It is October; that time of the year when otherwise sensible people seem to think that buying a pink coloured screwdriver promotes breast cancer awareness or somehow will decrease the number of women and men who die from the disease. It is a time when retailers, some acting in good faith, promote their pink branded merchandise and may even employ slogans that might suggest people are delighted when they, their family and friends receive a breast cancer diagnosis.
As usual I am on the lookout for this year's most tacky or most inappropriate Pink Product, so if you see a contender do post a comment below!
Most readers will know my feelings on the whole Shrieking Pink Silliness, so here I will point towards a few old and new views from other bloggers. My own views can be found in previous October and November posts here in this blog.
http://accidentalamazon.com/blog/2015/09/07/breast-cancer-awareness-lets-get-real/
http://www.huffingtonpost.com/leisha-davisonyasol/october-pinkwashing_b_4102424.html
https://feistybluegeckofightsback.wordpress.com/2013/10/07/unbelievable/
https://feistybluegeckofightsback.wordpress.com/2012/10/25/different-shades-of-pink/
Please - Think Before You Pink. If possible, do what you can to be practically supportive to someone you know who is living with or with and beyond cancer - any cancer, not just breast cancer. Do what you can to support (not necessarily financially) cancer research.
Those of us living here in the Land of New Normal generally love to have fun and to live life to the full but this October, please remember that no cancer is all a pink picnic or a pink wigged giggle and all too many of those diagnosed with breast cancer and other cancers will live or die with or from serious consequences of the disease.
Above all, know the signs, be clear on cancer and have worrying symptoms checked. Because buying that pink screwdriver will not protect you from breast, or any other, cancer.
Friday, 2 October 2015
Sunday, 15 February 2015
Empowerment and Sustainability: a win/win situation
This last week in the BMJ I read an article by Eaton, Roberts and Turner about delivering person-centred care to people with long term conditions (http://www.bmj.com/content/350/bmj.h181) . The article made excellent points, but it is rather an indictment that there is a need for such an article when this approach should be commonplace.
The article covers both sustainability and engagement issues; pointing out that with so many people living with long term conditions (LTCs), sustainability of services and higher public and patient expectations call for an urgent re-design of services. The authors acknowledged that those living with LTCs spend a small fraction of their time with their clinicians and much of their time managing their conditions themselves. Furthermore, those who are managing effectively generally have better outcomes.
So why doesn't it happen? The authors of this article refer to an evaluation of a failed attempt to introduce such a change in the UK, suggesting that support for self management was seen as irrelevant due, inter alia, to a failure to implement cultural change and the fact that it was not supported by guidelines or commissioning arrangements.
An extremely good illustration of one of the benefits of a change in approach is given by the authors, referring to National Voices work on support planning. They point out that most people would not feel comfortable going into an important meeting and being asked to make snap decisions without prior preparation and yet this is generally what happens in the healthcare setting. Instead, they suggest that greater participation could be achieved by giving people test results in advance and prompting them to list what they'd like to discuss.
This seems eminently sensible to me. Bizarrely, I had to push hard to be sent my genetic testing results in advance of the consultation to discuss them in order to prepare my questions, while (in order to save clinic time) I had been given my confirmed diagnosis hurriedly over the phone with a date for an appointment just over a week later. Knowing the genetic test result in advance meant that I was able to concentrate on what I wanted to know given the actual outcome rather than having to think of questions for all possibilities.
Many hospitals in England (but ironically, not mine!) are in fact moving to a more self-directed follow up model for breast cancer patients and this is also true in many places for diabetics, but generally there is still a long way to go before we have an overall person centred approach to the care of those living with LTCs. I can't help but feel that it is incumbent on those of us already fully engaged in managing our care and treatment to encourage and support our own clinicians in taking this approach, particularly when this may not be easy for them.
It was precisely this approach, with both me and my clinician fully engaged, that made my annual appointment such a positive experience a few months ago.
Wednesday, 10 December 2014
Confidence restored
It was my annual check up and mammogram results yesterday, marking 6 years since diagnosis and the start of treatment. All is well and, in contrast to last year, it was a good appointment all round.
