Freedom of Information - Africa and America

When we first arrived in the UK with Kezia in May 2006, one of my first questions to our consultant John was how much access we would have to her medical records during treatment and I was assured full access to paper records under supervision and complete photocopies (at my expense) if I so requested.

As my regular readers know, I have recently been made redundant by the United States government. During my 17 years of service with the USG I have variously been considered an employee and a contractor. I have regularly signed receipts for USD 600,000 + of diesel fuel. And as part of my annual contract received treatment for myself and my family from my employer's doctor.

Upon my termination I requested our family medical records. At first the manager agreed - the doctor was absent. On the doctor's return, I repeated my request and was informed I could have a copy of the records but the Federal Government would hold onto the paper records for five years. Wandering down the corridor to talk with Doc, I knock on his door to be told he will only allow me a "resume " of my family's medical records.

Yesterday Jaime's class teacher called a general parents' meeting. We also have the opporunity on an individual basis once a week. About eight mothers and three fathers attended - instead of commenting on the modalities of the school's operation regarding the class, they were more interested in their child's results .... Iput my hand up and told Jaime's class teacher, D. Anastacia, "I don't want my son's results read out to every other parent - I know his difficulties - I can meet you on Monday morning to discuss them." She and two other parents smiled in agreement

Happier Days?

In Cafe e Companhia lasy Saturday - photo courtesy of Chico.

Homecoming

Family Re-united

Kezia's new school "Arco Iris" - The Rainbow.

The Darkness

No posts for a long time. A new aphorism - Isak Dinesen.

One might think everything should be sweet and rosy since the family's return at the end of July but it has not been so easy ...

Jaime and Kezia are well-esconced in the best schools on the island. Kezia had her first physical and blood test two weeks ago - everything fine. However, she is suffering fro what appear to be insect bites (but from which the rest of us are not suffering) and we are keeping them at bay (i.e. not infected) with antiseptic cream. However, doctor appointment tomorrow or Saturday.

The Darkness - my unemployment, debts, stretcing a long way to make ends meet, enormous electricity outages, very slow or no Internet, not keeping up with the web, Internet leukaemia friends, reverse culture and relationship shock and difficulties etc etc.

Under the Hood

The lady who works in the grocery store at the corner of my block is called Denise and she is one of America's great unpublished novelits. Over the years she's written forty-two romantic novels, none of which have ever reached the bookstores. I, however, have been fortunate to hear the plots of the last twenty-seven of these recounted in installments by he authoress herself every time I drop by the store for a jar of coffee or can of beans, and my respect for Denise's literary prowess knows no bounds. So, naturallly enough, when I found myself with the daunting task of actually starting the book you now hold in your hands, it was Denise I turned to for advice.

"Listen", I said. "I don't know from writing a book. I have all this stuff in my head that I want to get down, but what do write about fiirst? Where do I begin?"

Without looking up from the boxes of detergent to which she was fixing price tags, Denise graciously delivered up a pearl of her accumulated wisdom in a voice of bored but benign condescsension.

"Start off with the saddest thing you can think of and get the audience's sympathies on your side. After that, believe me, it's a walk."

Watchmen, Alan Moore & Dave Gibbons 1986-87.

In other news: the family has returned, domestic strife and I've been made redundant. Hence the lack of blogging ....

Aphorisms IX - Who watches the Watchmen?

As I haven't changed my heading aphorism in a long time and in the light of recent revelations ...

- Member of Parliament expenses

- the National Health Service IT programme to keep all our healthcare records in one massive database

- government plans to introduce a national ID database

- various losses of confidential data on computers, USB sticks and even paper, both civil and military

- Joao de Menezes murder by the UK police

etc etc

it is time to change my head aphorism to ...

Quis custodiet ipsos custodes.

" Who watches the Watchmen?"

from Juvenal's Satires, VI, 347 - epigraph to the 1987 US Tower Commission Report into the Iran-Contra affair.

A Lover's Sonnet

What'll I do when you
are far away
and I am blue
What'll I do?

What'll I do when I
am wondering who
is kissing you
What'll I do?

What'll I do with just a photograph
to tell my troubles to?

When I'm alone with
only dreams of you
that won't come true
What'll I do?

© 1997 H. Stephenson

A Tale of Three Doctors, a Nurse Practitioner and a Pissing Contest

Obviously, the family has lost any natural resistance to malaria over the last three years and there are two malaria prophylaxis drugs recommended for children of Kezia's age travelling to countries with malaria:

Malarone with side-effects: neutropenia, pancytopenia.

Mefloquine with side-effects: principally psychological (bad dreams etc, nothing haematological)

Kezia's consultant wrote to our GP practice in the UK requesting they prescibe Kezia with Mefloquine. Our family doctor here recommends that Kezia takes Mefloquine.

