Happy Christmas

... to our Leukaemia friends.

Rosie and Leonie in Ireland,

Rob, Lauren Fergus and Norah in Vermont,

Lea, Terence, Bianca and Caitlyn in New Zealand.

Clare in France,

Lucia in Blackpool,

Ann and Hayley in Preston.

And everyone at the Royal Manchester Children's Hospital.

What's the difference?

The U.S. heath system is run by the insurance companies (see this), the U.K. systemis run by the politicians - in neither one nor the other do the health professionals ... sigh.

Sicko!

Data Protection

On top of all the UK government scandals re the loss of data protection I find this story regarding Sefton PCT which has not hit the headlines or Parliament.

On the Plane

This time tomorrow I'll be on the plane. Not sure how much I'll post before next year - so happy festive season to all our readers.

Fish and Chips

As you might appreciate, if you are a regular reader of this blog, I like my food. Food, culinary art, cuisine etc themselves fascinate me. I am not a glutton, rather I like small quantities with exquisite taste. Having travelled a fair bit, I have learned to enjoy the cuisines of different cultures. Every culture has something to enjoy.

My first exposure to the cuisines of other cultures was through takeaways and restaurants opened by ethnic minority populations in the UK - when I grew up, principally Chinese, Indian and Pakistani. Increasingly, the range and size of ethnicities in the UK increases.

One of my first stops when I get back, quite probably on my first day, will be the local Pakistani takeaway just 30 seconds from the house, which along with its sister restaurant down the road have the reputation as being the best Pakistani eating-places in town. The owner of both, Mr Raj, is a grand character with a totally shaved head who prefers working in the small takeaway than the larger, more opulent restaurant. He very soon got to remember me and, in spite of my very intermittent visits, I can phone on my first night and say,

"Good evening Mr Raj, Mr Gascoigne here ..."

"Good evening Mr Gascoigne. What can I do you for?"

"Two Lamb Baltis with a nan".

... and sometimes some sundries (bhaji, poppadoms, mango chutney etc).

"How long will that be ?"

"Give me 15 minutes".

"Cheers"

Addressing each other as Mister, amuses me somewhat as we are more or less contemporaries and he is otherwise blunt, straightforward, efficient. The only person I seem to address by other than first name is Jaime's headteacher.

Over my many years of absence from the UK, I have become more appreciative of what are viewed as traditional UK dishes - Black Pudding, Meat Pie and Mushy Peas (with gravy), Steak and Kidney Pudding, Fish and Chips, UK cheeses (Cheshire, Lancashire, Stilton, Cheddar etc etc ... aaahh swoon!) and in this festive season Chritsmas Pudding ! (Generally, I do not have a sweetooth). Additionally, world foodstuffs unavailable here ... European cheeses, wines from Australia, New Zealand, Spain, Chile ...

Nanda isn't particularly appreciative of British or Pakistani food - but has developed a like to a Balti and loves this traditional British dish (from a Chinese takeaway up the road !).

To make a Black Pudding

First, kill your pig.

I wasn't present for that part so cannot regale you with a photo - you probably wouldn't want to see it anyway. I've witnessed killing a pig in your backyard before - Halal or Kosher killing of an animal seems humane in comparison - here it's a sharp implement into the heart. I wouldn't know which is more effective at collecting the resulting blood outflow (hmmm ... and it makes me wonder how they collect the blood for Black Pudding - do Black Pudding abbatoirs have similar dispensations as Halal and Kosher abbatoirs ?).

I once witnessed a Halal killing for our landlady's wedding in Darfur. Two sheep were purchased and tied up in our yard. "Baa, baa, baa ..." one would state, and the other would reply "Baa, baa, baa ...". And then they seemed to get into a shouting match and "Baa, baa, baa ..." together. It was beginning to get on my nerves just a little bit.

The moment arrived - the first sheep was strung up by its hind legs (a bit undignified I admit, justified "baaing" and a bit more shrill) and quickly had its throat cut. Sheep no. 2, having witnessed all this went suddenly silent. Phew! What a relief!

Back on subject ...

Then collect the pig's blood and butcher it, making sure you save the intestines for the pudding skin. Wash out the intestines.

Next chop up the intestine "skins" into the required length.

Tie a piece of palm frond round the end of your skin and fill it with blood.


Close your pudding with another piece of palm frond.


Repeat until you finish up all the blood.

Tie the two ends of the pudding together.

Meanwhile you have got your fire going and put a big saucepan of boiling water on the go.

Put your puddings with some choice herbs in the boiling water and boil for approximately 15 minutes ...






... and remove.



And the last step (after my camera battery had ran out) is barbecue them on the fire.

Microsoft

... is the name of mobile discotheque here ! (I wonder if Bill will sue for trademark abuse). There are various mobile discotheques playing on the weekends and holidays, usually in the open-air. I await (and probably will for a long time) one called Linux!

Blood, Sweat, and Tear-wrung millions

Tom Reynold's, of the London Ambulance Service and the blog Random Reality, has just opened a competition to entitle his second book on which he is working, the first being the exquisite "Blood, Sweat and Tea".

Obviously, Blood, Sweat and Tea is a pun on "Blood, Sweat and Tears".

So I thought I would look this expression up in Brewer's Dictionary of Phrase and Fable (1981 edition), and found the following ...

