they faced from this new virus.

I still don’t know how many of the people that my Dad shared the final few years of his life with are now dead. I’m not sure I want to know. I also don’t know how many of those who survive him know he is dead. I realise now that there is a lot I don’t know about Dad’s final few years of life as I played little more than a weekly cameo part popping in and out of his four walled world. I think about how terrifying it must be now for those with the cognitive function to process what is happening as they remain isolated away from their friends and family in care homes reading daily about this deadly virus.

I can’t begin to imagine what it must feel like to work in a care home and be responsible for their health and wellbeing in this context so out of our control. As the news catches up with the role care homes play in this global pandemic though the numbers that are following are terrifying. The ONS has already recorded over 5,000 deaths but this figure is likely to be much higher. As Full Fact say:

“[many of the] unexplained extra deaths in care homes and private residences are in fact Covid-19 deaths, and we’re undercounting the size of the epidemic”

The enormity and scale of this crisis isn’t always evident to those not on the frontlines – myself very much so included. But I promise you that I saw it in the body language of the two young police officers pulling on their protective clothing waiting to go into the care home. And I promise you it was more than evident in the staff member who greeted me at the back door. I saw in her so much tiredness. The tiredness that death brings. Worse though I think I saw in her the tiredness that suffering you can’t stop brings.

I asked if she is OK and she mustered a forced smile that meat little and said that she hasn’t hugged her child in weeks. I stood there helplessly in the rain that seemed to be getting worse.

We went inside, a few seconds respite from the rain. We started to pick up the pile of possessions I was there for. A small mountain piled in the corner of an unused communal room. We carried them together outside. Working quickly together but always apart. Large drops of rain running down each of the bin bags of clothes that we both bundled into the back of my car. At one point I made a joke about how much he owned but no one was around to hear it. In the silence that followed the latex of my gloves squeaked loudly against the plastic of the wet bags every time I dropped one into my car.

The whole transaction felt stripped of remotely appropriate interaction. I remember thinking that I wanted to hug her, to give her any strength I have left and to help her keep going. I wanted to tell her that in my eyes she is the nearest thing to a hero I’ve seen for doing what she does. I wanted to tell her how much her years of care of my Dad meant. Instead she handed me an envelope of 140 pounds and twenty-two pence of petty cash leftover, and I gave her a bottle of wine and some chocolate. I muttered something about being eternally grateful but the phone in her pocket rang.

It was so inadequate.

It kept raining and I got back into my car, stripped off my gloves, squirted the yellow limoncello smelling hand sanitizer onto my hands and started the engine. I left knowing I would probably never come back.

Sat here now surrounded by my Dad’s possessions I can say that I am grateful to the care staff, to the nurses, to the police. But this doesn’t even come close to communicating how profoundly important I know their jobs to be, how much I think we as a society owe to them and how angry I am that it has taken these truly awful circumstances for us to begin to appreciate this.

All I can do to make sense of it is write this and think how in retrospect I am embarrassed that I gave them a bottle of wine when they deserve nothing short of the world.

2 Comments

Filed under Gloucestershire, Health

Tagged as care homes, care staff, coronavirus, deaths, police

May 22, 2018 · 8:23 pm

A long journey…

My mum, Jackie, with her favourite cow, Emblem.

Yesterday was my mum’s funeral, the end of a long journey that started many years ago. Its initial stages were played out behind the scenes, out of sight, deep inside my mum’s mind. Unknown to any of us, friends or family, the 100 billion or so neurons in my mum’s brain started a countdown. These neurons in her brain threw out neurological branches that connected to more than 100 trillion points, allowing for thoughts and memories to be formed and recalled. Slowly, and completely silently, this number started to drop. With no fanfare, an incredibly awful and utterly incurable process began that would only begin to show itself years later.

When it did show itself, it did so relatively innocuously. It was the odd repeated question, the occasional double take, the subtlest of shifts away from engaging in conversation.

The science behind Alzheimer’s tells us that the areas of the brain most commonly affected early on are those that are used for learning and planning. I remember patiently sitting with my mum trying to explain to her how to use her new mobile phone. The simplest instructions seemingly lost in the seconds following the conversation. In retrospect I can see the folly of trying to explain, and reexplain, something new to my mum. That I failed to mitigate my own behaviour, let alone expectations, to allow for the early onset dementia is both something I regret, and something that makes me feel embarrassed.

How unequipped I was to support my mum in those initial stages leaves a deeper sadness in me now than the ending of her story. She was preparing for one of the hardest journeys of her life, and I turned up with no shoes to walk in, maps to direct me or rations to sustain us. I was woefully ill-equipped.

In retrospect, there was still so much left to celebrate at this stage and instead I was too focused on the immediate problems and challenges in front of me. The fixation on the next steps trying to ‘fix’ these problems blinkered me from spotting the wider landscape of where we were, how we got there and how much further we still had to go.

I remember asking questions about gardening and composting and getting encyclopaedic answers disguised under a subtle humble demeanour of a women with a life time of experiences not used to being asked to share them. The lack of notebook and pen in hand resonates strongly now to illustrate my own failings at the time to appreciate the delicacy of these thoughts that could dissipate at any moment.

By the time I spotted the severity of the journey ahead, my mum had been walking solo for years. Everyday a confusing challenge, walking a journey no one would chose to take. Each day trying to guide herself with sheer willpower through an ever-changing landscape.

To try to support her I took my first significant step in equipping myself for this journey. This was to read Oliver James’ book ‘Contended Dementia’. Although far from the miraculous saviour text some of its proponents make it out to be, it did set me off in the right direction. It was from this that I accepted that parts of my mum’s memory, and what makes her who she is was slipping away. I set about ‘relearning’ my relationship with my mum. This was beyond tiring and involved unlearning a lifetime of habits. My questions soon ceased to be part of our conversations. They were instead replaced with an ever-changing melody of chitter chatter which at times danced as freely as the topics that passed through her mind, while at others were strictly kept to subjects I knew to garner a positive reaction. I learnt the joy of hearing about parts of my mum’s life that were previously never mentioned and my curiosity about the patchwork of her earlier life grew. Even then though I struggled to prevent my focus returning to the ever-growing list of things we couldn’t do or talk about.

In retrospect, if I could change one thing from this whole journey, it would be to spend more time at each stage celebrating all that was left of my mum – the good, the bad and the utter complexity in between.

