Palliative Care in Africa

I originally wanted to combine this post with my previous post on palliative care. Not possible - personal and political.

In the UK there exists an extensive "hospice" network, largely funded by charity organisations.

Antonia is my best friend here - when I fell on some very hard times she put me up for more or less two years until she wisely told me to get out and get my act together.

Both Antonia's mother and maternal Aunt Gertrudes lived in her house. Both died whilst I lived there. Gertrudes suffered from what I imagine the medics call "dementia". But whilst she was physically able, she would make efforts to contribute to domestic life, sweeping the yard etc.

The palliative care in a home-setting was excellent but Antonia's family is relatively well-off. Here in Africa the quality of direct and extended family-care is very dependent on relative wealth, just as in the UK the provision of home-based palliative care is a greater hardship on the poor, although the closer proximity here of the extended-family certainly helps. However, there are no community nursing or social services. Fortunately for Antonia's mum and Aunt Gertrudes there was also a doctor in the family.

Inequalities of wealth have increased since I arrived in 1989. Back then we had a one-party state that had, since independence, tried with large amounts of foreign aid to provide the cradle-to-grave care that even we in the UK find an uphill struggle. The shops were empty.

But there were no old people begging on the streets, no street kids, rural-to-urban migration was low as people on the state-managed plantations were not allowed to starve, and as previously mentioned, we had an expensive primary and secondary healthcare system.

The collapse of the Soviet empire led to a massive decrease in foreign aid (although on the medical front Cuba still provides most of the best specialist doctors in the country). My Ukrainian dentist went home. Democracy came in 1992.

The IMF and World Bank hit us. Reform.

Now the shops are full. Old people begging on the streets, street kids, prostitution on the rise (although never a non-promiscuous society).

Home-based palliative care is becoming financially impossible for many families.

Sure, some sheltered-housing for the old has been built, there is a soup-kitchen for street kids in the city, financed by foreign aid and foreign charities ... but when you go town on a Saturday morning and see the lines of old people lining up outside richer shops awaiting a weekly charitable donation, when you see the street kids trying to sell you seed-bead necklaces or wash your car ....

One day Aunt Gertrudes couldn't get out of bed. She was dying. I cannot recall how many days it lasted but not long. One can often read the signs of imminent death in an old person, so as it approached, when she lost consciousness, immediate family was called.

I have no experience of death-scenes in any culture but what followed was weird, at least to me.

The family sat in chairs around her death-bed to watch her die. No movement, no conversation, no physical contact with Gertudes.

I was disgusted. I got a cup of water and a teaspoon. I sat next to her and gave her water drop-by-drop, wetted her lips.

Some 20 minutes before she died, Antonia told me to stop.

PS: I have just rung a friend to ask if this is traditional death-bed behaviour. No - it just depends.

PPS: There are some national palliatve care organisations aand centres in Africa but not many. The need is enormous - given the levels of cancer/HIV/AIDS/other diseases/physical problems on the continent. Visit here for the continental palliative care organisation.

Medical Update etc

Kezia started her last maintenance phase yesterday. Blood counts low so off the IV MTX and 6-MP and 5 days of the dreaded Dex this week - but only three months of treatment to go.

Jaime's 9th birthday today. Happy Birthday!

The Best of both Worlds

As I said in my post Aphorisms VI, Dr Rant pointed me to this excellent article, "The Best of both worlds: How primary care can save lives and money" by David Haslain, President of the UK Royal College of Royal Practitioners. Read it.

He argues convincingly about the cost and life-saving of primary care (GPs/family doctors in the community) and the relatively higher expense secondary care (specialist doctors and hospitals).

When I arrived here in this small island state of 1000 km2 off the coast of Africa in 1989 there were seven secondary care centres (hospitals) that also did the primary care. I.e. if you suspected you had malaria, you went to the A & E department of a secondary care facilty. Andif there were obviously more urgent cases than your own, then you would wait - no targets here. Out-of-hours just one doctor would staff A & E. If something specialised cropped up, s/hewould get on the phone to the specialist who would turn out of bed.

