Category Archives: Health

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.

Advertisements

Leave a comment

Filed under Gloucestershire, Health

Reflections on my Mum’s advanced dementia

“Death is coming for us all…the day we will have to face the crossing will come sooner than we think. I hope my day is many many years away, but… I don’t want to make the greatest leap in life in a vague dream. I want to have the chance to look it in the eye, to say: ‘You have had me in your sights all your life, but it’s on my terms that I come.’” Hendri Coetzee – Living the Best Day Ever

 

Sitting across from each other on slightly uncomfortable wooden chairs in the care home I watch my Mum interact with one of the staff. The young girl lays her hand on my mum’s shoulder, raises the volume of her voice slightly and asks if “everything was alright dear” and if my Mum would “like any help?”.

My mum looks up at her and smiles with wide unfocused eyes. The staff member smiles back, hovers awkwardly for a moment trying to decipherer what this blank stare means before finally she walks over to another resident. As she makes her way over to a lady sat hunched in the corner I look back at my Mum and catch just the faintest flicker of a death stare from behind her eyes. It was an unmistakable reflection of something deep within her that these days only occasionally surfaces. Today this was a split second of a “fuck off am I your dear”.

Of course, I could have imagined it, I could have simply wanted to see a bit of her old self and so read too much into a distant stare. But, in that moment I think I saw my Mum: proud, wanting to help others – not wanting to waste people’s time in being helped, and ultimately using anger as a shield to hide away from all the insecurities and uncertainties of her life.

She focuses her eyes back on me, a second of surprise or alarm gives way to a meandering anecdote about the walk she believes she had taken that morning over Dartmoor. I ask if she saw any deer and she responds that she had, but only in the distance. This follows a second of silence and a drop in her eyebrows before she asks if I was OK to count? I promise her that I was more than happy to count to which she scoffs and says she doubts it. I once again miss the nuance of her reality.

Asking questions of dementia patients often only increases distress and confusion and so I try to steer the conversation back onto safe territory and say it was a beautiful crisp winters day outside. Her eyes look at me. One, two, three. Seconds pass with no response. I try a new path. I tell her that I recently spoke with her nephew, my cousin, and that he is happy and doing well. One, two, three. Eyes wide. No response. I try three of four times more and get little in response.

I decide not to push conversation. I sit with her in the weak winter sun surrounded by the stuffy air of the car home. Silence.

In the silence my mind jumps to memories at random. I think back to my mum cutting all the fire wood for the house by hand insisting that she was perfectly happy with her bow saw and no, she didn’t want me to come around with a chainsaw. I think back to her carrying heavy trestle tables out of the local scout hut as all the other mums stood and watched. I think about her slapping down any idea or suggestion that she might in anyway need any help.

With these thoughts in mind I smile at her thinking that I might get going soon. She doesn’t smile back. The staff member approaches and puts her hand on Mum’s shoulder and, just before Mum smiles up at her, she gives her a split second of that recognisable death state. The staff member either doesn’t notice or chooses not to.

The thing I feel saddest about when I leave is that Mum has so little capacity, so little control. Despite both the care home and my family doing all they can, we are no longer able to play by her rules and there is nothing we, or she, can do about it. She is left to be looked after by others. She is clearly being looked after well but they also clearly miss the very essence of her. I don’t think I am sad that she will pass away in the coming, weeks, months, or possibly years. I am just sad that it must be like this, not on her terms.

 

2 Comments

Filed under Health, Social comment

Anti-tobacco campaign publishes anti-Semitic cartoon

For most the depiction of large nosed Jews oozing wealth and disproportionate business influence is one that we solemnly associate with an evil that existed in the previous century. These offensive caricatures are something associated with the horrors of the anti-Semitism that swept across Europe and which played an intricate role in the death of over 6 million Jews in the holocaust.

For the first time in my life I today saw such an image, not in a museum or a historic article, but on a live contemporary campaigning facebook page.

The ‘Tobaccokills UG’ facebook page aims to ‘Support the Tobacco Control Bill and help to reduce the negative effects of tobacco-use in Uganda’. It has over 41,000 ‘likes’.

