Friday, June 29, 2007
Another Milestone
Kezia has just come out of operating theatre without her Hickman Line! Congratulations!
Thursday, June 28, 2007
Blog Rating
Via Rachel from North London - how droll! Seems the mention of drugs and death might not be good for your children!
You can rate your blog here.
Alan Johnson
Conquer Childhood Cancer Act
The Conquer Childhood Cancer Act is currently before the US Congress. Lauren and Fergus recently attended a mass lobby by 350 families and medical staff in support of the act. Lauren's account can be read here. (Norah and Rob stayed home and celebrated the solstice - I'm envious Rob, missing our kids!).
To quote Lauren "This act seeks to solidify desperately needed funding for the Children's Oncology Group (this group represents most of the pediatric oncology facilities in our country, and it is the only forum for the multi-center research studies that are so crucial to solving the awful puzzle that is childhood cancer). In addition, the act calls for a national registry/database to aid in learning more about the epidemiology of childhood cancer; it also calls for establishing a pediatric oncology fellowship, and a support network for families suffering with childhood cancer."
For our American readers both Lauren and Rob's posts contain links on how you can support this act by lobbying, fundraising etc.
And Fergus has just finished his chemotherapy! Congratulations!
To quote Lauren "This act seeks to solidify desperately needed funding for the Children's Oncology Group (this group represents most of the pediatric oncology facilities in our country, and it is the only forum for the multi-center research studies that are so crucial to solving the awful puzzle that is childhood cancer). In addition, the act calls for a national registry/database to aid in learning more about the epidemiology of childhood cancer; it also calls for establishing a pediatric oncology fellowship, and a support network for families suffering with childhood cancer."
For our American readers both Lauren and Rob's posts contain links on how you can support this act by lobbying, fundraising etc.
And Fergus has just finished his chemotherapy! Congratulations!
Wednesday, June 27, 2007
Patricia Hewitt
Just culled from the BBC "Mr Brown is thought likely to carry out the bulk of his Cabinet reshuffle on Thursday, but it has already emerged that one definite change will see Patricia Hewitt stepping down as health secretary."
Thursday update: It is tipped that Alan Johnson, formerly Education Secretary, will be appointed to Health. Patricia is definitely stepping down to spend more time with her elderly parents in Oz (? presumably she'll be resigning as an MP?).
Thursday update: It is tipped that Alan Johnson, formerly Education Secretary, will be appointed to Health. Patricia is definitely stepping down to spend more time with her elderly parents in Oz (? presumably she'll be resigning as an MP?).
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.
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.
Healthy Futures and Making it Better Review
The reviews of the Healthy and Making it Better "reform" programmes by the Independent Reconfiguration Panel were submitted to the Health Secretary yesterday but will not be available on their website for approximately a month.
I'm sure, given George Brown takes over as Prime Minister today and is expected to announce cabinet reshuffles today and tomorrow, we cannot expect an immediate decision.
In related news the local Rochdale MP has criticised the Pennine Acute Trust for publishing a business plan for developing a £3 million children's A & E unit and £25 million maternity unit ant North Manchester Hosiptal ahead of the IRP's review and the health secretary's decision.
I'm sure, given George Brown takes over as Prime Minister today and is expected to announce cabinet reshuffles today and tomorrow, we cannot expect an immediate decision.
In related news the local Rochdale MP has criticised the Pennine Acute Trust for publishing a business plan for developing a £3 million children's A & E unit and £25 million maternity unit ant North Manchester Hosiptal ahead of the IRP's review and the health secretary's decision.
Tuesday, June 26, 2007
Healthy Futures - Accessibility
I drew attention here that the “analysis” of public transport access to two (of four) hospitals in the Joint PCT Committee´s submission to the Independent Reconfiguration Panel’s review of the Healthy Futures (A & E provision) compared Apples with Oranges.
It gets worse …
Fairfield Hospital, on the borders of Rochdale and Bury councils, has been proposed for A & E cover of Rochdale.
There are three routes with 11 working daytime buses per hour from Rochdale Bus Station to Rochdale Infirmary. According to the Greater Manchester Public Transport Executive, service 468 runs from Rochdale Bus Station hourly in the evenings, on Sundays and public holidays and service 469, every 10-20 minutes only in the early evenings and hourly in the evenings, on Sundays and public holidays.
I am not a transportation analyst but someone in the Joint PCT Committee seems to have it in for Rochdale Infirmary …
New Links
Via the Grand Rounds (link right) I come across an African medical blog other things amanzi who took me to the top 100 blogs on health and medicine which took me to a cause near to my heart a blog on Open Medicine.
European Working Time Directive
Dr Crippen, the NHS Blog Doctor, has written this last weekend what has proven to be a controversial post, about doctors working hours, in response to a BBC report on a doctor “complaining” about long working hours. Dr Crippen has many good points to make but I tend to agree with Dr Rant´s commentary on his post.
As the debate evolved over the weekend, and of which I was unaware, I was drafting this post on the European Working Time Directive as it impacts on National Health Service employees and the proposed health service reforms in our local area.
The European Working Time Directive (EWTD) specifies how much time an employee can work. It is, to my mind, a good idea. In the developed world we accept the 40 hour working week as standard with some overtime, on occasion or even regularly.
I will not discuss nurses, midwives or other healthcare workers here … but I will discuss doctors.
There are many issues here, including:
a) our NHS has traditionally been under-funded and/or under-staffed resulting in high numbers of junior doctors having to work long hours;
b) at the same time these junior doctors are expected to undertake training during these hours.
c) doctor health and safety.
d) patient health and safety
When the EWTD, and its amendments for the medical professions were passed, junior doctors had their workload reduced to 56 hours per week by August 2007 and 48 hours in 2009. However, …
Fearing impacts on staffing levels that such cuts in hours might cause in the NHS, the government insisted that Junior Doctors could opt out of this on an individual basis. At an EU Council of Employment Ministers in November 2006 Spain, France, Italy and Cyprus wanted a deadline to be established to end this opt-out clause. The U.K. government objected. And a stalemate continues.
The Deanery of … has estimated that for 15 sites providing neonatal, children´s and obstetric services an additional 224 junior doctors – based on the EWTD requirements of 2004. That translates into 52 extra junior doctors under the first four options of the Making it Better plan, included in the plan´s Financial Assessment. I do note that Rochdale council`s consultant has not given us estimated doctor shortfalls for the “Do Nothing” option.
First some comments to the doctors …
You may be the only people to cut people open, administer otherwise life-threatening drugs but at clinically useful dosages … but you are not the only people to put themselves and the public at risk, whom I and you depend on to provide safe services - God Forbid if the hospital´s electrical sub-station failed - and who often have been or are required to put themselves or the public at risk through working long, albeit possibly illegal, hours.
Second some comments to the Health Secretary …
Our Rochdale report correctly highlights the error of basing training requirements on the volume-outcomes measure. Dr John wrongly equates hours worked with patient outcomes … but what else does he use? Volume by hospital outcomes or volume by physician outcomes - in the light of the paucity of research into the latter? Methinks the DoH needs to commission some serious research into the latter.
Make EWTD predictions for 2009.
And … given your predicted shortfalls of junior doctors, isn´t it about time you got MTAS/MMC right?
As the debate evolved over the weekend, and of which I was unaware, I was drafting this post on the European Working Time Directive as it impacts on National Health Service employees and the proposed health service reforms in our local area.
The European Working Time Directive (EWTD) specifies how much time an employee can work. It is, to my mind, a good idea. In the developed world we accept the 40 hour working week as standard with some overtime, on occasion or even regularly.
I will not discuss nurses, midwives or other healthcare workers here … but I will discuss doctors.
There are many issues here, including:
a) our NHS has traditionally been under-funded and/or under-staffed resulting in high numbers of junior doctors having to work long hours;
b) at the same time these junior doctors are expected to undertake training during these hours.
c) doctor health and safety.
d) patient health and safety
When the EWTD, and its amendments for the medical professions were passed, junior doctors had their workload reduced to 56 hours per week by August 2007 and 48 hours in 2009. However, …
Fearing impacts on staffing levels that such cuts in hours might cause in the NHS, the government insisted that Junior Doctors could opt out of this on an individual basis. At an EU Council of Employment Ministers in November 2006 Spain, France, Italy and Cyprus wanted a deadline to be established to end this opt-out clause. The U.K. government objected. And a stalemate continues.
The Deanery of … has estimated that for 15 sites providing neonatal, children´s and obstetric services an additional 224 junior doctors – based on the EWTD requirements of 2004. That translates into 52 extra junior doctors under the first four options of the Making it Better plan, included in the plan´s Financial Assessment. I do note that Rochdale council`s consultant has not given us estimated doctor shortfalls for the “Do Nothing” option.
First some comments to the doctors …
You may be the only people to cut people open, administer otherwise life-threatening drugs but at clinically useful dosages … but you are not the only people to put themselves and the public at risk, whom I and you depend on to provide safe services - God Forbid if the hospital´s electrical sub-station failed - and who often have been or are required to put themselves or the public at risk through working long, albeit possibly illegal, hours.
Second some comments to the Health Secretary …
Our Rochdale report correctly highlights the error of basing training requirements on the volume-outcomes measure. Dr John wrongly equates hours worked with patient outcomes … but what else does he use? Volume by hospital outcomes or volume by physician outcomes - in the light of the paucity of research into the latter? Methinks the DoH needs to commission some serious research into the latter.
Make EWTD predictions for 2009.
And … given your predicted shortfalls of junior doctors, isn´t it about time you got MTAS/MMC right?
Monday, June 25, 2007
Choices
Via NHS Blog Doctor's weekly BritMeds I find this link to FtM Doctor writing about Nurse Practitioners. I could not agree more
The paediatric oncology nurses on the Borchardt Ward at RMCH are the true Paediatric Oncology Nurse Specialists methinks, although I never saw any of them entitled such or claim to be such – they know their jobs and if they have any doubts, will call the doctor.
Hey, Dr Crippen, you and the patient can choose your hospital now, your Centre of Excellence – choose the RMCH for paediatric cancer treatment! It might be a 350 mile train trip … that’s local treatment!
The paediatric oncology nurses on the Borchardt Ward at RMCH are the true Paediatric Oncology Nurse Specialists methinks, although I never saw any of them entitled such or claim to be such – they know their jobs and if they have any doubts, will call the doctor.
Hey, Dr Crippen, you and the patient can choose your hospital now, your Centre of Excellence – choose the RMCH for paediatric cancer treatment! It might be a 350 mile train trip … that’s local treatment!
Junior Doctors
… or Doctor in Training, is a term given to all Pre-Registration House Officers (PRHO), Senior House Officers (SHO) and Specialist Registrars (SpR).
Fuck ! … That means Dr. K. who diagnosed our daughter with leukaemia is still in training, that means he is still subject to MTAS/MMC!
