Medical Update Illustrated

Back in Africa after two weeks with Kezia, Jaime and Nanda in the UK. I don’t know where to call home anymore – where our house is or where my family is. Another post.

During the two weeks in Rochdale, I went to the RMCH with Kezia twice. Her counts were up and so she was back on the IV-MTX and 6-MP and on Wednesday this week was back on the monthly 5 days of the dreaded Dexamethasone.

Below is a small illustrated narrative of a routine visit to the hospital, an amalgamation of the two visits.

First, let’s have a photo of Tom, the volunteer ambulance driver, who picks up in Rochdale and carts us over to the RMCH and back. The NHS would be poorer in all senses without people such as him.

Tom gave me some interesting and confusing “insights” into the inner-workings of the NHS – he is paid by one Trust, his ambulance control is another Trust, most of his work is carting children to and from the RMCH, another Trust, from other Trusts. That is just “managing” a volunteer!

He’s also doubtful about the new Manchester children’s hospital in central Manchester – what it will mean to transportation times. Instead of shooting around ring-roads and darting into a suburban site, he will have to deal with inner city congestion.

So when Kezia arrives, first stop is the pathology lab to have her finger pricked (i.e. a blood sample taken). The waiting room is a play room:

And good as gold she has her finger pricked:

… and gets five stickers for the effort.

Off we go to the clinic play room where we can indulge in a whole range of activities, here painting:

Up to clinic. First a physical exam – chest, mouth, lymph nodes, spleen etc.

Then this week we have a Vincristine injection via a Cannula (a needle into the vein, attached to a tube, into which the syringe fits). Kezia doesn’t complain at all, and the doctor and nurse say she is always a pleasure to treat given that it took three adults to hold the last child down and they are absolutely knackered.

Nanda admits that she has “bribed” Kezia – you”ll get a present if you don’t cry!

So to waiting in the corridor for Pharmacy to make up her drugs …

Kezia's Quilt

... arrived today ! It's been played hopscotch on, it's been used as a wrap and a shawl ...


... and as the first Dexamethasone of the month kicked in, it went to a more tradtional use.



Many many thanks from all of us to Joyce in Canada, Sandra and Marcie in the US, Lily and Dianne in Australia, Nicolette in Holland, Simonetta and Fulvia in Italy, Anne in the Uk and above all Clare of Quilts 4 Leukaemia!

What's in a name?

The Chairman of the Central Manchester and Manchester Children's University NHS Trust thinks that by giving us, the punters, a choice in the name of the new Manchester children's hospital, we will feel a sense of "ownership". He added "The new hospital will be at the heart of the community in Greater Manchester and the north west - it will belong to the people who live here and we want them to feel a sense of pride in it".

So the Choices are:

a) Royal Manchester Children's Hospital

b) Manchester Children's Hospital

c) Other - please suggest.

Option a) will really maintain the status quo, Option b) is really for vehement anti-monarchists, Option c) I cannot see what others have suggested.

And given that anyone, in the whole wide world, can vote on the new name at the new hospital's website, then I would encourage my international readership to vote so the decision is truly local!

Choices ?

Pathetic.

Choices

Just as the NHS is now offering us Choices, it seems the Department for Children, Schools and Families is also offering us choices.

We have to make a choice as to where we want Kezia to go to infants' school in September 2008. And we are allowed a 1st, 2nd and 3rd choice.

So we are faced, for the first time, with Choice. And so I consider the criteria for our choice. Centre of Excellence, good neighbourhood etc etc ?

And what is our prime priority, for better or worse?

Location. We want Kezia to go to the local school. In the local community. Yes, we're lucky it also seems to be excellent (Jaime goes there, and Kezia is in nursery there) but, in our heads, the most important criterion is proximity.

Which is why closing local hospitals and supposedly offering us more choice is not working. The many campaigns, throughout the country against closures or reductions of local hospital services demonstrate what us local punters want - our first choice is local.

So why not just send Kezia to the local school without me having to ask the local school's head to advise me on my second and third choices - Nanda doesn' even understand why we have to put down "choices" when enrollment in the local school is automatic back home in Africa.

Kezia joins the Taliban

First photo ... more to follow.

Life goes on, doesn' it ?

