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Lemongrove
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18-10-2013
04:16
Sorry BCC but am I the only one who thinks SBCAD was a total wash out. Two live chats and a one day discussion forum - is that it? I thought SBCAD was about raising awareness amongst the general public of the problems people dealing with secondary have to face. As for BCC being so generous as to put together some links for those of us with secondary BC, even this has flaws. For example I have just downloaded a leaflet on being diagnosed with Brain metastases, and there are at least four mistakes in it. Firstly there is absolutely no mention of meningeal mets (mets inthe membrane surrounding the brain), despite these being classified as brain mets. Secondly it states that Stereotactic Radiotherapy may be suitable if there are just one or two small brain mets. In fact as from April the 1st 2013, the number of mets is totally irrelevant. Whether a patient is clinically suitable for SRT and will receive funding for this treatment depends on the total volume. So someone could have quite a large number of brain mets, and providing the total volume was less than 3.5cm they would be considered for treatment (although it would have to be on a Gamma-knife machine, because Cyberknife can only treat up to five). Thirdly BCC describe Herceptin as a treatment for brain mets, which again is incorrect because the molecules in Herceptin are too large to cross the blood brain barrier. That is why patients with Her 2 cancers who are diagnosed with brain mets are switched to another type of monoclonal antibody called Lapatanib, which is thought to cross the blood brain barrier. Finally BCC suggest that chemotherapy is not usually appropriate for brain mets because it cannot cross the blood brain barrier. In fact Capecitabine (an oral chemotherapy) is frequently used to treat brain mets as it can and does cross the blood brain barrier (which is why it is usually teamed with Lapatanib). Also had BCC understood that Leptomeningeal metastases are classified as brain mets too, they would have discovered that intrathecal infusions of Chemo are often used for the treatment of Meningeal Mets. Come on BCC. You exist to support, provide information and campaign, but if the above is anything to go by you desperately need to pull your socks up.
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18-10-2013
03:28
Ingrid it's no wonder you feel anxious about the future. I've had almost a year to accept the diagnosis, and still feel very scared at times. It's bad enough having brain mets, without the added worry of meningeal mets. For me it helps to know exactly where in the meninges it is, as that gives a clue to how serious things are and what the treatment options are. No doubt you're worried about the WBRT treatment, but in some ways the fact they are giving you this bodes well for your future prospects, because if they are carrying out WBRT it sounds like they're satisfied there are no cancer cells in the spinal fluid, because if they did, they would hang fire on WBRT until you needed it for pain control. Even so I know the thought of the treatment must be scary and horrible - and from what I've been told by friends that have had it, it's not a nice treatment (apparently the SE's kick in when they take you off steroids). But, the people who have had it, have seen dramatic reductions in the size of their mets, and in one case a person had a complete response (mets gone). As far as your brain mets establishing so quickly, I'm afraid that does happen, as it happened to me. I was diagnosed with bone mets in November 2009, and poodled along thinking everything was OK (in fact between October 2011 and March 2012 I was even told there was no evidence of disease). But suddenly it became apparent that things had kicked off in my spine, and with every scan it got worse. Consequently after trying Exemstane and Fulvetrant with no luck, they did a biopsy in August 2012 of a node in my chest which showed my cancer had changed it's receptor. Instead of being strongly ER+ and weakly Prog+, and Her 2 negative, it had become strongly Her2 +, moderately ER + and weakly Prof +. Thus in Sept 2012 I started Herceptin and Capecitabine, but as you know Herceptin doesn't cross the blood brain barrier, and by December 2012 I was diagnosed with Brain and Meningeal Mets in the Dura. So in just three months I went from just having Bone mets to having Brain and Meningeal mets as well. The fact is though that the seeds could have sat in my brain undetected waiting to get going right from the start, and sadly it was at that particular point it decided to make itself known. Unfortunately a lot of cancer patients (not you), and cancer charities for that matter, like to believe the myth that when someone hits the five year mark after treatment they are cured (for example you see all the clap trap on charity sites about moving on after cancer). Sadly that is far from the truth. The Prof who treated me at CX say's that 40% of women diagnosed with stage 3 cancer will go on to be diagnosed stage 4, because at the original diagnosis secondaries were not observable. Similarly a lot of