My mum had a fiercely proud personality, often contradictory in its nature, and a stubbornness that any mule would be proud of and in retrospect she plodded on this journey as any mule would – proudly, quietly and without complaint. She would never ask for help and would scorn the suggestion if anyone ever offered it.

And yet, in my mum’s mid-stage of dementia, I feel like I learnt new ways of interacting that allowed me to better help her. By just being with her and holding a conversation that was not threatening and didn’t highlight the missing memories I felt like, for a short period, I could carry some of the extra weight for her on this journey.

At this stage I began to spot the crucial role that emotions played. If I had a positive interaction with my mum, then I could tangibly see how these positive emotions lived on much longer than the memory of the actual interaction. Equally, if something distressed her it was clear that the anger, or hurt, or confusion would long outlast the initial problem. This moved me onto what I think of as the relentless optimism stage. Regardless of the reality I found a positive moment – the new flower that had just sprung in the garden, the fact that my wife was pregnant, that the sun was shining. The smallest of things resonated.

Again, I wish I had turned some of this optimism and positivity to all that she still had to offer at this stage instead of just distracting from all she couldn’t do. Whether or not this would have been possible I don’t know. I do know that I wish I had tried harder.

Later I would read that this importance of positivity wasn’t just my experience but one backed up by studies. One lead author of a study concluded by saying that “our findings should empower caregivers by showing them that their actions toward patients really do matter and can significantly influence a patient’s quality of life and subjective well-being”. It did for me. For some months, a year maybe, I could visit my parent’s house and let my reality melt away and interact with my mum wherever she was at that time. In her mind, if she was milking cows I would comment how good the fried breakfast was waiting for us. If she was worried about where her Dad was I quipped that I was sure he would have a good story to tell over dinner. If I didn’t know where she was in her mind I would look out of the window and say how special it was to be here at this time of year.

This is not to say it wasn’t incredibly hard work. Each visit I was constantly second guessing what was happening and trying to steer conversation away from any cracks in my mum’s memory road. I suspect though that this was just nothing compared to either her experience of living with the disease or that of my Dad’s experience living with her and for many years being her primary carer.

In the final year or so, it became harder and harder to muster these positive emotions. Verbal conversation became a less useful tool and suddenly I felt like I had slipped back to square one – back to being an unwitting bystander to my mum’s journey. At times I found ways around this. After the birth of my son, her grandson, we would sit together with her doting affection and my son performing back a series of giggles and smiles. It is hard, even after years of suffering from Alzheimer’s to not be cheered by the rapturous laugh of a baby. In the final months though we would more often than not sit in silence.

As these final months ticked by, I watched the seasons slip from one to another outside her care home window. This alone was enough to fill me with sadness to think how she once lived her whole life outdoors surrounded by animals. She was now sat in a thermostat-controlled room – I wasn’t sure of much at this stage, but I knew this was not right, and not what she would have wanted.

With the passing of the seasons so the number of neurons and connections continued to quietly drop. Basic functions disappeared but still, at times, there was the unmistakable facial expression or look that was uniquely my mum. In these last few months I spent more and more time feeling awkward and unable to help her. My weekly visits had slipped to every other week and sometimes longer and as a result the progression of her symptom became more pronounced between visits. By the end I would helplessly sit with her unsure if she knew if anyone was with her not.

Coming one time into the uncomfortably warm care home I found her slumped sideways on the chair. A member of care staff who was spoon feeding her explained to me that she had lost control of body positioning. Her eyes were glazed and focused on nothing in the distance. She weighed just over 40 kilograms. The length and severity of the journey she had been on had taken its toll.

Two days later she passed away.

When people now ask me how I am, I say I’m OK; that I feel both relieved and sad. A mix of emotions. But the more I think about it, the more I think this is the wrong question. There are much more pertinent questions to ask. How have I been for the last 8 years? How have I been throughout this long journey? At what point did I feel that the essence of my mum left leaving her body to keep on the journey? When did grief start? What have I learnt over the last 8 years? Do I feel guilty for not having done more? Do I feel proud for doing what I did? How did all those who loved mum struggle in their own ways to interact with this journey?

And then, and only then, a little for the here and now: how does it feel to be setting off on this next stage of life, on my own journey, without a mum that had, up until now, been a constant in my life?

At this stage, I’m not really sure.

11 Comments

Filed under Blogging, Health, Social comment

Tagged as Alzheimer's, Blog, Dementia, personal experience

September 5, 2017 · 4:55 pm

The partially privatised NHS patient transport system is failing us all

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.

1 Comment

Filed under Gloucestershire, Health

Tagged as Arriva Transport Ltd, Cheltenham Hospital, contract, Gloucestershire, NHS, Transport

January 8, 2017 · 5:42 pm

Reflections on my Mum’s advanced dementia

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.

2 Comments

Filed under Health, Social comment

Tagged as Advance dementia, Care home, death, Dementia, dying, Hendri Coetzee, Living the best day ever, Living with

December 10, 2014 · 7:32 am

Living the best day ever

This is a cross-post of an article that I wrote for the Africa edition of ehospice news reflecting on the lessons learnt from Hendri Coetzee’s book ‘Living the best day ever’.

Palliative care, by definition, is both a science and an art form that involves accepting the reality of death. What you have left when you accept this is what the profession calls ‘preserving or improving the quality of life’.

Never before though, have I been challenged to re-examine the concept of ‘quality of life’ than when reading Hendri Coetzee’s book: ‘Living the best day ever’.

Hendri Coetzee was a South African living in Uganda perpetually searching for the best day ever. This search led him to become a legend throughout the extreme sports and exploration world.

In 2004 Hendri led the first ever complete descent of River Nile from source (Lake Victoria) to sea (the Mediterranean). The 4,160 mile trip took four and a half months and crossed two war zones.

Coetzee was also the first person to run the rapids above the Nile’s Murchison Falls, a section of river filled with some of the biggest white water in the world, and holding one of the highest concentrations of crocodiles and hippos.

He would go on to complete this section of river a further seven times and he remains the only person ever to run the section by himself. He also ran large sections of the upper and lower Congo River, walked 1000 miles along the Tanzanian coast and was the first person ever to snowboard the glaciers in the Ruwenzori Mountains.

In short, his résumé was one of the most impressive in the business.

It was not, however, his outlandish adventures that makes Coetzee’s book such a challenge for anyone to read, but his burning passion for life. Deep within all of his adventures was an intertwined journey to accept the fullness of life – to be able to appreciate it to its full. Only by understanding and ultimately accepting one’s death, Coetzee believed, can we truly experience a ‘quality of life’.