"The words used by Sir Winston Churchill in his speech to the House of Commons, on becoming Prime Minister, 13 May 1940,

"I would say to the House, as I have said to those who have joined this Government, I have nothing to offer but blood, toil, tears and sweat." In his Anatomie of the World, John Donne, says "Mollifie it with thy tears, or sweat, or blood", and Byron has,

"Year after year they voted cent per cent,
Blood, sweat and tear-wrung millions - why? for me?"

The Age of Bronze, xiv, 621.

Gladstone's speech in Westminster Abbey (22 Feb. q866) commemorating Lord Palmerston includes reference to "the unhappy African race, whose history is written for the most part in blood and tears".

An element of truth in all perhaps ...

Tom's competition is only open until Sunday - so get an entry in quick. I, myself, can't think of anything ...

...except, given the state of the NHS, perhaps Byron's phrase ...

"Blood, sweat, and tear-wrung millions".

Medical Ignorance - T-cells and the Thymus

I have not posted on ALL science for a long time as I thought I had investigated and written about as much as I needed to, that I could understand and that I could try to communicate to others.

I subscribe to the email notification service of BioMed Central for oncology papers. Most are nothing to do with leukaemia but I came across this open-access paper, Gene expression profiling of leukaemic cells and primary thymocytes predicts a signature for apoptotic sensitivity to glucocorticoids, published in November this year.

And I was stunned by a major gap in my ignorance. However, I am also stunned at how recent the science I describe below is.

In the foetus and up to puberty white blood cell T-cell lymphocytes are produced in an organ called the thymus located in the upper chest, not in the bone marrow. In a normally functioning thymus the T-cells are filtered - good from defective, and the defective ones are killed off (apoptosis). Not until 1961 was the importance of the thymus realised - previously a thymus would be surgically removed with a resulting loss of lymphocytes and immunity!

When the T-cell precursors are in the thymus, forming an integral part of its structure, they are known as thymocytes.

The T-cells migrate to other organs (principally the spleen, lymph nodes and bone marrow) and the blood. Gradually, T-cell reproduction is, at puberty, transferred from the thymus to the bone marrow, lymph nodes and spleen and the thymus gradually becomes a redundant mass of fatty tissue.

In childhood T-cell Acute Lymphoblastic Leukaemia the thymus is pushing out loads of T-cell lymphocyte precursors (or as they are referred to in science, progenitors) known as lymphoblasts, not mature T-cell lymphocytes. This is the key to diagnosis - levels of lymphoblasts in the blood and bone marrow.

However, it is seemingly not the fault of the thymus.

The progenitors of the lymphoblasts and lymphocytes are stem cells produced in the bone marrow. Stem cells come in a variety of flavours. Our famous embryonic stem cells can differentiate into whatever part of the body they like - heart, liver, kidney, skin etc. Then they become body-part specific stem cells but some are seemingly multifuctional (interesting research was announced on Friday into using skin stem cells to cure the blood disorder Sickle Cell Anaemia).

Some become blood (hematopoietic) stem cells - those destined to become B-cell lymphocytes stay in the bone marrow, and those to be metamorphosised into T-cell lymphocytes find their way by blood to the Thymus.

Recent research into the roll of leukaemic stem cells (and when I say recent I mean this decade) has been focussed on Acute Myeloblastic Leukaemia rather than B or T-cell Lymphoblastic Leukaemia but malformed stem cells do seem to be the "culprit" in all leukaemias.

Genetically-malformed hematopoetic stem cells cannot be processed into full-blown T-cell lymphocytes but remain as T-cell lymphoblasts. It would seem that the thymus is unable to distinguish between good and bad stem cells, the progenitors, but can distinguish between good and bad product derived from good raw material. If it receives bad raw material and produces excess lymphoblasts, it won't kill off the bad cells.

At the end of the day the thymus (a factory) is pretty dumb!

The leukaemic stem cells are apparently not very receptive to chemotherapy drugs.

So I will worry.

P.S. Obviously, and as always, this is a lay-person's explanation in both its writing and its reading - if any of my science is erroneous or just slightly "fucked up", then please correct me either through the Comments or by email.

I'll try and get on to Dexamethasone and thymocytes in our next scientific post - hopefully, before I go back to the UK for Christmas.

Gumpagraph

I much admire Past Peak's very artistic daily photo which Jonathan posts under the title "Gumpagraph". They are exquisite and beautiful, and followed by very very funny George Bush jokes - a great juxtaposition to his serious, and more often than not, depressing commentaries on current affairs.

I do not know how he keeps up the energy to do this day after day - and, having experienced some "writer's block" recently, I note how many of my blog links on the right have seemingly died (NHS Blog Doctor, the Head Heeb, Cancergiggles etc). I particularly note the seeming demise of the weekly BritMeds (a round-up of medical blogs - particularly as it was giving my own jottings occasional exposure!).

So dedicated to Past Peak here is our own Gumpagraph (I think Jaime took it as I cannot for the life of me imagine why I would take such a silly but beautiful photo!).

Tantrum

Dexamethasone

Gastric Flu

Shit (excuse the pun) I came down with gastric flu on Monday. Diarrhoea in the morning and vomiting and nausea in the afternoon.

So I went to see Doc and, in what seems like medieval medical logic, he gave me suppositories for the nausea and pills for the diarrhoea!

Left work at 14:30.

Voluntary Ambulance Drivers

I recently wrote about Tom, our ambulance driver, who picks up Kezia and Nanda to ferry them the 14 miles from home to the Royal Manchester Children's Hospital and back again. He is a volunteer, he uses his own car. He doesn't get paid. He gets mileage rates to cover his fuel and the inevitable maintenance costs on his car.

