THIS JUST CAME IN FROM BREAST CANCER VOICES....PLEASE COMMENT. TIMELY, INNIT??? WE NEED TO MAKE USE OF THESE SURVEYS TO CHANGE THE STATUS QUO....
Dear Breast Cancer Voice,
Standards of Care for people with secondary breast cancer
I am contacting you as members of Breast Cancer Voices who are all keen to comment on our secondary breast cancer campaigning work. We have recently drafted a set of Standards of Care for people with secondary breast cancer which we would very much appreciate your comments on. I would very much appreciate your comments by Thursday 30 April.
The Standards of Care are for people with secondary breast cancer and the aim of them is to:
Make them aware of the care they should be receiving
Offer suggestions as to how to get this care for themselves
Explain how they can become a ‘champion’ of the standards in their area and get involved with their cancer network to improve care for themselves and others with secondary breast cancer (if they want to)
As you all know we produced the Secondary Taskforce final report last November and in essence this is a version for patients. We see part of the campaign of implementing all of the Taskforce recommendations is giving patients the tools to be able to influence change locally. Hopefully it should empower patients and also give them the knowledge to be able to campaign if they want to.
The standards will be produced in two formats: a ‘Taking Action’ booklet and a summary leaflet.
I would welcome any comments you have on the Taking Action document – in particular:
Do you have any other suggestions about how patients could influence change locally?
I would like to include as many quotes and case studies as possible from patients and healthcare professionals throughout (see blue text). If you have experience relating to any of the issues highlighted in this document please do share this with us and make it clear if you are happy for us to use your quote and name in the document.
Now the Taskforce has ended we are looking for a new name for our secondary breast cancer campaigning work – any suggestions would be very welcome.
In terms of dissemination, the leaflet will be included in our secondary breast cancer resource pack and patients will have to contact us for the ‘Taking Action’ document.
Also to let you know we will be launching these documents at two events:
in Scotland on the 4th June at Scottish Parliament
in England on 16th June at the RussellHotel, London
Breast Cancer Voices will be invited to these events – please look out for more information and keep these dates free.
If you have any questions please do get in touch. Thank you in advance for any comments/or feedback on this document you are able to give, it is greatly appreciated.
I look forward to hearing from you.
Many thanks and kindest regards
Vicky Lane
User Involvement Manager
vicky.lane@breastcancercare.org.uk
Breast Cancer Care
5-13 Great Suffolk Street , LondonSE1 0NS
Direct line: 020 7960 3447 Switchboard: 0845 092 0800
http://www.breastcancercare.org.uk/
Registered charity in England and Wales 1017658
Registered charity in Scotland SC038104
Registered In England company no 2447182
Secondary Breast Cancer Taskforce
Breast Cancer Care’s Secondary Breast Cancer Taskforce has published its findings and recommendations to improve the treatment, care and support for people with secondary breast cancer . Breast Cancer Care will now be taking the work of the Taskforce forward. To read the final report and other materials visit www.breastcancercare.org.uk/secondarytaskforce
P please consider the environment before printing this e-mail
Breast Cancer Care
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Registered office: 5-13 Great Suffolk Street, London SE1 0NS.
Company registered in England and Wales: number 2447182.
Charity registration numbers: 1017658 in England and Wales, SC038104
in Scotland.
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Tuesday, 21 April 2009
Sunday, 19 April 2009
STATEMENT OF INTENT
Three weeks ago, I ws diagnosed with a small brain lesion, following months of to-ing and fro-ing to the GP Practice, trying to get help for a number of viruses. That'll teach me!
Oncologist - brilliant as ever - has fired my belly with steroids, and I am determined not to be floored at the last post by some fuckwit GP receptionists with no education....If I can do this with a brain TUMOR, then at leat I can feel I did something.....
WHAT FOLLOWS IS AN EXTRACT FROM THE COMPLAINTS FILE I AM BUIDLING AGAINST THIS PRACTICE....CANCER PATIENTS REALLY SHOULD NOT HAVE TO DEAL WITH THIS SHIT....LET'S KICK SOME ASS!
