Polyclinics and Choice

Sally Wainwright comments on Lord Darzi's latest "blog" post:

"I have just come back from a so-called consultation on the future of head and neck surgery in the Anglia Region and it is crystal clear that the PCT will be voting in July for the option chosen (without consultation)before the consultation began! This means that Ipswich Hospital will lose its head and neck cancer surgery and patients requiring this will now face a 100 mile round trip up to Norwich and back.

The more we hear about consultation and choice the less there is in reality, as the Government proceeds to impose its regionalization policies on district hospitals. It might be marginally more acceptable if the Government was honest about what it is doing and acknowledged that the Dept of Health is imposing change from the top downwards regardless of protests, petitions, patient forums and these staged consultations.

The NICE guidelines themselves are not compulsory, they leave room for flexibility; but once these guidelines pass into the iron fist of the Dept of Health they become compulsory. “Compliance” is forced upon local hospitals, with all the changes railroaded through."

This is at a time, as Pulse reports, that 100 GP surgeries in London have already been earmarked for the chop and that it is highly likely that this will increase to 400. At a time when the government claims to be increasing choice and ease of access ...

"Dr Kambiz Boomla, chair of City and East London LMC, warned polyclinics could create ‘enormous access problems’.

‘People don’t expect to take a bus to visit their doctor,’ he said. ‘People expect their GP surgeries to be in walking distance of where they live.’"

David and Goliath

I am pointed by the (primarily US-orientated) Grand Rounds to this post by Dr Wes on the role of electronic health and medical “care” (e-Health) in the United States.

I am horrified and I become more aware of the ethical and confidentialty issues involved in this . The NHS IT Spine project is writ large in my thoughts and has come under constant criticism, the latest of which centres on the curtailment of its major contractor for the south of England, Fujitsu. I am concerned that a major health IT project has been hived off regionally to different companies.

Microsoft is intimately involved in US web-based “Personal Health Records” (as are Google, Walmart etc etc) initiatives. The NHS Connecting for Health “project” wants all our health/medical records online using Microsoft software.

In the US the multinational IT companies (Google, MS etc), retail outlets (Walmart etc) etc etc are allowing you to upload personal medical data to their on-line web services. When you get to the hospital, you will tell the hospital (if you're conscious and have signed up) to download your data from Google, Microsoft, Walmart or whoever.

Is this data accurate?

Polyclinics gone mad, NHS IT Spine gone mad. But I would rather have “my data” controlled by the nationalised and centralised NHS than by Google or Microsoft or Wallmart ...

I can only say that I am grateful we still have a (even if semi-) “socialised” system, that the NHS Spine/Connecting for Health totally fucked-up project is still in the hands of the NHS (or is it?)

Fuck ... with all of them.

P.S. Dr Wes points to the ludicrous system of hospital and physician ratings supported by these Personal Health Record websites. The UK government is now going to rate hospitals on their surgery mortality rates (report here) so you can choose where hip replacement surgery is more sucessful than a heart transplant. Silly – Papworths is not an expert in hip-replacement but is a leading centre for heart replacement. I am far more likely to die from a heart-transplant than hip-replacement. But note they are not going to rate on the type of surgery ...

But given my ignorance as Joe and Jane, I'll choose Papworth's as a centre of excellence for their surgical skills and have my hip replacement in Cambridge when I live in Exeter as they are superb surgeons ... except alot of cardiac patients there died last year.

Adrian on AlJazeera

Adrian Sudbury was interviewed by AlJazeera on Monday (Adrian's blog, AlJazeera and YouTube Part 1 and Part 2) - I hope it was put out on their Arabic channel as well.

A list of bone marrow registries worldwide can be found here.

Our second anniversary

... since we flew into a rear-guard action within the war-zone.

Most people, who can, fly out of war-zones, all but journalists and armies - and those who become aware of the gravity of their illness and are able or enabled to arm themselves to resist. If we had stayed here, the war-zone would quickly have come to us and, without arms, we would have been massacred.

An uneasy truce has been fought and mediated by Dexamethasone, Cyclophosphamide, Daunorubicin, Methotrexate etc etc. Josie and Davo won many battles but lost their wars. Adrian is putting up a brave amd great last-stand knowing he has lost his war.

I hope our truce becomes a permanent peace.