Some ten years ago I was walking in the mountains here on a Sunday when, in torrential rain, I slipped and the blade of the machete I was carrying embedded itself in the ground and my hand ran down its length deeply slicing the third three fingers of my right hand. Fortunately, I had a roll of toilet paper and a small towel in my rucksack, and we (I was out hiking with my good friend Vicente) wrapped up my hand and walked the remaining two hours back to the car. Then we drove another hour back to the capital with me steering one--handed and Vicente (having no driving license) manipulating the gearstick when I told him I'd depressed the clutch (fortunately, steering is on the left here).

Vicente wanted us to go straight to A & E. I said "Fuck that ... we're wet, we're covered in mud, I've survived three hours of arduous hiking and driving, I want to tell my partner (of the time) what is going on .... and more than anything I want a cup of tea!."

Half-an-hour or so later Vicente cycled home and my partner drove me to A & E at six pm. The doctor on duty looked at my fingers and called the Chinese surgeon - who spoke neither the national language nor English; The nurse in attendance was pretty savvy and managed to translate some, and as my Bachelor's degree, many years previous, had been in Chinese we managed to establish some communication. Diagnosis - I had severed my tendons in five places in three fingers - yup he was capable of doing micro-surgery on tendons but the surgical facilities to do micro-surgery were not available here.

A local anaeasthetic injection for finger surgery is painful, very painful. A very thin flexible needle is inserted deep between your digits and it hurts like fuck. I have seen someone faint from the pain.

So I asked him when I could have the stitches out - the reply was "three days, three weeks ...". Suddenly, my long-lost Chinese returned.

Fortunately the healthcare system here has been reformed.

Now we have one major secondary care centre in the capital city. We have what might me termed "polyclinics" in three towns, in which two have beds and midwives available.

Then in the rest of country we have health-centres whose services range from a malaria test to basic dental work.

BBC iPlayer Radio

BBC iPlayer radio will work fine under Ubuntu Linux and Firefox with the technique described here without Tor or Privoxy - but still no TV.

Under Windows Firefox BBC BBC iPlayer radio will automatically open in an Internet Explorer tab (if you have the IETab plugin installed) but won't play unless you have Tor and Privoxy running.

Aphorisms VI

It has been a long time since I changed the aphorism that appears under the title of this blog but on Monday Dr Rant pointed me to a paper (of which more in the next post) which quotes Aristotle and the definition of the term "Phronesis".

This pretty much describes the English expression "Jack of all trades, master of none" and my current employment. I have advised on and inspected antenna paint systems, I have quantified and provided analysis of diesel and transformer oil analysis reports, I have trained people in 950 KW generator maintenance, I have scuba-dived with no training (I got down 4 metres and my ears were bursting - I surfaced and the contractor, knowing it was my first time, told me "Oh we forgot to tell you how to alleviate the pressure difference"! - I've since undertaken a PADI course!), I have shown transmitter technicians how to update EPROM chip software, I have advised on road construction, administered a LAN etc etc. I am not qualified to do any of this ... but, unlike many people, I will admit my ignorance and will ask questions or research. I am grateful to my school and university education for teaching me to do this.

But this aphorism also applies to the conundrum I posed in my recent post What if ...?

And it also applies to my next post ...

I love my previous aphorism ("Let the story tell itself or let the child tell it”), but it is time for a change ... my workplace doctor has even written our new one up on his office's whiteboard!

A Photo

Finally my brother sends me a photo ...

What if ... ?

Dr Crippen got me thinking about palliative care as you may have seen by my post on Friday last. Particularly for children, their siblings, their parents, carers and family ...

What if ... as Rob has put it, the other shoe drops ... and Kezia relapses? She will require a bone marrow transplant, a compatible donor will have to be found. Her chances of survival diminish dramatically and the transplant can fail as Adrian Sudbury has shown us.

As an adult or a young adult, such as Adrian, Josie Grove, Davo, Lucia, and H., when to stop an increasingly painful treatment regime with miniscule probabilities of success, make it "easier" to decide to let the disease kill you and move on to a palliative care regime that will hopefully lessen the pain of dying. It is your decision.

What if ... in a year's time Kezia relapses?

