Medical Update

Kezia's counts today are low and her daily mercapturine and weekly oral methotrexate have been suspended. Let's hope they recover for next week as, if satisfactory, John has promised they can skip a consultation when they go on holiday to the seaside the following week. So today was just the vincristine injection and over the next five the dreaded dexamethasone.

She also has a back tooth coming through which is hurting.

Jaime celebrated his birthday yesterday - 8 years old and a Transformer Cake.

Research

I promised to discuss the new research project for which Nanda had to sign a consent form and hand in yesterday.

First of all, it does not involve new or extra bone marrow or blood samples. It just involves existing bone marrow samples taken during her first four weeks of treatment.

I haven´t seen the whole consent letter but my brother summarised for me “the scientific part”. To quote:

“The aim of the study is to measure the levels of angiogenesis, MDR-1, MRP and indicators of hypoxia in the bone marrow samples taken routinely at diagnosis. These measures would then be related to the speed and extent (the level if any of minimal residual disease) of your child's response to the first four weeks of treatment. This is to help further understanding of the variations in the speed and extent to which the leukemia cells disappear from the bone marrow during the first four weeks of treatment. In many adult cancers the numbers of new blood cells (angiogenesis) and a low level of oxygen within the cancer (hypoxia) are recognised as making the tumours less responsive to treatment. It is not yet known whether the numbers of new blood vessels or low oxygen levels are important for making the treatment of childhood ALL more difficult. Also some cancers contain resistance proteins (MDR-1 and MRP) that may reduce the effectiveness of drugs such as vincristine.”

As I haven´t seen the whole consent document, I am not sure of the rest of its contents.

I am sure this consent letter has not been translated into the principal minority languages of England – Urdu, Punjabi etc – the principle ethnic minority languages of he hospital´s catchment area - let alone Nanda´s native language, an official language of the European Union. I am afraid that ethnic minorities, or many others with little literacy (whether UK or non-UK readers, writers, listeners or speakers of English) and those who don´t have a first idea about the science, are left in the dark.

Aphorisms III

Our new header aphorism is from Querelle of Brest by Jean Genet (of whom more below). Previous header aphorisms:

“Man cannot purge his body of its theme
As can the silkworm on a running thread
Spin a shroud to reconsider in.”

Rite of Spring: Djuna Barnes

“An opinion is a limit to understanding”.

Natalie Barnie

“I reserve the right to go off topic and talk about anything I damn well like”

Andy at Ciskzereda Musings

Jean Genet - Querelle of Brest

Jean Genet´s “Querelle of Brest” became famous in the gay world when the German director, Rainer Werner Fassbinder, made a film of the novel in the 1980s. The novel was first published in its original French in 1953, and in English in 1966. After seeing the film, I sought out the novel – I cannot say I understood it. It is a difficult novel that I am now rereading – even now I can only read two or three pages at a time.

But the following passage, in English translation, struck me as particularly poignant, although I cannot say I understand it all … just it is making me think …

“There exists, somewhere deep within us, a secret room with an armor-plated door. It contains, along with several poor caged dogs, other monsters of which the most alarming is the one that is to be found in the very middle of the room. This is the living reproach at the centre of our innermost being. Enclosed within a huge glass case, corresponding almost exactly to the shape of its body, this creature is mauve in colour and soft, almost gelatinous in substance. It would resemble a great fish, were it not for the very human sadness of its head. The keeper who watches over these monsters harbours the greatest contempt for this one, which, we know well, would find a degree of peace and comfort in the embrace of another of its own kind. But it has no like. The other monsters differ from it in a few minor details. It is lonely, unique, and yet it loves us. In hopeless, doggy devotion, it waits for a friendly look from us, one we shall never accord it.”

The creature in the middle of the room is murder. But why mauve, why a soft, gelatinous fish with a human head, why a glass case?

And has this anything to do with our leukaemia?

It is a beautiful piece of prose even in translation ...

GPs vindicated?

The Department of Health has just published the results two surveys into patient views of General Practitioners (GP, or family doctor to our non-U.K. readers) in England.

There has been much political diatribe over the last few months that, since the government gave the GPs a new contract and, (supposedly I will say, as I have not seen statistics on this), they are earning more money, working less irregular hours and the government actually wants them to work more hours and more irregular hours (early mornings, evenings and weekends).

But as the GPs are meeting the targets of their new contracts (set by the government), they don´t see why they should. It seems to me the government did not set its targets effectively.

Anyway, the patients´ surveys (commissioned by our last Health Secretary, Ms Hewitt) are generally favourable to the GPs.

84% of patients are content with their GPs opening hours. That leaves 16% who are not – perhaps that 16% needs to be analysed as to occupation, working hours etc. If, for example, they were found to be more mobile (transportation etc), they could be offered an alternative GP practice with more flexible working hours (generally larger) but presumably at the cost of transportation.

In some areas some patients were dissatisfied with access times – small rural practices, with a widely-spread geographical base, understandably do have more difficulty in this.