women with even stage 1 or 2 BC have recurrence because they had cells floating round their system undetected, and possibly kept at bay by drugs duch as Tamoxifen of Letrozole, and when they were taken off them after five years the cancer cells were no longer controlled. I honestly think that Charities that promote this "cured" thinking are doing their members a dis-service because when people have a recurrence or discover that their cancer is stage four it is made all the more devastating by the fact that it was so unexpected. Anyway I hope your recent bout of sepsis is subsiding now (again I was admitted to hospital with that in May this year so I know how grim you must feel). Just get past the WBRT, rest, eat little and often, look after yourself and then decide your best move. All the best, Lesley
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17-10-2013
03:01
Ingrid, sorry to read of your diagnosis. I too have Meningeal Mets, and three Brain mets. You probably know quite a bit about this already but as others may not I will try and explain things, so that we all know what we're talking about, and don't start making suggestions that are unsuitable. Meningeal metastases are really quite different to Brain Metastases. Brain metastases are those in the Brain, whereas Meningeal Metastases are mets that exist in the membrane surrounding the Brain (the Meninges). In order to understand how this impacts on treatment options it's first necessary to understand how the membrane is constructed, as treatment options hang on what part of the membrane is effected, how much involvement of the membrane there is, and how likely it is that cancer cells have entered the spinal fluid. The membrane consists of three layers. The layer closest to the brain is the Pia Mater, the middle layer is called the Arachnoid Mater and the outer layer closest to the skull is the Dura If Mets are localised within the Dura and there is no involvement of the spinal fluid then all the treatments used for Metastases in the Brain would be appropriate (Lap/Cap, Tamoxifen, Stereotactic RT and WBRT). The reason SRT would be possible is because the Dura is a hard outer layer, and mets can be targeted , providing there are not too many. However, if you wanted Stereotactic RT treatment for Dural Mets you would have to self fund because NHS England only fund Mets localised within the Brain which are under a total volume. The other problem is that many doctor assume that if Mets are observed within the Dura there is a chance they could have penetrated futher into the Dura, and treatment would then not be worthwhile. If Mets are in the Pia Mater or Arachnoid Mater, Chemo's and other systemic treatments that cross the Blood Brain barrier, would also be an option, but SRT would not as these two layers are jelly like structures, and so mets tend to thread throughout them, and there is no target as such. However WBRT is still an option as this does not require a target in the same way as SRT. If Mets have spread throughout the three layers of the meninges, there is a possibility that it could have passed into the spinal fluid, and that makes treatment more difficult (but if doctors suspect this they usually do a Spinal Tap to search for cancer cells). If this test confirms involvement in the spinal fluid things can be more tricky. Systemic treatments are still available, but the delivery of it them is more difficult. It's not just that systemic treatments have to penetrate the Blood Brain Barrier, they also have to get into the spinal fluid as well - and the only way to do this is with intrathecal infusions into the spine. Similarly RT is much more difficult because it is not possible to irradiate the entire spine, and usually there is no target (unless there is a collection of cells at a particular junction). In any case, even if all the layers of the meninges had been crossed and the spinal fluid breached, all is not lost. Intrathecal infusions can keep things at bay (and I have read of people surviving a few years with this treatment). Similarly, RT can be used if cells collect in a particular area , or are having an effect on the rest of the central nervous system, and this too can hold things at bay. To end this lengthy post I would like to say the important thing to remember is just because Mets have been observed in one place, doesn't mean it's a forgone conclusion that they will go to X,Y or Z. Sometimes these things make an appearance and then just do nothing. In my case, I was diagnosed with three Mets in the Brain, and more localised within the Dura just before last Christmas (2012). Unfortunately, SRT is not an option for me because my Dural Mets are a bit too extensive and in any case would make me ineligible NHSfunding . However, I have been taking Lapatanib and Capecitabine since diagnosis, and no other BM's have popped up and the existing ones have halved in size. Eventually if the Lap Cap fails and my BM's become symptomatic I will have WBRT, and pray it is as successful for me as it has been for others. Anyway I hope this post is helpful. I am not a medical professional. I am simply passing on what has been explained to me at the Marsden. Best of luck with your treatment..