Yesterday it published this overtly anti-Semitic cartoon:

A screenshot taken from the 'tobaccoKills' Facebook page

A screenshot taken from the ‘tobaccoKills’ Facebook page

At the time of publishing the cartoon had already been shared a dozen time.

The cartoon takes little analysis to draw out the obvious anti-Semitic undertones. The projection of the ‘greedy’ and ‘powerful’ business man with physical characteristics such as his large nose all point to offensive Jewish caricatures.

In case there was any doubt the cartoonist then includes a speech bubble that states ‘Sorry but your health maybe hazardous to our profits’.

The subtext is clear: ‘Jews care more about money than they do people’.

To the adminstrators of the Facebook page I repeat the comment that I left when I first saw the cartoon and have so far not received a response for….please remove the picture and apologize for publishing it.

1 Comment

Filed under Health, Media, Uganda

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’. 

kadoma1
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

Does drinking urine cure joint pains?

Hynd’s Blog reported before on how Uganda’s New Vision asked the question – ‘Is Panadol made from dead people’s brains‘.

Not to be outdone the Daily Monitor – the main rival paper to the New Vision – today asked – ‘Does drinking urine cure joint pains?’

Monitor
After offering a slightly cyptic answer which included the phrase,  “People have eaten cattle hooves for backache” the article does finish with the relieving (geddit) suggestion:

“Please seek medical treatment for your knees instead of contemplating drinking a waste”

Once again, a hat tip for some wonderfully obscure journalism.

Leave a comment

Filed under Health, Media, Uganda

The completely false Daily Telegraph headline: “Cannabis as addictive as heroin, major new study finds”

heroin use
The Daily Telegraph yesterday ran a story with the headline “Cannabis as addictive as heroin, major new study finds”.

The article opens reasserting the same headline phrase “Cannabis can be as addictive as heroin or alcohol”.

As I read through the article my ‘bullshit-o-meter’ that was already triggered by the headline started to go through the roof. I was fairly sure that quite a lot of what was written simply could not be true.

After I finished reading it I dismissed it as more sensationalist twisting of real research and thought nothing more of it until…I saw that a (slightly more than me) conservative friend had posted the story on his wall.

My perpetual obsession to share my crass inclinations with people led me to want to reply.

As such to provide a more factual response that just ‘well this doesn’t tally with my own worldly experience’ (which it doesn’t) and ‘this isn’t the impression I got from a limited amount of reading on the subject’ I decided to do a wee bit of internet research.

As with most ideas though, someone else’s ‘bullshit-o-meter’ had already led them to respond, quite comprehensively, to the article.   This person is Edward Fox, the project coordinator for TalkingDrugs.org, a website ‘operated by Release, the UK-based centre of expertise on drugs and drugs law’ who then wrote a response for Huffington Post.

As it soon became clear, he is a much more qualified person than myself to write on this and so I leave you with his (edited down) words (read the full article here):

The UK tabloid hysteria has flared again over the dangers of cannabis, distorting recent research in an act that will prove detrimental to further educating people on the real harms associated with drug use….

On Addiction

The Telegraph’s claim that Professor Hall at any point stated that cannabis is on a par with heroin when it comes to addictiveness is a pernicious manipulation of his words. The exact phrasing he used to present his study was, in fact:

“If cannabis is not addictive then neither is heroin or alcohol”

This in no way equates to equal levels of harm, nor addictiveness, and at no point does the Telegraph cite a quote by Professor Hall that can back up their absurd headline. 

On Cannabis’ Impact on Mental Health

Both newspapers claim that Professor Hall’s study found that cannabis causes mental health problems. This is conveyed by each as a statement of fact, when it is anything but.

Professor Hall’s findings were, rather, that the link between cannabis and mental health problems such as psychosis and depression has been found to be unclear. Research has determined that cannabis may be a contributing factor or heighten the risk of developing a disorder, but to frame it as a sole causation of a condition is misleading given the need to account for other confounding variables e.g. family history of mental illness and socio-economic standing. 

On Cannabis as a Gateway Drug

The Daily Mail states that the study shows that “cannabis… opens the door to hard drugs.” This is, in a sense, true as Professor Hall did find from analysing different studies that cannabis users may be more likely to use cocaine and heroin.