Speaking to some, and by no means all, palliative care patients I have come across a stillness – a deeper happiness – that I have rarely seen elsewhere. It is a happiness that comes fundamentally from within, a spiritual or psychological wellbeing.

Does this come from an acceptance of one’s own death?

Early on in the book, when undertaking the Murchison Falls section of white water, Coetzee writes: “In our society we avoid the thought of death as if recognition alone could trigger the event. Thinking about your own death is seen as a sign that mentally, all is not well. Some people live their entire lives with the sole purpose of minimising the chances of it occurring to them, instead of preparing for the inevitable. After avoiding the issue for so long, it is almost soothing to invite death on my terms.”

Reflecting on this, I wonder how many palliative care practitioners spend their professional hours encouraging patients to think about their deaths, to make preparations and to become comfortable with the idea whilst then perpetuating the myth in their own lives that life is infinite?

I only speak for myself when I write that I am too often guilty of this self-delusion.

To live a truly high ‘quality of life’ do we have to be comfortable with the idea of our death? I don’t know.

For Coetzee though, this acceptance was clearly linked to the life he chose to lead. Writing about his desire to keep going on clearly dangerous expeditions he wrote: “Psychoanalysts may diagnose a death wish, but missions like these enhance the appreciation of life. It is no coincidence that death and rebirth are related in all forms of religion and spirituality. When you accept that you are going to die, and it will be sooner than you think, it becomes impossible to merely go through the motions.”

Even the acceptance of my own inevitable death cannot push me to actions that so invite the prospect of death earlier than it otherwise would arrive. There is too much to live for to put my life on the line in search of living just that one day to the extreme – in the search for the best day ever.

That said, it is imperative for the palliative care community to understand the full spectrum of thought that exists out there. Just as there are people who are terrified of the concept of their own passing so there are people like Coetzee that can write the following words:

“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.’ Tibetans believe that one can find enlightenment at the moment of your death, as long as you prepared yourself for it during life…I have had the best day ever more times than I remember. So yes, I believe I am ready to die if that is what is needed to live as I want to.”

Hendri Coetzee was pulled from his kayak by a crocodile deep inside the Democratic Republic of the Congo and his body was never recovered.

At the end of his last ever blog entry though, after completing a section of river that many assumed impossible to kayak, he wrote: “We stood precariously on a unknown slope deep in the heart of Africa, for once my mind and heart agreed, I would never live a better day.”

I have no idea if – when it came – Hendri Coetzee was prepared for his death. It is clear though, that he lived life to the full and died in way he had to have expected.

Not many of us can say that and for that alone ‘Living the best day ever’ is worth reading. I think we can all learn something from Hendri Coetzee approach to both life and death.

2 Comments

Filed under Health, Social comment, Travel, Uganda

Tagged as ehospice, Hendri Coetzee, Living the best day ever, review

September 10, 2014 · 1:35 pm

Why I will be running for the African Palliative Care Association

It is important to state from the start, I don’t like running and nor am I any good at it. You would be right then to comment that it seems just a smidgen odd to decide to run 21 kilometres, out of my own free will, however good a cause it is for.

Well let me assure you that it is for an exceptionally good cause. I am fundraising for the African Palliative Care Association (APCA). APCA has been my employer now for the last 18 months. I am not too proud to say though that when I started working for them I knew little about palliative care – let alone palliative care in Africa.

I guess I was a little naive but I never expected the raw reality that I was met with on day one of my job. Literally millions of people suffering the most debilitating of pain because they don’t even have access to basic elements of palliative care such as access to pain medication.

I started to grasp the magnitude of what this actually meant when I went with staff from Hospice Africa Uganda on home visits. I met patients and their family who benefited from having access to oral morphine and who had grappled back a sense of normality in their life.

I remember meeting Bruno on the outskirts of Kampala. I remember how he had said to me that “You cannot be happy to see your dad suffering”. But most of all, I remember how deeply sincere he was when he thanked the hospice staff for coming, for caring and for bringing his monthly does or oral morphine.

This realisation though of how important palliative care services are only truly sunk in when I met someone who, like most Ugandans, did not have access to this service.

That person asked me not to publish her name and I can understand why. She spent 6 months nursing her mother who died of cancer as the rest of the family refused to let her seek medical help because of the financial implications. She watched her mother everyday lie in bed unable to move because of the pain she was in. With tears in her eyes she said to me one of the most powerful sentences that I have ever heard: “When I die, I don’t want to go like that.”

This is what APCA campaigns for. To ensure that no-one in Africa dies without access to palliative care.

Over the last 18 months of working for APCA I have almost every day had a realisation of some sort. Sometimes it is still about how dire the situation is in many parts of Africa. Other times it is about these faceless numbers impact on people lives. But increasingly these realisations come through meeting the varied and wonderful volunteers and staff who working to change all this.

Because of a small band of committed people there are now policies, projects and pain killers popping up all over Africa. The staff and volunteers I have met have at times humbled me but more often than not, they have inspired me.

In South Africa the national association is supporting the training of traditional healers in palliative care. In Uganda they have been training journalists and editors. In Zambia they are engaging the HIV AIDS community. All people who used to see themselves as separate to palliative care all now working to ensure everyone has access to these services.

When the palliative care community reaches out – others cannot help but to respond seeking out what they can do, how they can contribute to helping to end this perfectly preventable humanitarian disaster of untreated pain.

It is a natural response that I too felt.

But what can I, as a non-medical professional, contribute? And that’s when it struck me that even if I was already over stretched professionally, I could always do something that anyone of us could do…run a half marathon to raise money and awareness for APCA’s work.

And so, not only do I want you, if you can afford to, donate to APCA through my ‘Just Giving’ page. I would also love you to help me raise awareness of palliative care in Africa. Can you share this article on facebook, visit APCA’s website, or share this video?

Together I know we can do this – there are already hundreds of talented wonderful people out there doing the most amazing work. It might not be obvious how you can help but believe me, just by reading this article you have taken your first step.

There is a long-way to go and my half-marathon is really just the first few steps but together we can make a real difference.

You don’t have to believe me, just go and listen to patients both with and without access to palliative care and you will soon see the difference it can make.

1 Comment

Filed under Health, Uganda

Tagged as APCA, fund-raising, palliative care, Uganda

August 28, 2014 · 9:47 am

Book review: ‘The Unlikely Pilgrimage of Harold Fry’ by Rachel Joyce

This is a copy of a book review I wrote for the UK edition of ehospice news.