Last week his colleagues in Wales went on strike for two days - they are not being compensated for ever-increasing fuel costs and are seriously out-of-pocket. I don't blame them.

The notoriusly ever over-stretched Welsh ambulance service could hardly do with this strike. I bet the regular full-time struggling-to-cope ambulance service was over-stretched last week, although the NHS managers claimed it had put all contingency plans in place - a voluntary ambulance substitition contingency plan basically means that the NHS pays for a private taxi.

Patients and carers at the RMCH would suffer immensely but for the likes of Tom

Strong Woman

All Done!

Aphorisms IV

I like my current header aphorism so I am not going to change it yet.

However, I almost did with this one from Havellock Ellis. It is poignant. It has no wit. It verges on the Rumfeldesque. But it merits quotation.

"we seldom learn to go right except by going wrong, and we are often most wrong when we think we are most right".

... particularly given my recent comments on "youthful follies".

Of Polyclinics and Hospital Closures

For once the BBC isn't knocking the doctors!

Cancer in Africa

Our regular reader, Rosie, whose daughter Leonie has ALL, posted this comment regarding a paediatric oncologist friend of hers currently work in Tanzania. It speaks for itself …

“… I’m trying to get more drugs out to her after Christmas, I bought a case load from the hospital here and sent them out with a doctor friend of the pharmicist ( Ireland is just the right size to bypass all the necessary paperwork to do things like this). She lost a little patient recently as there was no money to pay the taxi to take the blood from the blood bank to the hospital. However she had a little girl like Leonie and Kezia with ALL who had gome blind and for weeks was having seizures in a semi coma. After consulation with the docs here she kept plugging away with the treatment until one day she woke up looking for her breakfast ! Hardened oncologist she wept with the other staff- this is what keeps her going. She is a marvelous young woman called Trish and Tansania is lucky to have her.”

Imprisonment

A constant source of blogging inspiration has been Jon's Jail Journal in which Jon has recounted to us his many months of incarceration in US penitentairies (i.e. jails). He is (you are if you read this Jon) now out and "free" and back in he UK with his (your) family.

In November I wrote about my friend A. who is serving a perpetual Kafkaesque sentence of imprisonment in a civil society and far from his home to which he is not allowed to return.

Both Shaun and A. were imprisoned through offences committed by, what I will term, "youthfull folly". And I was rather lucky not to go there myself i.e. the "youthfull folly" occurred - just I didn't get caught and imprisoned.

My own last (?) act of "youthfull folly" was having Kezia. Me!? who swore never to have children! At the age of 42 has a child who gets sick with leukaemia. Our imprisonment.

Have a Happy Christmas Shaun and Family!

Urban Landscapes

When I was last at home (and I have to admit now that my home is where my family is), I took these two pictures on a walk with just me and Kezia. I am proud of these two photos because I'm not a good photographer.

This seemingly rural area is in the middle of a decaying ex-industrial northern town. The woods are, in many places, taped-off as the enormous ex-textile mill next door, now owned by the multinational Federal Mogul, was converted into an asbestos brake-pad factory and dumped waste into holes in the woods. And then had to stop and close its activities.

The photo of Kezia does not show her particularly happy, but serious. It was taken at the top of the mill's canal race (diverted water from the river to the mill's water-wheel, when long ago it had one)) she was beginning to get worried when this photo was taken, although she knew she was on the way home. The juxaposition of the vertical of the the tree-trunk on the right, the vertical sapling in the backgound on the left, the ferns at her feet and the stream flowing from background to forground and disappearing behind the tree all combine to make this a magical photo.

On our return she wouldn't pose in front of this graffiti commemorating Pink Floyd's Syd Barrett, although she grumpily had a Coca-Cola in our local pub.

When we got home, she slept - probably we went a little too far.

I am not there to show her and Jaime rural landscapes.

Medical Update

Kezia went to the hospital yesterday for Intrathecal Methotrexate. Seemingly no problems.

I've been at a bit of a loss the last couple of weeks about what to post. Writers' block? Cancer Routine?

I will attempt another post on Dexamethasone from a recent paper but it might take me a few days as I get my head around the science. I should react to the UK government's new Cancer Strategy ... but I wonder if 144 pages of printing is worth the theft of paper and toner from my employer ...

Ful Medames

For Rosie

Along with Aseeda, Ful Medames is the national dish of Sudan and, according to Alan Davidson's monumental Oxford Companion to Food, Egypt.

During our two year stay in Nyala, the capital of South Darfur, Rosie and I would eat Ful five or more times a week. It is delicious and, surely, it must be addictive.

What is Ful Medames?

Alan Davidson explains that ful a variety of the Fava bean, or, as it is known in Europe/America, the Broad bean, Vicia faba. t is strange that I hate British Broad Beans (the alliteration begs capitals!).

Ful is brown, British Broad Beans are green. Sudanese/Egyptian beans have been dried, whilst in the UK they are eaten fresh. It is strange that I hate British Broad Beans (the alliteration begs capitals!). I assume the cans of ful I am now able to buy here (of which more anon) must be rehydrated before canning.

We would stroll down with a Scots couple working alongside us in local secondary schools, and who lived around the corner to the major crossroads where there were a conglomeration of local outside eating-joints. We had a favourite as it made us feel welcome. On the short walk home we would stop at a small Eritrean famine/war refugee-run shop that sold baclava, pistachio nuts and all. Yum! They doubled-up as a tailor shop in the day.