What if ... further treatment fails?

At the age of five, six, seven years-old a child cannot make the decisions Josie and Davo made and Adrian has made. It will be our decision as her carers and parents. We will have to sign her death sentence - our only choices will be for her to die slowly with much suffering or to die more quickly with less suffering.

The clinical side of paedatric palliative care does not cause me much worry ... how much morphine or whatever painkiller, she would be prescribed. But the psychological side does ....

Many carers take comfort from their religious faith and say to their loved one, whether adult or child, "You will soon be going on a journey to be with the Bunny Rabbits and Angels - Mummy and Daddy won't be with you on the journey but we'll join you there later". Heaven as a super-kindergarten.

In fact, Kezia already has her visa to get through St. Peter's Gate as my dear Aunty Laura (who phones Nanda every week) converted to the Church of the Latter Day Saints (Mormons to you and me) and they baptise everyone, living or dead, whose birth, death or marriage certificate/record they can get their hands on. So Kezia has a guaranteed place in Mormon heaven ... deity forbid!

I have no religion. Nanda is a "token Roman Catholic" (baptisms, weddings and deaths - as most people here and as most people in the UK).

What would we say to Kezia and her brother Jaime ?

Palliative Care

Dr Crippen posted yesterday on palliative care.

What is palliative care? Care for those who are dying - slowly. Faster or slower - it doesn't much matter as they are still in pain, need pain control drugs, need their incontinence cleaned up, need the bedsheets changed etc etc.

Most palliative care is for older people as their bodies begin to fail. Their partners and carers are of similar age and find it hard to cope. But there are also many middle-aged, young adults or children.

There are some government-funded NHS palliative care "hospices" around the country ... but not many. Dr Crippen informs me that most of the slowly-dying patients with no hope left are left in a geriatric ward at a hospital in the furthest bed from the nurses' desk in the ward (so they can't smell the shit).

The government has just announced it wants to encourage you to die in the comfort of your own home amongst your loved ones. Dr Crippen approves - if your 80 year-old spouse can cope with this, your GP, District Nurse, social worker etc can provide you with the support you need.

But the NHS cannot provide you with the support you need.

Encouraging us to die at home rather than in an under-funded and scarce resource is not, as Dr Crippen notes, a measure of government sympathy for those dying but another cynical attempt to cut NHS funding - in this case on hospital-beds, hospice space and resulting staffing etc

A.'s middle-aged active husband died of cancer at the same time as her 17 year-old daughter H. is going through leukaemia. A. now has no husband, three children and has to take her oldest child to hospital 50 miles away ...

So I will question the palliative hospice system (in the UK) - is a hospice for Kezia (4 years-old and alive and doing well), Lucia (17 years-old alive and doing well), Adrian Sudbury (27 years-old dying), Christian Jago (middle-aged and dead) etc etc going to have the same needs as that of the 60/70/80+ year old? Will there be a paedatric/adult/geriatric palliative care doctor/nurse? I doubt.

Christian and Colin Jago had to move from their idyllic home in NW Scotland into a grubby inner-city Aberdeen flat, and soon afterwards Christian had to move into a hospice to die soon afterwards ...

Update: article in the US Candlighters journal on palliative care for children.

All Quiet on the NHS Front

Drs Crippen and Rant have posted nothing about the Department of Health (DoH) and the National Health Service for almost all of two weeks.

Has the DoH gone on recess? Taking its holidays? The Secretrary of State for Health, Alan Johnson, is strangely silent. Is he on holiday? Under-secretary Ben Bradshaw is left as spokesperson for the DoH.

The UK Parliament doesn't seem to have broken up for its summer holidays yet - Harriet Harman, Deputy PM, filled in for PM Gordon Brown during Parliamentary Question Time last week whilst he attended a G8 "Summit".

The latest patient survey of GPs shows satisfaction with GP opening/access time by a decrease from 84% to 82%, even though GP access time has increased by 24%. However, it also shows that patient satisfaction with other GP services has increased. Ben Bradshaw praised the report. Now the government is going to make the GP survey quarterly - will either the GPs or the patients appreciate this?