If ever a fictional book has illustrated the importance of ‘spiritual care’ as an integral part of palliative care, it is Rachel Joyce’s debut novel, ‘The Unlikely Pilgrimage of Harold Fry’.

Joyce’s heart-warming novel charts the unlikely story of Harold Fry. Harold is a retired Englishman who embarks on 600 mile walk from Devon to Berwick to visit an old friend who is dying of cancer. The walk, or pilgrimage, increasingly becomes interlinked with Harold’s own grief and spiritual pain as he becomes convinced that by undertaking such a walk he can not only keep his old friend alive, but also repent for the mistakes he has made in years gone by.

Although Harold’s friend Queenie is in a hospice with terminal cancer, the reader only gets brief glances at the physical, spiritual and social pain that she is experiencing. Joyce alludes to a lack of family or friends but this, it feels, is only mentioned to add impetus to the protagonist’s pilgrimage.

Indeed, it is Harold, and at times his wife Maureen, who the reader becomes best acquainted with. On a base level the reader begins to empathise with Harold’s tortured emotions towards Queenie and this only heightens throughout the walk.

From the beginning of the walk and the book the reader is aware of a pain lying just underneath the surface of Harold. Only as the walk, or as Joyce sometimes refers to it, ‘the journey’, develops do we begin to understand the nature and severity of Harold’s pain. Throughout the book one cannot help but draw parallels between Harold’s journey and other patient’s journey towards death.

What stands out in this novel though is the way Joyce cleverly explains to the reader how pain goes so much further than just the pain experienced by the patient. Friends, family and, of course, colleagues can be, and often are, effected by death and the process of dying.

Using this holistic understanding of pain, understanding it as more than just physical but also spiritual and social that can and does impact on friends and family as well the patient, Joyce takes the reader on a powerful emotional journey that is sadly too often out of reach in other novels that touch on issues related to death.

Using Harold’s well-being as an extended metaphor Joyce cleverly intertwines Harold’s hopes, emotions and fears with those of the readers and lets you experience the trials, tribulations and triumphs of Harold’s walk.

The context of which this journey is undertaken – the quintessential English landscape – is, I believe, mistaken by many as being the central theme to the book. Indeed in the reviews published on The Guardian or The New York Times, the life-affirming story and the societal implications of what it means to be ‘English’ or ‘Spiritual’ in the 21st century are drawn out as key themes.

For me, these were side-issues all playing in and relating to how we understand death and the role someone’s spiritual pain can play in that process. I took from the novel, and I believe this was intended as a key theme, the universality of spiritual concern and pain – something which palliative care practitioners have been advocating about for a number of years now.

This is illustrated in the fact that the issues around spiritual pain are shown from the perspective of an atheist (Harold). Regardless of religious beliefs we all have the potential to feel spiritual well-being and of course, pain.

Even when faced with the ultimate twist in the final chapters Joyce still refuses to deviate from what I felt to be the core theme of the book – Harold’s deeply personal anguish and how this not only impacts on those around him, but also on his own ability to be at one with himself.

‘The Unlikely Pilgrimage of Harold Fry’ remains one of the few fictional books I have read that deals with spiritual pain around dying adequately. This is not to say it deals with these issue comprehensively, merely that it acknowledges it to be a central part of what it is that makes us human.

It is perhaps this unlikely source of shared humanity that makes this first novel such a triumph and pleasure to read despite the difficult subjects it addresses.

1 Comment

Filed under Health, Social comment

Tagged as ‘The Unlikely Pilgrimage of Harold Fry’, book review, ehospice, Rachel Joyce

June 26, 2014 · 10:29 am

A visit to Mulago Hospital in Kampala, Uganda

As we enter the long corridor a strip light overhead flickers for a final few seconds before finally joining some of the other lights in the corridor that have long since given up and now do little more than collect dust. The few remaining lights throw strange long shadows down the corridor next to the wheeled beds that rest head to toe along the side of the corridor. It reminds me of the Kampala traffic jam that stacks up outside the hospital in the choking city heat.

No natural light makes it into the corridor but somehow the faint smell of congested traffic makes it up onto the third floor of Mulago Hospital to intermingle with the smell of humans and disinfectant. Avoiding the few harsh strip lights that still work, patients lie either in the shadow of their own headboards or with their thin sheets pulled over their heads.

As I walk down the corridor I step carefully over the relatives, water bottles, half eaten meals and other day to day items that are dotted across the floor. The patients rely on relatives for not just company but also for a lot of the day to day care they need. The smell as you pass some patients makes it abundantly clear that some patients are not receiving the care they need.

I glance sideways making small talk with my eyes to some of the patients whilst trying to keep moving on and keeping up with the representative of Hospice Africa Uganda who I am shadowing. Dressed in the dark blue shirt with a golden collar that marks her out as a member of the palliative care team my host takes large confident strides that exposes her familiarity with the surroundings. She doesn’t look down as she steps over brothers, books and broken bits and pieces. Instead she angles her thick note book that she is carrying towards the strip light above and looks over notes of the patients she is there to visit.

We push through some thick wooden swing doors on our left into a room that has one of the young patient we are there to visit as well half a dozen others. The patient we are visiting has terminal cancer and relies on the visits of the Hospice Africa team to bring oral morphine to help her with the considerable pain she would otherwise be in. My host from Hospice Africa Uganda goes straight to her bedside and lowers herself and her voice as she makes confident but kind eye contact with the patient. Speaking in the local language, Luganda, my host subconsciously runs her fingers over the shoulder of the patient as she speaks.

I am told that they ask how bad the patient’s pain is and decide that the current level of morphine is suitable. The sister of the patient, herself barely out of her teenage years, looks on with the juxtaposition of her own youth intermingled with the inevitable death that rests so close to her own, and her family’s, life. Looking as though she is unsure of her role in the nurse/patient dynamic that plays out in front of her the sister reconciles her position by just being physically close to her sister. Both protective and supportive she leans on the bed side throughout the consultation.

Selfishly my thoughts drift as the Luganda speech drifts around me. I start to think about how if I was diagnosed with terminal cancer I would want to be free, bathed in natural light and surrounded by fresh air not stuck in a overcrowded hospital. Almost immediately I catch myself and realise how ridiculous this thought is – all across Uganda there are patients who are dying of cancer in natural sunlight, surrounded by fresh air with their families who are also in insufferable pain because they have no access to the medical support they need. The pain medication, oral morphine, which the hospice team was there to deliver is little more than an aspiration to most cancer patients in Uganda – let alone early diagnosis and treatment.