However, the Mail fails to note that this finding is based on the exposure of cannabis users to the drug market and/or factors completely unrelated to cannabis, such as the “risk-taking or sensation-seeking,” of the user in question.

Thus, a pharmacological explanation of escalation in drug use is falsely left on the table by the Mail’s inability to go into further detail, suggesting that the effect of cannabis on the user in and of itself serves as a gateway to other substances. 

Fox then concludes with this pertinent point:

Demonising drug users and manipulating research findings to sell papers serves only to avoid an open and honest debate on how to properly mitigate the harms of illicit drugs. If parts of the media continue down this sensationalist road, they will remain a malicious hindrance to real progress.

Leave a comment

Filed under Health, Social comment

The health cost of the government’s failure to implement minimum pricing of alcohol policy

alcohol
A doctor friend described to me the ‘minimum pricing of alcohol policy’ as ‘one of the few genuinely good public health ideas of recent years’. As with most policies that are good for public health but bad for big business it was quietly dropped. The coalition government instead opted to bring in a ban on ‘below cost’ selling of alcohol.

A study published in the BMJ has, for anyone that had any doubt, put to rest any suggestion that the banning of selling below cost alcohol has any serious public health benefit and, significantly, has clearly restated the case for the introduction of minimum pricing of alcohol (as our progressive neighbours in Scotland have done – awaiting a legal challenge from the Scotch Whisky Association).

The BMJ study concludes with an unequivocal statement:

“The ban on below cost selling, implemented in the England in May 2014, is estimated to have small effects on consumption and health harm. The previously announced policy of a minimum unit price, if set at expected levels between 40p and 50p per unit, is estimated to have an approximately 40-50 times greater effect.”

The implemented policy of banning the selling of below cost alcohol was found to reduce harmful drinkers’ mean annual consumption by just 0.08%, around 3 units per year. Put another way that is just over one pint, per year, drunk less by harmful consumers of alcohol.

In contrast, the study found that a minimum pricing of alcohol set at around 45p per unit would reduce harmful drinker’s consumption of alcohol by 137 units per year. In terms of pints that is approximately 60 pints less a year.

We have known for a while now that the minimum pricing of alcohol disproportionately impacts on those of us who consume the most alcohol (in the study a harmful drinker was defined as the 5.3% of the population over 16 who on average consumer 58 units per week for females, 80 units for males).

According to the study 2.2 million of us Brits are harmful drinkers (17.3% – 7.2 million are ‘hazardous’ and 61.5% – 22.5 million – are ‘moderate’).

The study found that 30.5% of harmful drinker’s alcohol would be effected by a minimum price of 45p per unit while just 19.5% and 12.5% respectively for hazardous and moderate drinker’s alcohol would be effected.

But this policy analysis isn’t just about reducing the amount people drink for an abstract notion of it being ‘better for our health’. The study connects it closely to alcohol related deaths stating:

“Below cost selling would save an estimated 14 deaths and 500 admissions to hospital annually, compared with 624 deaths and 23 700 admissions for a 45p minimum unit price”

In short and written another way, the coalition’s decision to delay the introduction of a minimum price of alcohol is costing Brits 610 needless deaths a year and a whopping 23,200 hospital admissions.

Something worth bearing in mind next time you go into an overworked hospital.

Leave a comment

Filed under Beer, Health, Politics

Stroud News and Journal: ‘Couple to embark on gruelling charity run’

This is from last week’s Stroud News and Journal about my up-coming charity run aiming to raise money and awareness of the African Palliative Care Association.

It is not too late to sponsor us – just click here

Click on the article to enlarge:

Image (142)
Thanks to the SNJ for their support!

Leave a comment

Filed under Gloucestershire, Health, Media, Uganda

Why I will be running for the African Palliative Care Association

APCA_logo final_NEW STRAPIt 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

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.

Harold Fry
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

Children in war zones – how do we respond?