Fuck ! … That means Dr. K. who diagnosed our daughter with leukaemia is still in training, that means he is still subject to MTAS/MMC!
Now I begin to understand the enormity of the MTAS/MMC debacle.
Dr Crippen – why didn’t you explain this to us poor sods?Thursday, June 21, 2007
No Change not an Option
Three options were presented to those consulted in the Healthy Futures (A & E) consultation exercise. Five in the Making it Better (Paediatrics and Maternity) exercise.
An option for no change to existing provision was not included in the Healthy Futures consultation (stated in the IRP’s Healthy Futures template).
Rochdale Council’s report questions the SHA’s interpretation of the consultations’ results. Many responses, interpreted as positive, express “qualifications, caveats and concerns” with very few which are clear endorsements.
Although many want services to be retained locally, they appear to have been hoodwinked by talk of “urgent care centres” and “centres of excellence” and that these will local and not so local levels of service will provide the same level of service as existing facilities.
Joe and Jane Blogg can easily be convinced that a Nurse Specialist will provide the same level of expertise as a doctor.
There are many concerns that the expansion of community, as opposed to hospital, services will be underfunded. It would seem that the financial planning for centralising services has been impeccable (sic), but both the logistical and financial planning for expanding community services (e.g. children’s community nursing teams) has been neglected. Quite possibly (and very probably) these community alternatives will not be in place before hospital services are withdrawn.
It would also seem that two separate consultation exercises, one for A & E, the other for paediatrics and maternity, may have been an attempt (or at least perceived as such) to “pull the wool over our eyes” over the totality of cuts. I am sure those who offered their opinions in the two consultation exercises were not the same.
If I knew there was no Paediatric department there, I wouldn’t take Kezia to their A& E and vice versa. As it is, the local hospital may well end up with neither … and we’ll have to make a long bus trip to the nearest hospital with both.
An option for no change to existing provision was not included in the Healthy Futures consultation (stated in the IRP’s Healthy Futures template).
Rochdale Council’s report questions the SHA’s interpretation of the consultations’ results. Many responses, interpreted as positive, express “qualifications, caveats and concerns” with very few which are clear endorsements.
Although many want services to be retained locally, they appear to have been hoodwinked by talk of “urgent care centres” and “centres of excellence” and that these will local and not so local levels of service will provide the same level of service as existing facilities.
Joe and Jane Blogg can easily be convinced that a Nurse Specialist will provide the same level of expertise as a doctor.
There are many concerns that the expansion of community, as opposed to hospital, services will be underfunded. It would seem that the financial planning for centralising services has been impeccable (sic), but both the logistical and financial planning for expanding community services (e.g. children’s community nursing teams) has been neglected. Quite possibly (and very probably) these community alternatives will not be in place before hospital services are withdrawn.
It would also seem that two separate consultation exercises, one for A & E, the other for paediatrics and maternity, may have been an attempt (or at least perceived as such) to “pull the wool over our eyes” over the totality of cuts. I am sure those who offered their opinions in the two consultation exercises were not the same.
If I knew there was no Paediatric department there, I wouldn’t take Kezia to their A& E and vice versa. As it is, the local hospital may well end up with neither … and we’ll have to make a long bus trip to the nearest hospital with both.
In the News
Perhaps the most important health news we have come across today is that the vaccine for the human papillomavirus (HPV) that causes cervical cancer has been approved for use in the U.K. by the Joint Committee on Vaccination and Immunisation (JCVI). Department of Health press release here. BBC report here. The Scottish Executive has said it will implement vaccinations of all 12 and 13 year old girls as soon as possible (probably late 2008) but, typically, England is dragging its feet and the government wants an independent cost-effectiveness study before it will (or will not) implement a vaccination programme.
So here are some UK statistics for you culled from the web. I won't vouch for their accuracy but they are approximately correct.
Female population: 30.7 million
Females 12-13 years: c. 380,000
No. of new cases of cervical cancer per annum: 2800
No. of deaths from cervical cancer per annum: 1120
Cost of treatment per case: £2150
Cost of treatment all cases per annum: £6.02 million
Cost of annual pap smear: £12.50
Cost of vaccine: £250
No. of cases prevented by the vaccine: 70% - 1960
Cost of all treatment all cases per annum with a vaccination programme: £1.8 million (saving 4.2 million)
Make up your own mind.
In other news, a reminder that it is not just the high profile tropical diseases that kill in the developing world. An outbreak of measles in northern Nigeria has killed at least 20 children with at least 400 infected.
Staying in Nigeria, its government is suing the multinational pharmaceutical company Pfizer for deaths and disabilities caused by the 1996 trial of the meningitis treatment drug Trovan. The company claims that all participants in the trial gave verbal consent and it was acting according to Nigerian regulations. Even if it was, purely verbal consent would not be considered ethical here. Report here.
We have posted before on the importance of biodiversity to the development of new drugs and treatments. Now the drug Trabectadin, developed from a sea squirt, has been shown to control the cancer myoxid liposarcoma.
And finally, the search for a treatment for river blindness, which is thought to effect 18 million people in Africa, is documented in pictures here.
So here are some UK statistics for you culled from the web. I won't vouch for their accuracy but they are approximately correct.
Female population: 30.7 million
Females 12-13 years: c. 380,000
No. of new cases of cervical cancer per annum: 2800
No. of deaths from cervical cancer per annum: 1120
Cost of treatment per case: £2150
Cost of treatment all cases per annum: £6.02 million
Cost of annual pap smear: £12.50
Cost of vaccine: £250
No. of cases prevented by the vaccine: 70% - 1960
Cost of all treatment all cases per annum with a vaccination programme: £1.8 million (saving 4.2 million)
Make up your own mind.
In other news, a reminder that it is not just the high profile tropical diseases that kill in the developing world. An outbreak of measles in northern Nigeria has killed at least 20 children with at least 400 infected.
Staying in Nigeria, its government is suing the multinational pharmaceutical company Pfizer for deaths and disabilities caused by the 1996 trial of the meningitis treatment drug Trovan. The company claims that all participants in the trial gave verbal consent and it was acting according to Nigerian regulations. Even if it was, purely verbal consent would not be considered ethical here. Report here.
We have posted before on the importance of biodiversity to the development of new drugs and treatments. Now the drug Trabectadin, developed from a sea squirt, has been shown to control the cancer myoxid liposarcoma.
And finally, the search for a treatment for river blindness, which is thought to effect 18 million people in Africa, is documented in pictures here.
Wednesday, June 20, 2007
I note
… from the Independent Reconfiguration Panel’s website that the template document for the review of the Making it Better: Making it Real (Paediatric and Maternity provision) proposals is basically empty. Why?
I note that the Pennine Acute Trust’s head of human resources Roger Pickering is reported as saying that the cuts should not result in job losses and is quoted in the press as saying "We remain confident that all staff affected by these moves will be offered redeployment …Our aim is to deliver financial recovery while minimising the impact on patient services and staff.".
I note, however, that in the IRP’s template for Healthy Futures (A & E services), the Pennine Acute Trust has stated that one of its aims is the “reduction in posts and jobs” despite Mr Pickering’s assurances.
I also note that in the IRP’s template for Healthy Futures (A & E services) the review of Access and Transport (section 1.3.3) is meaningless. To quote (with my comments in parentheses) …
“Oldham [to the hospital itself? It doesn’t say]: 18 buses per hour weekdays [from where? It doesn’t say], 5 buses per hour at night [from where?]
Rochdale: Least well served by public transport, 900 metres from bus station [so I’m assuming it means the hospital] – ring road makes access difficult.”
Apples and Oranges. Is the IRP going to be able to give Patsy an informed recommendation?
Dr. Crippen, please please link to this before 26 June, your blog is far more influential than mine – maybe someone on the IRP reads NHSBlogDoctor!
I am getting angry! I am angry! I’m tired of being angry. I want to blog about cancer, I want to blog about Kezia’s hair beginning to grow back - not about the state of the NHS!
I note that the Pennine Acute Trust’s head of human resources Roger Pickering is reported as saying that the cuts should not result in job losses and is quoted in the press as saying "We remain confident that all staff affected by these moves will be offered redeployment …Our aim is to deliver financial recovery while minimising the impact on patient services and staff.".
I note, however, that in the IRP’s template for Healthy Futures (A & E services), the Pennine Acute Trust has stated that one of its aims is the “reduction in posts and jobs” despite Mr Pickering’s assurances.
I also note that in the IRP’s template for Healthy Futures (A & E services) the review of Access and Transport (section 1.3.3) is meaningless. To quote (with my comments in parentheses) …
“Oldham [to the hospital itself? It doesn’t say]: 18 buses per hour weekdays [from where? It doesn’t say], 5 buses per hour at night [from where?]
Rochdale: Least well served by public transport, 900 metres from bus station [so I’m assuming it means the hospital] – ring road makes access difficult.”
Apples and Oranges. Is the IRP going to be able to give Patsy an informed recommendation?
Dr. Crippen, please please link to this before 26 June, your blog is far more influential than mine – maybe someone on the IRP reads NHSBlogDoctor!
I am getting angry! I am angry! I’m tired of being angry. I want to blog about cancer, I want to blog about Kezia’s hair beginning to grow back - not about the state of the NHS!
Our Council Fights Back
Since the application for judicial review of the cutting A & E services at our local hospital was rejected on 8 June (posted here), I have learned some more - the SHA is also planning to cut both paediatric and maternity services.
So, on that Sunday a year ago, Kezia would have had neither A & E nor Paediatric!
(Blimey John, we would have had a Nurse Specialist diagnosing her with malaria based on arriving from Africa, on an enlarged spleen, no malaria test available on a Sunday, not believing African doctors and come back tomorrow).
The local council is fighting back!
I know it is politically expedient for local councillors and MPs to focus on local issues, rather than think of the good of a wider region but I think they may have a point in this case.
The council commissioned a report from a health policy expert at the De Montfort University in Leicester to examine the SHA’s Making it Better: Making it Real (Paediatric and Maternity provision) and Healthy Futures (A & E provision) reviews and to evaluate its decisions to downgrade (or should I say degrade?) services provided by our local hospital. And, obviously, since her paymasters were the local council, she gave them what they wanted to hear.
This document has been presented to the DoH’s Independent Reconfiguration Panel (IRP), reporting to the Health Secretary, by 26 June. The IRP is basically the last line of defense before our Health Secretary makes critical decisions about changes to the National Health Service.
I am wading through the expert’s report … and will certainly post more on it.
But just some quick observations …
In our post on Monday about translation/interpreting services, our SHA (which I noted was positive about the necessity of good translation (sic) provision) highlighted the problems that non-native speakers of English (either for cultural and/or linguistic reasons) might have accessing local public transport systems and that access to familiar local hospitals improved access rates.
We live in a borough with a high proportion of ethnic minorities.