Jaime and Kezia have been taking various vaccines over the last couple of weeks. And the "Nurse Specialist in paediatric and adult vaccinations" insists that Kezia takes Malarone, that she hasn't prescribed Mefloquine in ten years, and won't, that she has much experience in malaria prophylaxis.

Has she experience in paedeatric oncology/haematology? Has she experience in paedeatric oncology/haematology in malarial zones?

My brother Pete is going to try and get through to the Doctor rather than the "Nurse Specialist" tomorrow and sort this out. Thanks bruv.

Afrox - you have a long way to go.

And Drs Crippen and Rant you will hear more from me on "Nurse Specialists".

OGC Gateway Reviews - FOIA Response

Response from the Office of Government of Commerce regarding my FOIA request regarding North West and West Midlands SHA Gateway Reviews into IT. (Open in new tab to enlarge).

It seems the OGC's review of 2006 never took place!

Here we Go - Oh! Barfing all over the Ward!

Hello everyone, plus even more new people! Are you absolutely barking? Do you know what you've let yourselves in for? Indeed you do. And you're in good company.

Well, that was an ‘interesting’ week, in the sense of the Chinese curse ‘may you live in interesting times’…

Last Wednesday I went for my first dose of radiotherapy, (I have 30 doses to look forward to) which involved being stapled to a piece of steel for 25 minutes inside the mask I have had made up for me. To say it fits my face & throat like a glove is a bizarre exaggeration. It’s so tight that I can’t even open my EYES when I’ve got it on. Now THAT’S sensory deprivation for you. In fact, to riff off my Ripley / Alien theme, it really isn’t much different to having a face-hugger adhere to my face (thankfully without tube down throat planting alien seed in my stomach…)

Luckily, I’m not claustrophobic, and I can just about relax & persuade myself that it’s a bizarre, beepy, if oddly futuristic sci-fi spa treatment. Yes, I do have a lively imagination. Good thing too!

Anyhow, got that out of the way, and because it was Week One, I had to have one quick dose of chemo.

Quick? Well, that was the plan.

However, I had the worst reaction to any of my treatment so far.

When the Doctor asked me how I was, my answer was to throw up all over myself (how lovely – all my previous tossing-of-cookies has managed to hit a receptacle of some kind), have a massive collapse in the middle of Outpatients involving stretchers, ECG machines, nurses running around with heart monitors & twittering how I had a systolic blood pressure of 27 (impossible apparently) and a haemoglobin count of 7 (ditto).

Clearly, once again I just WASN’T GETTING ENOUGH ATTENTION and had to throw a big drama queen special. Sheesh.

So, I was hauled onto a Ward, and given my very first blood transfusion ever!

Three Bags Full, and all.

I am finally a true vampire living off the blood of others! How apt.

I’m only Type O Neg however, nothing exotic.

I was finally released on Friday night – or rather, I kind of discharged myself. I was fed up of not being able to stop vomiting. I just couldn’t eat the hospital food, and knew I was getting under-nourished, and would just get ‘iller’ if I stayed in. So, I am home and feeling better now that I can eat stuff I can actually (and indeed, literally) stomach.

So, it’s Monday, I have a wonderful friend taking me into radiotherapy, and here we go all over again!

29 doses to go. And counting, believe me.

Big love to all of you gorgeous gorgeous friends!!

Rosie xxxx

‘Some people are like Slinkies, really useless, but make me happy when pushed
down the stairs...’

Payment by Result

I'm slowly clearing up the dining table, covered in shit (sorry, papers) in anticipation of the family's arrival on 31 July.

As I clear up all these papers, more accumulate. On top of the latest pile is the British Society of Haematology/Royal College of Pathologists' January 2008 report Haematology Consultation Workforcr: The Next 10 Years. Table 1 is entitled Initiatives since the previous workforce document (2001) and is divided into "Rgulatory Initiatives" and "Influential Initiatives".

One of the latter is "Payment by Results". How the hell are they going to evaluate and pay Kezia's consultant on whether she survives leukaemia when he is following an approved protocol for the treatment of T-cell ALL?

Is the doctor reponsible for me drinking like a chimney and smoking like a fish?

The National Programme for IT - "Gateway Reviews"

... otherwise known as "Connecting for Health" is the UK government's to produce one huge database of its citizens' healthcare ranging from booking an appointment with your family doctor to prescribing medication to keeping your medical records to ...

It has been widely critisised - by NHS staff, by the wider IT community, by politicians etc etc. Data security, contracting issues, technology, deadlines, training, consultation ... the list goes on.

The state treasury's Office of Government Commerce (OGC) has undertaken reviews of the project's status since its inception in 2002. These reports, known as Gateway Reviews have remained confidential, out of the public and media's eyes.