I co-authored an article for the International Children’s edition of ehospice looking at the impact that war has on children and what the response should be from the palliative care community. I thought I would share it here as it explores some interesting subjects around how the medical community responds to disasters…

“Jon Snow of Channel 4 news appeals to everyone to raise their voices against the war raging in Gaza and talks about the adverse effect this war is having on children and young people. This article asks what the palliative care response should be to the increasing death toll of children in war zones around the world.

In recent days reports have emerged from Gaza of the growing child death rate and the devastating impact this is having on families, friends and the community in the Gaza strip. One such report was that of Channel 4’s Jon Snow. His impassioned account of what he has witnessed during his recent trip to Gaza makes for difficult viewing.

At times clearly moved by what he has experienced, Snow reports on the impact that the bombing is having on children saying:

“Those people who live in Gaza are young. The average age is 17. That means that a quarter of a million is under the age of 10 years,”

He goes on to explain that when a densely populated area such as that of Gaza is targeted, it is inevitable that some of the civilians killed will be children. In the most recent upsurge of violence Snow’s report estimates that 1310 children have been wounded and 166 killed, with these numbers rising every day.

The long-term and short impact this is having on children and their families is almost impossible to quantify.

It is of course not just in Gaza that children are suffering.

From Ukraine to Syria, from the Central African Republic to South Sudan we are increasingly seeing how children are being affected by war. Not only in the death statistics but also through the exposure to the brutality of war we can see the devastating impact on children’s lives that will be felt for a generation to come.

The palliative care response
“How do we respond as a palliative care community to these distressing reports?” asks Joan Marston, CEO of the International Children’s Palliative Care Network. “Where there is so much suffering, what are we as the “experts” on death and dying doing to help those in regions that are difficult to reach; and how do we provide and justify palliative care when there are so many other conflicting needs that must be met?”….

Read the full article on ehospice

Leave a comment

Filed under Health, Middle East, War

The NHS and the blaming of rape victims

 

This poster was produced in 2006 and serves as one of many examples of institutionalized forms of ‘victim blaming’.

victim blaming

I was slightly horrified to see this poster re-circulating on social media this morning. It is yet another example of ‘victim blaming’ – the suggestion that a victim of rape was somehow at fault because of her behaviour. 

This poster becomes that bit more shocking when you spot that it is produced, published and distributed by our own government.

‘Victim blaming’ is one of those myths that I spend so much of my time trying to counter. Simply, a rape is never the victims fault – the blame always ultimately rests with those who put their penis inside someone without that other persons consent. 

Simple.

Or, in the words of the NHS (in a separate campaign to the ‘Know your limits’ campaign):

“If you have been sexually assaulted, remember that it wasn’t your fault. It doesn’t matter what you were wearing, where you were or whether you had been drinking. A sexual assault is always the fault of the perpetrator.”

If the NHS did want to draw some connections between alcohol consumption and sexual assault though without slipping down this dangerous road of victim blaming, they could have made the exact same poster with the words:

“approximately one-half of all sexual assaults are committed by men who have been drinking alcohol.”

One study on alcohol and sexual assault concluded it’s literature review saying:

“Depending on the sample studied and the measures used, the estimates for alcohol use among perpetrators have ranged from 34 to 74 percent”. 

The same study estimates that at least 20 percent of American men report having perpetrated sexual assault and 5 percent report having committed rape. The obvious conclusion to this is that 10% of American men have committed sexual assault after they have been drinking.

This issue is a serious one that involves facing up to taboos as well as a very well funded drinks industry. Our safety, not just of girls, but all of us depends on tackling this. I don’t think it is hyperbole to say we are in midst of an unspoken epidemic.

Sadly this contribution from the NHS to the debate adds little but does reinforce an incredibly negative persistent perception that the victim is somehow to blame for being raped.

 

1 Comment

Filed under Beer, Health, Politics

A visit to Mulago Hospital in Kampala, Uganda

DSC_0004
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.

DSC_0064
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.

DSC_0039
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.

DSC_0080

 

 

 

Click to enlarge the photos.

1 Comment

Filed under Health, Uganda

A global look at the UK’s obesity crisis

overwight

At work today I put my weight, height, age and nationality into the BBC BMI global comparison tool*.