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10-10-2013
10:24
Have sent an Email to register for this forum. I would appreciate it if BCC would confirm that this forum will not be limited to a question and answer session. When I have attended your forums before, we were asked to comment on what BCC had already decided were the issues they wanted to address. This time it should be about what those of us with secondary BC want.
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10-10-2013
10:13
Having managed various projects for the Red Cross in the past, I disagree. The Red Cross ran numerous projects, which were mostly funded by Government agencies, but all charities juggle income so it was always very difficult to ascertain what was going where. Also, in the late 1990's the Red Cross were singled out by the media as a Charity that spent a large portion of their income on management and running costs. Personally I think transparency is a problem with many Charities. That's why I think we need to know precisely were the money goes. By the way as far as BCC is concerned. The 12 million income I referred to earlier before was from donations. They also have a large property and investment portfolio, but of course the income they derive from this is subject to market conditions.
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06-10-2013
02:26
Sticky Vicky I think you make a good point about what donations are used for, and whether people actually know what they're raising funds for. Personally, I think that when Charities make appeals for donations in the media, it should be mandatory for them to declare just how much of their total income is spent on the cause/causes they are raising money for, and how much is spent on the Charities running costs. When I donate to a charity I don't just want to be told my money will be spent on general aims (for exampe, increasing support, information, raising standards etc), I want to know exactly what projects are being run to achieve these ends, and how much is spent on each of them. I know it's possible to obtain information about income and costs from the Charity Commission and the BCC site, but this info doesn't give enough specific detail. But still, BCC accounts make quite interesting reading. BCC's objectives are described in quite a general way ( to raise awareness of cancer, support and provide information to cancer patients, and campaign for better standards of service), but it is difficult to ascertain in detail exactly how they are doing to achieve these ends. For example they may be raise funds to improve support, but how is that being spent?. Are the donations going to provide more nurses on the helpline? Answer _ don't know. They also offer opinion to Government departments, and carry out some research. But as far as I'm aware, this is not clinical research to find a cure, but about looking at standards of care etc. This could be quite confusing for someone who want their money to help find a cure. BCC do own have quite a large property and investment portfolio, and donations for the most recent year declared, showed donations amounting to approximately £12 million. However, they spend quite a bit of this on staff (one senior member earns over £100,000), and millions are spent on organising fund raising. I don't think BCC are alone in providing inadequate details of it's activities, but that doesn't mean it's OK. There is such a thing as taking lead. By the way Sticky I'm always happy to share a soap box, but personally prefer action rather than words
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04-10-2013
05:14
Personally I totally agree that BCC are not committing sufficient effort, resources,or time to SBCAD. Also as someone else has said, they seem to be confusing the term Secondary BC with Second Class Cancer Patient. Perhaps one of the reasons for this is that BCC regard Primary BC as a better money spinner. After all, it must be much easier if those pink clad fund raisers can have a good old knees up at the same time as they're raising dough.. After all, bringing Secondary BC to the party might put a dampner on things. The other reason could be that many of the issues of concern to those of us with Secondary BC have political roots, and maybe BCC don't want to get their hands to dirty dealing with these problems. After all they do have rather a cosy relationship with some Government organisations (for example they are NICE stakeholders, and they actually receive funding from the Department of Health). Similarly, if they were seen to be critical of certain polices they might put off certain fund raisers. Whatever their reason, BCC are clearly not listening. Maybe this October the 13th we should all be standing outside their offices in London, getting press coverage, and writing letters to News Editors. We are marginalised, side-lined, ignored, and abused enough by the powers that be already, without an organisation supposed to prevent this joining in as well.