The SHA has paid lip service to the impediments faced by ethnic minorities travelling on public transport. The SHA’s transportation data is based only on ambulance times between hospitals, not on public transport availability and times – so in-patients who do not need ambulance transport and visitors without private transport (33.4% for our local authority according to the 2001 census, above both the national and SHA’s average) have not been taken into account.
I remember very well taking 2 ½ hours one way to travel by public transport the 14 miles from the RMCH to our future home – a bus journey from the hospital to the centre of Manchester, a 20 minute walk from Piccadilly to Manchester Victoria railway station, a half-hour wait at Victoria, a half-hour rail journey, wait for a bus from the destination railway station to the town centre, another bus journey to our future home. And return. Five hours total … and that was with no treatment involved.
Two children in tow, one with leukaemia, not speaking English …
Even now, Nanda is not confident enough to catch a train into Manchester … but, hey, she is confident enough to administer chemotherapy and deal with the RMCH! Good on her!
Clearly, the transport times involved are not as lengthy between us and the RMCH and Lucia and the RMCH. On occasion, when Lucia has needed emergency admission during her treatment for ALL, the always-consulted RMCH has allowed her to be treated at her local Blackpool general hospital. I don’t know the facilities at this hospital compared to our own local hospital, but I’m sure she received adequate treatment and I imagine our local hospital would as well … but I imagine the RMCH makes decisions about distance, time, transport/ambulance availability, clinical need and, I hope, ethnic minority needs (language, availability of Languageline at night etc … do they follow a protocol or does the duty doctor, or even the on-duty nurse make a judgement?).
Yet the SHA recommends cutting services at the local hospital, obliging both native and non-native speakers of English to travel further afield on ropey public transport systems to seek essential healthcare.
The government claims to be increasing patient choice, yet it is cutting services at our local hospital. Limiting choice.
So, on that Sunday a year ago, Kezia would have had neither A & E nor Paediatric!
(Blimey John, we would have had a Nurse Specialist diagnosing her with malaria based on arriving from Africa, on an enlarged spleen, no malaria test available on a Sunday, not believing African doctors and come back tomorrow).
The local council is fighting back!
I know it is politically expedient for local councillors and MPs to focus on local issues, rather than think of the good of a wider region but I think they may have a point in this case.
The council commissioned a report from a health policy expert at the De Montfort University in Leicester to examine the SHA’s Making it Better: Making it Real (Paediatric and Maternity provision) and Healthy Futures (A & E provision) reviews and to evaluate its decisions to downgrade (or should I say degrade?) services provided by our local hospital. And, obviously, since her paymasters were the local council, she gave them what they wanted to hear.
This document has been presented to the DoH’s Independent Reconfiguration Panel (IRP), reporting to the Health Secretary, by 26 June. The IRP is basically the last line of defense before our Health Secretary makes critical decisions about changes to the National Health Service.
I am wading through the expert’s report … and will certainly post more on it.
But just some quick observations …
In our post on Monday about translation/interpreting services, our SHA (which I noted was positive about the necessity of good translation (sic) provision) highlighted the problems that non-native speakers of English (either for cultural and/or linguistic reasons) might have accessing local public transport systems and that access to familiar local hospitals improved access rates.
We live in a borough with a high proportion of ethnic minorities.
The SHA has paid lip service to the impediments faced by ethnic minorities travelling on public transport. The SHA’s transportation data is based only on ambulance times between hospitals, not on public transport availability and times – so in-patients who do not need ambulance transport and visitors without private transport (33.4% for our local authority according to the 2001 census, above both the national and SHA’s average) have not been taken into account.
I remember very well taking 2 ½ hours one way to travel by public transport the 14 miles from the RMCH to our future home – a bus journey from the hospital to the centre of Manchester, a 20 minute walk from Piccadilly to Manchester Victoria railway station, a half-hour wait at Victoria, a half-hour rail journey, wait for a bus from the destination railway station to the town centre, another bus journey to our future home. And return. Five hours total … and that was with no treatment involved.
Two children in tow, one with leukaemia, not speaking English …
Even now, Nanda is not confident enough to catch a train into Manchester … but, hey, she is confident enough to administer chemotherapy and deal with the RMCH! Good on her!
Clearly, the transport times involved are not as lengthy between us and the RMCH and Lucia and the RMCH. On occasion, when Lucia has needed emergency admission during her treatment for ALL, the always-consulted RMCH has allowed her to be treated at her local Blackpool general hospital. I don’t know the facilities at this hospital compared to our own local hospital, but I’m sure she received adequate treatment and I imagine our local hospital would as well … but I imagine the RMCH makes decisions about distance, time, transport/ambulance availability, clinical need and, I hope, ethnic minority needs (language, availability of Languageline at night etc … do they follow a protocol or does the duty doctor, or even the on-duty nurse make a judgement?).
Yet the SHA recommends cutting services at the local hospital, obliging both native and non-native speakers of English to travel further afield on ropey public transport systems to seek essential healthcare.
The government claims to be increasing patient choice, yet it is cutting services at our local hospital. Limiting choice.
Thank you to our local hospital for having A & E and paediatric services. Thank you to my brother for not being part of the 33.4% - I cannot imagine travelling 14 miles on public transport on a Sunday after 36 hours travel time with my leukaemic daughter – and thank you NHS/RMCH, in spite of everything you are up against, for all you are doing for us!
Patricia Hewitt and Ruth Kelly – up yours!
Children Fighting Cancer - Episode 2
Episode 2 of the BBC series on children with leukaemia was shown last night. Craig's review here. Thanks!
Monday, June 18, 2007
Making it Better - Translation Services
Although our local council is not impressed with the Strategic Health Authority's proposals under the government's Healthy Futures and Making it Better "reform" programmes (of which more anon), there is no mistaking the SHA's commitment to translation services ...
"Inadequate translation services were seen as a major barrier to accessing services for those who could not speak English. It has been found that in addition to the importance of translation services, BME communities may also experience communication barriers which reduce access to services due to travelling, e.g., if spoken English is a barrier to using public transport, where this is the main travel mode. Where communication is a challenge, service users prefer local services, trusting the more familiar than the unknown, particularly when increased distance presents a greater barrier to access for family and visitors, by virtue of cost, time, childcare arrangements etc."
"Communication difficulties have been recognised in the MiB consultation as being of major relevance for some groups, e.g., people with poor literacy and non-English speakers."
For Black Ethnic Minority Groups "Ensure that translation and interpretation services are readily available as a matter of routine."
So stick that up your Ms Kelly!
Friday, June 15, 2007
Jaime
I've just received Jaime's results from his first teacher assessment under the UK National Curriculum: Reading P8, Writing 1C and Mathematics 2B. Took a bit of reseach to find out what all this means.
The UK National Curriculum is divided into three Key Stages. Key Stage 2 runs from the ages of 7 to 14 and is divided into eight levels. At 7 years old he should be at Level 2. P1-8 are levels for those with special educational needs, P8 being directly below 1C.
Obviously, having only recently started learning English his reading and writing skills are below what they should be but the fact that he achieved 2B in Maths is amazing! We are proud of him!
Congratulations Jaime!
Thursday, June 14, 2007
Children Fighting Cancer - Episode 1
Here is a good review of the first episode of BBC1's Children Fighting Cancer shown on Tuesday night.
Update: Craig has promised to try and review the next episodes.
Update: Craig has promised to try and review the next episodes.
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.
The page is part of a larger cancer information site run by the Central Manchester and Manchester Children's Hospitals Trust.
Palm Wine
The news that the veteran Nigerian writer Chinua Achebe hás just won the Man Booker International Prize has reminded me of another Nigerian writer, Amos Tutuola, who wrote the visionary novel The Palm-Wine Drinkard and his dead Palm Tapster in the Deads` Town. Another of his works was the inspiration of the classic David Byrne and Brian Eno album My Life in the Bush of Ghosts.
I will move on to palm wine in a moment but first will talk about chopsticks …
I`ve just got back from the local shop and sat a while with the owner 81 year-old Mr. Virgilio and his 40 year-old son Inacio. I spent a year in Shanghai in the 1980s and Inacio spent a week in Taiwan two years ago – we got to talking about chopsticks and Chinese cuisine. Turns out that Inacio brought back a lot of chopsticks from Taiwan and it was a pleasure to pick them up again with a plate of salted cajamanga! And he gave me three pairs – so I will now try to teach Hamilton and Kiste how to use them!
This again reminded me of the two years I later spent in Darfur where the traditional drinks are a beer made from millet, sorghum or sesame and a distilled spirit made from dates or oranges. The beer was considered by aid agencies to be an important contribution to local nutrition so the introduction of Sharia law in 1985, in the midst of a famine, was not considered helpful.
And so back to palm wine.
Elaeis guineensis, the oil palm, is grown throughout tropical Africa and Asia, both at artesanal and plantation levels of production, for the two types of oil that can be extracted from its fruits/nuts.
However, its sap can also be used to produce palm wine – a natural, organic alcoholic drink. An oil palm can be used for either palm nuts or palm wine – not both.
Here, to get palm wine, the palm wine tapper climbs to the top of the palm, makes sure it is clean of both male and female flowers, makes an incision in the trunk, inserts a spigot and ties a 5 litre container to the tree into which the sap flows. Two-three litres a day. In other central African countries, I have been told, they cut down the whole tree and take the wine out of the base over a series of days – bit of a waste!
The sap is non-alcoholic – at first! But the moment it hits the air, it starts fermenting. After 2-3 hours it is alcoholic but still sweet. After eight hours it is becoming sour, after two days it is vinegar (one of its uses!).
There is something curious about its qualities. Firstly, it is too filling to get you real drunk. Secondly, it seems to have some narcotic effect like cannabis (and hence the strange almost hallucinatory character of Tutuola´s novel – but I´ve yet to see scientific research on this) that gets you talkative and relaxed but not falling over, thirdly if you drink too much, it will counteract your stomach-acids, continue fermenting and give you diarrhoea.
We use our own oil palms for oil, not palm wine. The “contractural” details with palm wine tappers are far too complicated!
I will move on to palm wine in a moment but first will talk about chopsticks …
I`ve just got back from the local shop and sat a while with the owner 81 year-old Mr. Virgilio and his 40 year-old son Inacio. I spent a year in Shanghai in the 1980s and Inacio spent a week in Taiwan two years ago – we got to talking about chopsticks and Chinese cuisine. Turns out that Inacio brought back a lot of chopsticks from Taiwan and it was a pleasure to pick them up again with a plate of salted cajamanga! And he gave me three pairs – so I will now try to teach Hamilton and Kiste how to use them!
This again reminded me of the two years I later spent in Darfur where the traditional drinks are a beer made from millet, sorghum or sesame and a distilled spirit made from dates or oranges. The beer was considered by aid agencies to be an important contribution to local nutrition so the introduction of Sharia law in 1985, in the midst of a famine, was not considered helpful.
And so back to palm wine.