'STATEMENT OF INTENT'
'It is high time that this culture of poorly-trained personnel and inadequate systems that are undermining the excellent work done by Clinicians and Practitioners within the wider community in Cornwall be exposed for what it is. As an example of good practice, I would recommend Plymouth HealthCare at Home as the type of efficient, courteous, and fundamentally intelligent (and deniability-free) service that should be open to all NHS patients, not just oncology patients like myself receiving long term palliative treatment at home. I have spoken to many patients of your GP Practice at 27 Lemon Street Truro who have been systematically fobbed off by the incompetent clerks in your reception area. This would not happen in the private sector (‘’You’re fired!); and it should not happen in the NHS, affecting the lives of vulnerable people - many far more vulnerable than I, who are unable to defend themselves. With the GP Patient Survey well underway, I expect you shall be hearing from the Health Authority, and I will also forward copies of my dossier to my MP. ....
There are other, Public Health issues too, which I will make widely known about your Practice management. The last time I waited over an hour in your downstairs waiting room (with a witness, who accompanied me) the lavatory was backing up with a foul smell from the drains seeping into the germ-filled, airless room. Completely unacceptable. The upstairs reception area is exposed. shabby, dirty, mean-spirited, lacking in privacy - hardly a place for the sick! The last time I stood waiting to book in upstairs, the receptionist saw me waiting then turned - ostentatiously - to make a phone call. This was after I had promised Dr Boyle I would come down to surgery (even though I had laid at home in bed for the best part of a week). I waited over half an hour (with 2 further checks with reception to sound out reasons for the delay - because I was feeling dizzy and unable to stand). I told the Doctor, when he eventually came to fetch me, that I simply could not do this any more.
That said, the only congruent response to my complaint I have had from the Practice so far has been via a personal telephone call to me yesterday morning (albeit a week after the events of 7 April) from the courteous and concerned Dr Boyle. I told him that it is a great pity that his care of his patients is being so systematically compromised by your shabby, excuse-riddled band of clerks. And, for cancer patients, it is an even greater shame that the work of The Sunrise Centre, a centre of clinical excellence in Cornwall, is being compromised by people with no medical training whatsoever (and, apparently, very little clerical training, even in something as fundamental as basic email systems!). These are the sort of people who enable sinister administrations to push the sick and vulnerable into the gas chambers - well, not me..'.
Oncologist - brilliant as ever - has fired my belly with steroids, and I am determined not to be floored at the last post by some fuckwit GP receptionists with no education....If I can do this with a brain TUMOR, then at leat I can feel I did something.....
WHAT FOLLOWS IS AN EXTRACT FROM THE COMPLAINTS FILE I AM BUIDLING AGAINST THIS PRACTICE....CANCER PATIENTS REALLY SHOULD NOT HAVE TO DEAL WITH THIS SHIT....LET'S KICK SOME ASS!
'STATEMENT OF INTENT'
'It is high time that this culture of poorly-trained personnel and inadequate systems that are undermining the excellent work done by Clinicians and Practitioners within the wider community in Cornwall be exposed for what it is. As an example of good practice, I would recommend Plymouth HealthCare at Home as the type of efficient, courteous, and fundamentally intelligent (and deniability-free) service that should be open to all NHS patients, not just oncology patients like myself receiving long term palliative treatment at home. I have spoken to many patients of your GP Practice at 27 Lemon Street Truro who have been systematically fobbed off by the incompetent clerks in your reception area. This would not happen in the private sector (‘’You’re fired!); and it should not happen in the NHS, affecting the lives of vulnerable people - many far more vulnerable than I, who are unable to defend themselves. With the GP Patient Survey well underway, I expect you shall be hearing from the Health Authority, and I will also forward copies of my dossier to my MP. ....
There are other, Public Health issues too, which I will make widely known about your Practice management. The last time I waited over an hour in your downstairs waiting room (with a witness, who accompanied me) the lavatory was backing up with a foul smell from the drains seeping into the germ-filled, airless room. Completely unacceptable. The upstairs reception area is exposed. shabby, dirty, mean-spirited, lacking in privacy - hardly a place for the sick! The last time I stood waiting to book in upstairs, the receptionist saw me waiting then turned - ostentatiously - to make a phone call. This was after I had promised Dr Boyle I would come down to surgery (even though I had laid at home in bed for the best part of a week). I waited over half an hour (with 2 further checks with reception to sound out reasons for the delay - because I was feeling dizzy and unable to stand). I told the Doctor, when he eventually came to fetch me, that I simply could not do this any more.