Making an advance (48 hours or more) booking, more important, the further away you are from your GP, was considered a problem.

Rural GPs also had more difficulty in discussing choices of secondary referrals for treatment at hospitals. This is, I feel, mostly a problem of information infrastructure in the NHS whereby small isolated GPs are not provided with adequate information about choices, or do not have the time to process this information and, of course, patient transportation problems.

“Deprived” areas suffer similar problems.

Ethnic minorities are less satisfied than the white indigenous British population. I am not surprised – I think you would find this throughout the NHS from hospitals to doctors to nurses to porters to cleaners to patients. We have posted on NHS, hospital and GP access to interpreting and translation services here and here.

Cultural services for the patients in the NHS are not sensitive (and I am not saying they should or should not be) – on our ward, for the first four weeks that we lived there, we had an “orthodox” Jew (skull-cap and tresses), next to a “fundamental” Pakistani-origin Muslim (salwar kameez and hijab), next to a Pakistani (salwar kameez only) Roman Catholic Christian, next to a white British National Party (i.e. fascist/racist) voter … next to Nanda, black African, nominally Roman Catholic Christian. The prayer room at the hospital does not discriminate.

But the NHS must provide the linguistic services … according to the BBC report our new Health Secretary, Alan Johnson, highlighted ethnic discrepancies as something which needed investigating.

Is this a small change from Ms Kelly´s opinion that all NHS patients, who are not in A&E, should speak English?

Floods

The U.K. is being inundated with rain. Floods in many areas and, if you’re not flooded, then torrential rains at the least.

Before continuing, let me reassure our regular readers that Nanda, Kezia and Jaime are ok – we live on the tops of a deep river valley. They are most pissed-off that the bad weather prevents them from going out, and prevents Jaime and Kezia from even playing in the garden.

In the U.K. there is lots of news coverage. Cities, towns and villages without water, without electricity, without road access. In the U.K. there are few deaths. Yes, some but in the –teens. Most people have house insurance. The town of Gloucester is without water and electricity

And the emergency services will get to you. I hope the medical services are coping – the ambulance services must be having a bad time and staff trying to get to work, for anyone, must be rough.

This year has already seen floods in Pakistan, India, China, Japan, Sudan etc. Hundreds of thousand effected. Struggling emergency services, struggling hospitals and health posts, struggling water supply systems (where they exist), no house insurance …

Our new Prime Minister is now warning us to get used to it … climate change is here to stay.

When will the President of the U.S.A admit it?

Linux

Given up on DeLiLinux (url). Liked it but not enough built-in printer support. I am now trying Damn Small Linux (DSL) () – the GUI is very nice. A larger support community than DeLiLinux

It supports HPLIS (a shell script for printer installation) but I am currently trying to get HPLIP (an X HP printer driver installer supporting far more HP printers) working, which apparently is possible, Needs Python – which doesn´t come with DSL – so currently on Python installation.

And yesterday trying to install Python it wants one of three C compilers, none of which come with come with DSL. The compiler that comes with DSL is apparently tcc Tiny C Compiler. There appear to be two possible ways around this – one to edit the installation script to look for tcc rather than the other three, the other to use the Debian command apt). So today will try again.

I am no way an expert in Linux so if any of our readers are, please feel free to add a comment with some advice.

Such problems are both an advantage and a disadvantage with Linux.

On the one hand such problems force me to look for solutions and learn. On the other, they are a pain in the neck and do demand a fairly sophisticated degree of computer literacy – your average user will certainly not have it.

The well-known large flavours of Linux, such as RedHat, SuSe, Ubuntu, do provide purchased commercial support and have large free online support communities. But small distros such as DSL and DeLiLinux have very small user bases – they are designed to be small, to run on old computers with small hard disks and little RAM.

Hands up all those still with a computer with an 801486 processor and 32 Mb of RAM?

Geeks do and we do (hey, we still have a Wang 386 running MS-DOS from 1992!).

So if we’re going to give away some Pentium machines (‘cos I’m not giving away that Wang!) with a 2 Gb hard disk and 128 Mb RAM, I need a small Linux …

Update: Python doesn’t like tcc … AAAARRGH!

Doctor Evil

At the time of the bombings earlier this month we were afraid of a possible backlash against the many overseas doctors employed in the National Health Service.

This week's editorial in the Lancet discusses this issue (free registration required).

Kezia thinks ...

… she is the product of a virgin birth.

Nanda is her mother and Angus is Jaime´s mother … not a father in it. Apparently, Kezia is upsetting Jaime so I have to explain, over the phone, to Kezia. !!!

An absent father.