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04-10-2013
04:38
Jenane, as I said in my post The reason NHS England only fund stereotactic radiotherapy for two types of cancer is that they have based their funding policy on the recommendations of a report published by the National Radiotherapy Implementation Group in 2010/2011. This report looked into the eficacy of SBRT and SRT, and concluded that funding for this treatment should be limited to Cerebral Cancer, and Primary Inoperable Lung Cancer, and that all other types of cancer, should be funded within a trial setting . Thus the expectation was that patients with other types of cancer would be able to access treatment within a Trial setting, and that these Trials would provide more evidence to support the more NHS funding. However this just hasn't happened. The Government have handed over responsibility for recommending which cancers should join the list eligible for NHS funding to an organisation called the United Kingdom Stereotactic Ablative Radiotherapy Consortium. Trouble is, this organisation are not answerable to the Department of Health, and almost three years later, this group have yet to make any recommendations. You may ask why this organisation have not made any recommendations, and the short answer is because there is not a single Trial going on in the UK to evaluate stereotactic RT for other cancers. Why are there no Trials - because,the pharmaceutical industry is not interested in radiotherapy research, and Government funding for research is extremely difficult to get.
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09-09-2013
09:12
Just replying so that the post appears.
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09-09-2013
09:11
As a few of you will know, in October 2010, I had Cyberknife Stereotactic Radiotherapy for skull mets. At that time my treatment was paid for by a Charity as my then PCT wouldn't pay for it (post code lottery and all that). After my treatment i resolved to campaign to make funding for this potentially life saving treatment more widely available for all cancer patients who needed it. As a result I helped set up a charity called: www.ukcknetwork.co.uk and set up an online petition which has been signed by over 3000 people. However i regret to say that funding has got markedly worse this year and I would like to explain why to help raise awareness, encourage others to share the information, and hopefully inpire people to ask more questions about this from the powers that be. Basically, up until the 1st April 2013, if a Consultant felt a patiient required treatment not routinely funded by the NHS such as stereotactic radiotherapy ( Cyberknife or Gamma-knife), they would apply to the patients Primary Care Trust, and the PCT would then forward the application to a local Specialised Commissioning Group. But this led to an unfair postcode lottery where funding decisions woud vary from one place to the other. To counter the potcode lottery and ensure more consistent funding arrangements the Government set up a national commissioning group called NHS England, and since the 1st April 2013, all applications for individual funding are sent to them. The problem is that since NHS England took over responsibility for funding from local Specialised Funding Groups, only two types of cancer are now eligible for SBRT and SRT funding. These are Cerebral Cancer and Primary Inoperable Lung Cancer. Patients with any other type of cancer are ineligible for NHS funding. This means that people with Secondary BC who have lung, liver, kidney or Spine Metastases would not get NHS funding. The reason NHS England have adopted this funding policy is that they have followed the recommendations of a report published by the National Radiotherapy Implementation Group in 2010/2011. This report looked into the eficacy of SBRT and SRT, and concluded that funding for this treatment should be limited to Cerebral Cancer, and Primary Inoperable Lung Cancer. All other types of cancer, should be funded within a trial setting . Thus the expectation was that the promise of funding for Trials would lead to more evidence becoming available, and the list of cancers, eiligible for NHS funding increasing. However this just hasn't happened. The Government have handed over responsibility for recommending which cancers should join the list eligible for NHS funding to an organisation called the United Kingdom Stereotactic Ablative Radiotherapy Consortium. Trouble is, this organisation are not answerable to the Department of Health, and almost three years later, this group have yet to make any recommendations. You may ask why this organisation have not made any recommendations, and the short answer is because there is not a single Trial going on in the UK to evaluate stereotactic RT for other cancers. Why are there no Trials - because,the pharmaceutical industry is not interested in radiotherapy research, and Government funding for research is extremely difficult to get. An MP called Tessa Munt has repeatedly taken up cases of cancer patients who have been refused funding for SRT, and she recently raised a Parliamentary question to the Health Minister about this (which was reported in Hansard). I was so disappointed with the