I updated with my decision, taken in postal consultation with my oncologist and personal discussion with my GP but which hadn't made it to my notes, to continue with exemestane for another 2 years and then to review in the light of any new data whether to go for a further 3 years more. Dr P agreed that in the light of what we do and don't know, my actual diagnosis and personal situation, this was the sensible decision.
We also discussed future follow up and how I'd felt about it this time last year. My unit is unusual (as I mentioned a year ago) in that it has 10 year follow up. The UK standard has been 5 years of follow up visits and annual mammograms and it is now moving to 1 or 2 years of visits followed by open access but with annual mammograms for 5 years before (re)joining the national screening programme. While there is some evidence in favour of 10 years of annual or bi-annual mammograms, the evidence suggests that in most cases follow up visits after the initial post-treatment phase have little or no value in detecting recurrence. Some people may find them reassuring and others find them stressful. Personally I can't find them reassuring while knowing that they don't have much value, but I have to say that this time I enjoyed the chat! What is more important, we agreed, is that I am alert for anything worrying that I should have investigated and that I get in touch with the clinic if I have any of these symptoms.
We discussed that while continuing on the medication, there could be some value in follow up visits, but the excellent Dr P agreed that I'm likely to know of any research results as soon as (if not before) they do, and certainly before the NHS has formulated its response to those results! On that basis, he is leaving it to me to decide whether or not I feel that a visit next December is a good use of my time, while he urged me to continue with the mammograms, but has signed me up for 8th December 2015.
This appointment has done something to restore my confidence in the unit. My surgeon is good, but last year I found it unsettling that the unit as a whole appeared not to know and follow the emerging new good practice of at least having the discussion. Dr P was willing to discuss that at the moment we don't yet have the evidence and that our unit is (for better or for worse) not in line with the usual practice. More importantly he showed respect for me and my time (not something the NHS is particularly good at) and was prepared to engage fully with a shared decision-making process. It helped that we established at the outset that we both had an interest in watching how the research unfolds and from there we could move forward with mutual respect. Unfortunately for me, he will, of course, be gone by 8th December 2015.
Returning to the subject of last time - I went to this appointment On My Own! I had my questions prepared (including notes of what I would want to know if things hadn't been so good). What extra value would having someone else present have added? Absolutely none. They could only have got in the way of the one-to-one discussion. And had results not been so good, I would have had to consider someone else's reaction when I needed to focus my attention on what I needed to know.
As it is, I can now focus my attention on preparations for Christmas and move forward into my personal Year 7, while continuing my engagement with the wider cancer research agenda and, in particular, with patient engagement with that agenda.
I updated with my decision, taken in postal consultation with my oncologist and personal discussion with my GP but which hadn't made it to my notes, to continue with exemestane for another 2 years and then to review in the light of any new data whether to go for a further 3 years more. Dr P agreed that in the light of what we do and don't know, my actual diagnosis and personal situation, this was the sensible decision.
We also discussed future follow up and how I'd felt about it this time last year. My unit is unusual (as I mentioned a year ago) in that it has 10 year follow up. The UK standard has been 5 years of follow up visits and annual mammograms and it is now moving to 1 or 2 years of visits followed by open access but with annual mammograms for 5 years before (re)joining the national screening programme. While there is some evidence in favour of 10 years of annual or bi-annual mammograms, the evidence suggests that in most cases follow up visits after the initial post-treatment phase have little or no value in detecting recurrence. Some people may find them reassuring and others find them stressful. Personally I can't find them reassuring while knowing that they don't have much value, but I have to say that this time I enjoyed the chat! What is more important, we agreed, is that I am alert for anything worrying that I should have investigated and that I get in touch with the clinic if I have any of these symptoms.
We discussed that while continuing on the medication, there could be some value in follow up visits, but the excellent Dr P agreed that I'm likely to know of any research results as soon as (if not before) they do, and certainly before the NHS has formulated its response to those results! On that basis, he is leaving it to me to decide whether or not I feel that a visit next December is a good use of my time, while he urged me to continue with the mammograms, but has signed me up for 8th December 2015.