Waiting for the Other Shoe to Drop

Lucia is coming to the end of her treatment for T-cell Acute Lymphoblastic Leukaemia. She has just had her end-of-treatment briefing from our consultant John. I will quote her …

• I'll have follow up clinic every 6 weeks for the first 18 months.
• The first 18 months are the most critical for relapse.
• I may need blood transfusions for up to 6 months after finishing.
• My bone marrow will take up to 6 months to recover.
• So will my energy.
• My immune system will be at 90% after 3-6 months and 100% after 12 months.
• If I relapse I will go over to the christie, get a new consulant and will have to have a BMT. (Bone marrow transplant).
• The further out I relapse the better. (The first 6 months have the bleakest outlook).
• T-cell ALL can be v. agressive when it relapses and the relapse protocol would be a whole different ball game.
• BUT, I have a 75% (probably higher) chance of being cured this time around.
• Follow up will be at RMCH.
• I have a higher risk of heart disease, skin and lung cancer than most but keeping out of the sun (which I do) not smoking (duh) and keeping healthy brings my risks down to a normal level.
• When I'm pregnant I will have to have my heart checked and be followed more closely to make sure there's no strain on it. Thanks to the doxorubicin chemo I had.

Depressing. Another 2 ½ years at least … how can I tell Nanda this?

I hate this 75-80% - it means one in four or five will relapse. So the medics are trying to keep our morale up but the odds are not particularly good. Relapse – another two, three, four years … the search for a donor who may well, in our case, have to be black and of which there are not many (please visit and support the African Caribbean Leukaemia Trust), and therefore a much lower chance of survival.

How can I tell Nanda this?

P.S. Lucia has just posted several updates so visit.

P.P.S. I´ve stolen the title to this post from Rob and Lauren whose son Fergus has just come off treatment. In a previous post I mistakenly thought Lucia had come off treatment but it is imminent – her recent experiences show us we cannot rest on our laurels during the second year of treatment.

A Miscellany of News

Our local general hospital is, quite obviously, not thr only one in the country under the threat of a reduction in services and beds. Yesterday the BBC reported that Scottish Health Secretary Nicola Sturgeon visited the Vale of Leven Hospital at Alexandria, West Dunbartonshire where extensive cuts are proposed.

So I visited the website of the Greater Glasgow and Clyde Trust and found a list of service reduction at the Vale of Leven Hospital.

Basically, they cannot afford to pay for locums."Continuing to provide services with locum staff is not acceptable..."

She is quoted as saying "Whatever happens will be subject to independent scrutiny and will go out to public consultation."

Back to my role as transport analyst ... it is a 45 minute bus journey between the Vale of Leven Hospital and the Royal Alexandra Hospital in Paisley where many of the services would be transferred to with buses running every two hours.

Coming south the Scarborough and North East Yorkshire Trust announced on Wednesday 600 job cuts! To make up their deficits … the trade union UNISON is not happy.

I expect (or let us say, hope that, some of) their jobs will be taken up by private companies. But, obviously with loss of salary, pensions, rights etc.

A Miss Otley has sued the Barking and Dagenham PCT in the High Court for not providing Avastin to treat her bowel cancer. After they refused to treat her with Avastin, she used 15,000 pounds of her own money and then when her own money ran out and after much improvement, the PCT refused to continue the treatment. The judge has ruled against the trust. Good news indeed.

Much closer to home … Kezia

Yesterday, a regular visit to the hospital, a blood test and picking up prescriptions. The weekly visits to the hospital seem to be based on her daily 6-mercapturine and weekly oral methotrexate treatment – according to the UKALL 2003 protocol, if her neutophil count is low, then she comes off the mercapturine and methotrexate until the neutrophil count has recovered.Yesterday everything fine.

I was hoping that hospital visits would be less frequent than weekly in this second year – but seemingly not. I will ask our consultant.

Nanda received a consent letter to sign at the hospital yesterday to authorise the use of existing bone marrow samples from Kezia for research into cancer resistance to vincristine. More details to follow.

Cooperation and Aid

In the “developed” world it is called “Aid”, in the “developing world” it is called “Cooperation”.

My employer has a load of computers to dispose of and is proposing to “donate”, or “offload” them to the local or rather national (in such a small country, it is the same thing) radio, TV and press agency. My colleague, friend and family, M. is pissed off the government of a developed country is offloading machines with 2 or 4 Gigabyte hard disks, 128 or 256 Mb RAM machines to his developing country.

I agree.

I worked as a VSO volunteer or cooperant (depending on whose view you took) in the Ministry of Education for my first three years here. We managed to get donations of capital items – a photocopier or a Gestetner machine, for example – but the consumables - paper, or toner or ink - no way! The consumables are invisible.

I don´t see why they should be. “We supported end-of-year exams for the entire education system this year with the donation of x reams of paper”.

Today my boss, the second-in-command, our technical chief and myself visited the radio, TV and press agency. Just at the radio, 20 journalists, the administrative department, the technical department with 12 equivalent computers between them and even less printers. And most of them not networked. And the aid agencies will not provide supplies – toner for printers, new power supplies … paper! Thirty-two LAN connections around the building and 12 computers.