Its results were stark. In Uganda (where I currently live) my body mass index (BMI) of 22.1 is higher than 71% of males aged 15-29. That said, it is also in the ‘normal’ range.

What caught my eye though was when I swapped around the country of residence to the UK. Suddenly it goes from telling me I have a higher BMI than 71% of Ugandan males of a similar age, to telling me I have a lower BMI than 78% of British males aged 14-29.

Both in Uganda and in the UK my weight to height ratio puts me in the minority – in Uganda for being bigger than average, and in the UK for being lower than average.

The fact that I have a healthier BMI than many Brits is perhaps not surprising considering that 67% of guys in the UK are considered overweight or obese (57% of women).

As an article in the Guardian notes:

“Fat, not thin, is today’s norm [in the UK].”

The same article however goes onto explain why we have stopped noticing how fat we are as a nation stating:

But studies show that we don’t notice because it has happened gradually and we have got used to seeing people who are overweight.” 

In short, if our friends and family are overweight, this reinforces a message that says we are ‘normal’ and not overweight.

This is of course nothing short of self-delusion. A form of denial with potentially serious consequences.

This self-delusion combined has allowed me in the past to put on weight to an unhealthy level. Like most people my weight fluctuates over the years. On one occasion a few years back I was slightly alarmed to notice that I slipped over 12 stone (76 kg – giving me a BMI of about 26 well into the overweight range) but I had not necessarily conceptualised that my weight was considerably too high or the health impacts that this was having.

This was partly self-delusion but also because I was surrounded by much fatter people.

I wonder how many other Brits (and middle-class Ugandans) would be equally alarmed now if they were to weigh themselves and place that on the BMI chart.

My guess is that many would be deemed ‘overweight’ who do not think of themselves as such.

Of course, this isn’t just a vanity thing, being overweight has serious health repercussions. For example, the length of your life is dictated by your weight, we know that on average moderate obesity cuts life expectancy by two to four years and severe obesity by an entire decade.

This is in part because obesity is closely tied to potentially serious and/or fatal conditions such as type 2 diabetes, coronary heart disease, some types of cancer, and strokes.  

Although perversely I think it is easier to live an unhealthy lifestyle in Uganda (carb heavy diets, sugary drinks, cheap beer, busy roads discouraging walking and cycling etc) I think it is much harder to be in denial about your weight here because of the relative skinniness of those around you.

Coming back to the UK for short periods from living abroad in contrast I was shocked how visually obvious it was that we are in the midst of obesity epidemic.

This global perspective doesn’t remove my own levels of self-delusion (especially when the prospect of another cheap beer is offered) but it does mean it is harder to ignore the obesity levels of others around you.

More information:

* Before someone comments, I accept that BMI is a crass tool for an individual’s weight. It is simply used here as a signpost to a wider problem of obesity in the UK. 

1 Comment

Filed under Health

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! 

unreported world

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.

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

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

“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.

unreported world

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

An atheist’s reflection on a prayer meeting

As a de-facto atheist people often assume that I might be troubled by being asked to attend or even take part in religious events. This is rarely the case and indeed I often find the opposite to be true. 

Today I attended a joint prayer meeting for palliative care practitioners from across Uganda who wanted to pray for the palliative care resolution that is currently going through the World Health Assembly. At the meeting I was asked as a representative of my work to read out a short prayer asking God to offer the decision makers wisdom and compassion.

Not only did I not mind this but in fact I found the whole event a real pleasure to attend. Let me explain why.

To start there was a wonderful feeling of unity at the meeting. This sense of ‘unity’ is what I chose to highlight when I wrote it up for ehospice news. It was also what I tried to capture in some of my photographs.

*Click to enlarge*

It was wonderful to watch how different organisations came together in a moment to share a common aim – the furthering of palliative care. It also got me thinking about the potential that faith has to break down hierarchy.

Uganda is incredibly hierarchical as a culture but in this short meeting the focus on the presumed ultimate leader (‘god’) broke down the created hierarchy.

It was both interesting and inspiring to watch.

So even being a hardened (and let’s be honest, argumentative) ‘de facto atheist’ I have to admit to finding this event not only a pleasure to attend but also pragmatically useful.