(Apologies to Lucia and Potentilla who object to the term “fighter”, as do I, and may/would take objection to my metaphor).

To finish my celebration I will quote our British Embassy without whom Kezia would not be alive today:

“Classification: URGENT – FAO Duty CIO

To: UK IMMIGRATION Heathrow TM2

From: Jo Ford ECO

Date: 18/05/06

Message:

ATT: Duty CIO

We have an emergency case involving a dual nationality child. The father, Angus Robin Gascoigne UK ppt xxxxxxx [no. omitted] will be travelling with his wife Fernanda Soares Lima, a [country omitted] national ppt xxxxxxxx and child Kezia Lima Gascoigne (travelling on the mother's passport arriving on TAP from Lisbon on Saturday 20^th May on TP363 t 21:50.

We cover visa and consular services for [name of country where we live]. The Consul here is satisfied that the child is entitled to a British ppt and I can confirm that we would have issued either a British ppt for the child and/or visa for mother and child. However, the family are in [name of country] and there is only one flight per week here and they have just missed this week's one.

The child is ill and needs to travel urgently for medical treatment. I have contacted the ALO in Lisbon, Denise Beddows, and she has agreed to get TAP to carry the family without visas. I would be grateful if you could land both pax exceptionally without visas. If you need further information ...

Many thanks for your assistance in this matter.”

Ironically, we had more problems with immigration and TAP at our point-of-departure and in Lisbon than at Heathrow where the UK's Immigration Service is notorious for giving people the 3^rd Degree and carting people off to Detention Centres – they were 100% helpful and immediately stamped Nanda's passport for a six-month stay.

A long two years ... and it is by no means over yet.

Bone Marrow Donation - Education Policy Petition

Sign the petition to change education policy to require schools/colleges/other institutions to educate students about bone marrow donation on the Downing Street Website here.

The English Colonial Gentleman's Larder - Marmite

Following on from our post about English mustard, we have decided that a mini-series is warranted that will be entitled "The English Colonial Gentleman's Larder".

Marmite – a product that surpasses social class, age groups and regions – whether you love it or hate it. Generations of English children have enjoyed Egg Soldiers with Marmite, adults make sandwiches of all descriptions, and more recently Marmite-flavoured crisps and even coffee ice cream with a chocolate sauce flavoured with a dash of Marmite.

Commonly, described as a yeast extract, it is not an extract. Salt is added to suspension of yeast cells making that solution hypertonic. The yeast cells shrivel up triggering autolysis in which the yeast cells self-destruct. The dying yeast cells are heated to finish them off and the resultant goo is filtered to make a nice smooth, dark dark brown paste. A few things are added but not much. It is highly rich in Vitamin Bs and gained much popularity in the First World War amongst British soldiers suffering from dietary deficiencies. It must not be compared with Bovril, a true extract of beef.

The Marmite Food Extract Company was founded in 1902 in Burton-upon-Trent, a great brewing town in the northern Midlands of England, using residue yeast from the town's various breweries (Bass, Marston etc) to make its product. The independent company, Marmite Ltd, ceased to exist in 1990 and Marmite is now owned by the multinational Unilever. However, the main factory is still in Burton-upon-Trent and in a wonderful piece of recycling, the breweries still pay Unilever (for deity's sake) to cart off their yeast residual!

The origin of its name is in the French and Basque cooking vessel known as a “marmite” - a Marmite bottle supposedly resembles the shape of a marmite and a marmite features on Marmite's label. It must also be noted that the Basques have a tuna dish called Marmite (presumably as it is cooked in a marmite),

It is extremely salty in taste. It is darker in colour than dark chocolate. It is a spreadable, unattractive goo. If you can imagine a glutinous soy sauce ...

For our US readers you will have to find a specialist foodstore to find this. For those in the ex-colonies, the original, derivatives and adaptations may exist and those further afield, I am sorry I cannot help you.

The Marmite website reflects their latest advertising campaign - “You love it or you hate it”. An amusing and clever ploy indeed – visit the website to see it in action, I neither love it nor hate it, but rather go through phases several years apart.

Currently, I am in a “I love Marmite” phase – with a two-year old jar of Marmite.