I look at the BBC UK and Health website pages everyday. Right now, nothing on the DoH and the NHS except doctors accused ofeuthenasia and/or other malpractice (amputating left- hand instead of the right). Nothing on the Darzi Report - can anybody, including Members of Parliament (and myself) be bothered to read it? Can anybody?. Nothing on the British Medical Association's annual conference last week.

My children break-up for school holidays tomorrow ((Thursday).

Drs. Crippen and Rant seem lost for words and can only post about rogue entreprenurial doctors.

BBC iPlayer revisited

(Note: I've had to revise this post since I wrote it on Monday - as today I've dismally failed to get the BBC iPlayer to work under Ubuntu Linux. Details under Update at the end of the post - I do have to admit and post my failure as well).

I predict this will be less popular than my previous posts on accessing the BBC iPlayer from overseas (they stop you by identifying the country from which your IP address originaates) as I am sure, regrettably, that most of my readers are Microsoft Windows and Internet Explorer users.

Anyway, to summarise our previous BBC iPlayer hacks (here and here):

a) One can anonymise your network IP address by using the Tor Onion router that basically sends out your network location through a Tor relay router in another location with a different IP address/location. One can configure Tor to be geographically specific as to where your request exits on to the web. So in this case you need a Tor relay in the UK in the torrc file.

b) One needs to tell your browser not to broadcast your IP address. For this you need to route your web requests through a proxy server. This will set the IP address of your machine as the internal IP address of every machine in the world (127.0.0.1) and send out your web requests through a non-standard http port (8118 as opposed to the standard http port of 8008/8088). Initially I used the extenal proxy server, Privoxy and then discovered a Firefox proxyserver add-on named Foxyproxy.

c) The BBC iPlayer only works with Microsoft's (Windows) Internet Explorer (what is it with this MS and UK public institutions?). An enterprising soul wrote an an add-on for Windows Firefox that allows you to open an IE tab within Mozilla Firefox. And BBC iPlayer (streaming) worked a dream.Unfortunately, the Foxyproxy add-on does not work with Linux Firefox.

So I've been looking for at a way of getting BBC iPlayer to work under Linux.

There are Linux versions of Tor. There are Linux versions of Privoxy.

And today I discovered IEs 4 Linux.

A (non-Microsoft) version of Internet Explorer for Linux. Installtion was easy, as were Tor and Privoxy. Configuring all of them was easy. Worked first time.

I have one last task to do - Linux Tor GUI (Vidalia) does not show the geographicaal locations of the relays - so I need to discover the UK ones and rewrite my Tor configuration file.

Then I'll see if I can get BBC iPlayer working in Linux.

Updates:

1. I started by copying the currrent Tor UK relay ExitNodes from my Vidalia torrc on my work Windows machine to Vidalia's torrc file on my Linux machine. Seemingly starting Tor through the Vidalia GUI wouldn't force the ExitNodes to be in the UK.. So I had to start edit the torrc file in Tor's native folder and start Tor from a Terminal (/etc/init.d/tor start).

2. The Internet and web appeared to recognise my anonymity through Tor and Privoxy.

3. Although IEs 4 Linux claims to install Adobe Flash Player, necessary to stream video from the BBC iPlayer site, the BBC iPlayer site tells me I need to download Adobe Flash Player which IEs 4 Linux claims to have already installed.

4. IEs 4 Linux requires Wine (that allows Linux to run Windows products - tho' I haven't worked out how to use it yet).

Any help would be appreciated.

Death by Alternative Medicine

We have posted on Cancer Quackery before. Dr Crippen points me to this sad sad story.

The Darzi Report

Dr Rant reports on the generally muted response to Darzi's "Next Stage Review" but points me to this excellent post "I don't want any more 'patient choice'" with which I wholeheartedly agree.

Jaime's School Report

From an email from my brother:

"Jaime's school report is very good. He is a well behaved and hard working, valued member of the school community, as they say.