... you've just got to get on with it.

I met A. and her daughter H. (with ALL) attending Borchardt Clinic yesterday when I went with Kezia yesterday. I asked about husband and father S. who I knew had terminal cancer, and learned he died just under two months ago. A. and H. were superficially cheerful (and hence the title of this post).

I phoned A. last night and both A. and I ended up in tears ... the worst time for A. is when she is on her own. S. used to work shifts and would often be at home during the day when the kids were at school. For me also, the worst time is at the weekends when I am alone.

Interestly, A. told me that S.'s treatment could not compare with the treatment our daughters are receiving at the Royal Manchester Children's Hospital.

I'm back, Dr Crippen is back

I arrived "home" at 7 o'clock on Sunday morning ... and have been happy to find the NHS Blog Doctor, Dr Crippen, is back from his summer recess.

Busy busy busy since arriving ... Jaime's head teacher Monday morning, Jaime's teacher Tuesday afternoon, taking my laptop for repair, Kezia's hospital visit yesterday (her counts are back up so back on 6-MP and IV MTX), John our consultant, Teresa our social worker, the bank, health worker today ... etc etc.

I'm sure I won't get much time to blog this week and next but will try to update occasionally.

Healthcare News Today

The Health Commission, the UK’s audit body for our health services, has just published its report 90 deaths from C. difficle infections at x hospital in the Maidstone and Tunbridge Wells Primary Care Trust (PCT).

The report cites filthy wards where, due to nursing shortages, patients were left to swim in their own urine and faeces in their own beds and the nurses were so busy cleaning up, they did not have time to wash their hands properly.

The report states that the PCT was too busy and preoccupied with cutting its deficit to meet government targets than worry about adequate clinical care. And a spokesperson for the PCT said it was so busy trying to fulfil the bureaucracy to become a Foundation Trust so it could sell off the family silver in order to cut its deficit that it didn’t have time to run the hospitals.

Alan, our Health Secretary, is appalled. The police have even been called in to investigate the hospital and the PCT.

I would ask the police to investigate Patricia Hewitt, our previous Health Secretary, who forced the PCTs to cut their deficits.

No mention of shirt sleeves.

But in revenge we have a NCEPOD report (spun by the BBC here) that “junior” doctors (a reminder – you are junior until you become a consultant) in Accident and Emergency departments are failing us. I assume this is part of the campaign to close local A & E departments.

I wonder if our local A & E departments on a Sunday morning (let alone any other day) are understaffed and overworked because the government, when it took away out-of-hours practice away from GPs, did not open any out-of-hours walk-in supermarket centres or polyclinics, that the PCT is trying to cut its deficit and that the DoH fucked up MTAS/MMC.

Gordon, Alan, and Ara – Kezia, myself and Nanda are an ignorant patient and ignorant carers. We really don’t know anything about running the NHS. We really don’t know what we want (OOH, polyclinics, less dark-skinned doctors etc etc). Please tell us and then we’ll be able to give the DoH informed opinions during public consultations.

Dr Rant's take here.

Medical Update

Kezia’s neutrophil count on Tuesday this week was 0.21 x 10 ⁹/litre so she is off the weekly oral Methotrexate (MTX) and daily Mercapturine (6-MP). This is probably due to the last batch of Dexamethasone. Next appointment is next week – the rhythm seems to be that if the neutrophil count is too low to take the MTX and 6-MP, then the next appointment is after a week to see if she can resume them. But if her counts are good, then she’ll have a two week respite until the next appointment.

She continues to do well and is very happy at school. She was envious of Jaime going to school in the last academic year when she did not, she was envious that Jaime started this school year a week before herself. And now I think she is envious that he gets to do a full-day and she only gets a half-day.

She has been a bit dissatisfied with the culinary arrangements at school. Cultural differences. Here we make one big pot per day that serves from lunch today until breakfast tomorrow. The number of people (principally children – even as a defacto bachelor I am providing lunch to two adults and two children plus me equals five), and our cooking technology - primarily one-pot cooking over a wood or charcoal fire, or a kerosene (paraffin for my UK readers) stove, means Kezia is used to a little rice and beans as Elevenses – some salad, an apple, a bottle of milk have led to her complaining she doesn’t get enough food! (That is not to say we don’t have a five-plate electric stove with oven in the UK and a five-burner gas stove with oven here – just a commentary on culinary culture).