We are not an aid agency …

We are not allowed (by our law) to give away computers that have not been totally wiped clean. We are not allowed to give away unlicensed software - Microsoft Windows (any version). Unsupported software (in this case Windows NT 4.0 for which we have the licenses!) and making the local media vulnerable to viruses would be idiocy (we´re not going to buy them annual anti-virus software licenses - consumables). So …

Linux! Hurrah!

Given the capacity of the computers a heavy Linux OS, such as RedHat 8.0 or SuSe 10.2 will not work … so we are experimenting DeLiOs that needs 32 Mb of RAM and has an office suite that can do MS Word-compatible rtf format … I´ll let you know.

Given the limited capacities of these computers, given the country´s lack-of-awareness of open-source operating systems and software, given the lack of capacity in the media, I think we could be doing them a favour.

And maybe we can turn the country onto open-source software, stop any piracy (not that MS, MPAA etc are likely to come here), protect them from viruses etc etc.Getting them on-board the One Laptop per Child Project would be an achievement indeed!

Piano Duets

I have just watched some TV coverage of a cultural festival in Mozambique. A marimba-type instrument, that looked like a small canoe. Three guys playing it at the same time – so I measured my arm span, fingertip to fingertip, about 6.5 feet which makes the “marimba” about 20 feet or 3 metres long.

And their musical coordination ... amazing!

The United States of Africa

Sunday morning and there is a typical Sunday morning talk show on the radio. The journalists, who have nothing else to do on a Sunday, get paid well for appearing on a Sunday morning. The BBC has one as well.

One of the subjects today is the recent discussion at the African Union summit of President Gaddafi´s proposal to make “a United States of Africa”. USA … hmm …

Let me start by being rational …

It has taken Europe to arrive at the current European Union (area 4 million square km and 27 countries, population 500 million) 50 years to arrive, since its start as the EEC, at its present state. We still don´t agree with each other.

Africa has an area of a 30 million square km and 53 countries, a population of 900 million. They were colonised by eight countries. The first one to be “decolonised” was in 1956, and the last in 1980.

Last week we celebrated our Independence Day. The United States of America has one so why the fuck shouldn´t we? Along with every other country in the decolonised world.

We are one of the few countries in decolonised Africa to be considered a “model” democracy. So who did we invite to celebrate our independence? Presidents of three of our neighbouring tinpot dictatorships, one of which is considered possibly the worst in Africa.

Let us consider another USA – the United States of Asia. - I´ll leap some countries along the way …

Azerbaijan … Iran … Afghanistan … Pakistan … India … Myanmar …Vietnam … China … Japan.

Let us consider another USA – whoops, a name change, USSA – the United States of South America.

Mexico … Guatamala … Honduras … Bolivia … Venezuela … Brazil … Uruguay … Paraguay … Argentina …Chile …

Have either of these continents even considered some kind of common economic community, let alone a mega-country?

No.

Sure, there are customs and tariff agreements – MERCOSUR amongst the South Americans. Sure, they have regional summits, ASEAN, for some of the Asian countries. Have any of their leaders proposed a USA?

And I haven´t even got to the Middle-East (deity forbid) or the Pacific …

So let me start being irrational and I´ll leap some countries along the way

Egypt … Libya … Algeria … Chad … Sudan … Nigeria … the rest of west Africa … Somalia … Uganda and Kenya … Congo (both) … Zambia … Namibia … Angola … Zimbabwe, and South Africa (zig-zagging across a continent).

The African countries cannot organise the Economic Community of East African States, SADC etc

So at the African Union summit you waste time talking about President Gaddafi´s idea rather than discussing Darfur, Somalia, Eritrea vs Ethiopia, Zimbabwe or even an AU peace-keeping force?

I think President Gaddafi is mad! I think some of you are of the same opinion.

So why the fuck did you let it get on the agenda?

But hey let us have a continent wide election for a continental leader. I will vote for President Gaddafi. Will you?

Long term side-effects - Sicko

Rob posted here about his, and his spouse Lauren´s fears, about the possibility of a relapse of their son´s leukaemia. They/Fergus have just finished three years of chemotherapy.

As Rob eloquently expressed, we wait to see if “the other shoe drops”. The medical authorities say wait for five year “Event Free Survival”.

I have previously posted here.

An anxious five years methinks – no active treatment. A monthly blood test to check counts are ok. And every “normal” childhood infection will send us into panic mode. A five years that will perhaps be worse than the first two/three years when at least we could see active administration of treatment. Five years of watch and wait …

Our consultant, John, has intimated that, if all goes well, Kezia should, at the very least, go back for testing every year until she reaches puberty.

Today I come across a review of an article by staff at the St Jude Children’s Research Center, one of the foremost paediatric cancer research institutions in the world. “The cumulative incidence of secondary malignancy was … 10.85% at 30 years”. Shit.