Elaeis guineensis, the oil palm, is grown throughout tropical Africa and Asia, both at artesanal and plantation levels of production, for the two types of oil that can be extracted from its fruits/nuts.
However, its sap can also be used to produce palm wine – a natural, organic alcoholic drink. An oil palm can be used for either palm nuts or palm wine – not both.
Here, to get palm wine, the palm wine tapper climbs to the top of the palm, makes sure it is clean of both male and female flowers, makes an incision in the trunk, inserts a spigot and ties a 5 litre container to the tree into which the sap flows. Two-three litres a day. In other central African countries, I have been told, they cut down the whole tree and take the wine out of the base over a series of days – bit of a waste!
The sap is non-alcoholic – at first! But the moment it hits the air, it starts fermenting. After 2-3 hours it is alcoholic but still sweet. After eight hours it is becoming sour, after two days it is vinegar (one of its uses!).
There is something curious about its qualities. Firstly, it is too filling to get you real drunk. Secondly, it seems to have some narcotic effect like cannabis (and hence the strange almost hallucinatory character of Tutuola´s novel – but I´ve yet to see scientific research on this) that gets you talkative and relaxed but not falling over, thirdly if you drink too much, it will counteract your stomach-acids, continue fermenting and give you diarrhoea.
We use our own oil palms for oil, not palm wine. The “contractural” details with palm wine tappers are far too complicated!
Wednesday, June 13, 2007
Long Distance Telephone Conversations
Me: "I've paid the rent".
Nanda: "Have you paid the rent?"
"Yes, I've paid the rent".
"Are you sure you paid the rent?"
Trying not to grit my teeth, "I've just told you I paid the rent".
"Ahh, so you've paid the rent ... so there's less money in the bank".
"Yes."
"Oh ... well, you'd better not withdraw any money".
Me: "I've asked (our consultant) J. what next Tuesday's appointment is for".
"But it wasn't J. who made the appointment".
"I know that".
"So why did you ask J.?"
"Well, I don't know the doctor who made Tuesday's appointment"
"If J. didn't make the appointment ..."
Bloody hell, he is our consultant!
"I think I made a mistake with Kezia's medication".
"WHAT?!"
"You know ... the um methotrexate. It's meant to go in the line, right?"
"WHAAT! You put the methotrexate in the Hickman Line?!!"
"No, I gave it to her orally".
Phew!! "Thank god for that!"
"You mean I'm meant to give it orally?"
"Yes, yes, yes! Look, you don't give her anything in the line anymore!"
"Look, I'll ring you tomorrow".
Nanda: "Have you paid the rent?"
"Yes, I've paid the rent".
"Are you sure you paid the rent?"
Trying not to grit my teeth, "I've just told you I paid the rent".
"Ahh, so you've paid the rent ... so there's less money in the bank".
"Yes."
"Oh ... well, you'd better not withdraw any money".
Me: "I've asked (our consultant) J. what next Tuesday's appointment is for".
"But it wasn't J. who made the appointment".
"I know that".
"So why did you ask J.?"
"Well, I don't know the doctor who made Tuesday's appointment"
"If J. didn't make the appointment ..."
Bloody hell, he is our consultant!
"I think I made a mistake with Kezia's medication".
"WHAT?!"
"You know ... the um methotrexate. It's meant to go in the line, right?"
"WHAAT! You put the methotrexate in the Hickman Line?!!"
"No, I gave it to her orally".
Phew!! "Thank god for that!"
"You mean I'm meant to give it orally?"
"Yes, yes, yes! Look, you don't give her anything in the line anymore!"
"Look, I'll ring you tomorrow".
Coffee
I started this a while ago so the first paragraph is somewhat out-of-date …
The last few posts have been intense, and simmering behind that hás been stress and emotion. Today some release from that as salary arrived and I can rest assured that there is enough money to pay the rent and bills in England. Plus the ecstatic but tired relief of completing a year of treatment …
So tonight I will turn to a completely different subject unrelated to cancer, to Kezia, but part of our life here …
The house we have built is on a plot of land 60 metres square. Too big to be all garden but not really big enough to be a profitable agricultural enterprise. Our neighbours grow everything – plantains, bananas, coffee, cacao (cocoa), breadfruit, cola, jackfruit, mangoes, oranges oil palms, trees that provide firewood, trees that provide timber etc etc, all on top of the other, and as a result they have an over-shaded mixture of everything and nothing much does very well.
So when I bought the land, I decided to concentrate on one crop. The price of cacao on the local and international markets was low and you cannot consume it without intensive and usually at least semi-industrial processing. So I decided to concentrate on my coffee plants.
The last few posts have been intense, and simmering behind that hás been stress and emotion. Today some release from that as salary arrived and I can rest assured that there is enough money to pay the rent and bills in England. Plus the ecstatic but tired relief of completing a year of treatment …
So tonight I will turn to a completely different subject unrelated to cancer, to Kezia, but part of our life here …
The house we have built is on a plot of land 60 metres square. Too big to be all garden but not really big enough to be a profitable agricultural enterprise. Our neighbours grow everything – plantains, bananas, coffee, cacao (cocoa), breadfruit, cola, jackfruit, mangoes, oranges oil palms, trees that provide firewood, trees that provide timber etc etc, all on top of the other, and as a result they have an over-shaded mixture of everything and nothing much does very well.
So when I bought the land, I decided to concentrate on one crop. The price of cacao on the local and international markets was low and you cannot consume it without intensive and usually at least semi-industrial processing. So I decided to concentrate on my coffee plants.
Coffee
On the advice of my friend C., an expert (more anon), get rid of heavy shade, maintain a light shade, encourage breeze … so I cut down my plantains and cacao. Now we have a much better coffee harvest. We maintain some oil palms – they provide palm oil which we use in traditional dishes and the dog food, three orange and two tangerine trees, a cola tree, breadfruit and jackfruit. Now there are enough but not too many shade trees to ensure a good coffee harvest.
There are three species of coffee here – Coffea arabica, C. robusta and C. liberica. Traditionally, that is the order in which they are graded. However, there are subtle differences. C. robusta is normally used for stronger Expresso-type coffee, C. arabica for your smooth, weaker breakfast coffees. The best robustas are better than the worst arabicas. Much has to do with your taste, how it is grown, how it is processed and how it is processed. C. arabica is grown above approximately 800 metres, C. robusta and C. liberica down to sealevel.
Chocolate
Cacao was originally introduced from Brazil in the early 19th century, at the time of Brazilian independence. And although these races of cacao originated in the Amazon, the ones that reached the Brazilian Atlantic coast stock differed little genetically from the original Amazon stock, and hence came to Africa. But since then the Brazilian Atlantic coast stock, has been genetically altered to create high-yielding varieties that have lost the original flavours/quality. And today Cote d’Ivoire is the biggest producer in the world with cacao production funding the civil war there.
The cacao seedlings were brought here by a Creole African slave trader on his return trip, fleeing from the Brazilian revolution against the Portuguese monarchy that resulted in Brazilian independence.
But over the years, higher yielding but lower quality varieties have been introduced and became the mainstay of cacao production.
C. discovered some of the original Brazilian stock here - abandoned and growing wild, in its own traditional state. High quality but low-yield.
Coffee again
Coffee was introduced maybe 30-40 years earlier. Again, original varieties, probably introduced from Angola, were replaced this century by modern high-yielding but low-quality hybrids.
We are at c. 250 metre and grow C. robusta. Our processing is certainly not up to C.’s standards … I can tell the difference. But it is above the bog-standard here where the berries are harvested green and the beans broken into three, four, five before drying and roasting.
I also remember very well a World Bank or African Development Bank project to restore our top state-owned coffee plantation with a foreign variety that did not need shade forest – an enormous amount of shade-cover was cleared, the coffee was planted … and it failed dismally. Now this plantation has hectares of useless tree-less land.
Again C. uses the original coffee varieties he found here.
C. is one of the very very few producers of coffee and chocolate in the world, perhaps the only one, who goes from the seed to the finished product. Most chocolatiers buy their cacao from plantations where they cannot control the quality of the growing, the harvesting and the post-harvesting fermentation and drying. Same with the coffee manufacturers.
Now, both C.’s chocolate and coffee are available at select outlets in the USA and Europe. And don’t get fobbed off by cheap chocolate and coffee from our country in supermarkets in the U.K, made from supposed organic cacao by a French manufacturer. I noticed a trend in UK supermarkets and chocolate/coffee outlets for single-country products – that does not necessarily mean better. “Oooh that’s pure organic Tanzanian coffee” – is not a guarantee of quality.
C.’s chocolate and coffee are not cheap. But …his chocolate is superb, his coffee excels.
The chocolate varies in price from €46 per kilo (a soft dark chocolate) to €77 per kilo (a chocolate infused in distilled cacao pulp spirit). In between is chocolate with sugar crystals, ginger etc. Available in 100 g. packages (i.e. €4.6-7.7).
The coffee is €52 per kilo available in 250 g packages (i.e. €13.0)
Perhaps, the most interesting product is three different varieties of coffee bean coated in chocolate – each variety of coffee interacts with the chocolate on the taste-buds in a different way. €60 per kilo available in 50 g. packages.
If you are interested, then please email me.
If you want some links (to back me up!), again contact me.
Tuesday, June 12, 2007
NHS Translation Services II
Back in March I posted on how invaluable translation services are to both patients and staff in the NHS.
Dr Crippen warns us that Ruth Kelly may become the new Health Secretary.
She is already making clear her views on translation services provided by the state (and see the interview here) - it appears that she feels they should only be available to A & E departments. Otherwise it is a discouragement to learn English!
As stated above it is not only the patients who benefit, its the doctors and nurses - if a patient cannot communicate what s/he is feeling, what medicine s/he is taking etc, then the chances of mis-diagnosis, wrong treatments increase enormously. And then we patients will sue when something goes wrong, what's the doctor's defence? The patient doesn't speak English so it's not my fault!
Heaven forbid she becomes Health Secretary!
Dr Crippen warns us that Ruth Kelly may become the new Health Secretary.
She is already making clear her views on translation services provided by the state (and see the interview here) - it appears that she feels they should only be available to A & E departments. Otherwise it is a discouragement to learn English!
As stated above it is not only the patients who benefit, its the doctors and nurses - if a patient cannot communicate what s/he is feeling, what medicine s/he is taking etc, then the chances of mis-diagnosis, wrong treatments increase enormously. And then we patients will sue when something goes wrong, what's the doctor's defence? The patient doesn't speak English so it's not my fault!
Heaven forbid she becomes Health Secretary!
Dr. Who
Kezia and Nanda have just got back from hospital - her counts were good enough that she can start nightly 6-mercapturine and weekly oral methotrexate.
Apparently, our consultant J. is known by Kezia as Dr Who! I wonder if he has a Tardis!
Apparently, our consultant J. is known by Kezia as Dr Who! I wonder if he has a Tardis!