That said, the only congruent response to my complaint I have had from the Practice so far has been via a personal telephone call to me yesterday morning (albeit a week after the events of 7 April) from the courteous and concerned Dr Boyle. I told him that it is a great pity that his care of his patients is being so systematically compromised by your shabby, excuse-riddled band of clerks. And, for cancer patients, it is an even greater shame that the work of The Sunrise Centre, a centre of clinical excellence in Cornwall, is being compromised by people with no medical training whatsoever (and, apparently, very little clerical training, even in something as fundamental as basic email systems!). These are the sort of people who enable sinister administrations to push the sick and vulnerable into the gas chambers - well, not me..'.
Monday, 26 January 2009
KNITTED BREASTS: A MASTECTOMY AID?
An eighty-four year old woman from the South East has been knitting breasts to help new mothers learn how to feed their babies (BBC report). There could well be an application here for women who have had mastectomies, the knitted boobs being far cosier (and, strangely, more comforting) than the 'comfie' given out in hospitals post op. When I got my 'comfie' (this being the interim padding women are given before they are able to wear the custom-fitted silicone breastform), I was told I would have to weight it down with dried peas or shells (!) to match the hang of the remaining breast.
But I wonder if the knitted boob could be therapeutic - a way of coming to terms with the inevitable? Before my daughter was born, I spent hours on the sofa (with my late lamented labrador bitch), crocheting cot blankets and shawls (although these turned out to be somewhat redundant since the baby slept with me as I was breastfeeding her...). Had I known about the knitted boob pattern, I'd have adapted it for my own needs prior to the mastectomy. It might have proved a talking point at least!
But I wonder if the knitted boob could be therapeutic - a way of coming to terms with the inevitable? Before my daughter was born, I spent hours on the sofa (with my late lamented labrador bitch), crocheting cot blankets and shawls (although these turned out to be somewhat redundant since the baby slept with me as I was breastfeeding her...). Had I known about the knitted boob pattern, I'd have adapted it for my own needs prior to the mastectomy. It might have proved a talking point at least!
Saturday, 24 January 2009
Home run....
On the clearway now to 50, and feeling marvellous! My nurse, Sarah, said it's the Time of the Crone: a stage where women can begin to be free of cultural crap like looking good to attract or please men (although I don't quite feel ready to let myself go along the frizzy hair and hairy armpits tack - not just yet) and confident in their exchanges, with an assurance that comes from life experience and wisdom. That's not to say there won't be plenty of stupid fifty year old women (what will Jordan-Boob-Jobs be like at fifty, I wonder? She's raddled enough at thirty...Look at Madonna, described by her latest ex husband as a piece of gristle). I'm grateful, simply, to be where I am: an Amazonian matron who has survived 4 years on palliative treatment for advanced breast cancer. To have seen my daughter mature into her teens in these difficult years and achieve a scholarship to one of the best schools in this country (and certainly the noblest) is quite enough. That is a life IN FULL. (And I have published 3 novels, with another on the way, and run a successful education business and - so I'm told - helped countless students along the way.) Not used to blowing my own trumpet. But this is what counts, surely, the legacy one leaves - not a major party with a load of freeloading guests who may or may not be good friends? Blowing money on immaterial (though expensive) ephemeral 'milestones' - like stupid white wedding jamborees - has always been a complete nonsense for me. It's not that I'm mean or that I don't celebrate my friends. On the contrary: I am deeply grateful to all my friends, especially to those who (unlike my mean-spirited family) came forward to support and comfort me when I was on my own and facing chemo for the first time; and I do try to show it whenever I can (I hope) - not just on my birthday. I hope my friends know how much I appreciate them. They know who they are. So if they don't get an invitation to a 50th birthday party from me in a month's time, I hope they will understand that I am celebrating quietly, just glad to have made it this far.