But that is a study of ALL patients from 1962 to 1998. That is a study when radiotherapy was a normal prophylactic treatment …

“Because the current treatment protocol for ALL … no longer calls for prophylactic crania or craniospinal irradiation, the long-term risk of secondary neoplasms is expected to decrease”.

Good. But …

“These results suggest that lifelong follow-up of acute lymphoblastic leukaemia survivors is needed to ascertain the full impact of treatment and other leuakaemia-related factors on secondary neoplasm development”.

Fine.

Who is going to pay?

I had a conversation with an American about medical insurance last week. He´s fine. His family is fine. He even had colon cancer and needed surgery … and the insurance company paid. But he had been in the military and now works for the Federal Government … his ex- and present employer pay his and his family´s medical insurance.

And he is grateful - as he said, if you're self-employed, once cancer has been diagnosed, you´ve a fat chance of getting insurance.

Kezia, Africa, risk rate increased cos she´s African ...

Mixed race children

Emily at Doing It All Again reviews a Guardian article by Lowri Turner about her mixed race daughter. She (Lowri that is) sounds almost ashamed.

Our own daughter has a white father and a black African mother. I guess you could describe her as half-black or half-white. It’s really not important. Yes, I know that to some people she will just be considered black.

But to us she is just beautiful. And yes she shares features of us both. Her hair is (or was until it fell out) a crazy wild uncontrollable and beautiful mix of my own straight and her mother’s Afro hair. We wouldn't have her any other way (apart from taking away the leukaemia).

I really don' t know Lowrie is so hung up about this. Poor child.

I'm a smoker

John at NHS Blog Doctor has posted many times about the stupidity of smoking and the paucity of treatment for the often resulting lung cancer on the NHS. And obviously all the other health problems it can cause or exacerbate. I do not disagree with him one iota …

… but I am a smoker.

A pack a day.

My father died of a heart attack at 67 years old, he´d smoked a pipe on and off during his life and then gave it up at about age 50 – he died more of the withdrawal symptoms of workaholism when he was forced to retire from a job that was his life (yeah, ok the death certificate said something medical). Next to go was my grandmother, at the age of 98 – she smoked, heavily, until she was 70 plus. Every time she got something nasty, she would just stop seemingly with no withdrawal symptoms. She got bronchitis and our GP said “Stop”, she did and she lived another 20 years.

My mum died full of life aged 70 years from a stroke. Got up one morning, got washed, brushed her teeth, dressed and collapsed on the landing. Discovered by a friend with whom she was going for a pub lunch She was overweight, smoked some, drank some and was on the verge of completing her Ph.D. She tried stopping smoking again and again. At least she didn´t suffer. Just dropped.

Shame she didn´t see or even know of her grand-daughter. Shame her Ph.D. thesis almost completed, was never submitted. (On sex education, or lack of, provision in primary and secondary schools in the local education authority - if anyone is interested, I think I can rustle up a copy).

I started smoking at, oh, age 10. Mum would very occasionally send me and me bro´ to the local newsagents to pick up a pack of 10. So off we went … but this time they weren´t for her. A newsagents selling a 10 year old “for Mum” certainly wouldn´t happen now!

But we didn´t really start smoking until we were well into our teens. Old Holborn roll-ups.

I´ve tried giving up. As I said, my Grandma seemed to suffer no Cold Turkey when she stopped. But I know my Mum did – she would stop, start, stop, start, stop, start … never made it. I´ve tried a few times … the cold turkey is real bad, I can´t go through with it. Mum got addicted to the masochism of giving up – she tried acupuncture, hypnotism, Allen Carr etc etc. I´ve given up on “giving-up”. I can´t go through that. Maybe now, in the U.K. with nicotine patches, counsellors etc it would be possible.

When Kezia was admitted with leukaemia, the hospital asked if anyone smoked in the house. I don´t really know why – some kind of epidemiological survey? They are, after all, still looking for the causes of leukaemia

Fortunately, though, we live mostly outside here. I smoke outside. The ceiling in our house here, almost six metres high with no ceilings dividing upstairs from downstairs, and no glass-enclosed windows, is the height of our rented two storey ceilinged and windowed terrace in the U.K. But when I visit them in the U.K., I go outside and freeze my bollocks off.

So I hope Jaime, Kezia and Nanda have not suffered too much from passive smoking.

At Rochdale Infirmary and the Royal Manchester Children´s Hospital, the PCTs had both officially banned smoking even outside on the grounds. At the former, the entrance to A&E was disgusting with butts all over the ground, the one rubbish bin overflowing – ok it was a Sunday and maybe there had been no-one to clean up over the weekend. At RMCH, a slightly more constructive approach - perhaps a recognition that us smoker parents were stressed out enough without the need to stress us further about smoking – the hospital has a dedicated smoking room, albeit pretty discouraging (let us wallow in our own dirt, smoke, ash and threadbare carpet – I have no problem), but their attitude was that this was better than a miscreant sneaking off to the toilets, lighting up and setting off the fire alarms. Does the RMCH smoking room still exist since 1 July?