To bring our "wives" into an all-male street cafe, eating outside etc in a Muslim society at 6 o'clock at night might beggar your belief ... but Darfur, believe it or not given the current situation (I cannot speak for the rest of Sudan), is culturally a very tolerant society. Yes - if Rosie and her Scots colleague finished work earlier than their spouses, they wouldn't eat lunch at our busy crossroads joint, but they did find a quite backstreet cafe where they would not be hassled by rough misognyist types.

Back to ful ...

I cannot do more justice to the subject than Alan Davidson's entry in the Oxford Companion to Food, too long to quote here. But the Wikipedia entry is also well-written and provides a couple of links on how to prepare it.

In Darfur it could be ordered "plain" or garnished with grated local cheese - a hard, pungent and spiced (carroway, cumin, poppy seed? Ican't remember) cheese that came in thick twisted "plaits". Oil poured over and eaten with flat unleavened bread. You could add a hard-boiled egg and accompany it with a tomato side-salad.

The enormous ful saucepan must never stop from one day to the next - more ful was just added to last night's left-overs.

Once a week I would choose what one might call Dal for a change.

About two years ago a young Lebanese businessman (and now not the only one) opened a supermarket here. I didn't visit for over a year but was eventually persuaded to ... only to find cans of ful and hummous. Flabbergasted, I have become a regular customer!

Unfortunately, he does not import tahini, so I cannot make my own hummous (chickpeas are widely available here - and I did bring back two jars of tahini - one dose left !).

Our cans of ful come from China!

Ethnicity and Inequality in the NHS II

The basic premise of the Cancer Research UK paper is that even though healthcare professionals may have gone through cultural sensitivity training, they feel inadequate and unconfident in their capability to deal with cultural differences. The fact that cultural sensitivity training discusses “cultures”, not individuals, may lead to stereotyping by practitioners – the woman behind the burqa is not an individual.

Training in the differences between cultures, the paper admits, remains essential but you cannot teach every healthcare professional about every culture they may come across. There is a need for healthcare professionals to be encouraged to view each patient or carer as an individual with their own experiences and value systems regardless of culture.

The paper also recommends, almost as a final aside, “Any steps must be integrated with other efforts to support intercultural communication and reduce misunderstandings caused by language and communication style”. I would thus extend such training to Language Line, the private sector interpreting service used by the NHS with hourly-paid interpreters.

Our first interpreter was a disgrace. From our ex-colonial power and because Nanda is black African we received every bit of second-hand tot clothing she could lay her hands on, every second-hand tot toy she could lay her hands on. Sorry luv (you patronized us so I will patronize you) – we can clothe our daughter, we can entertain her. Nanda might be black, she is not poor or ignorant. Nor is our daughter.

Our second interpreter, same language, white but not from the ex-colonial power was far more sympathetic.

Language Line (LL) interpreters also need a minimal knowledge of medical terminology and procedures. This lack will certainly inhibit the healthcare professional’s ability to interact with and respond to the patient/carer’s personal needs. Language Line needs to evaluate its interpreters, whether they are full-time (do they have any?) or freelance. Patient and practitioner response also need to be evaluated by both LL and the NHS … even though I think as a whole our response would be “we’re grateful for anything from the NHS …”.

LL, although an international company, works like an amateur private English-as–a-Foreign-Language School in a foreign country. The interpreters they call upon for the NHS do not have professional interpreting qualifications.

I would love to see the NHS-LL contract …

For Nanda, although her English is still poor (she is not a language learner in which she has a common trait with the UK white population), she learned the hospital and medical procedures relatively quickly, how to read the lab report, how to ensure hospital transport was booked etc. She soon dismissed interpreting services. Much of that, of course, has to with the amazing sensitivity of RMCH staff and in our case John, our consultant, and Teresa, our social-worker.

The Politics of Bone Marrow

Following on from our post on the DWIB Leukaemia Trust, its attempts to establish a bone marrow register in an African malarial zone, and its attempts to register with the International Bone Marrow Register, I have been doing some research into why First World bone marrow donor registers refuse potential donors from a malarial zone, whatever their ethnicity (which, in this post for the sake of brevity I will refer to as Black, Asian and Caucasian. Equally, for the sake of simplicity, I will use the expressions 1^st, 2^nd and 3^rd worlds).

Results of my research:

1. There are two types of bone marrow transplant (BMT) – one through direct extracts of stem cells from bone marrow, one through stem cells present in the donor’s blood.
2. Malaria, whether symptomatic or asymptomatic (i.e. no symptoms but it is in your body) can produce alterations of stem cells necessary for bone marrow transplants) in that it produces immuno-depression and anaemia.
3. First World Registers appear to think that both of the two methods of stem cell transplant can result in malaria infection.

• First, they understand that a complete blood transfusion could transmit malaria. True.
• Second, I understand that a bone marrow transplant will not, in itself, transmit malaria as modern methods of stem cell extraction from blood separate the red blood cells attacked by malaria from the stem cells in the blood when it is donated and before transplant.
• Third, it would seem likely that asymptomatic malaria would lead to lower levels of stem cells in both bone and blood as the donor would likely be anaemic. However, anaemia can be tested for. It is also unclear (to me at least) what effect the stem cell growth factors, given to donors-by-blood before donation, would have on an anaemic donor.