Best of all, yes, best of all: at 50, finally, I can liberate myself from the curse of my indifferent mother and from all those, in the now thankfully distant past, who have sought to undermine me or hold me back in some undefinable way. You won't be reading this, of course, so I could freely name you - but I can't be arsed any more! Yippee!
Best of all, yes, best of all: at 50, finally, I can liberate myself from the curse of my indifferent mother and from all those, in the now thankfully distant past, who have sought to undermine me or hold me back in some undefinable way. You won't be reading this, of course, so I could freely name you - but I can't be arsed any more! Yippee!
Tuesday, 6 January 2009
CELL PHONE HELL
A great big Boo to the idiot policy makers who decided to allow the free use of mobile phones in NHS hospitals (with the exception of scanner and other high tech rooms, of course). As far as I'm concerned, this will make the prospect of a hospital stay - or even a clinic visit -even more unbearable, not to mention the fear of being happy-snapped by some fuckwit with a cameraphone ('I'm at the hospital....See this woman with her breast removed.... Cop this pic of the crash trolley...') It is usually visitors, in my experience, not the patients themselves, who are guilty of crass behaviour in hospital. This could be to do with fear, or a sort of superiority - a drive to prove they're not physically sick (though often mentally retarded). Whatever it is, they're a nuisance, and the use of cellphones is going to turn this nuisance into a downright menace - to other patients (who don't want this kind of chirpy intimacy and unwanted intrusion into other - banal - lives) and to staff, who are harassed enough by all the other beeping and alarms and twittering and whingeing that goes on.
Cancer patients, of course, are amongst the most vulnerable of all. I think we should join together to get this daft policy reversed. I'm all for designated phone areas FOR PATIENTS ONLY- but not a go-anywhere roving menace. That's asking for trouble.
Cancer patients, of course, are amongst the most vulnerable of all. I think we should join together to get this daft policy reversed. I'm all for designated phone areas FOR PATIENTS ONLY- but not a go-anywhere roving menace. That's asking for trouble.
ANOTHER YEAR
This will be the fourth year of my palliative treatment, and the second of Herceptin at Home, which has proved not only beneficial to my health, but a pleasure in the company of the excellent team of nurses who come to sit with me throughout the infusions. I can make my own hot water bottle and sit in my own arcmchair as the drip goes in; and, with these nurses; it goes in first time - in fact, they managed to get through the whole of 2008 using the same vein. How differerent to the procedure at the Haem clinic at the hospital where those nurses, too, were unfailingly pleasant and patient, but harassed and overworked beyond their call of duty. Cannulations there took several attempts; and I rapidly became known as 'the woman with no veins', which doesn't exactly boost the morale of those designated to give the needle - not least to say my own morale (or amour propre). Anyway, the only clinics I have been to in the last 12 months were the Consultant's check-ups; and even in those, I managed to get away without being jabbed. In fact, the last cannulation attempt on me at the hospital was at the CT scanner, when even the doctor they called in to assist gave up when he saw my 'veinless' hands.
So Herceptin at Home it is, when I go straight from the piano (get the circulation in the hands and arms to work) to the chair. Nurses arrive when they say they will arrive and leave within 2 hours. This is private treatment, of course, although I receive it on the NHS, thanks to some deal between the Hospital Trust, Roche Pharmeceuticals (who manufacture the drug), and the healthcare company. Each dose of this drug costs at least twelve hundred pounds; and once the costs of the nurse and the equipment (cannulas, saline, etc) are factored in, that's a lot of cost! But it has saved my life. And I feel blessed and grateful for it.
Thank you.
So Herceptin at Home it is, when I go straight from the piano (get the circulation in the hands and arms to work) to the chair. Nurses arrive when they say they will arrive and leave within 2 hours. This is private treatment, of course, although I receive it on the NHS, thanks to some deal between the Hospital Trust, Roche Pharmeceuticals (who manufacture the drug), and the healthcare company. Each dose of this drug costs at least twelve hundred pounds; and once the costs of the nurse and the equipment (cannulas, saline, etc) are factored in, that's a lot of cost! But it has saved my life. And I feel blessed and grateful for it.
Thank you.
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