Just before we leave, a colleague from the US organisation ‘Treat the Pain’ asks if the patient would like a Polaroid picture with her sister. For the first time a flicker of excitement crosses the patient’s face and she shuffles a symbolic couple of centimetres up the bed for the photo. Together the two sisters sit with their heads pressed together watching as their own images slowly appears in the Polaroid picture.

As we stand to leave we collect up our belongings leaving nothing but the sister, the patient and the Polaroid picture behind.

Speaking later when we are far away from the cluttered dark corridors of Mulago I talk to my colleague from Treat the Pain and we both reflect on how the photo felt like a symbol of how little we could offer as non-medical staff in such situations. The stories we write, the advocacy we engage in, and people we interact with will hopefully change the lives of many more patients to come, but for that one girl and her sister we could offer nothing more than a Polaroid picture – it felt useless.

I know in both my heart and mind that it is important to record stories, to take down testimonies, to photograph suffering. I know it, but sometimes it is hard to feel it in the intensity of the personal suffering you have barged in on, especially when you can offer so little in return.

Click to enlarge the photos.

1 Comment

Filed under Health, Uganda

Tagged as Hospice Africa Uganda, palliative care, patient photos, photos, Uganda

June 10, 2014 · 9:58 am

4 year old who featured in Channel 4 documentary on palliative care has passed away

I have today written for ehospice about 4 year old Abdurahmane who featured on Channel 4’s ‘Unreported World’ documentary who has sadly passed away just a few days after the powerful documentary was shown. Like so many that heard his story I am really sad to have heard this news. I am writing now to encourage you to watch this Channel 4 documentary that looks at access to basic pain medications in Senegal.

Abdurahmane has passed away but I hope his death, as his life was, might be part of what brings about the change so desperately needed in many countries around the world – by no means just Senegal!

This is what I wrote for ehospice:

The life of 4 year old Abdurahmane touched the lives of millions. Abdurahmane had retinal cancer and featured on Channel 4’s ‘Unreported World’ documentary looking at shortages of pain medications across Africa and specifically in Abdurahmane’s home of Senegal.

At the time of filming the documentary he had been in the hospital for three months, receiving chemotherapy, which had shrunk the tumour in his eye.

Abdurahmane had also been one of the few people in Senegal to receive morphine to control the pain he was in. The documentary explained that when stocks are low, the hospital pharmacy gives children priority to the morphine. Sadly though, even in this specialist unit the stocks of morphine sometimes run out.

Human Rights Watch last year highlighted that the authorities in Senegal allow only a very small amount of morphine into the country each year. It is thought they import as little as just one kg, enough to treat about 200 cancer patients when there is demand for tens of thousands of patients in severe pain.

It was through the story of Abdurahmane though that this problem was highlighted to the millions of viewers around the world who would have by now watched the documentary.

It was with great sadness then that a few days after the programme first being shown we learnt of Abdurahmane death.

The award winning journalist Krishnan Guru-Murthy who met Abdurahmane and built up a relationship with him broke the sad news on twitter saying:

“Very sorry to say that 4 year old abdourahmane who we filmed about morphine shortages has died”

The impact that Abdurahmane had on the viewers was immediately obvious in the string of responses from memebers of the public.

@krishgm Sad and awful news. Have thought of him so often since your powerful piece. RIP.

— Christine Botes (@christinebotes) June 5, 2014

@krishgm Sorry to hear that Krishnan. Heat breaking story but very important that you reported it.

— Prixpics (@prixpics) June 5, 2014

@krishgm how awful. Thoughts are with his family. The @UnreportedWorld was a brilliant piece of journalism. Let’s hope it creates change.

— dan slipper (@dj_slipper) June 5, 2014

It is hoped that Abdurahmane life and death will continue to inspire and will drive the change in Senegal that is so desperately needed.

More information:

You can watch the documentary for a limited period on the Channel 4 On Demand facility by clicking here.

Leave a comment

Filed under Health

Tagged as 4 year old, Abdurahmane, Health, Krishnan Guru-Murthy, palliative care, passed away, Senegal, Unreported World

May 29, 2014 · 7:56 am

Channel 4 looks at Africa’s scandalous shortage of pain medications

https://www.youtube.com/watch?v=LhiiIEa7Kl0&list=PLBKfErliSueNJ_4OE2_mUnjvVn5QhLnku&feature=share

“without the political will to change, vulnerable people remain deprived of humane treatment and an end to life free of pain.”

This is the conclusion of the Channel 4 documentary, ‘Africa’s Drug Scandal’ that I helped to coordinate through my work – the African Palliative Care Association. The documentary is due to be broadcast on Channel 4 in the UK at 7:35pm on Friday 30th May 2014.

I am posting about it here because it strikes me as a rare opportunity to get a large number of people thinking about an issue that is incredibly important to me.

The documentary focuses in on the issue of access to pain medications – predominantly oral morphine. Having access to such medication is something that most people in the UK take for granted. If you were diagnosed with a life-threatening illness tomorrow you would assume that you would be given the appropriate pain control that would firstly enable you to live your life to the full but secondly, would enable you to die a peaceful death.

For the majority of people in the world this is simply not the case. Indeed, as ehospice reported last November, due to a lack of access to inexpensive and effective essential opioids more than 4 billion people, over half the world population, live in countries where regulatory barriers leave cancer patients suffering excruciating pain.

In countries like Senegal where the documentary is set the situation is dire. Last October Human Rights Watch found that the government only imports about one kilogram of morphine each year – enough to treat about 200 cancer patients when there is an estimated need in the tens of thousands of patients!

And so, this is one of the corner stones of my organisations work – to lobby, offer training, educate and empower people to ensure that everyone has access to the pain medications they need.

It might seem like an abstract issue, but as Krishnan Guru-Murthy, the renowned Channel 4 reporter finds out, once you see a patient suffering in unbearable but perfectly treatable pain you instantly understand the importance of the issue.

Guru-Murthy concludes the situation amounts to “needless cruelty”.

I find it impossible to see how anyone, when faced with this reality could conclude anything different.

The programme can be watched live online here, on 4OD for 30 days after broadcast here, and you can read a preview in the Radio Times here.

Let me know what you think of it in the comments below.