The magazine Computer Weekly submitted a Freedom of Information Act (FOIA) for these reviews to be published in public. Thirty one reports were published last week. Computer Weekly has a summary.

In 2005 responsibility for the project was passed from the Department of Health to five mega-conglomerates of regional Strategic Health Authorities (SHAs) The North West and West Midlands Cluster (NWWM) consists of six SHAs.

The Gateway Reviews highlight outstanding issues as with traffic lights - red, amber, green. In the NWWM Cluster of nine recommendations, one is green, five are amber and three are red.

The review was made in 2005.

The original project was budgeted at ₤5 billion - it is now ₤12 billion.

The head of IT at the Department of Health has stated that if no radical progress is made by November 2009, a radical "shake-up" will be necessary.

The NWWM Gateway Review of 2005 expected a further review for early 2006 - it was not published (or not done?). I have submitted a FOIA request to the OGC about this.

My previous FOIA request regarding how much Microsoft was earning from this project was rejected.

Childer Award Presentation

Here's the local newspaper's report about the Childer Award Presentation at the Town Hall last week. Jaime received a medal and is in the middle of the group photo.

What changes?

In between reading episodes of Nansen's attempt to reach the North Pole (eventually setting out from his ship at the third try), I am rereading a collection of academic papers with the title "The Central Biland Al-Sudan" presented at a conference at the University of Khartoum in 1977. Geographically this area stretches from eastern Mali across the Sahel to western Sudan (Darfur).

In one paper relating to the life of a Muslim cleric in the early 19th century who promototed a militaristic concept of jihād. The author (Omar Jar) admits he does not have the answer to the rise of this aspect of Islamic philosophy but suggests:

"The European invasion and occupation of most parts of the Muslim World, which resulted in large numbers of Muslim leaders and scholars leaving their countries to take refuge in the Holy Land."

and

"The activities of the Ottoman [Turkish empire] agents [read today al Qaeda, Taleban etc] who took the opportunity of the pilgrimage to call for jihād against the infidels - the European powers who tried to dismember the [Ottoman] Caliphate. Hence the idea of Pan-Islamism advocated by many reformers and jihād leaders."

I don't make my views about Western innterventions in Middle Eastern, Central Asian and Far Eastern politics explicit on this blog. Regular readers will have a general idea. But ...

When will Western leaders (since pig-ignorant popes in the time of the crusades) learn from the lessons of history?

This post is dedicated to all the medical workers in crisis zones throughout the world.

OUCH!

Evenin’ all,

(…and apologies to anyone (a) under 40 and/or (b) not a Brit as that cultural reference will have gone over your head without parting your hair. Yes I am over 40. I realise that is a shock. I should break these things to you more gently, I know.)

I’m into the final furlong of my week at the Christie, the end is hopefully in sight, and I get out tonight. (Sweet Bird of Space, hurrah!!)

It’s been a mixed week – mostly the choice being which meal shall I barf up next?

In addition, I had a ‘fabulous’ Friday wherein I hurled myself out of a bath and nutted the (very sharp) edge of a hazardous waste bin. Yup, a drama queen to the last, huh? Clearly I wasn’t getting enough attention throwing up, so I decided to throw a faint for a change. One moment I was towelling myself off, the next minute I was flat on my back with my heels in the air (if anyone dares say ‘no change there, then’ I swear I shall SUE your asses), surrounded by nurses asking me how many fingers I could count.

I am now sporting a fine scar, picture attached (only if you have email – sorry Myspace friends, I’m so not posting it). I think the dopey grin is sheer relief that I didn’t faint while I was IN the bath… hmmm.

But my week has improved dramatically since then (could it get worse?) when I discovered that I could order halal meals – yes, CURRY!!!!

For some bizarre reason I thought the halal menu was for Muslims only, but no, not at all. Since then I have been stuffing myself cheerfully with real food. Rice! Veggies! Biriani! Wheee!

.. And I’ll be honest, I think one of the reasons I’ve been so bloody queasy is that the hospital food, though ‘nice’, is nothing like the food I eat at home. And it has been difficult for me to digest anyway… even without chemo to help it on its way.

So my lovelies, take care out there, and Nil Illegitimi Carborundum.

Rosie xxxx

IV Bag Lady

Baldness

Is that really me?

I've been off work from Monday to Thursday last week with malaria so haven't been blogging. I woke up on Monday feeling like shit. Not fit to drive to see the work doctor, not fit for the work driver to come and get me. Our doctor wouldn't send me Coartem (artemisin) without doing a blood test so I ended up testing at the local health post and as the local pharmacy didn't have Coartem ended up taking the Taiwanese anti-malaria campaigns recommended treatment of amodiquine/artesunate combination which everybody in the country says makes them feel even shittier. Still feeling it two days after completing treatment.