AfrOx Update
AfrOx has now posted on its website several of the presentations from the Cancer Control in Africa meeting held in May.
Critical Error
Last night saw the broadcast of BBC Frontline Scotland's documentary Critical Error: the Lisa Norris Story about the maladministration of radiotherapy in cancer treatment.
It "discovered that there are now wider questions about the delivery of radiotherapy treatment in Britain".
According to a report into an incident at one hospital, radiotherapy planners were working in highly pressurised conditions and, consequently, routine checking procedures were compromised. Dosages must be correct and correspond to the individual patient's treatment plan. But it was found the therapists were so rushed that on occasions few checks were carried out before treatment began.
Other cancer experts believe poor working conditions are not all that is wrong with radiotherapy in Britain. A former head of cancer treatment at the World Health Organisation stated that some patients are being given radiation over too short a time period in order to save resources, and to meet waiting times (or should we say government targets?).
We have written before about the crisis in radiotherapy in the UK NHS. A shortage of machines and an even larger shortage of staff. No surprise then that mistakes happen.
It "discovered that there are now wider questions about the delivery of radiotherapy treatment in Britain".
According to a report into an incident at one hospital, radiotherapy planners were working in highly pressurised conditions and, consequently, routine checking procedures were compromised. Dosages must be correct and correspond to the individual patient's treatment plan. But it was found the therapists were so rushed that on occasions few checks were carried out before treatment began.
Other cancer experts believe poor working conditions are not all that is wrong with radiotherapy in Britain. A former head of cancer treatment at the World Health Organisation stated that some patients are being given radiation over too short a time period in order to save resources, and to meet waiting times (or should we say government targets?).
We have written before about the crisis in radiotherapy in the UK NHS. A shortage of machines and an even larger shortage of staff. No surprise then that mistakes happen.
Children Fighting Cancer
Lucia draws my attention to a new series on BBC1 about young leukaemia patients. Entitled Children Fighting Cancer it starts tonight at 10:35 pm - a bit late for child viewers! As I won't get to see it I hope she writes a review.
Maria Lourdes
"Lourdes passed away @ 0200 GMT 06/11/07. I thank all of you for your prayers, freindship, and support.
Regards Myron"
Cancer.
Regards Myron"
Cancer.
Monday, June 11, 2007
On the Web
Courtesy of the most recent Grand Rounds a couple of blog posts on issues we have touched on ourselves.
Aetiology discusses the shortage of trained medical staff in Africa as well as the reasons why those trained head towards developed countries. (Our own post here).
We have mentioned many times on this blog the fiasco of the government's investment in IT for the health service. Healthline brings us a US perspective to the debate on the use of IT in healthcare.
Aetiology discusses the shortage of trained medical staff in Africa as well as the reasons why those trained head towards developed countries. (Our own post here).
We have mentioned many times on this blog the fiasco of the government's investment in IT for the health service. Healthline brings us a US perspective to the debate on the use of IT in healthcare.
Friday, June 8, 2007
Advice to Overseas Doctors
The BMJ offers the following advice to overseas doctors coming to work in the UK "Resign yourself to the fact that there are just two seasons in Britain, mild winter and winter ...".
Meanwhile ...
A & E services at the hospital where Kezia was first diagnosed with leukaemia are being axed and replaced with an "urgent care centre". What I imagine Dr Crippen would term "dumbing down".
A local couple, with a son who suffers from severe convulsions and frequently has to be rushed there, requested a judicial review on the basis of a legally-flawed public consultation. This has just been rejected at London's High Court. The couple are now considering moving house to be nearer to an A & E Department.
We well remember going down there on the Sunday we arrived and quickly being referred by A & E to the Specialist Registrar in Paediatrics.
Meanwhile ... it is revealed that the North West Strategic Health Authority underspent by £161 million last year. The local MP commented "The money was intended to be spent on health services in the North West, not sit in the bank. The Pennine Acute Trust [which manages this A & E Dept] is cutting nearly 10 per cent of its beds with the loss of services to the community. I question why we should be making these cuts when the surplus retained by the Strategic Health Authority would more than meet the deficits of the Pennine Acute and other trusts in the North West."
A total of 221 beds will be cut across the Trust’s four hospitals. I would have thought this would imply some job cuts which would further help it cut its deficit. However, the Trust has assured its staff and the unions that this won't happen - just redeployments.
Meanwhile ... at this same hospital the Trust, which earned £1,533,496 last year from staff car parking, is increasing the car parking fee from £10 to £14 per month. I guess to help meet its deficits ... or to maintain its earnings when its staff are redeployed elsewhere or when it does start the job cuts.
A local couple, with a son who suffers from severe convulsions and frequently has to be rushed there, requested a judicial review on the basis of a legally-flawed public consultation. This has just been rejected at London's High Court. The couple are now considering moving house to be nearer to an A & E Department.
We well remember going down there on the Sunday we arrived and quickly being referred by A & E to the Specialist Registrar in Paediatrics.
Meanwhile ... it is revealed that the North West Strategic Health Authority underspent by £161 million last year. The local MP commented "The money was intended to be spent on health services in the North West, not sit in the bank. The Pennine Acute Trust [which manages this A & E Dept] is cutting nearly 10 per cent of its beds with the loss of services to the community. I question why we should be making these cuts when the surplus retained by the Strategic Health Authority would more than meet the deficits of the Pennine Acute and other trusts in the North West."
A total of 221 beds will be cut across the Trust’s four hospitals. I would have thought this would imply some job cuts which would further help it cut its deficit. However, the Trust has assured its staff and the unions that this won't happen - just redeployments.
Meanwhile ... at this same hospital the Trust, which earned £1,533,496 last year from staff car parking, is increasing the car parking fee from £10 to £14 per month. I guess to help meet its deficits ... or to maintain its earnings when its staff are redeployed elsewhere or when it does start the job cuts.
NHS in the Black
Dr Crippen is lost for words about the Department of Health's announcement that the National Health Service has made a £500 million surplus as, indeed, am I. But he points out that other commentators are not. The Devil's Kitchen managed to obtain an interview with our Health Secretary Patricia Hewitt.
Tuesday, June 5, 2007
UKALL 2003 - Maintenance I
Kezia started the first maintenance phase today with Vincristine and Dexamethasone. She was also meant to start mercaptopurine and oral methotrexate but these are neutrophil and platelet count dependent and and her neutrophils had not recovered sufficiently. This was expected. Her next visit is next Tuesday, I suspect just to see if her counts have recovered enough to start these medications
Maintenance cycles run in 12 week blocks. Every 4 weeks is Vincristine (one dose) and Dexamethasone for a week, Mercapturine every day and oral MTX once a week apart from the third week of each cycle when she will receive intrathecal MTX. All the maintenance cycles follow the same pattern until the end of treatment. For girls there are six maintenance cycles, boys get more.
The Hickman Line will be removed - but there is currently a three-month waiting list for this surgery. They will not install a Portacath unless she becomes very fractious with the Vincristine injections.
Maintenance cycles run in 12 week blocks. Every 4 weeks is Vincristine (one dose) and Dexamethasone for a week, Mercapturine every day and oral MTX once a week apart from the third week of each cycle when she will receive intrathecal MTX. All the maintenance cycles follow the same pattern until the end of treatment. For girls there are six maintenance cycles, boys get more.
The Hickman Line will be removed - but there is currently a three-month waiting list for this surgery. They will not install a Portacath unless she becomes very fractious with the Vincristine injections.
Aphorisms
Andy of Csikzereda Musings provided me with my original blog sub-title “I reserve the right to go off-topic and talk about anything I damned-well like”.
We have much in common – expats with no intention of leaving our adopted homes, young children – one “adopted” through our wife and one our own, working in the same institution in Portugal with a space between us of circa two years … and a love of foreign travel, cultures etc.
Thanks Andy for the loan of your words for the last few months.
An idea developed this weekend that I could make a collection of witty phrases and aphorisms when I come across those that seem wise and apt. To replace Andy’s, I will use one that is both wise and apt and perhaps, at the same time, somewhat glib and facile (courtesy of the 30 years deceased Natalie Barney).
Andy, I will put yours in our profile, and maybe change our sub-title aphorisms every few months and maybe make an online collection of them
If Oscar Wilde was alive, how would he use the Internet?
And, if you haven’t noticed, our new subtitle you will find above …
We have much in common – expats with no intention of leaving our adopted homes, young children – one “adopted” through our wife and one our own, working in the same institution in Portugal with a space between us of circa two years … and a love of foreign travel, cultures etc.
Thanks Andy for the loan of your words for the last few months.
An idea developed this weekend that I could make a collection of witty phrases and aphorisms when I come across those that seem wise and apt. To replace Andy’s, I will use one that is both wise and apt and perhaps, at the same time, somewhat glib and facile (courtesy of the 30 years deceased Natalie Barney).
Andy, I will put yours in our profile, and maybe change our sub-title aphorisms every few months and maybe make an online collection of them
If Oscar Wilde was alive, how would he use the Internet?
And, if you haven’t noticed, our new subtitle you will find above …
Monday, June 4, 2007
Patientline IV
Patientline, the telecomms service provider to patients in NHS hospitals, is in the news again - this time for pressurising patients to sign up for their services.
Friday, June 1, 2007
International Children's Day
Today, June 1st, is International Children’s Day, celebrated throughout the world except the U.K , the USA and … (let me know about your country).
Here it is more important for children than Christmas. Every school has been decorated for massive parties, every parent makes sure her/his child is in their finest, there will be music, food and games in every classroom.
Since Jaime started pre-school, we have been involved in this. Truly, a great, and fun occasion for the kids. A massive party with all their colleagues. I think the teachers do a marvellous job for the kids. As I drove past Jaime’s ex-primary school yesterday afternoon, I noticed the classrooms have been decorated with paper-chains etc.
For us, as Jaime and Kezia’s parents, it is quite sad that the U.K. does not celebrate this festival. Jaime is on half-term holiday this week.
Yes, I know that U.K. schools probably celebrate other holidays, in these days of multiculturalism (Xmas, Eids, Diwali etc), with equal vigour, but a neutral international day resolves all.
Holidays: Christmas Day in this essentially Christian country does not have much significance culturally – it is not a day of giving presents. It is not a special day for kids. When the immediate post-independence government renamed it Family Day they were actually recognising a reality.
Apart from today, the only other really big holiday of the year is New Year’s Day (1 January) when we all go to the beach to wash off the old year and put on new (or at least clean) clothes for the new year. The beaches are packed with picnicing families.
Presents: most people are too poor to get into present giving. However, the kids are thrilled to bits with a new shirt, dress, shoes etc. I remember that such items were not really considered presents in my childhood.
Here it is more important for children than Christmas. Every school has been decorated for massive parties, every parent makes sure her/his child is in their finest, there will be music, food and games in every classroom.
