The Health Risks of the Internet

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

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

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

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

Medical Update

Kezia had her routine check-up today. Didn't see our consultant but neutrophils at 2.85 which is acceptable. Down from last time.

Seemingly, the next appointment will be at the new RMCH in the centre of Manchester - she said Pendlebury was already showing signs of packing out.

John

John, our consultant, and Kezia finally get to have their photo taken together.

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.

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.

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?

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 …

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.

I'm a smoker

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

… but I am a smoker.

A pack a day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hospital Food

Dontcha just love it?

A lighter post - TV chef Loyd Grossman, who for five years headed the NHS's Better Food in Hospital's programme to improve the quality and nutritional value of food provided in hospitals, has complained about the government's lack of commitment to the project.

The Better Hospital Food website is certainly appetising. Baked Salmon with Lemon, Garlic and Parsley Crust, Grilled mackerel with Tomato, Ginger and Thyme Sauce, Chicken Kofta Curry, Ratatouille Tart with Mozarella, Pasta, Ham and White Bean Bake - you can even download the recipes to try out at home.

However, I couldn't find any Fish and Chips with Baked Beans. In fact, no mention of children's recipes at all. I seem to recall that there has been a similar move in the UK to make school dinners more nutritional with limited success given children's preferences for junk food.

And given that Kezia developed food obsessions due to the chemotherapy for such things as chips, roast chicken crisps etc.

In fact the catering facilities at RMCH weren't bad. The hospital cafeteria had a varied menu of hot dishes and a variety of cold snacks. Ok after four weeks being resident in the hospital I could notice the same dishes being repeated over. On the ward resident parents had access to a kitchen with cooker, microwave, refridgertaor and freezer at all times except when the childrens' food was being served and in the parents' accommodation attached to the ward there was a similarly equipped kitchen. Tea and coffee, yoghurts, biscuits etc were available in the ward kitchen.

Update: Do see Lucia's comment - yes, young adult dietary requirements or even, let us say, tastes are somewhat different to those of small children.

Royal Manchester Children's Hospital

I see that the Paediatric Oncology Unit at the Royal Manchester Children's Hospital now has a webpage here. And as all the staff are listed, I'll 'fess up to who our consultant and social worker are - John Grainger and Theresa Romagnuolo.

The page is part of a larger cancer information site run by the Central Manchester and Manchester Children's Hospitals Trust.

Something seems to have gone wrong today

Kezia and Nanda are still stuck in the hospital. Kezia hasn't been seen by a doctor since Sunday but seemingly the chicken pox is cured. Numerous calls to Nanda, the Borchardt Clinic and my brother. The Borchardt Clinic told me they would get a doctor to her twice, then they couldn't hear me. Nanda has been up to see them - same message. Then I had my brother ring and he spoke to both the Clinic and Heywood Ward where they are "interned". He got the same message.

Kafka-esque - you would have thought with bed shortages they would be keen to get rid of her!

Anyway, my brother is picking Jaime up from school and then going to the hospital. Hopefully, they will be ready for discharge. Update tomorrow.

Update: They finally got out of hospital around 18:00.

Patientline III

Lucia tries to draw me into the Patientline debate - I refuse to be drawn!

However, I will make some observations on the Borchardt Ward at the Royal Manchester Children's Hospital. Each bed has a Patientline terminal and yes, televison for children is free. However, each bed also has a regular donated televison set (with headphones).

Concerning telephone sets there are two regular payphones, one at the entrance to the ward and one in the middle of the ward that accepts both incoming and outgoing calls. Given a relatively relaxed mobile phone policy as well and the fact that the younger children have little need for phone services, then it is little surprise that Patientline will not be making a profit on Borchardt Ward, and I suspect throughout the RMCH.

Royal Manchester Children's Hospital #1

I'll say #1 as I'm sure I'll have more to say about this marvelous institution another day. I'll get onto the rest of our personal narrative later, and also details of treatment.

The Royal Manchester Children's Hospital (RMCH) is divided into two branches – Pendlebury and Booth Hall. Don't know the latter but the former dates back to 1873. (There's a plan design on the wall of the cafeteria as well as a letter of praise from Florence Nightingale). Clearly, it's been added onto as time has gone by – but it remains a warm Victorian masterpiece. (Probably would be great for urban adventurers – but maybe you should wait until it closes). I wish I knew who the architect was.

Unfortunately, it comes with all the problems of ageing Victorian buildings – vermin. Manchester now plans a new mega-complex hospital which will replace the two children's hospitals and much more. No more comment right now as I don't know much more about it. But it seems a shame.

It's a children's hospital – half creche/kindergarten/nursery school (whatever you call it)/half hospital. The medical equipment seems to get hidden behind all the toys, paintings, balloons, posters, awards for being a brave patient, TVs, Playstations, pedal-cars, dolls, stuffed animals etc etc. You name it – if you're child wasn't sick, it would be their paradise.

Older children must feel out of place. The hospital accepts upto 16^th birthday. The hospital recognises that older children, or I should say young adults, have different needs and get their own room.(H. who you will meet later on – filled her room with school photos, received visits from teenage school colleagues, teachers etc). The hospital has its own school, so illness permitting education can continue including taking public examinations. Clowns visit, activities organised, music sessions etc etc.

First impressions – everyone is on first name terms. From the top consultant thro' to the student nurse thro' to the porter. The whole philosophy of the hospital is to make us at ease as much as possible. Stressed-out children are not going to be helped by stressed-out parents.

Each ward has a parents' suite consisting of three or so bedrooms, a kitchen and bathrooms. So during the four weeks we were there I would sleep in one of these and Nanda with Kezia on the ward. During the initial admission period in the hospital, both parents are allowed to stay - which in case was a godsend as Nanda doesn't speak English. Later admissions only one parent can stay - although I think if there were special circumstances, such as language, they would probably be flexible.The ward itself has a kitchen which parents can use when patients' meals aren't being served. There are also clothes-washing facilities, a playroom, a large outdoor play space (with tricycles, pedalcars etc) and of course bathroom/toilets for the patients.

Patients get three meals a day with a reasonable selection, parents make their own or use the cafeteria.

(Photo courtesy of the BBC).