Leave a comment

Filed under Health, Media

Tagged as 4OD, Africa, Africa's Drug Scandal, APCA, Channel 4, pain medications, palliative care, preview, Unreported World

April 7, 2014 · 1:34 pm

Watch the first of the Al Jazeera series on access to medical morphine

I occasionally link here bits of my work with the African Palliative Care Association that I think could be interesting to a wider audience.

Here is a short Al Jazeera report on access to morphine in Uganda that I helped coordinate. It serves as a nice introduction to the subject that leaves millions suffering from perfectly preventable pain.

https://www.youtube.com/watch?v=mrRUwTj_EMY

The film was shown on repeat last week. On Thursday they had our Executive Director, Dr Emmanuel Luyirika, on to speak about the subject. You can watch the interview here:

In Uganda, a regional leader in terms of medical morphine availability, only one in ten people who need medical morphine have access to it!

For more information:

Help out:

At the moment millions of Africans suffer terrible pain because they don’t have access to really basic pain medication that many people in Europe take for granted. If you feel like I do that no-one should be left to die in pain then please consider:

Donating a small amount to APCA.
Helping us raise awareness by sharing this article on Facebook or Twitter (share buttons at the bottom of the article).

1 Comment

Filed under Health, Uganda

Tagged as African Palliative Care Association, Al Jazeera, APCA, morphine, palliative care, Uganda

March 4, 2014 · 9:57 am

Patient photos from Hospice Africa Uganda

Last week I visited Hospice Africa Uganda. I was lucky enough to spend a couple of hours with some of the patients. I had a really wonderful time.

Sometimes people think of hospices as places where people go to die. This perception is so different to the reality I experienced. This is, at least in part, why I wanted to share these photos. During my visit I was blown away by the vibrancy of life the patients radiated.

Click on the images below to see them enlarged.

*Please do not reuse these photos without my consent. Thanks.

2 Comments

Filed under Health, Photography, Uganda

Tagged as Hospice Africa Uganda, patient photos

January 27, 2014 · 10:22 am

On genocide, palliative care and enduring hope

One of the many reasons I love my current job is because of the amazing people I get to interact with on a daily basis.

When working in palliative care you meet people who are being pushed both physically and emotionally and it never ceases to amaze me how people respond to these challenges with humour, courage and most of all, hope. This is true for both patients and medical practitioners.

Today I feel really honoured to have received an article from Dr Christian Ntizimira from Rwanda that marks International Holocaust Memorial Day by looking at the challenges to providing palliative care in a post genocide society.

If you accept my observation that death can push people in conventional circumstances to their limits both emotionally and physically then it is a small step to observe that genocide has the potential to rip both people and society to shreds.

But what sets Dr Christian’s article apart is not the description of how people’s lives were ripped apart and how millions were killed of displaced but how, in the aftermath of such suffering, Dr Christian has chosen to draw out a narrative of hope and courage.

If I was to draw one thing from this last year of working for the African Palliative Care Association – and more generally with palliative care practitioners – it is this optimism in the face of adversity.

Whatever happens, however bad, palliative care offers a simple framework to be able to help. I have seen this in the care patients receive right up to their last breath and Dr Christian powerfully illustrates this point in his article on genocide and palliative care.

You can read Dr Christian’s article visiting ehospice by clicking here >>>

Leave a comment

Filed under Health, Social comment

Tagged as genocide, International Holocaust Memorial Day, palliative care, rwanda

November 3, 2013 · 1:41 pm

Eugene Grant: “We need to talk about men’s health.”

This is a guest post by Eugene Grant. Eugene is a great friend of mine, a freelance writer and social commentator.

We need to talk about men’s health. Not the magazine filled with adverts of pricey protein bars and photo-shopped photographs of male models. I mean we need to talk about the health of men.

It’s not an easy subject. For many males – admittedly, this writer included – our psyches are modelled and moulded by traditional discourses of masculinity, hardiness and gendered provider/protector roles. Forget what you’ve heard about man-flu: we don’t get ill, hurt or tired. Well, much. And when we do, many of us abide by an Omerta-like code of silence that could inspire the envy of even the most conspiratorial Mafia family.

But it’s not true, and it’s not helpful.

Almost 20% of men are likely to be treated for mental health issues. Over the past three decades, three to four times more men have taken their own lives than women. There has been no point during this thirty-year period when the rate of suicide among women was higher than that of men.

One of such man was a close friend of mine. One of the hardest, toughest, most creative and humorous people I’ve known took his own life after years of trouble and turmoil most of us cannot – thankfully – even imagine became just too much. That was a few years ago. I wish his family knew how much I miss him, sometimes.

A year or so later, in 2011, over 10,500 men died from a different health condition: prostate cancer. Prostate cancer is the second most common cause of cancer death among men in the UK. That year, a further 2,000 men were diagnosed with testicular cancer, according to leading charity, Cancer Research UK.

Us men do get ill. Seriously ill. We do breakdown. We die – often before our time.

It is with all this in mind that this year, for the first time, I signed up to participate in Movember – growing a moustache, on it’s own (no beards allowed), for the whole of November – to raise funds for vital support and research programmes that help men and their families who live with these conditions, day-in-day out.

Movember is great fun – and possibly the best example of global, co-ordinated and (effectively) branded volunteer fundraising there is. Men everywhere are either taking part or know someone who is. Facebook is awash with clean-shaven ‘selfies’; gyms, pubs and canteens buzz with discussion about whether to grow a handlebar, or a walrus; whether to emulate Tom Selleck or copy Salvador Dali.

My girlfriend is utterly horrified and a staunch opponent of me growing a ‘tache’. I can’t say I blame her. I am under no pretences that, by the end of the month, I will look truly terrible: more like a prepubescent Ethan Hawke than a modern day Teddy Roosevelt.

But it is precisely the sacrifice of dignity – something else many men are bad at – that embodies much of the spirit of Movember.

After all, we’re not invincible; we do get ill; we do breakdown.

And that’s okay.

So let’s help each other, and our families, through it the best we can.

We need to talk about men’s health. We need to talk about your mo’.

If you’d like to donate, then please give what you can, if you can. To find out more about Movember or the programmes it supports, click here.

Leave a comment

Filed under Health

Tagged as Cancer in men, Eugene Grant, Movember blog, We need to talk about men's health

October 24, 2013 · 2:11 pm

On being a dyslexic

Yesterday I published on this blog a letter that I wrote to the Daily Nation newspaper about my dyslexia. I was a little surprised when people got in touch expressing their surprise that I was dyslexic.