It is fortunate indeed that a jar of Marmite, despite the obligatory sell-by/use-by dates, will last for years. I would not be surprised if a perfect jar of Marmite was excavated from a WWI battlefield.

The Marmite FAQ is also a fascinating source of information.

Watch out for the next episode of The English Colonial Gentleman's Larder. I will wax lyrical upon ...

Microsoft bribes the NHS

Thanks to Dr Penna I learn that every NHS employee can purchase Microsoft Office 2007 for £ 17.00 for use in their own home ...

Dr Penna thinks he is onto a good thing. And Microsoft's NHS website has discounts on other MS products for NHS employees. All you have to have is an NHS email address (oh shurely I can hack that ,,,).

Let us look at this in more detail on the Microsoft-NHS website ...

Microsoft has a Software Licensing Enterprise Agreement with NHS England (with similar but separate agreements with NHS Scotland and NHS Wales). The current agreement runs until 2010 and covers a range of Windows software including the Vista operating system (both Business and Enterprise editions) and a range of Microsoft products including Office. It also includes Client Access Licenses (CAL) to Windows Server and SQL database software but not the server and database software itself.

What does a CAL mean? Well, no desktop workstation will have server or database software installed on it. However, a desktop workstation within the NHS will probably need to access a server for networking and an SQL database server (for Summary Care Records?). To access a server, the desktop workstation needs a CAL. Ok, so Microsoft's licensing model screws you twice ...

But the intimation here is that the NHS is using Windows servers (Microsoft server and database software licenses are sold under a separate agreement entitled the Select Licensing programme - whatever the fuck that is). For the storage of confidential patient data, the Summary Care Record, for NHS Choices “Choose and Book” etc etc.

Why didn't Connecting for Health opt for far more secure Unix servers and Linux desktops? Or even Unix servers with Windows desktops?

Given the government's recent record on the loss of confidential data on Joe and Jane's data, given what I have learned today of Microsoft's involvement, and what I already knew of its appalling security record, my confidence in the development of the NHS Connecting for Health project has lessened x-fold.

Afterwords:

1. FAQ: “What is the NHS paying for this agreement?”

Answer: “The NHS is paying a fixed amount per year. The number of devices each year increases to cover an expected growth in the number of users. Microsoft has provided a substantial discount to the NHS based on the volume of devices covered and length of the agreement.”

Does anyone know? Can anyone tell me how to access government contracts or do I have to write a Freedom of Information Act request?

2. Certain Department of Health, but not part of the NHS, institutions are included in the Enterprise Agreement.

3. fyi Dr Penna the software does not belong to you. At 65 years old you will be without a word-processor and email client. “... so should they leave the NHS then they are required as per the terms and conditions on the web site to uninstall and return it to their Trust.”

Baldy's Blog

My attention is drawn to this blog by Adrian Sudbury who has just made the difficult decision to stop treatment for leukaemia (two leukaemias in fact) after suffering his second relapse.

As you would expect from a journalist, it is extremely well-written. Heed his plea for bone marrow donors.

Update: As we are receiving so many hits on this post, our visitors may also be interested in these sites by Davo and Josie Grove who made the same decision and are no longer around. Both died last year.

The Executioner's Axe

... the hangman's noose, the fatal injection, the guillotine ... let's introduce the QALY.

Just as the Axe and the Noose and the Fatal Drug are not responsible for Death, nor is the Quality-Adjusted Life Year.

It is their use by humans. And I suspect, in the case of QALYs, the profession known as actuaries, and to be more precise, I suspect there are specialised medical actuaries. Have you ever heard of Actuary? I hadn't. This is the profession that calculates insurance risk.

Crude examples ... if your house is worth £500,000 but happens to be in a run-down inner city area, it is more likely to be the victim of an arson attack than if it was located in a leafy suburb and thus your house insurance is greater. But if your house in the run-down inner-city area is worth only £150,000 at the same risk, your house insurance will be less. And if you live in a hovel in the countryside, your house insurance will probably be minimal.

If you are 22 and buy a second-hand sports car, your car insurance will be higher than the 45 year old with 23 years of no-claims owning a BMW estate living in a leafy suburb because the 22 year-old is more likely to have a drink above limit, not be carting around his/her kids and will want to show off to his/her mate that it can do 0-100 mph in x seconds on an inner-city ringroad.