This appointment has done something to restore my confidence in the unit. My surgeon is good, but last year I found it unsettling that the unit as a whole appeared not to know and follow the emerging new good practice of at least having the discussion. Dr P was willing to discuss that at the moment we don't yet have the evidence and that our unit is (for better or for worse) not in line with the usual practice. More importantly he showed respect for me and my time (not something the NHS is particularly good at) and was prepared to engage fully with a shared decision-making process. It helped that we established at the outset that we both had an interest in watching how the research unfolds and from there we could move forward with mutual respect. Unfortunately for me, he will, of course, be gone by 8th December 2015.
Returning to the subject of last time - I went to this appointment On My Own! I had my questions prepared (including notes of what I would want to know if things hadn't been so good). What extra value would having someone else present have added? Absolutely none. They could only have got in the way of the one-to-one discussion. And had results not been so good, I would have had to consider someone else's reaction when I needed to focus my attention on what I needed to know.
As it is, I can now focus my attention on preparations for Christmas and move forward into my personal Year 7, while continuing my engagement with the wider cancer research agenda and, in particular, with patient engagement with that agenda.
Friday, 5 December 2014
Exasperation
Not for the first time, I find myself exasperated by the patronising attitude of a national cancer charity - and once again it is Macmillan who are the object of my exasperation.
This morning's news brought their comments on a YouGov survey of around 2,000 people with cancer. The survey found that 45% of people who had had chemotherapy, 60% of people who had had radiotherapy and 61% of those who had had surgery went to "at least one" of their cancer-related medical appointments on their own. (Though only 5% said that this was because they had no-one they could ask to go with them.) 86% of those diagnosed in the past year went to at least one of those appointment alone. Macmillan said that they found this "deeply saddening"
Now this might mean that a substantial number went to all or most of their appointments alone or that most people had someone with the most of the time but went alone once. Which means that without more information than they gave in their saddened press release, these figures are pretty meaningless other than in the case of the 5%.
One person they mentioned commented that staff had looked at him with a mixture of pity and intrigue when he turned up alone, but Macmillan didn't comment on the inappropriateness and unhelpfulness of that reaction. What their Head of Health and Social Care is quoted as saying is this "There is no-one to act as their advocate, asking the doctor the questions they might not have thought to ask because they are too overwhelmed, or to calm them down if they are stressed or anxious."
Next week I will go to my appointment alone, as I have done all my others except one. The exception was the one immediately after surgery, before I was driving again. A friend drove me there but didn't come into the appointment with me and although I'm sure she would have done if I had asked her to, it didn't cross my mind to ask.
I will, as usual, prepare for the appointment in advance as I have done right from the very first one. I will have thought of the questions I want to ask and written them in my notebook. Yes, I will be anxious and it will be a bit stressful - not helped by the fact that the odds are that the clinic will be running very late. However, simply having someone else there is not going to make that wait any easier and why would I need someone to calm me down?????? After all, I know it isn't the receptionist's fault that the clinic isn't properly planned and by then I will have calmed down from my current state of exasperation at the reaction to this survey.
There is nothing deeply saddening about me going alone to my appointments. They are my appointments and my opportunities to ask what I want to know. What is deeply saddening is that hospital and cancer charity staff have problems with cancer patients attending appointments on their own and it is an absolute scandal if staff regarded the patient quoted with pity. I do know from conversations I have had when I've been at conferences that some who work in cancer services feel more comfortable if a patient has someone with them. But that has more to do with their own feelings than the needs and wishes of the patient!
Instead of reinforcing a stereotype of the weak, feeble and overwhelmed cancer patient, charities set up to support us should be challenging the assumption that all patients should have someone with them for all or most of their appointments because they can't manage on their own.
We need empowerment, not patronisation!
This morning's news brought their comments on a YouGov survey of around 2,000 people with cancer. The survey found that 45% of people who had had chemotherapy, 60% of people who had had radiotherapy and 61% of those who had had surgery went to "at least one" of their cancer-related medical appointments on their own. (Though only 5% said that this was because they had no-one they could ask to go with them.) 86% of those diagnosed in the past year went to at least one of those appointment alone. Macmillan said that they found this "deeply saddening"
Now this might mean that a substantial number went to all or most of their appointments alone or that most people had someone with the most of the time but went alone once. Which means that without more information than they gave in their saddened press release, these figures are pretty meaningless other than in the case of the 5%.