The Canadian Blood Service even claims it cannot test for malaria! Bullshit - when everyday thousands of people across the world are tested for malaria with a simple technique that takes but an hour.

The results of First World bone marrow policies are prejudicial, and probably racist to say the least ...

Black and Asian people in the First World are prejudiced against in that they do not have access to donations from the Third World – an enormous potential, but as yet unrealized, resource. The DWIB Leukaemia Trust is setting up an example in Ghana. The health service in India and several other Third World countries (but not in Africa) are performing BMTs.

If the International Bone Marrow Register guidelines are not to use donors from malarial zones, then Third World countries are prejudiced against in that they cannot use donors from other malarial zones.

Certainly, I think international and national guidelines need to be revised along the following lines:

• First World donor searches should not reject searches in malaria zone registers but, if more than one equal match is found, then donor origin should be taken into account. If the matches are slightly unequal, a risk assessment protocol should be followed.
• First World donors recently resident in the Third World and Third World donors recently resident in the First World, both groups having recently been in malarial countries, should be allowed to register and have their blood tested for malaria/anaemia. This can be annotated to their records.
• Malarial zone to malarial zone matches should basically be totally permitted.
• If First World non-malarial countries do not want donors from malarial countries, they should at least allow access Third World countries to First World donors through the international register.

There we have it.

Medical/scientific/political knowledge greater than mine will be appreciated – please post in the comments or email me.

As one medical author I read put it, better a match with a donor from a malarial zone than no donor at all.

Let us hope Kezia never goes there.

Update: I note the South African register, a full member of the Global Register, stipulates donors must not have had malaria in the last 12 months rather than the stricter criteria of, for example, the UK register of not having been in a malarial area.

Required Listening

BBC Radio 4's The Investigation looks at UK cancer treatment tonight at 20:00 UTC. Here's the blurb ...

"Simon Cox asks why, despite huge government expenditure in recent years, cancer survival rates in the UK remain the worst in Western Europe. He reveals why government targets have resulted in some patients waiting too long for radiotherapy and asks whether an obsession with expensive new drugs has led to the neglect of other life-saving treatments."

Kezia's first School Crisis

Nanda was phoned on her mobile this morning whilst she was in the middle of shopping to come and get Kezia from school.

I don’t know all the ins-and-outs of it but it seems she was well out-of-sorts. From what I can ascertain, she wasn’t very hungry at breakfast, and the first session at school involved dancing and she ended up very hungry ... and fractious. When she got home there was no fever but she ate an entire pizza!

As she only finished her Dexamethasone on Sunday, it is probably a side-effect of this.

Update: this her teacher's report "We phoned Nanda because Kezia did not seem her usual self. She wouldn't join in the dancing for the Christmas play which she usually loves! Also she was sweating quite a lot and fell asleep on my chair in amongst all the noise in the nursery! We felt it was best to call Nanda."

The DWIB Leukaemia Fund

My attention has by chance been drawn to another cancer charity with an emphasis on Africa, the DWIB Leukaemia Fund.

Founded by two expatriate Ghanaians with leukaemia, Danny Whyte and Ivor Burford, the charity’s principal aim is to establish the first bone marrow donor register in sub-Saharan Africa and get it linked to the Global Bone Marrow Register. As Danny and Ivor (who has since died of leukaemia) state, only 2.3% of potential bone marrow donors in the U.K. are African/Caribbean and ethnic-matching is important. 1 in 5 bone marrow matches are found in white people, 1 in 250,000 in black people.

To date, according to its website, an initial donor recruitment campaign in Ghana resulted in 1020 donors.

The charity has also managed to raise funds to equip the haematology unit at the Korle-Bu Teaching Hospital in Accra with a devoted space for patients with leukaemia and with the equipment to diagnose and treat them.

I do wonder if Ghanaian, and more generally, sub-Saharan African bone marrow donors will be eligible to enter the global register. When I looked at the Anthony Nolan Trust bone marrow register criteria for donation, you had to be out of a malarial zone for six months (which counted me out but counts Nanda in).

I don’t understand the science of this at all, as although bone marrow type is established through a blood sample, I don’t see what this has got to do with malaria parasites. If malaria is truly a factor, then any African bone marrow register will have problems entering the global register - and most of the world’s population lives in malarial regions.

A 38 year-old brother of a colleague has recently died from undiagnosed but suspected leukaemia. Three transfusions, as Kezia …We have a system here to evacuate any “urgent” case to the ex-colonial European power. But the “system” cannot deal with an emergency, it has to be considered by a committee. So our doctors told us to just get out as fast as possible … and because of my privilege, we were able to get Kezia out.

Beds

All too often, bed occupancy rates seem to be used as a quantative statistic in hospital and PCT evaluation.

On the Sunday Kezia was diagnosed the Paediatric Ward at our local general hospital was silent and empty. On weekends the RMCH tries to send home as many patients as possible. We would see the Borchardt Ward empty by as much as 50% on a weekend. It can be argued, obviously, that the kids need some quality time at home, that the parents will be most available to give that at weekends.

But it can also be argued that hospital care is reduced on weekends. There are less doctors and particularly nurses available. We would particularly notice the use of agency nurses on weekends. The doctors who would do the rounds were not familiar to us – they would look at the case notes, a quick question or two and move on. One got the impression there was one doctor in the entire hospital – surely not – but there was certainly not a full complement of staff. Locums and Agencies I assume. PCTs don’t want to pay locums and agencies in order to meet the financial targets set by government so let’s empty as many beds as possible to reduce our need for them.