I´ll be interested to see how our local pub in the U.K., where most of the customers seem be smokers, is coping with the July 1 ban.

The approach taken in South Africa when we visited in 2001 seemed more constructive and needs much less state “policing” (and thus expense?). Bars and restaurants were given a choice of an outright ban or creating a segragated space for smokers. Many chose to create an, albeit smaller and perhaps a little less salubrious, but nevertheless not a fleapit, space for smokers. But then South Africa introduced a ban on free plastic bags in supermarkets and shops years ago … they have all gone over to free reuseable rigid paper bags. Ok, so smokers there don´t feel as ostracised as in the U.K. … but is ostracisation a motivation?

And I do like doctors who smoke. S/he can tell me to stop … there´s more empathy with the patient - I know s/he knows what we´re experiencing. A holier than thou doctor´s attitude about smoking just makes you feel guilty …

And let´s hope I have my grandmother´s genes …

P.S. Kezia seemed alot chirpier yesterday - must be coming down from the Dexamethasone.

Small Steps

Yesterday the Macmillan nurse visited Kezia´s school (from September) to discuss her special needs with her future teacher (who just happens to be Jaime´s teacher this year – quite happy with this continuity – Gill already knows us, has met Kezia and knows of our situation). We are happy her Hickman Line is out, one less worry at school for both ourselves and Gill.

I do wonder though how Gill is meant to distinguish between and/or react to drug-induced bad moods or misbehaviour versus general childhood petulance. Kezia hits the kid next to her, steals his/her snack or goes into a corner and won´t talk and/or cries. I am sure Gill will be amazing as she deals with kids every day … but absent dad could do with some reassurance please!

On Thursday there is an “open day”, or rather hour, for September´s intake – a kind of familiarisation exercise, I guess, to help avoid tearful scenes on the first day of school. I don´t think this will be a problem with Kezia – at the moment she is impatient to start - “if Jaime can go to school, why can´t I?”. And I know Nanda is talking it up …

Kezia didn´t want to speak to me yesterday – she finished five days of Dexamethasone on Sunday and is moody. Lucia has often related how dreadful this drug is, has had to go on morphine due to the pain it caused so I can only wonder what Kezia feels especially with no means of verbalising it.

Last week´s medical blogosphere “event” seems to have been the bombing attempts in the U.K. by, at least, two NHS doctors (the other suspects, I should stress, innocent until proven guilty). NHS Blog Doctor´s very sensible post on the subject whipped up 97 comments – with particularly bigoted comments from someone called “american md”, I posted two or three of my own in reaction and whipped up Lucia´s support – the dedicated staff (Muslim or otherwise) of the Royal Manchester Children´s Hospital and the NHS must not be subjected to such abuse. I am happy to see that Dr. Crippen posted her comment in his weekly BritMeds.

However, judging by the BBC´s website (ok, it is not necessarily representative ..,), the issue seems to have dropped off the map. There was one headline (non-) piece in the Asia/Pacific section Monday about ongoing investigations in Australia, there was nothing in the U.K. section. Are the government and police not giving press statements and keeping mum or are we so used to terrorist attacks in the UK (international readers, remember what we went through with the Northern Ireland troubles) that non-successful attempts are no longer news?

And, blimey, no-one commented on my own post on the subject – the price of non-fame?

Penultimately, I will point you to two posts by bush doctor in the city about a kid in the Delta region of Nigeria with Burkitt's Lymphoma (here and here). This is what the AfrOx Project is about – don´t just throw emergency aid at healthcare in Africa or Asia but help us develop healthcare systems. Given the state of the NHS and US healthcare, perhaps you´re not so good at that …

Finally, congratulations are due to both Lucia and Fergus (Lauren and Rob´s son) for finishing chemotherapy. I don´t have a deity but will pray the other shoe doesn´t drop. In many ways this could be the most difficult stage – watching, waiting, lingering.

Please don't stop blogging - you are messages of hope for those of us behind you. Lauren and Rob - the photos of Fergus' last chemo and lumber puncture are both inspirational and useful (... and why didn't any of us think about this before?!). Thank you for sharing them.

bush doctor in the city

Found this blog via NHS Blog Doctor. A Nigerian doctor relates working in the Delta region, the daily rounds and dealing with the local Witch Doctor and militia, and contrasts it to work in a British city. Very funny and very poignant.

1997-2007

Or maybe I should address this post “hello I´m a patient … I don´t know what´s going on …”.

There is a certain amount of commentary at the moment in the U.S. medical (and other) blogosphere about Michael Meacher`s latest film Sicko which examines the U.S. healthcare system compared with “socialised” systems in Canada and Europe.

The general opinion is that the film is strong on its criticism of the U.S. medical system but weak on its arguments in favour of “socialised” systems. I haven`t seen the film.