One person they mentioned commented that staff had looked at him with a mixture of pity and intrigue when he turned up alone, but Macmillan didn't comment on the inappropriateness and unhelpfulness of that reaction. What their Head of Health and Social Care is quoted as saying is this "There is no-one to act as their advocate, asking the doctor the questions they might not have thought to ask because they are too overwhelmed, or to calm them down if they are stressed or anxious."
Next week I will go to my appointment alone, as I have done all my others except one. The exception was the one immediately after surgery, before I was driving again. A friend drove me there but didn't come into the appointment with me and although I'm sure she would have done if I had asked her to, it didn't cross my mind to ask.
I will, as usual, prepare for the appointment in advance as I have done right from the very first one. I will have thought of the questions I want to ask and written them in my notebook. Yes, I will be anxious and it will be a bit stressful - not helped by the fact that the odds are that the clinic will be running very late. However, simply having someone else there is not going to make that wait any easier and why would I need someone to calm me down?????? After all, I know it isn't the receptionist's fault that the clinic isn't properly planned and by then I will have calmed down from my current state of exasperation at the reaction to this survey.
There is nothing deeply saddening about me going alone to my appointments. They are my appointments and my opportunities to ask what I want to know. What is deeply saddening is that hospital and cancer charity staff have problems with cancer patients attending appointments on their own and it is an absolute scandal if staff regarded the patient quoted with pity. I do know from conversations I have had when I've been at conferences that some who work in cancer services feel more comfortable if a patient has someone with them. But that has more to do with their own feelings than the needs and wishes of the patient!
Instead of reinforcing a stereotype of the weak, feeble and overwhelmed cancer patient, charities set up to support us should be challenging the assumption that all patients should have someone with them for all or most of their appointments because they can't manage on their own.
We need empowerment, not patronisation!
Saturday, 15 November 2014
Last day and the Best of the Rest - NCRI Cancer Conference
In some ways Wednesday morning felt a bit of an anticlimax. There were no posters to view, the exhibitors were gone and delegates were leaving for the station throughout the morning. Never-the-less, it started with a thought provoking plenary lecture by Peter Vedsted from Aarhus University. His title was 'From symptom to cancer treatment: the vital clinical and political leadership'.
Denmark, like the UK, lags somewhat behind most of the rest of the developed world in cancer survivorship and the two countries also have a similar primary-secondary care interface. This makes an examination of the symptom to start of treatment phases of cancer care an obvious subject of study. Peter Vedsted looked at the responsiveness of primary care and GP's access to investigations with a view to a faster symptom to treatment pathway. Guidelines for onward referral, duplication of work and in/efficient use of resources were discussed.
This plenary was followed by a set of parallel sessions before the final plenary lecture was given by Elaine Mardis of Washington University. She spoke about cancer genomics and recent trends. Heterogeneity was again a key issue, including the role of medication in this process. She discussed an autopsy case study in which multiple metastatic sites were sampled and which showed that some did and some did not respond to targeted therapy. She then went on to speak about co-opting the immune system and the use of personalised vaccines to support this.
Then it was time for Charles Swanton to make the closing remarks and whet the appetite for next year's conference.
There is never enough time to go to everything of interest and parallel sessions, while sensible and practical, can make decision-making difficult. On top of this, many of the consumers have issues with fatigue and we need to take a break every now and then. So here are some of the sessions I would have liked to attend but couldn't …
Peter Sasieni hosted a a session on prevention with Jack Cuzick on chemo-prevention of breast cancer, Peter Rothwell on the effect of aspirin and Tim Lobstein looking at obesity. However, I was committed elsewhere at that time slot.
I would have liked to have attended 'Interventional Oncolgy', which examined trends in the interface between clinical oncology and radiology, but unfortunately it clashed with the debate. I also missed the sessions on 'Cancer Evolution' and 'Biology of the Radiation Response' due to clashes.
I could (just) have squeezed in 'Routes from diagnosis …' but in what was a very full day and evening I really did need those 70 minutes to go back to my room, have a shower, a cup of tea and put my feet up for a bit.
But you can't do everything and it is the sign of a good conference when you leave wishing you'd had more time but knowing that you probably couldn't have taken in much more.