Without the staff, you need to reduce the number of patients.

Empty beds at the weekend means your occupancy rate goes down, which means … we don’t need so many beds so we can close this ward.

NHS News

Oh the General Practitioners complain too much. Always whingeing that the government is demanding too much of them, that the government wants them to offer Out-of-Hours (OOH) services when the government said the Primary Care Trusts would take care of OOH when it renegotiated the GPs' contracts etc etc.

Don't worry GPs – you are now not alone.

Now the politicians have turned on the hospital consultants (see the Guardian report here).

The House of Commons Public Accounts Committee has “discovered” that since the government signed a new consultant contract in 2003 (which surely Lord Darzi signed ?), average pay rose over the next two years by £ 23228. But at the same time their working hours fell from 51.6 to 50.2 hours per week.

These factors have led to a higher rate of recruitment and retention – and less private work (“oh fuck, we haven't got enough consultants for the NHS-contracted Independent Sector Treatment Centres”). And more patients are seeing consultants.

Good to see some explicit criticism of the government and NHS management – implementation of the new contract was “rushed” and “NHS managers did not take advantage of the intended advantage to introduce modernised working practices”.

Now I understand ... the DoH didn't provide the managers with Guidelines!

Will the government, after the GPs and consultants, now turn on the NHS management? Wishful thinking ...

Government: “You haven't got the private sector involved enough, and when you have, you've placed far too much emphasis on quality, so you've forced us to withdraw their contracts ...”

Managers: “But the private sector can't find consultants as the NHS now pays them far more than the private sector because you signed their NHS contracts and you signed the ISTC contracts ...”.

When will the government admit that (some) improvements in human resource management have led to (some) improved care through its increased investment in the NHS? When will it correlate reduced working hours for NHS staff, increased salaries etc with improved outcomes instead of always waving a stick rather than a carrot?

I predict Drs Rant and Crippen that you may sympathise with the NHS managers in the end (even if you only say “I told you so.”) ... because much worse may come ...

In other news, a survey commissioned by the Guardian newspaper from Medix, a public survey research company often used by the Department of Health, has found that GPs are reticent, in the extreme, to upload patient data to the planned national NHS database of patient records.

It is up to the GPs to give the choice and the patients to choose to not have their medical records uploaded to the national database. The Department of Health points to a trial in Bolton where less than 1% opted out – but I wonder how informed both the GPs and the public really were.

Ethnicity and Inequality in the NHS

One of the (now not so) new Secretary of State for Health's stated aims for the NHS was to reduce health service provision inequalities whether regional, age-group, ethnic etc.

A major paper by researchers, sponsored by Cancer Research UK, looking at the perceptions of healthcare professionals into their own interactions with patients and carers of cultures other than their own, has just been published and makes interesting reading.

I need to reread the paper ... but a brief personal comment.

African women carry their babies on their back and Nanda and Kezia were no exception. When Kezia was upset, onto Nanda's back and all worries would disappear.

When we were “interned” at the RMCH, the nurses on the Borchardt Ward noticed this and through their cultural “inexperience” were totally amazed at the calming effect this would have. One day Kezia was upset at a treatment and Nanda, probably in her anxiety at Kezia's distress, completely forgot how Kezia would calm down and sleep on Nanda's back. The white causcasian nurses, with no or little cultural “training” suggested “Try putting her on your back like you've done so may times before ...” And Kezia calmed down and slept.

A conclusion in the abstract of the paper is “A shift away from a cultural expertise model toward a greater focus on each patient as an individual may help.”.

Couldn't agree more!

The nurses had observed what worked and what worked successfully for the individual regardless of her ethnicity.

Medical Update

Kezia and Nanda back from the hospital. Counts good. John not worried by her cough and runny nose given the weather and and in/out of the cold/warm. No fever. Now 5 days of dreaded Dexamethasone so off school for the rest of the week.

Gascogne

Last month, I posted that Kezia had joined the Taleban ... she has since, I am told, switched allegiances - I do like to think there is some fighting blood in her (oh excuse the puns) ...

The origin of our family name (that is mine and Kezia's by blood and Nanda by marriage) derives from the southwest French region of Gascony or rather, in French, Gascogne. Twist around some consonants a Vascon becomes a Bascon (and hence a Basque) becomes a Gascon - but in the unique Basque language none of these terms resemble how they refer to their own language, Euskera.

Back in the 11^th century the north-west of Spain formed the kingdom of Navarre whch was closely allied with the neighbouring, in French, Gascogne, the land of the Basques. The Duke of Gascogne had inherited the throne of the much larger Kingdom of Aquitaine in 1064 (check). And the Kingdom of Navarre was subsumed, through marriage into the Spanish kingdom of Castille.

The Duke of Normandy, William, decided to invade England in 1066 and needing some human resources and, knowing the Basque reputation as both sailors and mercenaries, struck up with the Duke of Gascogne/King of Aquitaine who provided a bunch of Basque mercenaries who in turn reaped the rewards and benefits of victory.

And hence our family was born ... whether as vassals of Basque overlords, whether as their bastard children or their direct heirs or a mixture of all ...