Logical of course and the actuaries have pored over all the statistics to make this an “exact” science.

I have no problem with Quality-Adjusted Life Years. Clearly, this treatment will add a QALY to my life – ok I'm not 100% (1) but I'm not 0% (dead) nor even negative (permanent vegetative on life support – surely a good statistical argument for turning the switch off).

The executioner's axe is the value a society attaches to a QALY. An ethical human will say there is no limit to the value of a (positive) QALY. But the insurance company or the state-run health service will put a value on it based on the cost of treatment and the resources available. And decides whether the cost of your QALY is good value for money.

It (the insurance company or the state-run health service) plays god.

“ ... being arbitrary, this threshold value is likely to vary in different societies and cultures, depending on how they themselves value healthcare.”

Hang on ... or how large their healthcare budget is.

The cost of treatment per three year-old with malaria is clearly less than the cost per three year-old with AIDS. But can we compare? I feel this is beyond comparison. Both will kill.

Value healthcare or value QALY ?

There are other objections to QALY, or rather, cost per QALY ... Central to Eisai's arguments (that we posted about here) was the “lack of sensitivity when comparing two treatments in the same therapy area or treatments for mild as opposed to severe forms of a disease. In other words, differences that may be important clinically or to the patient may not be shown by cost per QALY estimates.”

NICE would not reveal how it took this lack of sensitivity into account.

And I wonder whether the cost per QALY of an entire treatment is taken into the equation. The cost of an individual dose of IT Methotrexate versus Daunorubicin/MTX/Dexamethasone/Vincristine etc etc for 2.5 years.

It has been argued that a paediatric QALY should be evaluated differently from an adult QALY – clearly paediatric is different from geriatic. Am I to play God?

NICE has arbitrarily put a threshold of £20,000-£30,000 per QALY.

Links - What is a QALY?, Implementing QALYs

npower - update II

A telephone complaint was lodged with energywatch this morning and the following letter sent to npower.

npower
Executive Complaints Team
Npower,
Eighth Avenue,
Team Valley,
Gateshead
NE11 0SX

16/05/2008

FAO Complaints Department, npower

I am writing to you about a problem that I have experienced with your company.

Address that the complaint relates to:

[Deleted]

Account Number: n/a

On 3 May 2008 two npower salesmen made an unsolicited visit to my UK residence. I work overseas and my wife responded. My wife is an overseas national with little English. My wife gained the impression that the two npower salespersons were in fact represenatives of our current energy supplier Eon as they requested to see her Eon bills and she assumed they were checking our payments were uptodate. She was then asked to sign a document which later turned out to be a npower contract for the supply of hgas and electricity (no.17545281). The npower salesperson who signed the contract was Brian Hesketh (Sales Advisor PIN 0A64832, Sales Office PIN 08264). On the next working day (6 May) my brother telephoned npower. The call was received by a Customer Assistant named Lily. He was informed that the contract details had not yet been entered into npower's computer system and that he could not represent my wife despite her lack of English and that Language Line services were available. When he expressed his displeasure with this situation and the "hard-sell" techniques of the npower salespeople she became very aggressive. With the assistance of my brother my wife wrote a letter to npower rescinding the contract. This has subsequently been acknowledged.

In the light of Ofgem's current enquiry into npower's sales methods and recent press reports, including taking advantage of non-English speakers, we are somewhat alarmed the npower has failed to correct its sales methods in its regional offices. A telephone report of this incident was made to Energywatch on 16 May 2008.

I look forward to your earliest reply.

Yours faithfully,
Angus R. Gascoigne

Preferred method of contact: Email

English Mustard

Although we have a handful of Africa-ubiquitous Lebanese-run businesses here, they do not generally import middle-eastern foods. Eight months ago one of them, and my favourite, imported tins of ful mesdames and Houmous but never imported Tahini (sesame seend paste) and essential to make this chickpea (of which we have plenty) - based dish.

The tins of ful-mesdames and houmous soon ran out and I've been on at them ever since to stock them - and they promise me “... in the next container ... in a month's time”. And I know there will be no tahini!

So I bought two jars of tahini in the UK. One is already used up.

The other culinary delight I have brought from the England is Coleman's Mustard. What's so special about that my readers may ask? Well, it's Coleman's of Norwich Original English Mustard.

Huh?