In terms of the "grades" most are in the "Developing Skills" or "Good" boxes. He does well at ICT! All the teachers praise him for being hard working, good with other pupils, always does his homework, listens well etc. His English, maths etc are either developing skills or good. Jaime has apparently enjoyed weekly percussion classes and they suggest he might like to learn a muscial instrument next year. He is good at games, dance and gymnastics. All in all it says that Jaime should be very proud of himself and thats not a paraphrase!

So an excellent report - I hope you tell him next time you speak to him."

Dr Crippen and Ben Bradshaw, GP Access and Polyclinics

Last week Under-Secretary-of-State for Health, Ben Bradshaw launched another attack on our General Practitioners (family doctors).

Dr Crippen responded. Dr Crippen admired that Ben was the first openly gay Member of Parliament (for Exeter - what it is with gay MPs in the south-west .... can you remember Jeremy Thorpe in North Devon?). Most of John's arguments were sound.

However, Dr Crippen claimed that I can turn up at any GP practice and register as a patient.

In June 2004 I turned up at my local GP clinic, on my brother's recommendation as that is where he, his partner and stepson are registered, to register myself, my wife and my daughter .... only to be told their list is "full".

We were told to try next door. Once one practice, the partners had fallen out and the building and the practice, were divided in two. Two GP practices in one building?.

Ridiculous!

So I went next door and we were registered.

Nanda, my wife, says she has 'flu. I say go and see our GP. She says Jaime (my stepson) has 'flu - "Go and see the GP" - but she doesn't speak much English. Say two words to reception "Language Line"" but I think she would rather walk into a Virgin Asda-based polyclinic.

Gay men can donate bone marrow

Adrian Sudbury reports that although gay men cannot donate blood, they can join the two UK bone marrow registries.

Ironically, as I have reported before, I cannot as I live in a malarial zone ...

"MALARIA

Generally Not Acceptable

No - especially if within the last 12 months

Exception - if you have taken a full course of anti-malarial tablets, the timespan was longer than 12 months ago, and no symptoms are being experienced" (source - Anthony Nolan Trust)

- although Kezia could receive a bone marrow transplant from a donor who lives in a malarial zone.

Who reads old blog posts?

When I come across a blog that interests me, I tend at first to read as far back as I can and then keep revisiting.

But I have some observations and caveats to that ... and I will use examples from my link list and some others to try and explain.

a) Some have been running for years and always interest me ... Drs Rant and Crippen and Tom Reynolds of the London Ambulance Service are visited daily and I am disappointed when I don't see a new post. Obviously, the UK National Health Service and its superb treatment of our daughter Kezia are prime interests and the depressing views of our medics are important to me. I think Dr Z., FtM Doctor, who I only found last week, will fall into this category.

b) Cancer patient and carer blogs - well, I've posted on this subject before. The best I have found will not fail to talk about things other than cancer - there is more to our lives than cancer. Christian/Potentilla at auspiciciousdragon.net is a great inspiration, and now she is dead I find it sad her partner, Colin no longer writes but just posts his rather wonderful photos. Cass of Cancergiggles was marvellous and I found it much too late. It is a shame his partner/family have not really kept it up. But grieving might explain both. Lucia is a great inspiration - for getting on with life but making her leukaemia positive (she has just become a rep. on the board of governors of the Central Manchester and Manchester Universities Childrens Hospitals Foundation Trust) as is the dying Adrian Sudbury. Rob and Lauren follow the same mold.

The Whites in NZ I find a bit heavy on the treatment and leukaemia experience - but they write well. The occasional insights into the NZ health system really need expanding.

A link to Sophie's Diary (a girl much of Kezia's age) I included - even though it's probaably written by proxy parents, it does draw aattention to the fact that small children are more interested in Mars Bars and Playstations than their own leukaemia.

MiltCentral I included in my links as he is just as interested in young adult things as Sophie is interested in young child things.

I can't say I've visited either of their blogs in months ...

I admire all these and would hope that, if I were back un the UK, I would be helping out on leukaemia and cancer issues a bit more than the little I can do via this blog. However, the slight emphasis on news about cancer in Africa is perhaps rare in the cancer blogosphere ... ,

c) Blogs that have disappeared ...