Since Jaime started pre-school, we have been involved in this. Truly, a great, and fun occasion for the kids. A massive party with all their colleagues. I think the teachers do a marvellous job for the kids. As I drove past Jaime’s ex-primary school yesterday afternoon, I noticed the classrooms have been decorated with paper-chains etc.
For us, as Jaime and Kezia’s parents, it is quite sad that the U.K. does not celebrate this festival. Jaime is on half-term holiday this week.
Yes, I know that U.K. schools probably celebrate other holidays, in these days of multiculturalism (Xmas, Eids, Diwali etc), with equal vigour, but a neutral international day resolves all.
Holidays: Christmas Day in this essentially Christian country does not have much significance culturally – it is not a day of giving presents. It is not a special day for kids. When the immediate post-independence government renamed it Family Day they were actually recognising a reality.
Apart from today, the only other really big holiday of the year is New Year’s Day (1 January) when we all go to the beach to wash off the old year and put on new (or at least clean) clothes for the new year. The beaches are packed with picnicing families.
Presents: most people are too poor to get into present giving. However, the kids are thrilled to bits with a new shirt, dress, shoes etc. I remember that such items were not really considered presents in my childhood.
Thursday, May 31, 2007
Commonweal
Commonweal is a nonprofit health and environmental research institute in Bolinas, California. Founded in 1976, Commonweal conducts programs that contribute to human and ecosystem health — to a safer world for people and for all life. One part of their work is a Cancer Help Program.
Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer by the organisation's founder Michael Lerner and available for free on Commonweal's website seems to be a very sensible guide to and survey of complementary approaches. It summarises any scientific evidence for an approach, is not afraid to admit it when there is no scientific evidence.
"I have seen no systematic cure for any form of cancer among the therapies currently described as "unconventional." This is an important finding. Conventional therapies, for all their real shortcomings, are capable of curing a number of cancers reliably. When I say I have seen no systematic cure for cancer among the unconventional therapies, this does not mean that I have seen no individual cures among people who have used unconventional therapies. In fact, there are well-documented examples of people who have recovered from "terminal" cancers using various unconventional cancer therapies. But these examples of individual recoveries from terminal cancers are not frequent enough to form a pattern that would allow me to say that there is a cure for any cancer among the unconventional therapies."
However, the role of complementary approaches in pain relief, psychological well-being, potential enhancement of conventional treatment, prevention. palliative care etc are discussed and in many cases there is solid evidence that they can be beneficial.
It also provides very sensible advice concerning the patient and physician's attitudes and approaches to conventional treatment.
Perhaps one glaring omission is the lack of a section on paediatric and young adult care. The use of music, art, drama, laughter, "bravery" stickers and certificates etc as therapy - a highpoint for Kezia of her stays at hospital have been the visits of the hospital clown!
Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer by the organisation's founder Michael Lerner and available for free on Commonweal's website seems to be a very sensible guide to and survey of complementary approaches. It summarises any scientific evidence for an approach, is not afraid to admit it when there is no scientific evidence.
"I have seen no systematic cure for any form of cancer among the therapies currently described as "unconventional." This is an important finding. Conventional therapies, for all their real shortcomings, are capable of curing a number of cancers reliably. When I say I have seen no systematic cure for cancer among the unconventional therapies, this does not mean that I have seen no individual cures among people who have used unconventional therapies. In fact, there are well-documented examples of people who have recovered from "terminal" cancers using various unconventional cancer therapies. But these examples of individual recoveries from terminal cancers are not frequent enough to form a pattern that would allow me to say that there is a cure for any cancer among the unconventional therapies."
However, the role of complementary approaches in pain relief, psychological well-being, potential enhancement of conventional treatment, prevention. palliative care etc are discussed and in many cases there is solid evidence that they can be beneficial.
It also provides very sensible advice concerning the patient and physician's attitudes and approaches to conventional treatment.
Perhaps one glaring omission is the lack of a section on paediatric and young adult care. The use of music, art, drama, laughter, "bravery" stickers and certificates etc as therapy - a highpoint for Kezia of her stays at hospital have been the visits of the hospital clown!
Wednesday, May 30, 2007
Radiotherapy, Radiotherapists, Africa and the NHS
I’m learning a lot.
Percentage rate of various cancer treatments (in the U.K.) goes along the following lines according to therapy:
Surgery: 49%
Radiotherapy: 40%
Chemotherapy: 11%
Hence AfrOx/IAEA emphasising radiotherapy over chemotherapy for developing world treatment. There is no mention in the AfrOx or PACT literature on surgical or chemotherapy control and training.
I also note that the IAEA is concentrating on the provision of Cobalt-60 machines. The numbers of the two types of machine in the U.K. are as follows:
Linear Accelarators: 199
Cobalts: 8
The report explicitly states “old cobalt machines”. So I wonder why the IAEA/PACT programme is concentrating on Cobalt-60 machines. Expense of LAs versus C-60s? Expense of maintaining LAs vs C-60s, simplicity of use or maintenance etc etc. I don’t know. But I hope the developing world is not being fobbed off …
So I’ll come on now to the NHS – there is no shortage of radiotherapy machines! Thank your deity etc …
Well, there is …
Radiotherapy capacity seems to be measured in MegaVolts per million population. I love that … visions of Frankenstein movies!
France: 6.12
England: 3.37
And when Italy (4.31 mV) beats England in the league tables, you have to be concerned!
The WHO recommends 5 machines per million. From 1997 to 2002 waiting times have became longer and the number of out-of-date machines has increased.
As in the rest of the NHS, there is a shortage of trained staff:
- a total of 431 of consultant oncologists with a shortage of 14%, and with an additional 262 clinical oncologists needed by 2010 taking into account attrition and increase in cancer occurrence. (Hi MTAS!)
- 17% shortage in therapy radiographers – “many departments are not able to use their full [equipment] capacity because of the lack of therapy radiographers”.
- 6.6% lack of physicists [essential for equipment maintenance] in some areas as high as 25%.
Need I say more …
Reference here.
Tuesday, May 29, 2007
Monday, May 28, 2007
How it is effecting me
A selfish post.
I miss the family something rotten. I look at their photos everyday. Now I have Skype at work I speak with them most days. Jaime is at school. The last few days Kezia doesn`t want to speak to me – that hurts. But then what does she think of me so far away?
I wrap myself up in work and this blog. I wrap myself up in anything to do with cancer treatments, the UK National Health Service, (recently) cancer in Africa, children and young adults with cancer, open-source medicine etc etc. I never go out apart from basics like shopping and getting the car fixed. Previous interests and hobbies have gone out of the window. And maybe they shouldn´t.
I come home from work to an empty house …
Weekends are horrible …
Kezia´s treatment – someone in a comment on another blog asked if scientific papers, reports etc make a difference to treatment decisions. No, I don’t question the wisdom of her treatment, because I think she is receiving state-of-the-art treatment, and because my own knowledge is limited. But I do want to understand the science behind it. I read all these medical papers, try to understand them and try to put them in plain-speak because I think carers and patients, with less education than I, also have the right to understand. Making any science accessible to the masses has to be an aim of a good scientist.
I think that maybe if Kezia´s treatment became/becomes difficult, if choices have to be made as parents … and certainly H., A.and S. have been put in this situation … then the more informed the better. The decisions that Josie Grove and Davo have taken, have to be and I hope were, based on their understanding.
I skype Nanda every treatment day to check everything is going to plan – they´re going to get back from hospital on time to pick up Jaime from school, they`re going to have to stay and who is going to pick up and care for Jaime?
And I worry about money. Every month, will there be enough? Here, at least, I can get credit at local stores, kiosks etc – but in the UK that must be very rare (small islands in NW Scotland?). Here I can defer bills (fuck, electricity bills are three months late and the PO Box is five months late, the last trip to the UK is only 40% paid, I owe the bank 200 pounds at the end of the month). But I must make sure Nanda has enough to pay bills, rent etc.
I miss the family something rotten.
I miss the family something rotten. I look at their photos everyday. Now I have Skype at work I speak with them most days. Jaime is at school. The last few days Kezia doesn`t want to speak to me – that hurts. But then what does she think of me so far away?
I wrap myself up in work and this blog. I wrap myself up in anything to do with cancer treatments, the UK National Health Service, (recently) cancer in Africa, children and young adults with cancer, open-source medicine etc etc. I never go out apart from basics like shopping and getting the car fixed. Previous interests and hobbies have gone out of the window. And maybe they shouldn´t.
I come home from work to an empty house …
Weekends are horrible …
Kezia´s treatment – someone in a comment on another blog asked if scientific papers, reports etc make a difference to treatment decisions. No, I don’t question the wisdom of her treatment, because I think she is receiving state-of-the-art treatment, and because my own knowledge is limited. But I do want to understand the science behind it. I read all these medical papers, try to understand them and try to put them in plain-speak because I think carers and patients, with less education than I, also have the right to understand. Making any science accessible to the masses has to be an aim of a good scientist.
I think that maybe if Kezia´s treatment became/becomes difficult, if choices have to be made as parents … and certainly H., A.and S. have been put in this situation … then the more informed the better. The decisions that Josie Grove and Davo have taken, have to be and I hope were, based on their understanding.
I skype Nanda every treatment day to check everything is going to plan – they´re going to get back from hospital on time to pick up Jaime from school, they`re going to have to stay and who is going to pick up and care for Jaime?
And I worry about money. Every month, will there be enough? Here, at least, I can get credit at local stores, kiosks etc – but in the UK that must be very rare (small islands in NW Scotland?). Here I can defer bills (fuck, electricity bills are three months late and the PO Box is five months late, the last trip to the UK is only 40% paid, I owe the bank 200 pounds at the end of the month). But I must make sure Nanda has enough to pay bills, rent etc.
I miss the family something rotten.
Small Island States
I would be interested to know about cancer control strategies for small island states. One radiotherapy machine in our own country, with a population of c.150,000, would bring us to a developed world ratio. Is this economically viable? The economies of scale make small island states, in every sector, very expensive.
Here we have an agreement with the ex-colonial power that serious medical cases are evacuated to Europe for treatment – this is clearly expensive and open to abuse and equally, the bureaucratic delays involved in such a system put the patient’s life at risk. Kezia would have been dead if we had had to rely on this system. Once a patient is within the healthcare system of the ex-colonial power, institutional racism often leads to unsatisfactory treatment.
But, even if cancer treatment facilities are to remain unavailable here, diagnostic facilities require vast improvement. The techniques/skills to accurately diagnose Kezia’s leukaemia were unavailable. A programme to promote PAP smear testing (or even vaccination) for cervical cancer (one of the most common forms of cancer in Africa) would be economically viable and effective.
I imagine in the Caribbean, with far more small island states than around Africa, the inter-state healthcare network is far more developed. But still the expense, both to the states involved and the individuals must be crippling. In the Pacific I imagine the far-greater distances involved make the challenge of providing adequate heathcare even greater.
I hope to look into this further.