Adding vinegar arrests the development of the seed's pungency and even more so when it is ground. The first successful attempt at drying and milling the oily mustard seeds was by a Mrs Clements of Tewkesbury in 1720 who produced a mustard powder with local fame to be reconstituted with water (or, I suppose vinegar – but this was certainly too expensive for your common-folk in a non-wine producing country at that time). According to Alan Davidson, Tewkesbury mustard is stilll famous.

In 1804 Mr Joseph Coleman produced the first nationally available mustard-powder mixed with turmeric for colour and wheat-flour for texture.

European mustards almost always arrest the chemical reaction with vinegar as soon as harvesting has taken place and hence your French or German mustard will be milder, use whole rather than ground seeds and be vingarised.

So that why is English mustard is special ... next episode, Marmite, to complete our Colonial Officer's stores.

NICE Procedures

I have explained before that the UK's National Institute of Health and Clinical Excellence (NICE) is not responsible for evaluating the clinical efficacy and subsequent use of a particular drug, but rather evaluates the economic benefits, or not. of recommending whether such a drug or procedure should be provided on our National Health Service. Woe-be-tide the NHS trust that doesn't follow a positive guideline. However, even though clinicians are allowed to use a drug that has been clinically approved but not NICE approved, the NHS Trust management teams are not happy to do this as they haven't budgeted for it.

There have been various cases recently in the news where people with terminal illnesses have taken their local NHS trusts to court to receive clinician-recommended but not NICE-recommended medications – it seems the patients have won as the NICE guidelines are non-statutory.

Dr Crippen pointed me to Lake Cocytus' post about a palliative drug in the relief of Alzheimer's Disease called donepezil produced by the BigPharma Eisai Ltd. Lake Cocytus then pointed me to the official transcript of the appeal of appeal courts.

It seems every fuckin' newspaper reported the judgement differently ... it seems the media interpreted the judgement as about this particular treatment. Some said it was a victory for Alzheimer's patients, some said it was a victory for NICE.

It wasn't about the drug. It wasn't about Alzheimer's. It was about NICE.

Before I go into the details of this particular case, I should explain a little of what I have learned of NICE's evaluation process, of its guidelines for the use of drugs and treatments in the NHS.

In the original appeal of this case it was established that “NICE generally seeks to ascertain the incremental cost per quality adjusted life year (or 'cost per QALY') of using a particular health technology”. What the definition of a QALY is I don't know ... hmm I'll have to look this up on NICE's website.

“The general threshold for an acceptable cost per QALY is approximateley £20,000 per QALY ... Above approximateley £30,000 per QALY, technologies are not normally recommended ... Between £20,000 and £30,000 per QALY, NICE will consider whether there are special considerations which justify recommending the technology, such as its innovative nature or the particular needs of the relevant patient group.”

To model the cost-effectiveness of a drug NICE uses a piece of software developed in the USA known as the AHEAD model, then adapted by the Southampton Health Technology Assessment Centre (SHTAC) to which SHTAC owns intellectual property rights.

During the lengthy process of revisions and appeals NICE will only provide the manufacturer or other interested parties with a read-only version of their economic model whilst an appellant must provide a fully executable version of any alternative economic model they have themselves used.

This particular case brought by the manufacturer, Eisai Ltd, involved a revision of NICE guidelines of Alzheimer Disease drug donepezil restricting its use to a narrower group of Alzhimer patients. NICE, using its own economic model, did manage to bring down the cost per QALY significantly but nowhere enough to meet its own guidelines. So Eisai went to the courts.

Eisai was not happy with applying the normal QALY model to Alzeimer's. And I do not have the clinical knowledge to argue that. However, that was not the basis of their appeal.

Eisai basically contended that NICE was guilty of unfair “trading” practices by only providing appellants with a read-only copy of the model in which the reliability of the model could not be tested by running sensitivity analyses, whilst appellants had to provide NICE with fully executable versions of their own alternative models.

The case went to a lower appeal which Eisai lost and then a higher appeal which Eisai has won.

It wasn't about Alzeimer's. It wasn't about donepezil. To the extent the drug still may well not be approved even when NICE produce the appellants with an executable economic model ... and I guess it will have to now renegotiate its agreement with SHTAC.