Denmark, like the UK, lags somewhat behind most of the rest of the developed world in cancer survivorship and the two countries also have a similar primary-secondary care interface. This makes an examination of the symptom to start of treatment phases of cancer care an obvious subject of study. Peter Vedsted looked at the responsiveness of primary care and GP's access to investigations with a view to a faster symptom to treatment pathway. Guidelines for onward referral, duplication of work and in/efficient use of resources were discussed.
This plenary was followed by a set of parallel sessions before the final plenary lecture was given by Elaine Mardis of Washington University. She spoke about cancer genomics and recent trends. Heterogeneity was again a key issue, including the role of medication in this process. She discussed an autopsy case study in which multiple metastatic sites were sampled and which showed that some did and some did not respond to targeted therapy. She then went on to speak about co-opting the immune system and the use of personalised vaccines to support this.
Then it was time for Charles Swanton to make the closing remarks and whet the appetite for next year's conference.
There is never enough time to go to everything of interest and parallel sessions, while sensible and practical, can make decision-making difficult. On top of this, many of the consumers have issues with fatigue and we need to take a break every now and then. So here are some of the sessions I would have liked to attend but couldn't …
Peter Sasieni hosted a a session on prevention with Jack Cuzick on chemo-prevention of breast cancer, Peter Rothwell on the effect of aspirin and Tim Lobstein looking at obesity. However, I was committed elsewhere at that time slot.
I would have liked to have attended 'Interventional Oncolgy', which examined trends in the interface between clinical oncology and radiology, but unfortunately it clashed with the debate. I also missed the sessions on 'Cancer Evolution' and 'Biology of the Radiation Response' due to clashes.
I could (just) have squeezed in 'Routes from diagnosis …' but in what was a very full day and evening I really did need those 70 minutes to go back to my room, have a shower, a cup of tea and put my feet up for a bit.
But you can't do everything and it is the sign of a good conference when you leave wishing you'd had more time but knowing that you probably couldn't have taken in much more.
Wednesday, 12 November 2014
Day Three - NCRI Cancer Conference
In order not to end up with too many or too lengthy posts on the conference I'm going to limit myself to writing about just one of Tuesday's sessions in what was actually a very busy day, and to mention in passing the ICPV poster.
The poster (number B146) was about the VOICE course, which has now run twice in conjunction with Barts Cancer Institute, Queen Mary University of London. This year's course was clearly as successful as the one I attended last year. The abstract can be found on the conference web site at: http://conference.ncri.org.uk/abstracts/2014/abstracts/B146.html
More about the VOICE course can be found on the ICPV web site:
http://independentcancerpatientsvoice.org.uk
My highlight session for Tuesday was 'Optimising care for those living with and beyond cancer - where does primary care fit?' In my personal view, this is an increasingly important topic both for cancer services as a whole and at the individual patient level. The session was up against some strong competition in its time-slot but gathered an excellent group of speakers and participants.
Firstly Fiona Walter presented a review of studies and a survey of GP attitudes. She highlighted the point that one in four people living with and beyond cancer face poor health post-treatment.
After that Jon Emery from Melbourne presented a review of primary and secondary care in follow up. There was no difference in wellbeing, recurrence, survival or satisfaction between primary care and hospital follow up methods. However, the shared care model did show some increase in satisfaction.
He then went on to discuss the ProCare Trial; a multi-centre phase II RCT of shared care for prostate cancer patients. What struck me as particularly positive about this trial was that follow up visits were planned with care in advance to result in a structured consultation. When it was experienced, the shared care model was the most popular.
The third presentation of the session was a powerful double act by Alistair Thompson, now at MD Anderson Cancer Centre, Houston (and formerly at Dundee) and Maggie Wilcox of ICPV. Their presentation looked at front line perspectives on care for women treated for breast cancer. It was enhanced by Alistair's perspectives of both UK and US healthcare systems and it focussed on the surgical pathway and follow up, consequences of endocrine therapy and upper limb issues.
Alistair spoke about the use of pain relief to support early discharge from hospital, while Maggie pointed out the need for individualised decisions regarding length of stay, especially for those who live alone or conversely in busy households with young children.
Endocrine therapy issues referred to options for extended therapy and the fact that effective symptom management is an unsolved problem and that there is less than a 50% adherence to tamoxifen for five years. It was also pointed out that many women switching from tamoxifen to an aromatase inhibitor are not informed that the AI remains in the system for a far shorter time than does tamoxifen, so consistency of timing is more important. This does chime with my own experience when I switched. I did my research and so knew that the half-life of exemestane is much shorter than that of tamoxifen, but no-one in my medical team has ever mentioned this.