And she must be right pissed-off that the Dexamethasone makes her incapable of school one week a month.

On Saturday I arrive back in the UK, on Sunday early, “home”. I wish I could delete the days between now and Saturday dawn when I leave, or at least fast-forward – we have not been together since April and all of us have increasingly been missing each other!

Criminal Defence Services Direct

I am not kidding!

Although I am now developing a concern about the independence of the media regarding our government’s policies towards our socialised and wonderful health service, I notice this worrying report by a (perhaps courageous) BBC journalist on, or relegated to, the bottom of the BBC’s UK news webpage.

Apparently, from February next year in the UK, those arrested for “minor” offences, will no longer have the legal right to the physical presence of a lawyer or solicitor, but will instead be allowed to phone a “call-centre” run by a private company staffed by non-legally trained ex-police officers!

You’re worried by NHS Direct?

Update: Cynically I note the report has disappeared from the UK news page (but our link still works). And there is still a slightly different report on CDS Direct on the Radio 4 Law in Action website.

The Darzi Report, Government Spin and the Media

Lord Darzi’s interim report for the government’s consultation exercise “our NHS, our Future” has been published – a week earlier than scheduled. Its publication was cynically criticised by the political opposition as a measure taken prior to the Prime Minister’s weekend non-decision to not call a non-snap election (and yes, you can call my triple negatives into doubt!). They really missed the point.

I am somewhat surprised that Drs Rant and Crippen have not provided us more of their feelings about this report … maybe they are still fuming, maybe they are lost for words, maybe they are far too busy (on the golf course clearly) …

I will not attempt a detailed analysis of Lord Darzi’s informed report, the result of numerous public consultation meetings to which the Great British (and Northern Irish ?) public have had to be bribed to attend. Surely, Drs Rant and Crippen and many other heathcare professionals are far more qualified than I …

However, and subjectively, without a detailed media analysis, I observe that many of the issues on which our National Health Service needs to improve mentioned in Lord Darzi’s report, have been the subject of Department of Health press releases and thus media reports (if the BBC is anything to go by) over the last few months – mixed-sex wards, the supposedly hospital-transmitted infections of MRSA and C. difficile for which the DoH new and seemingly unproven “control” regulations were issued before the publication of Lord Darzi’s report, etc etc.

Last week our local hospital’s maternity unit, a modern building, was temporarily closed due to a cockroach infestation. Our daughter, receiving treatment for a immuno-depressed disease, is in a hospital constructed before Florence Nightingale, of which there are concerns regarding infection, of which there are concerns concerning cockroaches but maintains itself impeccable in the face of these challenges. The public sector trade union Unison claims 85 percent of NHS cleaning staff are overworked and underpaid.

Are such statistics in the Darzi report?

But perhaps the government’s biggest spin has been against General Practitioners’ (lack of) Out-of-Hours (OOH) service … regardless of the fact that recent DoH-commissioned surveys show the vast majority of the Great UK Public are satisfied with their GP services and that the government committed itself to provide OOH.

I am concerned that all this government spin has been to influence the Great UK Public, bribed to attend “our NHS, our Future” consultations who then regurgitate the government spin to Lord Darzi and his team and thus to the DoH and the government, who then make it policy!

And all over the country we are up-in-arms about the closure of our local services! But Gordon Brown and Alan Johnson won’t listen! Quality of Life is as important as Quantity of Life! Go read about Josie Grove and Davo. I hope you guys (and Patsy) get fuckin’ cancer … but of course your families all have flash cars to flash down to the nearest Centre of Excellence and can stay in a nice nearby hotel.

This week the government/DoH has finally but quietly admitted the failure of the Modernising Medical Careers-MTAS scheme by announcing new procedures for the recruitment/employment of trainee doctors, leaving the senior doctors, rather than the managers, to evaluate the junior doctors … and most importantly it will not involve a national online IT system that does not work.

But even this has a sting in its tail as the DoH announces a review of the employment of non-EU doctors, pandering to their own spin at the beginning of August which was designed to pander to the racist and bigoted opinion of some elements of the Great UK Public.