It is about the openness of NICE evaluation procedures. It is about copyright and industry confidentiality. NICE arguments centered on the contractural confidentiality agreements forced on it by SHTAC. A NICE witness even suggested they could reverse-engineer the software !

However, intellectual property rights and copyright were hardly mentioned, as the case was brought by BigPharma who are interested in their own intellectual property and copyright rights

Bloody hell ... are the Times, Daily Telegraph and Guardian legal and medical correspondents such fuckwits about medico-legal judgements? Did they irresponsibly scan this in 5 minutes and write a report when I took four hours to produce these shallow comments ?

Some links (that I am not endorsing) about the NHS withholding treatments here and here.

Update: The original SHTAC study can be found here.

npower - update

From an email from my brother:

"Better you do complaint as you can translate the story from Nanda more accurately than me. The comment appended to the Times article is familiar - I know the salesman had Nanda show him the bills.

You should also email a complaint to npower as the first thing ofgem will say is have you complained to npower.

So details as follows:

Contract number: 17545281

Date of contract 3 May 2008

Gas and electricity in single contract - electric is Npower Northern Supply Limited, gas is Npower Northern Limited.

Contract rescinded by attached letter. Posted registered mail 10 May - registered mail ref DW 5254 6114 3GB. No confirmation of cancellation yet.

From Royal Mail website tonight:

Your item with reference DW525461143GB was delivered from our OLDBURY Delivery Office on 13/05/08 .

Salesman Brian Hesketh - Sales Adviser PIN 0A64834 Sales Office PIN 08264

Worth also saying that I tried to cancel by telephone on the first working day - 6 May. Their customer assistant Lily would not allow me to cancel because they did not have the information on their system and that the earliest it would be worth my calling back was the Thursday or Friday of that week. When I then said I wanted to make a complaint she said I couldn't do that until the same time. When she gathered the contract was not in my name she said I couldn't cancel it but my sister in law, despite speaking no English (the point I was making), would have to cancel it. She assured me that they had access to languageline. When I expressed my displeasure at the situation saying I thought it was a pretty poor show that this salesman should "force" someone who doesn't speak English and had made that clear to him, to sign a contract, she became very aggressive with me. Eventually I as good as hung up on her!

Subsequently I was advised by several people to write rather than phone and send recorded.

Pete"

As the cancellation letter only arrived at npower yesterday, I will wait a bit before making a complaint to see if they reply.

npower

The UK energy provider npower is now under investigation by the regulatory authority Ofgem into dodgy sales practices.

"The alleged tactics included exploiting customers with a poor command of English, making people sign forms without revealing that they were contracts and lying about charges."

Interestingly enough Nanda received a knock on the door some ten days ago from two npower salespeople and was persuaded to sign a contract without, due to her poor command of English, knowing what she was signing. When I was told, I immediately contacted my brother who wrote a letter rescinding the contract within the 14 day grace period allowed.

If npower is found guilty, "Ofgem can impose a maximum fine of 10 per cent of RWE's global turnover, which was €42 billion (£33billion) in 2005. "

We will, of course, be making a complaint via the consumer organisation energywatch (can be done online) which will hopefully feed into the enquiry.

Full story here.

Forked Tongues

I apologise dear readers this is not Lord Darzi's final report ... it is his interim interim report.

“I will publish my final report next month”.

Whereby he delegates responsibility to the regional Strategic Health Authorities to come up with a strategy for change within a month (clearly long enough to consult Joe and Jane Public) before he publishes his Final Report.

It should keep the NHS Management busy – for a month.

Transport

Tom Reynolds and his like (ambulance “drivers” and paramedics) are always justifiably moaning about call-outs to non-emergency cases.

The Public is not calling our 24 hour NHS Direct service as they will not get to talk to a doctor. They will not call their GP as they will receive a pre-recorded reply to call NHS Direct or, if an emergency, an ambulance to A & E.

So they dial 999 and an ambulance is dispatched to dispatch a paracetamol.

The GPs are fed up. The Ambulance Crews are fed up. The A & E doctors and nurses are fed up. Many feel (GPs, A & E doctors and nurses, ambulance crews, punters etc) that the GPs provided better Out of Hours (OOH) service before the new GP contract in 2004 which saw the PCTs assume direct responsibility for OOH service. The PCTs were not provided with extra money for OOH (or if they were, spent it on something else), did not contract the GPs to provide it and thought they could scrimp and save (can someone inform me?) by getting their A & E to take up the slack.