One very well intentioned email said, “fair play mate, you aint a bad writter for a dyslexic.” I am still not sure if the email was tongue in cheek or not.

I was genuinely baffled though as to why this news would surprise someone reading my blog. As I pointed out in my letter, it is thought that one in ten of us are dyslexic – 700 million people worldwide.

Maybe one explanation could be that most people who are dyslexic remain undiagnosed and those who are diagnosed often remain in the dyslexic closet due to fear of discrimination and prejudice? The fact that I am open and frank about my dyslexia makes me fairly unusual.

My dyslexia has had, relatively speaking, a small impact on my life. This again, makes me a bit unusual.

I have a close to average severity of dyslexia and I have also been lucky in attending good quality state schools in the UK. As a result I now hold a masters degree and enjoy writing and, to a lesser extent, reading. However, it hasn’t always been this way.

I can remember in year two at school (as a 6 year old) complaining that the book they were giving me was too easy. My teacher duly gave me a harder book to read and sat with me while I read it. Inevitably, I stumbled over longer words and then forgot large passages of the book. My (generally very good) teacher’s response was to suggest I shouldn’t bite off more than I could chew and gave me back the easier set of books to read.

To varying degrees this was then a pattern of my early and secondary education. Trying to push myself and then in one way or another failing and so settling back into mediocrity.

In many ways I fulfilled a dyslexic stereotype of being quite outspoken and engaged orally in class whilst habitually under performing in written examinations. I can remember at school thinking, believing, that I was at best, an average pupil.

To a lesser extent I am still outspoken whilst still struggling to get the words in my head onto the page. Often I struggle to get words close enough for Microsoft spell checker to work out what I am trying to write. In situations where I have the time, this can be overcome by googling common phrases with the problematic word in to find the right spelling. Often however, my chosen words or means of expression are replaced with less appropriate, but easier to spell, alternatives.

All the way through school I found some things very easy and, of course, some things bloody difficult. For example, I have always been able to follow people’s arguments to their (often bonkers) logical conclusions very quickly. However, at the same time, if someone says something such as a word or a phrase that I don’t recognise I then often lose entire chunks of conversation. It is like I have no recall of what someone has just said or done.

As I am sure you could imagine, when you move into a new organisation that has its own vocabulary of acronyms and terminology this can create some difficulties.

After finishing school I went (with average grades) onto university where I scrapped a degree. I wasn’t diagnosed with dyslexia though until years later in the summer of 2008 as I was coming towards the end of my masters degree.

These “issues” I had been having all the way through school and university were finally spotted. Not by an academic but my partner who watched in a bemused bafflement as I tried (and failed) to write out a simple list. I was then lucky enough to be in an academic setting where I was (financially) supported through the various tests. Finally, after 22 years of British education, I had a diagnosis.

I cannot explain to you how good this felt. It was like a weight lifting off my shoulders.

More importantly than the diagnosis though, was the (crass) understanding of what was going on. Suddenly things dropped into place for me. It explained to me why I might have been finding some tasks so difficult and others so easy.

The diagnosis and the resulting reading on dyslexia also however brought into sharp focus how lucky I was. Whilst I ended up at university studying something I love, too many dyslexics end up in jail, taking their own life or suffering from mental health problems. A potent cocktail of ignorance, prejudice and inappropriate structures, results in perfectly able people being failed by our system.

I still maintain I am very lucky. I made it through this system despite my dyslexia because I was so lucky in other aspects of my life. I had supportive parents, great friends and a list of other sociological factors that weight your chances of success in our far from meritocratic society (skin colour, gender, sexuality, class etc etc).

And this is where I differ from most dyslexics. I loved school even if I wasn’t always very good at it. I thought school was great. I enjoyed learning and always seemed to come out with good enough grades to get me onto the next step of my education.

This experience in school (combined with a happy home life) meant that my confidence also developed (some might say too much). Time and time again though, it has been shown that one of the biggest hindrances dyslexics have is their own self-confidence which has been scarred early on in an education system which sets them up to fail.

When teachers wrote on my school report year in year out that Steve could do great things, “if only he applied himself” I thought, yeah…fair enough. I probably should work a bit harder but I am off to play football cheers. For many with dyslexia though they get this exact same comment on their report cards as they slog their guts out working twice as hard as the other kids, re-reading paragraphs, reciting lists of words to no avail. And, when they really can’t put any more effort in, and teachers chastise them for this, they come to the only conclusion left to them…that they are just not as smart as the other kids.

This, despite improvements, remains a chronic failing of our education system.

I once saw a comic describing his 1960s schooling as a dyslexic. All the way through his school life he was told he was a slow learner. Finishing this anecdote he commented, “40 years later our education system still hasn’t caught up. Dyslexics that struggle in school are the problem of the schooling system not the kids who are struggling”. After a long pause he said, “40 fucking years…and they call us the slow learners!”

4 Comments

Filed under Health, Social comment

Tagged as comedy, Dyslexia, personal account, schools, story, UK

October 24, 2013 · 9:57 am

Dyslexia – what do I know about it?

This is a copy of a letter I sent to the Daily Nation – Kenya’s leading newspaper.

Dear Editor,

I was pleased to see your article “Dyslexia: What do you know about it?” (22/10/2013) – It is important to raise awareness of dyslexia. With the right support and help, a child can prosper in any profession they choose despite their dyslexia. .

Like Rachel, I am also dyslexic. But, so are an estimated 700 million people world-wide – approximately 10% of the global population.

While my dyslexia was only formally diagnosed towards the end of my masters degree, I was supported in a good education system that enabled me to prosper both academically and socially. For this I am truly grateful.

However, all around the world – including in Kenya – children do suffer greatly because of lack of diagnosis. The academic and psychological consequences of unaddressed dyslexia can be devastating for all concerned – including family and friends. Dyslexia is one of the main causes of school drop-out, marginalisation and social exclusion. Studies show that dyslexic people are over-represented in prisons, among adolescents who commit suicide, and among people suffering from mental illnesses, including depression.

This is a global phenomena but one that is exaggerated in low and middle income countries.

I now work in Kampala in communications writing under deadline and pressure on a daily basis. It is a profession that I love. With the right support there is no reason why others with dyslexia cannot consider going into any career that they wish.

Yours sincerely,

Steve Hynd.

Leave a comment

Filed under Health

Tagged as Daily Nation, Dyslexia, Kenya, letters

October 23, 2013 · 10:01 am

Millions in Africa do not have access to morphine and suffer unnecessary preventable pain

This article was originally published on Left Foot Forward, Britain’s No 1 left-wing blog.