Ministers reply that I added an annotation which will appear in the margins of Hansard. Hopefully someone will read it - but I won't hold my breath. I have copied this Annotation at the bottom of this thread, for people to read it if they're interested In the meantime I hope people realise that this policy is costing lives - and could effect anyone who irequires Cyberknife or Gamma-knife. If you don't believe that, google the story of Nadejah Williams (which has been reported in several newspapers recently). Nadejah is a 23 year old young lady who has inoperable bowel cancer. Her Doctors have said her only chance is stereotactic radiotherapy, but despite two funding applications and an appeal, NHS England have refused funding and she has now been told she has just a few months to live. Anyway this is my Hansard annotation for anyone interested: Just not good enough Anna. Since NHS England took over from local Specialised Commissioning Groups on the 1st April 2013, SBRT and SRT is now only funded for two types of cancer - Cerebral Metastases, and Primary Inoperable Lung Cancer. This means that cancer patients with any other type of cancer cannot get NHS funding for SBRT or SRT. This is shocking because it is costing lives, and because SBRT and SRT are readily available for most types of cancer in nearly every other developed nation. NHS England have based their funding policy concerning SBRT and SRT on a report published by the National Radiotherapy Implementation Group in 2010/2011. The report concluded that SRT and SBRT should be funded for Cerebral Metastastases and Primary inoperable Lung Cancer, and within a trial setting for all other types of cancer. So there was always the expectation that as more evidence came along, other types of cancer would be funded. But when will this be? We are told that recommendations to expand the types of cancer suitable for NHS funding has been delegated to The United Kingdom Stereotactic Ablative Radiotherapy Consortium. They apparently will look at any new evidence and make their recommendations. But when will this be and more to the point - given that there are no trials going on in the UK to establish new evidence, what will they base this on?. Delegation is a reality of Government but some things are too important to delegate. Ultimately the Government are responsible for the NHS, and if the NHS cannot offer cancer patients life saving treatment because nobody is taking responsibility for what treatments are funded, the Government must step in to shake things up. Please share this information
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08-09-2013
02:17
Bumping so this thread will appear.
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08-09-2013
02:15
As a few of you will know, in October 2010, I had Cyberknife Stereotactic Radiotherapy for skull mets. At that time my treatment was paid for by a Charity as my then PCT wouldn't pay for it (post code lottery and all that). After my treatment i resolved to campaign to make funding for this potentially life saving treatment more widely available for all cancer patients who needed it. As a result I helped set up a charity called: www.ukcknetwork.co.uk and set up an online petition which has been signed by over 3000 people. However i regret to say that funding has got markedly worse this year and I would like to explain why to help raise awareness, and hopefully inpire people to ask more questions about this from the powers that be. Basically, up until the 1st April 2013, if a Consultant felt a patiient required treatment not routinely funded by the NHS such stereotactic radiotherapy ( Cyberknife or Gamma-knife), they would apply to the patients Primary Care Trust, and that PCT would then forward the application to a local Specialised Commissioning Group. But this led to an unfair postcode lottery where funding decisions woud vary from one place to the other. To counter the potcode lottery and ensure more consistent funding arrangements the Government set up a national commissioning group called NHS England, and now, since the 1st April 2013, all applications for individual funding are sent to them. The problem is that since NHS England took over responsibility for funding from local Specialised only two types of cancer are now eligible for SBRT and SRT funding. These are Cerebral Metastases and Primary Inoperable Lung Cancer. Patients with any other type of cancer are ineligible. The reason NHS England have adopted this funding policy is that they have followed the recommendations of a report published by the National Radiotherapy Implementation Group in 2010/2011. This report looked into the eficacy of SBRT and SRT, and concluded that funding of this treatment should be limited to Cerebral Cancer, and Primary Inoperable Lung Cancer. All other types of cancer, should be funded within a trial setting . Thus the expectation was that the promise of funding would lead to more Trials and as more evidence became available to support funding for other cancers, the list of cancers eiligible for NHS funding would increase. However The Government then handed over responsibility for overseeing evidence and recommending which cancers should join the list eligible for NHS funding to a group called the