So Dear Tom you get called out to serve up a Paracetamol ...

And, on top of this, we have the NHS Healthcare Travel Costs Scheme (HTCS - a reimbursement scheme, most recent guidelines here) ... except it does not cover irregular visits to a GP nor A & E ... I won't be reimbursed for a 02:30 trip to A & E. So Tom, you are called at 2:30 am to administer a Paracetamol when previously my GP would rouse himself from his slumbers, reassure me over the phone that it could wait until morning, to take a paracetamol and both of us would go back to sleep ... or I would rush down to A & E in an ambulance as it was a real emergency.

“With the introduction of Free Choice, patients may be referred to a wider variety of healthcare providers. However, they will expect HTCS be operated consistently between providers and across different areas."

Now that we have NHS Free Choice Ican take a taxi from John O'Groats to Land End at NHS expense.

Take it Tom – much of your job is now a glorified taxi service.

A Thousand Splendid Suns

Is the second novel published by a major publishng house by the expatriate Afghan author Khaled Hossein whose first major published novel, “The Kite Runner”, has been made into a movie. As the novel/film has a homosexual rape scene, Afghan reaction has generally not been good.

I am not a literary critic. “The Kite Runner “ was melancholy, sometimes hurt and was about men. “A Thousand Splendid Suns” is about women and a country, is melancholy and pain – an extreme pain that, even with Kezia's leukaemia, the poverty of this country, is far more than mine and cannot be compared.

Having bought this at Heathrow on my way back I have been reading this in small doses for of it I can only take small doses.

It gives me nightmares of where we could be ...

NHS Overhaul

Talking about fuckwits ... Lord Darzi's final report (actually two documents - here and here - all 36 pages) is out. You'll have to wait until Monday for my opinion but for the time being the Guardian will have to suffice.

Fuckwits

Thanks to Dr Rant - a Tribute to the Terminally Clueless.

NICE

As previously noted, NICE, the National Institute for Health and Clinical Excellence, does not furnish clinical approval of drugs. However, it does advise on the cost-effectiveness of a particular course of treatment or medication. As Dr Crippen notes NICE advice is a guideline and doctors are not obliged to follow it. However, PCTs all too often take NICE guidelines as law resulting in cases where patients take their PCT to court to gain access to a life-saving or extending treatment.

Dr Crippen points me to this and this discussing how NICE makes its decisions and how BigPharma influences it.

Our Bathroom

For Rob.

Maintenance Cycle 5

Starts today with a Vincristine injection and then the dreaded D for the rest of the week. One more maintenance cycle and six months to go.

I called on my Anglo-Peruvian friend Talia down in the city on Sunday to find her being visited by a silly French woman who runs a local business. When the subject turned to Kezia, she started twittering about alternative treatment, and my hackles began to rise. She insisted. Even after all her years here she hardly speaks our local language, doesn't speak English and, although I have some French, I couldn't get angry enough in French to tell her what bullshit she was spouting and ended up asking Talia to translate – which, given my increasing annoyance, she did diplomatically.

I couldn' t take any more and abruptly left.

Link, Link, Link, Link

Culinary Delights

Over a week now since I left Jaime, Kezia and Nanda and made my way back here. Fewer culinary delights this time – the day we were going to Bury market for a Black Pudding sandwich was being blown by a bitterly cold wind and we turned around and came home.

Margaret took us out to Hebden Bridge where we had a marvellous sit-down fish 'n chip lunch (actually, Margaret and I had mussels and chips). Being up-market Hebden Bridge it was a fish n' chip restaurant as opposed to a fish n' chip shop. But the chips were chunky and irregular and cooked in lard or dripping so quite delicious.

We went to Manchester twice.