Here we have an agreement with the ex-colonial power that serious medical cases are evacuated to Europe for treatment – this is clearly expensive and open to abuse and equally, the bureaucratic delays involved in such a system put the patient’s life at risk. Kezia would have been dead if we had had to rely on this system. Once a patient is within the healthcare system of the ex-colonial power, institutional racism often leads to unsatisfactory treatment.
But, even if cancer treatment facilities are to remain unavailable here, diagnostic facilities require vast improvement. The techniques/skills to accurately diagnose Kezia’s leukaemia were unavailable. A programme to promote PAP smear testing (or even vaccination) for cervical cancer (one of the most common forms of cancer in Africa) would be economically viable and effective.
I imagine in the Caribbean, with far more small island states than around Africa, the inter-state healthcare network is far more developed. But still the expense, both to the states involved and the individuals must be crippling. In the Pacific I imagine the far-greater distances involved make the challenge of providing adequate heathcare even greater.
I hope to look into this further.
International Atomic Nuclear Agency
We normally associate the IAEA with monitoring nuclear power and weapons programmes in countries such as Iran and North Korea. Its current head, Mohamed El-Baradei, ever the diplomat and much respected, is often seen on television talking about such issues. I have much respect for him, a voice of calm and reason in wars of rhetoric that seem to be on the brink of actual wars.
However, there are other aspects to the agency’s work. As its charter says, “the IAEA carries out programmes to maximize the useful contribution of nuclear technology to society while verifying its peaceful use”.
One little known activity of the IAEA is, therefore, the promotion of radiotherapy techniques, equipment and training for cancer treatment in the “developing” world through its Programme of Action for Cancer Therapy (PACT).
In most developed countries there is a ratio of one radiotherapy machine per 250,000 inhabitants. In developing countries it is more common to find ratios of one machine per several million inhabitants. Fifteen countries in Africa have no radiotherapy facilities at all. In Ethiopia the IAEA has provided one machine which serves a population of c. 60 million (i.e. comparable to the U.K. which has 207 machines, one per 290,000 inhabitants: reference). In its first four years of operation 1300 people were treated with a four year survival rate of 50%. The survival rate is not as good as the developed world, principally because diagnosis is frequently at a stage when the disease is far advanced. The IAEA is working with 22 countries (not ours) in Africa.
The IAEA estimates that $2.5 billion over ten years is needed to provide adequate facilities in the developing world with half that sum being allocated to training (refreshingly given Friday´s post on human resources).
The recent Cancer Control in Africa conference (posts here, here and here) was a joint initiative between AfrOx and the IAEA.
Reference here.
However, there are other aspects to the agency’s work. As its charter says, “the IAEA carries out programmes to maximize the useful contribution of nuclear technology to society while verifying its peaceful use”.
One little known activity of the IAEA is, therefore, the promotion of radiotherapy techniques, equipment and training for cancer treatment in the “developing” world through its Programme of Action for Cancer Therapy (PACT).
In most developed countries there is a ratio of one radiotherapy machine per 250,000 inhabitants. In developing countries it is more common to find ratios of one machine per several million inhabitants. Fifteen countries in Africa have no radiotherapy facilities at all. In Ethiopia the IAEA has provided one machine which serves a population of c. 60 million (i.e. comparable to the U.K. which has 207 machines, one per 290,000 inhabitants: reference). In its first four years of operation 1300 people were treated with a four year survival rate of 50%. The survival rate is not as good as the developed world, principally because diagnosis is frequently at a stage when the disease is far advanced. The IAEA is working with 22 countries (not ours) in Africa.
The IAEA estimates that $2.5 billion over ten years is needed to provide adequate facilities in the developing world with half that sum being allocated to training (refreshingly given Friday´s post on human resources).
The recent Cancer Control in Africa conference (posts here, here and here) was a joint initiative between AfrOx and the IAEA.
Reference here.
Friday, May 25, 2007
Cancer in Africa II
The ex-colonial power has been running its neo-colonialist Africa television channel here for 24 hours a day for several years. Today it took a programme from the television service of another ex-colony, much much larger than ours, and interviewed an African oncologist, working in his own country.
He certainly tried to explain as he best could to the general public the ins-and-outs of white blood counts and regretted that a haematologist had not also been invited on the programme. He described the limited facilities in his country. A country with a population of 14.5 million, a geographical area of 1.25 million square kilometres and only two hospitals in the capital city that can treat cancer.
Meanwhile the BBC here discusses a Medecins Sans Frontieres report (and press release) bemoaning the vast shortages of medical staff in Africa (albeit in the context of HIV/AIDS but it applies to all areas of medical care). It cites, for example, the fact that in 2005 in Malawi only 44 nurses qualified whilst 86 left the country. The shortage of doctors has led the head of MSF in South Africa to suggest that nurses be given the power to write prescriptions (you'd love that Dr Crippen!). The WHO recommends a minimum of 20 doctors per 100, 000 people - Lesotho has five, Malawi has two and Mozambique has 2.6. MSF points to the irony of donors loving to build new health facilities but who are unwilling to invest in the human resources to staff them and thus they stand empty.
He certainly tried to explain as he best could to the general public the ins-and-outs of white blood counts and regretted that a haematologist had not also been invited on the programme. He described the limited facilities in his country. A country with a population of 14.5 million, a geographical area of 1.25 million square kilometres and only two hospitals in the capital city that can treat cancer.
Meanwhile the BBC here discusses a Medecins Sans Frontieres report (and press release) bemoaning the vast shortages of medical staff in Africa (albeit in the context of HIV/AIDS but it applies to all areas of medical care). It cites, for example, the fact that in 2005 in Malawi only 44 nurses qualified whilst 86 left the country. The shortage of doctors has led the head of MSF in South Africa to suggest that nurses be given the power to write prescriptions (you'd love that Dr Crippen!). The WHO recommends a minimum of 20 doctors per 100, 000 people - Lesotho has five, Malawi has two and Mozambique has 2.6. MSF points to the irony of donors loving to build new health facilities but who are unwilling to invest in the human resources to staff them and thus they stand empty.
Wednesday, May 23, 2007
A Leukaemia Birthday
On the 20th May last year we left our home in Africa and headed to the UK – a very sick Kezia and the rest of us would enter a life with leukaemia the next day. The story of our certain escape from Kezia`s death is recounted here.
Next week, Tuesday, will be the end of the first year of treatment, passing from visits to the hospital 2-3 times a week to 2-3 times a month.
Between these two occasions, we would like to thank the many people who have helped us, whether materially, morally, through their work. Sorry it is all initials those mentioned, if they read this, will know who they are. If, as this is written, we have forgotten anyone, many apologies …
First, and in chronological order, our doctors here, Noel, Bemvinda and Irene who told us to “get her out” (or she”ll be dead within 1-2 weeks), my ambassador R, my Consul R. and my Honorary Consul J. for getting us all to the UK in three days, to L at the local travel agency for giving us credit on the tickets.
To Dr. K. and his team at the local general hospital in the U.K., who did the original preliminary diagnosis and arranged our immediate transfer to the RMCH.
Very especially to the RMCH, to our consultant Dr. J. and our Clic Sargent social worker T. To the other doctors, the nursing staff, the lab staff, the porters, cleaners, canteen staff etc etc. Two particular nurses on Borchardt Ward, H. and E., many thanks, you know who you are. And the voluntary ambulance drivers who show us such love.
To our Primary Care Trust healthworker, C.
To the anonymous bureaucrats in the Immigration and Nationality Service who extended Nanda´s leave to stay and allowed Jaime to be with his mum.
To Jean, the Primary Care Trust accountant, who asked no questions.
To our friends that we made in the first four weeks on Borchardt Ward – A. and H. They symbolise the courage that cancer. To their husband and father S. now with terminal cancer.You inspire us.
To Lucia, a friend of H.´s, and a colleague in Borchardt, but who we met coincidently over the Internet. You are also an inspiration.
To Sao, Nanda´s long-lost cousin in the UK.
To B. and R. at the Hotel M., here, for both moral and material support – you have been friends for so long, I lament your leaving now.
To T. here for continuing support and the donation of a laptop.
To Aunty Laura who rings every week and her daughters Jessica and Philippa.
For me here in Africa:
To Myron, who I met only recently, and to your wife dying from cancer now. I think of you lots. Please show her a photo of Kezia – I look at the family photo you left everyday.
To Henry, Charles, Tom, Martinho and all my other work colleagues.
To my neighbours, Kini and others who look out for me and help out whenever they can.
To Hamilton and Kiste who work for us here. You have helped me so much without family around me and to protect me. You have been through thick and thin with me, your trust I value beyond words.
To the people in the blogosphere who inspire me to keep this going: Alex, Kathryn, Andy, Patty, John Crippen, Rob and Lauren, Potentilla etc.
Last and above all others – my brother Pete, my sister-in-law Paula and our friend Margaret … there are no words to express what we feel.
And finally I will say thank you to all those who work in and all those who believe in the NHS for letting our daughter live the past year.
Next week, Tuesday, will be the end of the first year of treatment, passing from visits to the hospital 2-3 times a week to 2-3 times a month.
Between these two occasions, we would like to thank the many people who have helped us, whether materially, morally, through their work. Sorry it is all initials those mentioned, if they read this, will know who they are. If, as this is written, we have forgotten anyone, many apologies …
First, and in chronological order, our doctors here, Noel, Bemvinda and Irene who told us to “get her out” (or she”ll be dead within 1-2 weeks), my ambassador R, my Consul R. and my Honorary Consul J. for getting us all to the UK in three days, to L at the local travel agency for giving us credit on the tickets.
To Dr. K. and his team at the local general hospital in the U.K., who did the original preliminary diagnosis and arranged our immediate transfer to the RMCH.
Very especially to the RMCH, to our consultant Dr. J. and our Clic Sargent social worker T. To the other doctors, the nursing staff, the lab staff, the porters, cleaners, canteen staff etc etc. Two particular nurses on Borchardt Ward, H. and E., many thanks, you know who you are. And the voluntary ambulance drivers who show us such love.
To our Primary Care Trust healthworker, C.
To the anonymous bureaucrats in the Immigration and Nationality Service who extended Nanda´s leave to stay and allowed Jaime to be with his mum.
To Jean, the Primary Care Trust accountant, who asked no questions.
To our friends that we made in the first four weeks on Borchardt Ward – A. and H. They symbolise the courage that cancer. To their husband and father S. now with terminal cancer.You inspire us.
To Lucia, a friend of H.´s, and a colleague in Borchardt, but who we met coincidently over the Internet. You are also an inspiration.
To Sao, Nanda´s long-lost cousin in the UK.
To B. and R. at the Hotel M., here, for both moral and material support – you have been friends for so long, I lament your leaving now.
To T. here for continuing support and the donation of a laptop.
To Aunty Laura who rings every week and her daughters Jessica and Philippa.