Today the Basques are still fierce and fiercely independent. They continue through both peaceful and violent means to struggle for their own independent country and have suffered much in the last 100 years, especially through the years of the Spanish fascist dictatorship of Franco. But democracy, after the fall of Franco, has not resulted in the fulfillment of Basque aspirations, in that Spain still won't let them go - to form their own independent nation, Euskadi.

For centuries this has involved armed struggle but only in the last century was this formalised into the organisation known as Euskadi Ta Askatasuna (ETA) – meaning Euskadi and Independence. ETA has been compared with the IRA in northern Ireland – there may be similarities in modus operandi but there are certainly not similarities in cause.

On Sunday I had lunch with two Basque friends, A. & M. A. is from the Spanish side of the border and M. from the French side.

When A. was a teenager working as a security guard at a nuclear power-plant in construction, widely opposed by the local population, he was persuaded to and opened the gate to a unit of the ETA who blew up a few bits and killed a policeman.

A. had to go on the run. First in Spain, then in France and finally in Ecuador – where, with the help of local security services, he was kidnapped by the Spanish secret services. Rather than a life sentence in a Spanish prison, he was sentenced to permanent exile, ripped of nationality and a passport.

Others “members” of ETA received similar treatment and were exiled to various countries around the world but have since been granted passports of those countries. However, Spanish aid to our country is conditional on not giving him a passport.

So Kezia ... I will retract my statement of October when you stood proudly with your Chinese Mk5 Water Cannon in the aid of the Taleban. They are a real bunch of reactionary anti-female farts, I agree – they wanted you to cover your hair which is only just growing back and of which you are inordinately proud and want to show off as a sign of your fighting blood. And, anyway, you didn't like the uniform.

So Kezia has changed her mind. She has taken that Chinese Mk5 Water Cannon over to ETA ...

... and none of us could ever find where to put the ammunition!

Routine

Can cancer become routine?

Short answer – yes.

Long answer ...

The first year was full of ups and downs, highs and lows, crises and sighs of relief when they were over. All the different phases of the treatment protocol, the different treatments themselves, the different drugs, learning how to care for Kezia, dealing with bureaucracy, Jaime's visa, chickenpox, childcare, etc etc.

The second year's maintenance treatment is the same cycle x times. We know the monthly Dexamethasone will fuck her up and she will have to stay off school. Mercapturine every night, Methotrexate once a week, Cotrimoxacole evey weekend etc etc ... Hospital visits for Kezia and Nanda are once a week or fortnight.

Jaime has been going to school since he arrived in November 2006. Kezia has been going to school since September this year. Kezia 8:30 – 12:00, Jaime 8:30-15:30. Hospital visits for Kezia and Nanda are once a week or fortnight. If a hospital visit occurs in school holidays, then Jaime is allowed to come along ... and enjoys it. Normally it's Tom, a volunteer, who picks them up and takes them home – a familiar friendly face.

We've had no real medical crises. We had a social crisis back in January and, thanks to our Clic-Sargeant social-worker Teresa, safeguards have been put in place in case such a crisis occurs again Fortunately, we haven't had to use them.

Since Kezia started school, Nanda can now go shopping without having to drag the kids along.

And me? I get up and go to work. I come back from work and write this. In between I do the chores of daily life (shops, bank, preparing food, filling up the car etc etc) but try to keep these to the minimum.

Routine. Cancer routine.

So the next post describes a rare social event in my life.

Confused NHS Managers?

Dr Rant posted about Practice Based Commissioning (PBC) a few days ago – and seemed totally confused – so I visit the Department of Health's website to find out more and I am even more confused.

The DoH website really does not explain what this new bureaucratic procedure, introduced in April, “is”. The aims it states are clear and laudable. The Frequently Asked Questions appear to be half-aimed at educated “clients” and half-aimed at General Practitioners and leave me even more confused.

On October 27 the DoH produced its first GP survey of PBC (note no patient survey here) and it would seem to be pretty lukewarm. “Earlydays” is the optimistic conclusion. More realistically it really doesn't seem to have done anything.

And from this survey it appears the Primary Care Trusts, who are meant to provide GPs with support in the implementation of PBC, are equally confused.

And as well as no patient survey, no PCT manager survey – are the GPs the only stakeholders in this ?

So please Dr Rant or Dr Crippen or anyone explain to me what is Practice Based Commissioning – so I can make a choice?

Cottaging

Back in the late ‘80s I studied for my teacher’s qualification at university and lived in strange accommodation. A three-floor and three flat Victorian house about 20 minutes from the university.

In the top floor flat was Neil, doing a doctorate in Forensic Archaeology. Essentially, this meant his flat was full of bones from medieval graveyards, which he would measure to the micrometre.

In the middle-floor flat was Aidan, a fashion-design student at the local polytechnic who I got on with great.

I shared a flat with Piers, 20 years older than me, a recently divorced liberal hippy who was totally devastated at losing unlimited access to his young children.

Aidan and I would occasionally go out together to gay clubs – and the only time I have been “queer-bashed” was on exiting a club with him.

But Neil took the biscuit!

If he didn’t score at the nightclub, or if he felt like sex on a quiet weekday night, off he would go to the public toilets on the corner of Victoria Park, a primitive, dirty, Edwardian-constructed public utility.

Before I continue with this story I should explain a bit about “cottaging”. Until 1967 male homosexuality was illegal un the UK. Until that time much illicit male homosexual contact was established in the exclusive male domain of male public toilets. Cottaging became an established cultural practice even though male homosexuality was legalized 30 years ago.