Palliative care

Palliation – literally, the removing of symptoms of life-limiting illnesses such as pain – has been brought sharply into focus in Africa due to the dual burden of an ageing population and an increased disease burden.

To give just one example, 70 per cent of people living with HIV worldwide live inside sub-Saharan Africa, a region which constitutes only 12 per cent of the global population.

Millions of these people in sub-Saharan Africa require palliative care to address the medical/physical, social psychological and spiritual challenges as a result of the life-limiting illnesses.

Despite the large demand, there is still little palliative care provision across much of Africa. Many countries do not have any element of palliative care: no hospices, no formal training for medical professionals, no or little integration of palliative care into national health systems and often little public awareness.

It is estimated that only 9 per cent of countries in Africa have palliative care integrated into mainstream health services.

One of the largest challenges facing pain relief efforts in Africa is the availability of, and access to, oral morphine. It is thought that Hospice Africa Uganda, a centre of excellence of palliative care in Uganda, can mix a three week supply for a patient for ‘less than a loaf of bread’.

Despite this, oral morphine is still not widely available to most Ugandans, let alone the rest of Africa.

Bernadette Basemera, a palliative care nurse based in Kampala, explains part of the problem:

“Morphine wrongly incites fear: Doctors wrongly fear patients becoming addicted, the police wrongly fear drug related crime, and members of the government fear falling short of international drug control frameworks.”

As a result of this fear, millions do not have access to morphine and suffer unnecessary preventable pain.

In recent years however, there have been signs that this might be a thing of the past. In the last two years alone four countries – Rwanda, Swaziland, Tanzania and Mozambique – have all adopted stand alone palliative care policies.

Although policy development does not immediately translate into oral morphine availability, a number of countries such as Kenya, Nigeria, Zambia, Namibia Ethiopia and a few others have improved access to oral morphine. Meanwhile Hospice Africa Uganda, in a partnership with the Ministry of Health of Uganda, continues to produce and distribute oral morphine whilst at the same time offering training courses to practitioners from all over Africa.

At the heart of these developments are passionate workers like Bernadette. Once again working late, Bernadette describes why she wants to work in palliative care, saying:

“Palliative care is the sort of care that you would hope you and everyone you care about receives. No one wants to think of a loved one suffering unnecessarily.”

Bernadette offers a simple motivation for her work in palliative care. This simple motivation, however, could benefit millions of Africans. Palliative care needs to be rolled out, and people like Bernadette might just be the way to make it happen.

1 Comment

Filed under Health, Uganda

Tagged as Africa, Blog, Left Foot Forward, morphine, palliative care, Steve Hynd, Uganda

September 20, 2013 · 9:30 pm

Reflections from a palliative care conference

Delegates at the joint APCA/HPCA palliative care conference

I have just returned from the African Palliative Care Association and Hospice Palliative Care Association of South Africa joint regional conference in Johannesburg, South Africa and I am inspired.

This was my first palliative care conference. A year ago I didn’t even know what these words even meant. Before the conference started I could have told you about palliative care and perhaps more importantly why it is important. I would quite possibly have waxed lyrical about it being everyone’s right to live a life free from preventable pain. I might even have told you about someone inspiring that I’ve met who has spoken about the importance of palliative care to them.

But, if I am being honest, before this conference I wouldn’t have really felt it.

Something in the way I think about palliative care has changed over the last few days though. Trying to put my finger on exactly what is difficult – so much has happened. It could have though been the moment when a Ugandan journalist who I was sharing a stage with let a single tear drop roll down her cheek as she talked about her Aunty being unable to access basic pain medication in her dying days.

It could also have been when a complete stranger, who I still don’t know the name of, approached me and talked to me about the burden of feeding her bed bound mother every day as she was too frail to feed herself and that the local hospital would not accept her because, so they said, “there was nothing wrong with her”.

It might even have been that unspoken moment when a delegate was asked if she had children and after a moment’s pause she responded that, she “used to”.

But of course it was a cocktail of this and more. It was spending 4 days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the palliative care that they need.

People who had talked the Bush administration into setting up a fund for palliative care in their HIV response programme. People who had pioneered palliative care in Africa 2 decades ago and were still as passionate and articulate as they ever were. People who felt a guilt for attending a palliative care conference because it meant that they were away from their patients bedsides for just under a week.

The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.

On the final evening of the conference there was a diner reception. As I was standing watching delegates dance, joke and chatter, I thought to myself that it felt just like a family reunion. There was a tacit acknowledgement that everyone understood, at least on some level, why everyone else was there. Just like a family is bound by the bond of blood so at this conference it felt like there was an unspoken bond in the knowledge of, and passion for, palliative care.

As with all families though, there also exists unspoken traumas that rest just beneath the surface. But standing watching delegates dance I reflected on what I felt to be the strength of this “palliative care family”. Palliative care gave each member the opportunity to be able to share these traumas that we all have with each other. Everyone was accepting and expecting to offer a ear when someone needed to talk about losing a patient, friend or loved one.

During one of the workshops Reverend Rick Bauer made a comment that stuck with me. He said, “When you are talking to a patient the most important thing you can do is be there 100% with them at that moment.” I think what made the atmosphere at this conference so special was that, almost without realising, delegates were 100% attentive to those around them and to others commitment to rolling out palliative care to all those who need it.

Leave a comment

Filed under Health

Tagged as Africa, APCA, conference, HPCA, palliative care, Rick Bauer

Category Archives: Health

Bursting the balloon on the new Tory war on drugs

To the care staff, you deserve the world and I gave you a bottle of wine

The partially privatised NHS patient transport system is failing us all

Why I will be running for the African Palliative Care Association

A visit to Mulago Hospital in Kampala, Uganda

4 year old who featured in Channel 4 documentary on palliative care has passed away

Channel 4 looks at Africa’s scandalous shortage of pain medications

Watch the first of the Al Jazeera series on access to medical morphine

Patient photos from Hospice Africa Uganda

Eugene Grant: “We need to talk about men’s health.”

Dyslexia – what do I know about it?

Millions in Africa do not have access to morphine and suffer unnecessary preventable pain

Reflections from a palliative care conference

Nice to Tweet you! Follow me on Twitter

Email Subscription

Blogs that people have enjoyed

Thanks for visiting

Category Archives: Health

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Be one of the cool kids and share this article

Email Subscription

Blogs that people have enjoyed