For me here in Africa:
To Myron, who I met only recently, and to your wife dying from cancer now. I think of you lots. Please show her a photo of Kezia – I look at the family photo you left everyday.
To Henry, Charles, Tom, Martinho and all my other work colleagues.
To my neighbours, Kini and others who look out for me and help out whenever they can.
To Hamilton and Kiste who work for us here. You have helped me so much without family around me and to protect me. You have been through thick and thin with me, your trust I value beyond words.
To the people in the blogosphere who inspire me to keep this going: Alex, Kathryn, Andy, Patty, John Crippen, Rob and Lauren, Potentilla etc.
Last and above all others – my brother Pete, my sister-in-law Paula and our friend Margaret … there are no words to express what we feel.
And finally I will say thank you to all those who work in and all those who believe in the NHS for letting our daughter live the past year.
Tuesday, May 22, 2007
UKALL 2003 - Delayed Intensification II contd
Kezia had Vincristine and her last PegAsparaginase today and they are home already.
Lots of small milestones the last few weeks - the last of this drug, the last of that drug, Next week sees the first Big Milestone - the last dose of this phase (Vincristine) and then we're into the much less intensive maintenance phases! Looking forward to it! Vinvcristine once a month through the maintenance phases.
Lots of small milestones the last few weeks - the last of this drug, the last of that drug, Next week sees the first Big Milestone - the last dose of this phase (Vincristine) and then we're into the much less intensive maintenance phases! Looking forward to it! Vinvcristine once a month through the maintenance phases.
Monday, May 21, 2007
The London Declaration
I post here the “London Declaration on Câncer Control in Africa”. My own comments are in brackets and bold. My first comment though is here … no African cancer patient or carer attended.
I am totally supportive of this project. Our daughter, Kezia, could/would be one of the 95% non-survivors in Africa, if I had not been able to take her to the U.K. to receive treatment under the U.K. National Health Service.
The entire London Declaration is below, my commentary is in square brackets and bold.
Background
Over 130 leaders in all aspects of World Health and Cancer Control gathered in London for a 2 day meeting, chaired by Prof David Kerr [head of Department of Clinical Pharmacology, University of Oxford], the Rt. Hon. Alan Milburn [former UK Secretary of State for Health] and Sir John Arbuthnott [microbiologist and Chairman of Greater Glasgow NHS Board] [why not an African chair member?], to discuss how best to bring comprehensive cancer care to African countries. This meeting built on two previous international conferences, held in 2006, that addressed the issue of the cancer burden in all developing countries (The Cape Town Meeting organized by the International Atomic Energy Agency, IAEA and the World Cancer Congress in Washington DC organized by the International Union against Cancer, UICC). There is a growing awareness of the magnitude of the cancer problem in the developing world and a sense of urgency regarding the need to take immediate action. Prof David Kerr, University of Oxford, has recently set up a new organisation to enable the delivery of comprehensive cancer care to African countries, AfrOx, whose mission is to enable the delivery of comprehensive cancer care to African countries.
Impending African Crisis
African countries will account for over a million new cancer cases a year and they are the least able of all developing countries to cope, having few cancer care services. Lack of resources and basic infrastructure mean that most Africans have no access to cancer screening, early diagnosis, treatment or palliative care. Life-saving radiotherapy is available in only 21 of Africa’s 53 countries [and chemotherapy?], or to less than 20% of the population [much less than 20% I suspect given that such facilities will be concentrated in private medical facilities in large cities], and consequently cancer is a sentence to a painful and distressing death. At the same time over one third of cancer deaths are due to preventable causes such as viral infections, poor nutrition and widespread tobacco use [and the other 66%?]. Cancer in the developing world knows no age limits. It is estimated that 100,000 children die unnecessarily fom cancer in the developing world each year. In Africa, on average 5% of childhood cancers are cured, compared to nearly an 80% cure rate in the developed world [WAH! There goes our daughter Kezia!]. In terms of cancer care, the disparities between the standard of care in developed and developing world countries couldn’t be greater. In addition, in many African countries the combined effects of of cancer, poverty, deprivation and infectious diseases hinder the development of a sustainable population and consequently a sustainable future.
The only way to effectively prevent, detect, and treat the rising number of cancers in the developing world is to develop broad and effective partnerships of research institutions, international organizations, NGOs, national governments in developed and developing countries and the pharmaceutical industry. Strong local and international leadership is essential.
The relevant organisations and individuals, with funds from governments and private donors, must be brought together to develop achievable and sustainable national cancer plans that are evidence based, priority driven and resource appropriate for African countries, and we are committed to doing this.
Purpose
The purpose of this London Declaration is to raise awareness of the magnitude of the cancer burden in Africa and to call for immediate action to bring comprehensive cancer care to African countries.
It builds on the World Health Assembly Resolution on Cancer Prevention and Control (2005) and on previous Declarations from the International Atomic Energy Agency (Cape Town Declaration on Cancer Control in Africa, Dec 2006) and the International Union Against Cancer (World Cancer Declaration, July 2006). [only now? How long has it taken for the international professional health community to wake up? Better late than never].
We are calling on research institutions, international organisations, the pharmaceutical industry and national governments and civil society in developed and developing countries to unite and work together to enable the delivery of comprehensive cancer care to Africa. To establish comprehensive cancer care programmes in Africa requires the integration of clinical and public health systems so as to be truly comprehensive. A comprehensive cancer control strategy must bring together prevention, early detection and diagnosis, treatment, palliative care and the investment needed to deliver these services in terms of trained staff, equipment, relevant dugs and information systems, as well as public education. Any cancer control strategy must be guided by the needs of the country. Our vision for cancer control in Africa is a model authored by the Member State , with technical, policy and financial support provided by inter-agency alliances and governments in the developed world. African governments must be the driving force behind implementing cancer control in their countries with support at every level provided by the international alliance. Only in this way can achievable and sustainable national cancer plans that are evidence based and resource appropriate for African countries be developed.
There are grounds for optimism. With concerted early action cancer in Africa is a disease that can be tackled.
There are a number of fundamental areas of cancer control that form the cornerstones o f comprehensive cancer control programmes. The Six Essential Steps are:
Cancer surveillance/registries and national cancer plans
- Cancer surveillance programmes, including population based cancer registries, are required to collect and analyze data on the scale of the cancer burden in each country. They provide essential information on the incidence, prevalence, trends, mortality and survival rates which is required to help develop a realistic and sustainable national cancer plan. In addition, they help to evaluate the impact f prevention, early detection/screening, treatment and palliative care programmes. Such programmes must be fully supported by governments to ensure that they are complete and comprehensive.
African countries must be supported and assisted in developing sustainable national cancer plans that are evidence based, priority driven and resource appropriate for African countries. It is essential that national cancer plans be integrated with wider development by African governments to ensure a balanced health system is put in place according to national priorities.
Prevention programmes
In 2002 in Sub-Saharan Africa, there were more than half a million cancer deaths and almost 40% of these deaths can be explained by chronic infection and tobacco usage.
- Vaccination programmes against Hepatitis B virus, which causes liver cancer, and human papilloma virus, which causes cervical cancer, are effective ways to reduce the growing cancer burden and should be made widely available.
- Similarly, reducing tobacco consumption will also prevent many cancer related deaths. While lung cancer is on the increase in Africa, there is a real opportunity to avoid a lung cancer epidemic by implementing effective tobacco control now. Countries should be encouraged to implement the effective strategies identified in the WHO Famework Convention on Tobacco Control (FCTC). Simple steps such as implementing a ban on smoking in the workplace and in public places can be very effective.
Early diagnosis and screening programmes
Treatment
- It is thought that up to one third of cancers in the developing world are curable if treated early. In particular childhood cancers have a high cure rate.
- Effective treatment programmes need to be put in place.
- Access to radiotherapy facilities is essential for both treatment and palliation. [and what about chemotherapy?]
Palliative care
- Palliative care is an essential part of the continuum of care of all adult and childhood cancer patients. For terminal cancers, palliative care is essential. Pain and symptom control, coupled with counselling and spiritual care, enables patients to die with dignity, preventing painful and distressing death.
- Palliative care should be introduced as early as possible to produce effective pain abd symptom control during disease progression, terminal and bereavement care.
- Palliative care must be introduced into health policies and be included in training at all levels.
- Accessibility of pain relieving medication, particularly morphine, is essential.
Training and Research
- A major obstacle tin the provision of adequate health care in Africa is the lack of trained health care professionals. The fundamental importance of having staff with appropriate training across the disciplines (clinical, management, logistics) cannot be overestimated, together with improved working conditions and increased job satisfaction.
- Established international cancer institutes and other training and health institutions have a major role. They should establish and implements mentoring and training programmes for African health professionals and scientists and help with capacity building partnerships with African institutions. The Global Health Workforce Alliance is currently coordinating an international effort on training of heathcare professionals.
- New local healthcare personnel must be trained so as to increase capacity and not drain the existing talent from other local needs in both the public and private sectors. This is necessary to ensure a long term sustainable workforce of healthcare professionals. African governments need to be helped to develop the much needed additional capacity.
- Training and research is a multilateral issue that links into employment and salary issues that must be addressed by the WHO, the IMF, the World Bank and other similar organisations. Sustained funding is necessary to ensure sustained funding.
The London Declaration is a call to action directed at all organizations: governments, international agencies, research bodies, global funders, the pharmaceutical industry, individual benefactors and NGOs.
Commentary
In addition to my, maybe somewhat flippant, inline comments above, I do have some additional commentary to add.
The emphasis on radiotherapy. Chemotherapy medications were not mentioned at all – our daughter Kezia is not receiving any radiotherapy at all but we have been led to understand that the medications she is receiving are expensive and that they would be beyond the heathcare budgets of most African countries. Cynically, I wonder if this was due to the presence of pharmaceutical industry representatives at the conference. There is no discussion of access to drugs, property rights etc in the declaration. Given that countries such as India, Brazil and South Africa are taking on the pharmaceutical industry over the issue of producing cheap forms of drugs used in the treatment of HIV/AIDS, I am somewhat surprised this was not an issue addressed in the conference´s final declaration. On the positive side I will note that AfrOx is talking to GlaxoSmithKline about making its HPV/cervical cancer vaccine available in Africa.
Employment, training and salary issues, addressed in the last clause of the declaration, are certainly serious. Typically a doctor here has received the minimum medical training in Cuba, Russia, China, Portugal etc. No specialist training. Specialists are usually provided by the donor community and are often not available. There is no oncologist here. And even if there were, many of the tools of the trade would not be available.
Lumping together chronic infection and tobacco usage as major causes of cancer mortality in Africa is not useful. Yes, tobacco usage and related cancers are a significant cause of cancer throughout the world – “chronic infections” is a whole gamut of things.
To conclude I am very happy to see this initiative. I sincerely hope the international community takes action along the lines indicated.
Update: AfrOx has now published the London Declaration here.
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