Yours disgusted.

Random Acts of Reality

Tom Reynolds, the famous author and London ambulance paramedic at Random Acts of Reality, appeared at the Cheltenham Literature Festival this weekend. In an associated post he cites our own humble contribution to the medical blogosphere as his favourite patient blog. This has resulted in well over a hundred hits on both Sunday and Monday and they continue to fly in thick and fast today. We are much honoured by a mention from such an illustrious member of the blogospere.

Bush Meat

Following on from our previous post, some of our readers may be concerned about our penchant for eating wild and possibly endangered animals.

Do not be concerned.

Unlike on the continent where much of the bushmeat derives from endangered species, here we eat common and/or introduced species. The aforementioned fruit bat (Eidolon helvum) is continent-wide. Wild pig, mona monkeys, civet cats were all introduced to our islands.

The only animals that are endangered, and which I will not eat, are the turtles that lay their eggs on our beaches.

On a culinary note I highly recommend fruit bat and monkey. Their natural diets are … fruits. Thus the meat is rich and sweet. Fruit bat is a little small, but if you can cope with a quail or pigeon, you can cope with a bat. Monkey, unless previously butchered, has a somewhat hominoid appearance that can be somewhat off-puttin

Fruit Bat Pizza

Today was made and consumed the world’s very first Fruit Bat Pizza!

That’s right, dear readers, a pizza with a topping of your usual ingredients (a tomato sauce, anchovies, olives etc) … and fruit bat meat!

Put me in the Guinness Book of Records! Put me in the history books! Pizza Hut – I patent it!

A Gripe about GPs

Sorry Drs Rant and Crippen … this is really not about GPs in general and it’s not a "formal" complaint – it is about a silly little mistake by our GP practice which was resolved easily and would probably have been far more difficult to resolve at a polyclinic without an IT Spine that works.

When our daughter was registered with the NHS and a local GP practice, I am sure her date of birth was a component of the required information. A letter from our consultant at the Royal Manchester Children’s Hospital to the Senior House Officer at our local hospital, who made the initial diagnosis of leukaemia, was copied to our GP practice. It clearly stated Kezia’s age at the time and that she would need flu jabs each autumn.

She didn’t have one last autumn and I wondered why, thinking the RMCH would organise it as they had advised us that they should take care of all Kezia’s healthcare needs. And, surely, that would be the most logical way of doing it.

But, no, GPs are responsible for flu jabs to all vulnerable groups, including children with leukaemia over the age of two years. And they receive income for each jab given. And, with this motivation, they should advise by mail each member of a vulnerable group about the availability of the vaccine and offer an appointment (fuck it they offered Nanda a cervical smear within a month of registration).

Kezia is now 3 years and 8 months. Our GP practice has on their records that she is 18 months. So they were not going to send a letter! I guess they assumed her age was 0 years when she registered. Now we have an appointment for 31 October thanks to me enquiring of our consultant and my brother having a long telephone call with the GP practice. But Nanda has to produce an official document showing her age. A very very obese 18 months!? Swollen-up by two years on glucortisoids? Hormonal gigantism? Can our nurse practitioners (and doctors – she will surely not see one) no longer estimate the age of a child?

Duh!

Anyway, John reckons the vaccine won’t really work as her immune system is too depressed to react to it – so where are the clinical trials, guidelines and protocols for giving flu vaccines (or any vaccine for that matter) to a child with a low White Blood Count?

Back to Darci’s interim report … yawn.

NCRI Cancer Conference

Sunday through Wednesday this week has seen the National Cancer Research Institute's annual cancer conference. I was only able to find one presentation specifically about Acute Lymphoblastic Leukaemia but there's a whole host of other interesting reads ranging from heavy science to care and survivorship.

Aphorisms IV

A new header aphorism today by the American writer Hilda Doolittle.

Previous header aphorisms:

“We call the aspect of life beautiful, and that of death ugly. But more beautiful still is that which causes one to live to the full right up to the moment of death.”

Querelle of Brest: Jean Genet .

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

Rite of Spring: Djuna Barnes

“An opinion is a limit to understanding”.

Natalie Barnie

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

Andy at Ciskzereda Musings