It brought people together in a powerful and profound way.

In my work, often with NGOs, I often stumble across stupid and badly thought out ideas. Some of them stem from a religious perspective but many don’t.

For as long as a religious meeting or belief system passes J.S Mill’s principle of harm test I cannot see any reason not to let people get on with it. And, in cases like today’s meeting, I cannot see any reason not to positively celebrate it.

Today’s prayer meeting not only passed J.S Mill’s ‘harm principle’ test with considerable ease, but it also I felt contributed something quite profound to the common good – a chance for colleagues and strangers to come together on an equal footing and to focus on what they have in common opposed to their differences.

 

2 Comments

Filed under Health, Uganda

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

aljazeera011613I 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.

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:

 

1 Comment

Filed under Health, Uganda

Having depression in public life

mind_logoWill Sandry, a Liberal Democrat Cllr on Bath and North East Somerset, has announced that he is taking a minimum of 3 month leave to give himself time to address what he describes as his “depressive illness”.

Will has had the deeply difficult situation of having what is essentially a personal and private issue forced into the public light. The silver lining is that people have, so far at least, responded with empathy and support even in the usually rancid comments section of the local paper.

Will’s honesty about his illness will no doubt make a small difference to people in and around Bath. It will help raise awareness of the nature and severity of depression (about one in ten of us will be affected by clinical depression at some point in our lives although the symptoms of this can vary massively – statistically that is around 8,000 of Bath’s 80,000 residents).

My heart goes out to Will because I have seen the impact depression can have on people’s lives and I cannot even begin to imagine how hard it must be to then have to air your own depression publicly for people to pick over and worry about.

I often feel a twinge of unease when private matters such as a divorce are mulled over in public. This feeling is somehow amplified when the private matter is a condition the person has no control over and which leaves them feeling vulnerable and out of sorts anyway.

In light of this I have no idea how Will is feeling at the moment but I send him my heartfelt best wishes for the coming months.

More information:

1 Comment

Filed under Bath, Health, Politics

I have malaria, but so did over 2 million others last year alone!

anopheles_gambiae
Yesterday I found out that I have malaria. For those of you who haven’t had malaria before I can promise it is no fun. The symptoms come in waves but yesterday I took myself off for a blood test because I had a driving headache, aching bones and muscles, felt like I needed to vomit and was having hot and cold flushes all morning.

As I say, it is no fun.

Here in Uganda though malaria is an alarmingly common occurrence.  90% of the country is considered by the WHO to have ‘high transmission’ rates. This is partly explained because it is a tropical country with lots of Anopheles mosquitoes (who pass on the parasite when they bite you).

But there are also sociological factors. Anopheles mosquitoes predominantly bite humans at night. If you sleep under a mosquito net this massively reduces your chances of getting malaria. There is a big NGO drive in Uganda to distribute nets (and research suggests that most people who get them use them) but millions in Uganda still sleep without the nets.  Only a few stupid westerns actually chose to sleep, without a net, under the stars on top of a rock after a day’s rock climbing!

But this issue is not limited to Uganda, over half the world’s population live in areas at risk of malaria.

In 2012 the WHO recorded 207 million cases of malaria worldwide. Out of these 207 million, 627,000 died. Although the disease affects large parts of the world, the deaths caused by malaria are an overwhelmingly African issue. 90% of malaria deaths in 2012 occurred in Africa.  African children are especially at risk – 460,000 African children died before their fifth birthdays.

But this is the real travesty of the situation – malaria, with early diagnosis, is completely treatable.  With early diagnosis and a simple course of medication malaria is treatable and leaves the patient (normally) with no long-term effects.

Because I went to the hospital quickly and started my medication within a few days of showing symptoms, in all likelihood I should be back to my old self in the next 2 to 3 days. So for the friends and family reading this, I’m fine, you’ve got nothing to worry about!

And there is some more good news, since 2000, the WHO has recorded a drop in malaria fatalities in Africa by 49% – this is largely through greater prevention methods (such as net distribution).

Malaria is one of the big killers. In the 21st century it doesn’t have to be like that.

For more information:

Leave a comment

Filed under Health, Uganda