The central market has been in the Arndale Centre (a ubiquitous UK indoor shopping precinct to our non-UK readers) for many years. Previously the fishmarket consisted of ten or so stalls. A revamp and extension of the Arndale Centre and now there are just two fish stalls, one greengrocers and one butchers. Most of the space previously taken by food stalls has been taken over by up-market multicultural (Italian, Chinese, Greek, Brazilian, Real Ale etc) take-aways and delicatessens, often combined. I will say we enjoyed the expensive Italian deli/cafe where Jaime and Kezia ate prosciutto and fancy Itakian cheese sandwiches whilst I quaffed a glass of cheap Itakian wine and I was tempted to buy stuffed pig trotters! In fact, the whole of the centre of Manchester has been dumbed-down. The underground flea-market with its antique and stamp and coin stalls has now closed, the old Corn Market has lost all its alternative stalls to be replaced by posh shops and seemingly there are now only national shop chains. Result of a NuLabour council?

After Nanda bought plantains at the one greengrocer, we then descended on the two fishmongers. On the first visit Nanda came away with whiting, salmon and “salt fish” (in fact, it was bacalhau/bacalao/merou – salt cod – so on our second visit I suggested to the fishmonger he label it as such as bog-standard Caribbean salt/stock-fish is certainly not cod!). I came away with sprats and Queen scallops. Whilst Nanda prepared plantain and salt cod (memories of home) for herself, Jaime and Kezia, I fried my sprats in a seasoned flour coating to be accompanied by brown bread and butter.

On our second visit Nanda was not impressed by the available fish but bought some Redfish. I was most impressed by the presence of live (rare) and very expensive razor clams and what-was-labelled as “surf clams”. So I bought just three of them and and a bunch of “surf-clams”, the latter I cannot find in Alan Davidson's North Atlantic Seafood. Without Alan Davidson's North Atlantic Seafood on-hand I really didn't know what to do with these razor shells. But another less eloquent cookery book had a recipe for a clam chowder (at which I think my north American readers might pooh-pooh).

The first time I have cooked a chowder. Clams, razor-shells, potatoes, onions, milk and single-cream proved a marvellous combination!

HPV Inequalities

I have previously posted on the inequalities within the UK National Health Service roll-outs of the vaccine for Human Papillium Virus (HPV). That NHS Scotland has rolled it out to all teenage females whilst NHS England has been dragging its feet ... seemingly commentators suggest for politico-economic reasons.

Supposed concerns among parents are that teenage girls will become more promiscuous as they become protected against cervical cancer.

In England a trial of take-up of the HPV vaccination in 26 schools in Greater Manchester found that only 80% of girls of the eligible age group (needing parental consent) received the vaccine.

The percentage take-up was far lower amongst ethnic minority and/or low-income students. This can, of course, be for several reasons ...

However, of parents who stated their reasons for refusing consent lack of information about the vaccine and its long term safety were foremost and changes in sexual behaviour least. It is, of course, most probable that ethnic minority and/or low-income parents would be more unlikely to give reasons for their refusal to give consent. It would seem that the NHS needs to provide more information.

There are compelling arguments that vaccinating boys against HPV is equally important in combatting the spread of HPV to girls and the subsequent development of cervical cancer – after all, it does take two to tango. A trial of one of the vaccines (there are two Merck's Gardasil and GlaxoSmithKline's Cervarix) showed it to be equally effective amongst boys as girls.

In further developments Doctor David reports (here and here) the increase in oral cancer caused by HPV – which, clearly, affects males as well as females with the rate of oral cancer amongst young men increasing at such a rate that it may soon, in the US, surpass the number of cervical cancer cases. As smoking decreases HPV is becoming a more important cause of oral cancers than coffin nails. I am told by our GP that HPV can also be responsible for penile and rectal cancers.

So the NHS HPV vaccination programme neglects:

a) the English

b) ethnic minorities

c) males

d) those who are into oral sex whether homo – or heterosexual

e) those who are into anal sex whether homo – or heterosexual (although for the life of me I cannot understand why anyone would have unprotected anal sex these days.)

Of course, we'll have to wait for the National Institute for Health and Clinical Excellence to conduct a cost-benefit analysis but if you're black, male, homosexual or just plain sexually diverse ... don't hold on to the edge of your chair ...

Yawn.

Update: NHS management wrote a letter on 2 May to all PCTs, SHAs etc concerning the forthcoming HPV vaccination programme in England. We are informed that supportying materials and information are available here. As of writing and in typical NHS IT style the link is non-existant.

The Equality Impact Assment report is here.

Happy Birthday II

In our first birthday shot Kezia was looking a bit glum, so here are a couple of happier ones.