Soj was an American in Romania who would almost everyday review news events from around the world, as reported by local media - those stories of (mainly) tragedies that readers or viewers of the BBC, CNN etc never hear about. I haven't linked to as her entire blog diasppeared when she all-of-a-sudden returned to the USA.

The Head Heeb, seemingly a lawyer in the US was another internationaal current affairs commentator, who has stopped posing since his partner died site, I leave the link up as some of its archives may still be interesting.

Although The Grand Rounds go from strength to strength, the Paediatric Grand Rounds have unfortunately died a death (although the archives are still there ...).

d) Blogs I read (past tense) alot but now only occasionally visit ... Alex Harrowell and Kathyrn Cramer. We had common interests in the international arms dealer, Viktor Bout, some of whose planes were apparently registered here, who chartered planes and bought arms for both the Taleban and the US government and many other dubious outfits over the years ... Another common interest was internet censorship and the role of European/US companies in providing hard/software to repressive regimes to stop people reading our blogs. Kathryn is a big name in the US science-fiction community and is very much into her family. Alex works in the mobile telephone industry but blogs about international arms trading, IT security and the issues surrounding it, Rugby League and much more. (Viktor Bout is in a Thailandese prison (we think) from which the US claims they want to extradite him, though it rather seems they want him to languish there so he cannot reveal too much about US involvement in contracting him to provide air--cargo services into various places including Iraq).

e) Jon's Jail Journal and Cziskereda Musings.

Jon, real name Shawn Atwood, was a Brit high-flying stock trader in the US organising rave events (with their associated drugs) and got busted. He served time in one of the worst prisons in the US but eventually got parole and deportation back to the UK just before Christmas. He got on well with the the weird and wonderful prison community, the mass murderers, the gang members etc etc there and is still in touch with them ... his descriptions of their hardened personalties, their kindness to him, the protection they gave him, their friendliness and hospitality continues to be a story of our humanty. He has made some real friends.

Andy at Cziskereda Musings lives in Cziskereda, Romania and for a long time we followed a similar career path to the extent we worked at the same insitition in Portugal although two years apart. He ended up in Cziskereda where he met his spouse, already with a daughter, and a year or so ago they had a daughter together. He writes mostly about Romania, his family, and the places his work takes him.

f) Boing Boing: I love it - just too much to read.

And strangely most of the visits I receive have nothing to do with leukaemia, the NHS etc ... but my posts on using the BBC iPlayer overseas.

All links on the right.

A Message to Lucia

Now you have become a member of the Central Manchester and Manchester Children's University Trust board of governors (a foundation trust), you really must read Lord Darzi's report, urge all members to read it and also all the documents on the proposed "NHS Constitution". I know this is onerous (the first 18 pages were ...) - but hey, you've got the post-exam holidays in front of you. Read them. Don't let the "adult" reps. browbeat you just 'cos they haven't read them and they are going to patronise you as a cocky youngster. If they are going to take a role on the committee, then they must take the responsibility of reading them.

Make your own opinions and conclusions and express them - hopefully, you'll see my own here.

(Maybe you should take a degree in Health Policy?)

High Quality Care for All - NHS Next Stage Review Final Report

Lord Darzi's opus magnum ("Document type: Command paper") was issued yesterday. I was only able to download all 84 pages of it today. I've read Prime Minister Gordon Brown and Secretary of State for Health Alan Johnson's salutory one page letters congratulating Lord Darzi on such a superb and visionary effort. I am now moving on to Lord Darzi's "Summary letter" of introduction. I am already reaching for my (ex-) teacher's red pen ...

Tom Reynolds has already made an initial comment as has Dr Crippen. I am awaiting Dr Rant. But it will probably take me from now until the end of the weekend (and thank your deity I have a public holiday on Friday) to read and digest it all.

And at the same time the Department of Health wants me to look at a whole bunch of "consultation" documents issued at the same time on a proposed NHS Constitution!

When do our elected representatives, our doctors and nurses, our paramedics and ambulance crews, Jane and Joe Public have time to read all this bullshit documentation? No wonder they have to bribe people to turn up to consultation exercises.

And now Lord Darzi has completed his report, can the government let him get back to his real job of laparoscopy (keyhole surgery)?