So let’s get the point of this story …

My step-nephew is marvellous. In his late twenties now, he is totally eccentric and highly intelligent! He is gay but long-past youthful cottaging episodes. And, even though I am not a person to laugh out loud when I find myself amused, he has just made me guffaw and guffaw and guffaw …

He recently went down the local municipal market at 1 pm on a Friday and, caught short, went into the market's public toilets ... to paraphrase his own words “There was this really pretty 19 year old who eyed me up so ... honest I haven't done this in years ... we went into a cubicle ...”.

And they were caught in-flagrante by the municipal market toilet cleaner, carted off to the market offices and they are now banned from the market!

Lucky not to get carted off to the police and get served an ASBO!

To Be or Not to Be

The Central Manchester and Manchester Children's University Hospital Trust (CMMCUH), currently a Primary Care Trust, is making a bid to become a Foundation Trust.

I summarised the official definitions of the various types of financial/administrative status of the different “units” of our “socialised” healthcare system here. Sorry international readers for having to make you navigate the ways and means of English health service bureaucracy .

Such a change in status may, I will admit, be advantageous to the Trust itself. But not necessarily advantageous to the National Health Service as a whole.

UNISON, the trade union for public service workers including many in the National Health Service, objects to the concept of foundation trusts for several reasons which are outlined here and here.

I will only elaborate on some of them as they pertain to Manchester and other trusts in the north west region.

A key concept of foundation trusts is that they will be able to keep any financial surpluses they generate rather than hand it back to the overall NHS “pot” out of which the NHS is financed. A foundation Trust will be able to sell off capital assets and keep the profits. The foundation trust will be able to contract out services (including medical services) to private companies, who are more interested in patient volume (as they will be paid by this) than quality-of-care, without consulting a central authority. This will generate a “class division” between foundation trusts and poorer trusts not eligible for foundation trust status on various criteria but including profitability potential.

Although I somewhat agree that the CMMCUH's Royal Manchester Children's Hospital, Booth Hall Children's Hospital etc need to be replaced as old Victorian “unsanitary”, “difficult-to-maintain” buildings, I am now somewhat cynical about the trust's motive in building new children's (and other) facilities on its principal site in central Manchester – first, plan a brand-spanking new hospital, become a foundation trust and then sell-off the desirable suburban old (and, I will say, to-our-mental-health, comforting) hospital sites and keep the profits. And the government will say “oooh ... you're in the black, so we don't need to give you so much money”.

And who is currently paying for Kezia's leukaemia treatment? Not the CMMCUH to which her treatment centre belongs, but the Pennine Acute Hospitals Trust (a primary care trust) which is having to close services at district general hospitals to make ends meet.

Ok, that's the first gripe over – now onto the second.

“Membership” - in the consultation document (and more on that below!), they want 12,000 public and 8,000 staff to become “members”. The 20,000 “members” will represent John-and-Jane Public and Jane-and-John Staff. Between us, we will elect 33 governors. Of these 33 governors, 2 will be Local Authority representatives, 2 will be Greater Manchester residents and 2 can be from anyone in England and Wales (hey, I can just imagine becoming a foundation trust governor groupie elected to every England and Wales foundation trust!).

None of the 33 governors will be British Medical Association members (representing doctors), none will be Remedy UK (representing trainee doctors), none will be Royal College of Nursing reps., none will be local GP reps. and none will be UNISON (representing the cleaners, porters, kitchen workers etc).

The Governors in turn will elect some of the Board of Directors. The Governors can select the five to nine non-Executive Directors including the Chair, and then there are 5-9 Executive and non-elected Directors. In the consultation document it is not explained how and by whom the Executive Directors are selected nor whether the 5-9/9-5 balance between Executive and non-Elected Governors is statutorily regulated.

UNISON argues that 20,000 members will not effectively represent the views of the entire population. Manchester, Greater Manchester and the entire North-west, which the CMMCUH serves, has a population of several million. Who are going to be those most disposed and most available to become “members”?

Middle-class, literate caucasians ...

Third gripe. As patients, clients or customers of the CMMCUH, and regularly and frequently visiting one of your hospitals for one year and a half, were we presented at any time with this consultation document ? Was it there to pick up in the corridor of the hospital ? Next to the copies of the local daily free newspaper Manchester Metro?

And the pathetic consultation questionnaire had to be submitted by 30 September.

However, it is not apparently too late for me to become a member.

Again, the government wants me to make Choices.

So, Dear Readers, should I or should I not become a member?

Two Plugs in One

Quilts for Leukaemia and Random Acts of Reality

Recommended reading top left.

Having Tom recommend our blog at the Cheltenham Literature Festival requires a pay-back Although the book is available for free on-line under a Creative Commons License, I would urge our readers to buy a paper copy – you cannot really curl up in bed with a computer.

I was interested in how a blog gets turned into a book.

Although Tom does not hide his political sympathies when it comes to the “dumbing down” of the NHS, he does not dwell on it as much as Drs Rant and Crippen (and perhaps myself) – we regularly comment on the government's health policies (although personal experiences also feature), whilst Tom concentrates on personal day-to-day experiences and his political sentiments seem to come out from the occasional comment in the narrative of an incident. (I must pay due respect to Dr Crippen's weekly round-up of interesting cases – and where the hell are you and the BritMeds?).

Drs Rant and Crippen run excellent blogs but methinks we are too political (and in my case too “scientific” as I learned about Kezia's illness and treatment) to get picked up by a publisher.