United Kingdom Stereotactic Ablative Radiotherapy Consortium. Trouble is, they are not answerable to the Department of Health, and almost three years later, this group have yet to make any recommendations. Why? you may ask. Because there is not a single Trial going on in the UK to evaluate stereotactic RT for other cancers. An MP called Tessa Munt has repeatedly taken up cases of cancer patients who have been refused funding for SRT, and she recently raised a Parliamentary question to the Health Minister about this (which was reported in Hansard). I wa so disappointed with the Ministers reply that I added an annotation which will appear in the margins of Hansard. Hopefully someone will read it - but I won't hold my breath. I have copied my Annotation at the bottom of this thread, for people to read it if they're interested In the meantime I hope people realise that this policy is costing lives - and could effect anyone who irequires Cyberknife or Gamma-knife. If you don't believe me google the story of Nadejah Williams (which has been reported in several newspapers recently). Nadejah is a 23 year old young lady who has inoperable bowel cancer. Her Doctors have said her only chance is stereotactic radiotherapy, but despite two funding applications and an appeal, NHS England have refused funding and she has now been told she has just a few months to live. Anyway this is my Hansard annotation for anyone interested: Just not good enough Anna. Since NHS England took over from local Specialised Commissioning Groups on the 1st April 2013, SBRT and SRT is now only funded for two types of cancer - Cerebral Metastases, and Primary Inoperable Lung Cancer. This means that cancer patients with any other type of cancer cannot get NHS funding for SBRT or SRT. This is shocking because it is costing lives, and because SBRT and SRT are readily available for most types of cancer in nearly every other developed nation. NHS England have based their funding policy concerning SBRT and SRT on a report published by the National Radiotherapy Implementation Group in 2010/2011. The report concluded that SRT and SBRT should be funded for Cerebral Metastastases and Primary inoperable Lung Cancer, and within a trial setting for all other types of cancer. So there was always the expectation that as more evidence came along, other types of cancer would be funded. But when will this be? We are told that recommendations to expand the types of cancer suitable for NHS funding has been delegated to The United Kingdom Stereotactic Ablative Radiotherapy Consortium. They apparently will look at any new evidence and make their recommendations. But when will this be and more to the point - given that there are no trials going on in the UK to establish new evidence, what will they base this on?. Delegation is a reality of Government but some things are too important to delegate. Ultimately the Government are responsible for the NHS, and if the NHS cannot offer cancer patients life saving treatment because nobody is taking responsibility for what treatments are funded, the Government must step in to shake things up.
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18-08-2013
08:51
Hi Mrs Blue.
With respect the study does not only refer to women over the age of seventy.
The first paragraph of the article states:
Women aged over 70 with breast cancer and women in all age groups with more advanced disease may be treated less aggressively in the United Kingdom than in some other countries, an international study indicates.
In other words women aged over seventy are treated less aggressively no matter what stage of cancer they have (possible ageism?), and patients of all ages are treated less aggressively in Britain compared to other developed countries.
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17-08-2013
11:12
Firstly, thank you Mrs Blue and Vercors to links about the inadequacy of treatment for secondary BC. In Britain.
You may be interested in the link below to an article published in the British Medical Journal, The article describes a respected study which concluded that treatment for secondary BC is much less aggressive in Britain than other developed Countries, and that this may explain the relatively poor survival rates here. See link below.
http://www.bmj.com/content/346/bmj.f1405?rss=1&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%25253A+bmj%25252Frecent+%252528Latest+from+BMJ%252529
Secondly, given that there is quite a lot of evidence that treatment for secondary BC is inferior in Britain, it is hard to fathom the statement by HelenL at BCC that while survival rates have improved, support has not kept pace.
Really? What evidence do BCC have that survival rates for patients with secondary BC have improved? I’m not sure that medics have even been collecting this data. Wasn’t failure to collection of data on secondary BC patients an issue BCC campaigned on?
In any case , I would suggest the issues that are having the most effect on SBC patients have nothing to do with lack of support . I fail to see how more Secondary BC Nurses can do anything about the end of the Emergency Drugs fund or the introduction of Value Based Pricing. Neither could they tackle the unrelenting reduction of drugs approved by NICE.