My U.S. friend and colleague Myron has related to me fights with insurance companies to get payments for his (now deceased) wife`s cancer treatment. With the stress of the cancer, I would not want to be dealing with financial issues with insurance companies as well. It is enough to keep the bread and butter on the table …

Another issue raised by a commentator is that although emergency treatment is guaranteed under the U.S. system, how much emergency treatment could be avoided by cheaper preventative treatment only available in the U.S. through private insurance?

However, this post is not about comparing U.K. “socialised” healthcare with U.S. healthcare …

U.S. Sandy at Junkfood Science provides a useful round-up of recent U.K. news reports, of which some are issues we have discussed here.

She points me to a 1997 article in the Indian Journal of Medical Ethics by an Indian doctor, Satyajit Bhattacharya, working in the U.K., relating the “reforms” instituted by Margaret Thatcher`s government in the 1990s. It is well worth reading, I would like to copy the entire paper but will restrict myself to, albeit extensive, quotes. Bolded text is from the original but highlighted by myself.

“… by 1987 the perception between NHS cash supply and demand had reached crisis proportions (annual government expenditure for 1987-88 was 20 billion pounds) … At the time the management structuture of the NHS .. consisted of the Department of Health (i.e. the central ministry or DOH) at the apex and District Healhth Authorities (DHAs) and Family Health Service Authorities (FHSAs) at the ground level. The DHAs and FHSAs) were responsible for the provision of hospital-based care and primary health care for the residents of that district. To this end, they received an annual sum from the DOH … which was then disbursed among the hospitals, general practitioners (GPs) and other medical care in that district. Salaries of hospital staff (doctors, nurses, paramedics) and GPs were paid by the DHAs from these funds, according to uniform pay scales that applied nation-wide, and to all specialities.”

The changes brought in by Thatcher were as follows:

Regional Health Authorities (RHAs) were created by combining the DHAs and FHSAs.

The RHAs would “purchase” healthcare for the population from the “providers” i.e. the hospitals and GPs.

But there was another twist – those GP practices that were sufficiently large could receive money directly from the DOH direct and “purchase” services from the “providers”.

“They would, in other words, fulfil dual roles as purchasers and providers, and Hospital Trusts would have to enter into contracts not only with the RHAs but also with individual fund-holder GPs …”

The effects:

“The effects of the reforms have been too far-reaching to be grasped in their entirety yet, but certain effects are quite apparent from the viewpoint of a hospital doctor”.

Medical infrastructure: “Closure of wards and in some instances casualty departments has led to increasing demands on the existing beds and facilities, with longer waiting times for patients. Recent newspaper reports state that over the past 3 years, 28 out of 60 casualty units in London have been closed down …”

Human-power and morale: “Hospitals have also sought to downsize their workforce as a means of economising. This has led to job losses, and those who have retained their jobs are left with increasing workloads, a severe crisis in morale and a growing sense of insecurity … The possibility of pay scales being set locally …(as pposed to national pay scales) has generated fears that already low salaries may be slashed even further. One of the assets of the old NHS was a committed workforce that was willing to accept modest salaries and poor working conditions because of the satisfaction they derived from their jobs. The Trusts have also been recruitingng more managers at the same time that they have been shedding medical and nursing staff …”

Medical Practice: oh fuck, read the article for yourself!

Patients` expectations: “… the Government has also attempted to raise the patients´ awareness of their rights, by ublishing a Patients` Charter … In fact, one of the deplorable consequences (I think) of the prevailing managerial ethos in hospitals has been the tendency to perceive patients as customers and refer to them as such."

Research: “Usually, research funding is one of the first casualties of healthcare penny-pinching. This was predicted, and has already begun to happen …”

Fears of privatisation: “… The Government of course denies these accusations of backdoor privatisation vociferously,and as evidence of its commitment to the health sector points to the fact by 1994-95 its annual spending on the NHS has increased to 39 billion pounds. … However, even the Labour Party, which vehemently opposed the reforms when they were introduced, now acknowledges that the changes have been far to extensive for them to consider a total reversal if they come to power.”

The role of the doctors

“… the BMA [British Medical Association] has a poor record when it comes to standing up to a determined Government …when Mrs Thatcher´s ministers opted to bring in such wide-ranging reforms with little prior consultation with the BMA, and with total disregard for pleas that the reforms be initially tested in a pilot area or in pilot institutions, the BMA was unable to defend its position strongly enough or mobilise public opinion effectively in its support … As one who grew up in the strident militancy of junior-doctor politics in India, I have in turn been impressed by how civilised their forms of protest are, and been stunned by how ineffective they were in the long run”.

Roll on the clock to … 2007

Many of our medical staff continue to criticise the reforms initiated under Thatcher and, seemingly, continued under Blair`s Labour government. I will not repeat these criticisms here – go see the blogs of others (NHS Blog Doctor will take you there).

Sandy points me to a BBC graph showing employment rates and categories in the NHS from 1992-2004. Not a surprise with all these contracts to be administrated!