Minimising upper limb complications was discussed as it is an important issue for may people and in addition to Maggie's input there was an extremely insightful intervention from Margaret Grayson, who pointed out that travelling by air with the frame she needs for her sleeve for lymphoedema can be somewhat challenging.
There was then time for a good number of questions from the floor before the session would up and we dispersed with a good deal of food for thought.
The poster (number B146) was about the VOICE course, which has now run twice in conjunction with Barts Cancer Institute, Queen Mary University of London. This year's course was clearly as successful as the one I attended last year. The abstract can be found on the conference web site at: http://conference.ncri.org.uk/abstracts/2014/abstracts/B146.html
More about the VOICE course can be found on the ICPV web site:
http://independentcancerpatientsvoice.org.uk
My highlight session for Tuesday was 'Optimising care for those living with and beyond cancer - where does primary care fit?' In my personal view, this is an increasingly important topic both for cancer services as a whole and at the individual patient level. The session was up against some strong competition in its time-slot but gathered an excellent group of speakers and participants.
Firstly Fiona Walter presented a review of studies and a survey of GP attitudes. She highlighted the point that one in four people living with and beyond cancer face poor health post-treatment.
After that Jon Emery from Melbourne presented a review of primary and secondary care in follow up. There was no difference in wellbeing, recurrence, survival or satisfaction between primary care and hospital follow up methods. However, the shared care model did show some increase in satisfaction.
He then went on to discuss the ProCare Trial; a multi-centre phase II RCT of shared care for prostate cancer patients. What struck me as particularly positive about this trial was that follow up visits were planned with care in advance to result in a structured consultation. When it was experienced, the shared care model was the most popular.
The third presentation of the session was a powerful double act by Alistair Thompson, now at MD Anderson Cancer Centre, Houston (and formerly at Dundee) and Maggie Wilcox of ICPV. Their presentation looked at front line perspectives on care for women treated for breast cancer. It was enhanced by Alistair's perspectives of both UK and US healthcare systems and it focussed on the surgical pathway and follow up, consequences of endocrine therapy and upper limb issues.
Alistair spoke about the use of pain relief to support early discharge from hospital, while Maggie pointed out the need for individualised decisions regarding length of stay, especially for those who live alone or conversely in busy households with young children.
Endocrine therapy issues referred to options for extended therapy and the fact that effective symptom management is an unsolved problem and that there is less than a 50% adherence to tamoxifen for five years. It was also pointed out that many women switching from tamoxifen to an aromatase inhibitor are not informed that the AI remains in the system for a far shorter time than does tamoxifen, so consistency of timing is more important. This does chime with my own experience when I switched. I did my research and so knew that the half-life of exemestane is much shorter than that of tamoxifen, but no-one in my medical team has ever mentioned this.
Minimising upper limb complications was discussed as it is an important issue for may people and in addition to Maggie's input there was an extremely insightful intervention from Margaret Grayson, who pointed out that travelling by air with the frame she needs for her sleeve for lymphoedema can be somewhat challenging.
There was then time for a good number of questions from the floor before the session would up and we dispersed with a good deal of food for thought.
Monday, 10 November 2014
The Debate - NCRI Cancer Conference II
Picking up where I left off, the motion for debate was "This house believes that the Cancer Drugs Fund has been good for British cancer patients".
A quick bit of (rather over-simplified) background - although the NHS is a national service, each of the individual home nations has its own healthcare policies affecting the way the NH Service is delivered locally. The Cancer Drugs Fund operates in England as a means of improving access to drugs not routinely funded by the NHS. Some of the drugs funded are waiting hopefully for NICE approval, while others have been considered to be too expensive for routine use. There has been quite a bit of controversy over the fund and the press abounds with stories and, at the moment, particularly stories of people in Wales not having access to drugs that might well be available to them through the fund if they lived in England. The Fund has been criticised for funding drugs which NICE has already (and often controversially!) rejected.
So this was an interestingly framed debate.