Similarly what could nurses do about SBC patients being denied DLA under DS1500 rules? Then of course there is the issue of ATOS bullying SBC patients into completing limited capability for work forms (despite DWP saying that this is not necessary).
Thirdly I do not think it’s necessary for BCC to survey it’s network of Nurses about why there is a lack of support. I think the answer is lack of money. For example, when I was in hospital recently there ,was only one qualified nurse on night duty. The nursing assistant had been moved to another ward to cover for staff absence . This in my view put patients at risk ,because one nurse cannot check drugs being dispensed, and respond to emergencies at the same time. If Hospitals cannot afford to provide adequate staffing levels on wards, what hope is there that they will pay for more secondary BC Nurses. So again more support for patients with secondary BC is a political issue .
Thank goodness BCC have recognised that body image is not the issue of greatest concern, but again BCC seem to be side-stepping the real issues, and focusing on those if feels comfortable with – namely lack of support.
Frankly BCC I think your organisation needs to face facts and accept that if it is to tackle these issues it has to start some hard non-party political campaigning.. This means BCC must change its cosy relationship with the State. For example, BCC should not in my view, be accepting funding from the Department of Health, because he who pays the piper calls the tune. Neither should BCC as a NICE Stakeholder regard itself as a trusted partner of NICE. BCC should remember whose side it’s meant to be on. BCC should be doing everything it can to prevent NICE banning Drugs and treatments, not just going along with so called medical evidence and rubber stamping whatever NICE want to do.
No doubt BCC will think this a bit harsh so to be fair I'm inviting BCC to name one single drug it has prevented NICE from banning
I’m not saying that partnership is necessarily wrong. In fact I recently applied to be a patient member on the medicines CRG at NHS England (NHS England are the body who are now responsible for deciding what drugs will be available when the Emergency Drugs Fund ends next March). I have now been accepted by NHS England, but what is key is that I am going into it knowing exactly whose side I’m on. Also even though I know I will have absolutely no power whatsoever (because the bottom line for NHS England is money) I will at least be a voice – and while it’s easy to ignore one voice , hopefully others will get involved – and lots of voices are less easy to ignore.
I personally want BCC to focus on the issues I have referred to above as a theme for SBCAD. How do others feel about this, and will BCC confirm that this is what they are going to do?
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08-08-2013
10:12
Bumping so it appears
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08-08-2013
10:11
Some people may be aware that the Emergency Drugs Fund (which has given access to thousands of patients who would otherwise have not received certain drugs), will end in March 2014, and will be replaced by a system known as Value Based Pricing (VBP).
BCC have written about this and said, "A new system of pricing branded medicines, known as value-based pricing (VBP), is due to start from January 2014. The aim is to give NHS patients better access to effective and innovative medicines. With respect, this is nonsense, and a number of cancer charities have voiced extreme concern about VBP. because essentially the list of drugs available will be based on value for money. The concern is that this will inevitably work against patients with secondary BC, because the drugs we require are usually quite expensive, and frequently perceived as not providing enough benefit in terms of survival advantage.
As much as I hate the Daily Mail they have published a very good article about the effects of VBP (please see link below)
[color=#0066cc]http://www.dailymail.co.uk/health/article-2352096/Cancer-patients-fear-losing-drugs-fund-lifeline-Fears-16-000-patients-year-denied-help.html
I would urge people to read BCC's article entitled Drug Access for people with secondary Breast Cancer, then read the Mail article above, and make up your own mind.
Personally I think BCC should stop cosying up to the powers that be, stop pussy footing around with issues like body image and start running some hard hitting campaigns that actually deal with the vital issues crowding in on us.
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08-08-2013
09:00
It make me so cross to read on nother thread that people are being denied the opportunity to claim DLA under DS1500 rules because their doctors say they "only have bone mets". These so called medical professionals should know better. Bone mets can be extremely serious indeed. Bone mets in the spine can constrict the spinal cord and eventually cause paralysis and incontinence. Skull mets can grow inwards towards the brain and cause what the medics refer to as concomitant progression.