But that's not the subject of this post - I'm going bald! Quackery not a solution.

In the days of my father there were two hair styles for bald men. My father who went bald in his twenties chose a monk's tonsure. My English literature teach chose to grow a long wisp of hair from the side and brush it over his bald-pate (didn't fool anyone).

Since birth I have had a genetic trait (from my mother's side) of a double crown which led to taunts of early baldness. Didn't happen.

But now it's happening. Sympathy for Kezia and Rosie who lost their hair through chemotherapy.

What's the answer?

Certainly the skinhead crewcut of the '70s and '80s which typified fascist, racist thugs of the period. And certainly not the tonsure/wisp styles of my forebears.

Some (my brother and our doctor) have reverted to the crewcut (no longer so associated with fascism). So am I.

Good to be blogging again!

Back in the USSR - er, the NHS

Morning campers!

Or evening, or middle of the night depending on which time zone you’re in… yes, that would be me showing off at how far flung my friends are. Ahem… Hamburg, Rotterdam, Amsterdam, Stockholm, Dallas, San Francisco, NYC, Buenos Aires, Sao Tome (look it up, you lazy lot), Winterville GA (honest, not making this one up), wonderful wonderful Copenhagen – not to mention glamorous Widnes and even more glamorous Salford!

Right, showing off completed – for now (he he he).

Yes, I’m checked back into my glamorous boutique hotel – er, ok, the Christie.

And for anyone wanting to visit me this week, I’m on WARD 11!

A whole different part of the hospital too, so lots of exciting new opportunities to get lost while you’re trying to find me. Although this Ward does seem to be better signposted…

I miss the lovely staff on my old ward, but everyone here seems friendly so far. I guess I just got used to the faces on good old ward 4, not to mention the birthday cake & hugs I got off them…

Anyhow, it’s Day 1 of my treatment and naturally I am pretty perky after two weeks respite. I managed to wean myself off Buffy eventually (thank god) as my brain cells returned. You’ll be pleased to know that she did manage to slay all those pesky demons – I know you’ve been holding your breath over that one.

I even did some gardening yesterday! I find ripping up weeds and hacking at things with shears most therapeutic…

I thought I’d send an update now before the drugs kick in and I start feeling GHASTLY. I’ve just poked down a big plateful of veg moussaka with rice followed by chocolate sponge with chocolate custard (delightfully reminiscent of school dinners). I might as well stuff myself while the going’s good.

…and bizarrely, I have lost weight over the past 2 weeks – it hardly seems possible, considering the way I’ve been eating for England. I dunno, maybe chemo/cancer shifts one’s metabolism into a higher gear?

So, nothing profound or zen today folks – just sending love to you all.

Keep rubbing those lucky pebbles & sending Rudie Vibes (you know who you are), lighting candles, or crossing all crossable body parts – whatever it is you are doing, it’s working!

Rosie x

(Aka Barfy the Cancer Slayer)

Stress

My boss, Ken, says I work better under stress. I think he's probably right.

Current status:

- Money: status constant.

- Shipping household effects: status collected but no invoice yet (connected to above).

- Kezia's Santomense passport: status resolved.

- Flight tickets: booked but how will I pay? (i.e. also connected to first item).

- Check-in and immigration at London Heathrow: do I need an affidavit saying Nanda is not kidnapping our daughter?

- Arrival in Sao Tome: a friend who works for the airport authority has promised to get me a security pass into the baggage hall.

Future medical treatment: no oncologist/haematologist here, malaria, vaccinations ...

Domestic:

- the freezer compartment of the refridgerator has packed up.

- for a long the satellite TV decoder has been dead, the kids will expect a new one.

- had to sell two cars (one which my brother-in-law pronged). Nanda will want one.

- the kitchen sink is blocked.

The list goes on ...

But, needless to say, I need to resolve as much of this as possible before their arrival!

I want to ...

See my kids running on the beach ... although the cold dry season has just started and the water is too cold for a dip.

Take them for a burger or a pizza.

See them playing ... and play with them.

See Kezia riding her bicycle and buy Jaime a new one.

Meet them at the airport.

I want to ...

The Health Risks of the Internet

Tom Reynolds new book More Blood, More Sweat and Another Cup of Tea (ok, I know I've been posting on this all week - but he's a bit of a literary hero of mine) has an entry on the dangers of researching your medical condition the Internet.

One of the first things Kezia's consultant, John, warned us about when she was admitted to the RMCH was Internet quackery.

Fortunately, I am both well-educated (this is not meant as a boast!) and (in somethings)sensible so I only take information from cancer charity and scientific sources. And Nanda has been sensible and practical enough to follow John's prescribed advice.

It does not help from the IT data security aspect that companies (such as Google and Microsoft) are now offering to keep your health data and records online!