As someone well used to debate and the putting of arguments for and against a case, attending the debate was an interesting experience…
There were speakers from each of the home nations, two for and two against. The format was an initial setting out of the position with regard the background to the fund and the funding for non NICE approved drugs in each of the four nations, followed by an initial straw poll which resulted in support of the motion. After that Peter Clark of NHS England spoke for the motion followed by Tom Crosby of Velindre NHS Trust (in Wales) speaking against. Next came a time for questions from the floor and then David Cameron (no, not the one from Downing Street, but the David Cameron, from the Edinburgh Cancer Research Centre!) replied for the motion and finally Martin Eatock from the Northern Ireland Cancer Network replied against.
In practice, the only one who really spoke to the motion was David Cameron. The others tended to raise very valid points, but points which were not really "on topic", being more about overall fairness than whether British cancer patients had benefited. They addressed the fact that patients with conditions other than cancer don't have access to specialist drugs funds and discussed that not all the devolved nations have access to the fund or something similar. While it may be unfair that people with other conditions can't access non-NICE approved drugs, that doesn't mean cancer patients haven't benefitted from it! And although Welsh cancer patients haven't benefited, English patients have and English patients are British, while the motion speaks only of British cancer patients, not British cancer patients from all parts of the UK. It was, after all, the choice of those who make healthcare policy in Wales not to have such a fund and they are convinced that a cancer drugs fund should not be introduced in Wales.
As a result, I'm not at all convinced that the vote taken after all four speakers had spoken was actually on the same motion on which the straw poll was taken. The final vote was overwhelmingly against the motion. It would be interesting to see what might happen if the same things were said but the debate was held with a very different audience. Many of the British cancer charities are in favour of the fund.
Still, very valid points were made, whatever the motion might have been and it was all good fun!
I will move onto Tuesday's sessions in the next post.
A quick bit of (rather over-simplified) background - although the NHS is a national service, each of the individual home nations has its own healthcare policies affecting the way the NH Service is delivered locally. The Cancer Drugs Fund operates in England as a means of improving access to drugs not routinely funded by the NHS. Some of the drugs funded are waiting hopefully for NICE approval, while others have been considered to be too expensive for routine use. There has been quite a bit of controversy over the fund and the press abounds with stories and, at the moment, particularly stories of people in Wales not having access to drugs that might well be available to them through the fund if they lived in England. The Fund has been criticised for funding drugs which NICE has already (and often controversially!) rejected.
So this was an interestingly framed debate.
As someone well used to debate and the putting of arguments for and against a case, attending the debate was an interesting experience…
There were speakers from each of the home nations, two for and two against. The format was an initial setting out of the position with regard the background to the fund and the funding for non NICE approved drugs in each of the four nations, followed by an initial straw poll which resulted in support of the motion. After that Peter Clark of NHS England spoke for the motion followed by Tom Crosby of Velindre NHS Trust (in Wales) speaking against. Next came a time for questions from the floor and then David Cameron (no, not the one from Downing Street, but the David Cameron, from the Edinburgh Cancer Research Centre!) replied for the motion and finally Martin Eatock from the Northern Ireland Cancer Network replied against.
In practice, the only one who really spoke to the motion was David Cameron. The others tended to raise very valid points, but points which were not really "on topic", being more about overall fairness than whether British cancer patients had benefited. They addressed the fact that patients with conditions other than cancer don't have access to specialist drugs funds and discussed that not all the devolved nations have access to the fund or something similar. While it may be unfair that people with other conditions can't access non-NICE approved drugs, that doesn't mean cancer patients haven't benefitted from it! And although Welsh cancer patients haven't benefited, English patients have and English patients are British, while the motion speaks only of British cancer patients, not British cancer patients from all parts of the UK. It was, after all, the choice of those who make healthcare policy in Wales not to have such a fund and they are convinced that a cancer drugs fund should not be introduced in Wales.
As a result, I'm not at all convinced that the vote taken after all four speakers had spoken was actually on the same motion on which the straw poll was taken. The final vote was overwhelmingly against the motion. It would be interesting to see what might happen if the same things were said but the debate was held with a very different audience. Many of the British cancer charities are in favour of the fund.
Still, very valid points were made, whatever the motion might have been and it was all good fun!
I will move onto Tuesday's sessions in the next post.
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