In my view, it's a shame that medics who tell a patient they "only have bone mets" can't be made to live with bone mets themselves, just for one day.
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08-08-2013
01:54
Mrs Blue that is such encouraging news. Sometimes I wonder if it's worth going through all the horrible treatment, but you show that it can be.
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08-08-2013
01:34
Well BCC your represntative Liz said on the 19th July she would come back the following week to let us know what BCC plan to do for secondary BC Awareness Day, It's now the 8th August and no news. Please will BCC let us know?
There are many political issues that are having a devastating effect on patients with secondary BC, and focusing on Body image on SBCAD is beyond belief
For example, In March 2014 the Emergency Drugs Fund comes to an end and will be replaced by Value Based Pricing. BCC are saying that this is going to widen access to new drugs, but with respect, that is utter tosh. The fact is that it will greatly reduce the number of drugs available to patients with secondary BC, because drugss for these patients are frequently viewed as representing poor vlue for money (as many drugs for patients with secondary BC are expensive and do not add enough survival advantage). Value Based Pricing is going to reduce the number of drugs available. For more info look at this article
http://www.dailymail.co.uk/health/article-2352096/Cancer-patients-fear-losing-drugs-fund-lifeline-Fears-16-000-patients-year-denied-help.html
Then of course ther iis the issue of people re-newing their claim for DLA under DS1500 rules being turned down.
Similarly there is the issue of terminally ill cancer patients who have claimed ESA under DS1500 rules, being asked by ATOS to complete Limited Capability for Work forms (ESA50), when the DWP state that terminally ill patients are not required to fill in this form. The issue here is that ASOS are receiving commission for every person they get off benefits, and so are casting their net wide. If a cancer patient doesn't know the rules they could easily end up being caught in the net. ATOS must be stopped doing this.
Add to that the remorseless ban of life extending drugs by NICE, and I would have thought there were plenty of issues to fill SBCAD - so come on BCC, stop the lsoftly softly approach and stqrt throwing a few punches. Please let us know what are you going to do?
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06-08-2013
12:55
Bit of a detour here ladies but thought I would give some information for those who have been receiving Employment Support Allowance (ESA), and have recently been asked to complete a limited work capability form ESA50.
I originally claimed DLA and ESA under DS1500 rules, and because I had claimed ESA under DS1500 I was placed in what the Department of Work and Pensions call a support group (meaning I am not expected to make myself available for work). Both these benefits were awarded for three years. When the three years were up, I was contacted by DWP to ask if I wanted to re-apply for DLA. I re-applied under DS1500, and was awarded this for another three years.
However a few weeks after being re-awarded DLA under DS1500, I was contacted by ATOS (the private agency appointed by the Govt to assess claims for ESA), asking me to complete a limited work capability form (ESA50), The ATOS letter stated that if I did not complete the form by a certain date I would lose my ESA.
Fortunately, I was aware of the rules regarding this, and so sent them a letter. In the letter I said the following:
Before completing this questionnaire I would like to know why I am being asked to do this when The Department of Work and Pensions Guide to ESA50 states “Claimants who are terminally ill do not need to complete ESA50 as they can be automatically placed in the Support Group. A form called a DS1500 is used to provide evidence that a claimant is terminally ill”. Please see paragraph WCA at http://www.dwp.gov.uk/docs/esa-stakeholder-information-pack.pdf
Within a few day's of sending the letter I was called by very pleasant lady at the DWP who explained that I should ignore the letter, rest assured I would not be required to complete the ESA50 form, and would immediately be assigned to the support group. She also explained that ATOS send out these forms automatically when a claimants ESA award is due to expire - irrespective of whether they have been receiving ESA under DS1500 or not.
This means a lot of terminally ill people who were previously receiving ESA under DS1500 rules might be caught out by this.
As I understand it ATOS are receiving commission on every claimant they manage to get off benefits, so it's obviously in their interest to cast their net as wide as possible. Consequently people who receive ESA under DS1500, and are asked to complete a limited work capability assessment must write to ATOS and challenge this immediately. If people want to use the paragraph I have highlighted above please do so. Don't get caught in the net.
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