I will summarise a survey, commissioned by the aforementioned British Medical Association before its annual conference last month, of what our Great British Public thinks of NHS reforms.

1. Should the NHS continue to be funded from taxes and be free at the point of use? 93% yes

2. If resources are limited, can a small charge be made for some services? 53% yes.

3. Should the NHS be managed by an independent board of governers answerable to Parliament (rather than to the government)? 60% yes

4. Should decisions about local health services be made by bodies elected by local populations? 69% yes.

5. Should doctors have a major input on how money is spent locally? 82% yes.

6. Should the NHS provide the same set of baseline services throughout the country? 75% yes.

7. Can additional services be provided on a regional basis if funding permits? 79% yes.

8. Is there too much involvement of private organisations in NHS provision? 44% yes (35% don`t know, 21% disagree)

9. Should private organisations be allowed to provide NHS care where there is an identified gap? 66% yes

10. Should private organisations be allowed to provide unlimited NHS care? 34% yes, 48% no.

11. Does the purchaser/provider system improve the quality of healthcare for patients? 40% no, 34% yes.

12. Would hospitals funded and run by the same organisation lead to better collaboration and local health services? 73% yes.

Need I go on …

Is the current NHS “socialised”? Seems to me, it´s a mixed-up sorry bastard. Really Michael Moore you should not have used it as an example.

The Department of Health says the BMA´s survey is a load of hogwash … but the local community of Rochdale would fail to agree.

Cancer Quackery revisited

We posted back in May about Complementary and Alternative approaches to cancer and leukaemia treatment and linked to Respectful Insolence's post Magical Thinking versus Lymphoma about parents opting out of chemotherapy and therefore sentencing their children to certain death.

He now reports another case in which the child died when his parents took him off chemotherapy after just three months!

Again I will urge parents who foolishly consider this to read Commonweal's guide to complementary and alternative medicine.

The NHS Bombings

I was not going to post on this, at least not yet ... but the backlash has begun. I am appalled. Front Point Systems Limited in this post links to a Daily Mail piece commenting on the 6000 "Arab" doctors working for the NHS.

Even the BBC seems somewhat gleeful. But just as doctors are not in the job of checking their patients immigration status, it is not the job of the General Medical Council to check the political affiliations of doctors if these are not effecting their work. That is the job of the Home Office, Immigration and Nationality Directorate and the security services.

At least the Beeb reported "NHS trusts are also required to carry out checks on doctors they employ. These include checking for GMC registration, identification, passport credentials and criminal records.

Sian Thomas, deputy director of NHS Employers, which represents health trusts, said she wanted to reassure the public there were "thorough and robust checks" in place.

But these tested "their merits to do the job they do", rather than for political or extremist affiliations.

Ms Thomas said the NHS did not see it as its job to be checking for such connections and that she did not think the vetting process should be changed to do this.

"While doing all they can to prevent unsuitable people taking up employment in the NHS, employers also have a duty to look after the rights of their staff and this includes not discriminating against employees in any way on the grounds of their religion or belief."

I can see what's coming next from the Loony Right - "No Muslims allowed to work in the NHS". Oh come on you can do better than that ... how about "No Muslims to be treated by the NHS"?

I am appalled.

Update Friday: Dr Crippen has posted on the NHS "terrorists" - an excellent post. However, the comments are generating much of the racist, fascist bigotry I predicted above. I should add to my predicted reactions above "I refuse to be treated by a brown doctor - s/he might be a Muslim trying to kill me".

And this reminds me not to make judgments on appearances: when Kezia was admitted to the RMCH, a small boy with ALL was also on the ward. His brown mother wore traditional Pakistani clothing and when his brown father came to visit the family would sit down and read together from an Arabic-script book. Turns out the book was an Urdu translation of the bible and that there is a thriving community of Pakistani-origin Catholics in Lancashire.

Over in the comments at NHS Blog Doctor ni gp reports "apparently local Police Constables have been touring GP surgeries in parts of England asking the receptionists if any of their GPs are religious extremists". I am appalled.

To quote the BMA Chairman "Overseas doctors have made an invaluable contribution to the NHS over the years and it would be dreadful if the trust that exists between patients and doctors, whatever their background, was harmed by these events".

Remedy UK to welcome Alan Johnson

The junior doctors' organisation Remedy UK is planning to welcome the new Secretary of State for Health Alan Johnson. From their press release, "On Friday 28th July at 08:30, Remedy UK will present the new Secretary of State with a flower from each junior doctor in the country who does not have a training post for August 1st".

Aphorisms II

I´m going to make the change of our title aphorisms semi-regular but so you don´t miss one I will make the announcement of a new aphorism a cumulative post. Latest first …

The newest aphorism in our header is from the Rite of Spring by Djuna Barnes.

Previous entries:

"An opinion is a limit to understanding".

Natalie Barnie

"I reserve the right to go off topic and talk about anything I damn well like".

Andy at Csikszereda Musings.