17th June: We submitted a joint response with the APPG on Pancreatic Cancer, Pancreatic Cancer Action and Pancreatic Cancer Research Fund to the APPG on Cancer's inquiry into the Cancer Strategy. You can read the response here.
20th April: We issued a joint response with Pancreatic Cancer Action to NICE's consultation on the appraisal of nanoliposomal irinotecan for treating pancreatic cancer after prior treatment with gemcitabine. Read the response here.
18th April: We submitted a joint response with Pancreatic Cancer Action to NICE's proposal to reappraise pancreartic cancer drug Abraxane. Read the response here.
11th February: We submitted a response to the NICE/NHSE consultation on proposals for a new Cancer Drugs Fund operating model. Read the response here.
29th January: We responded to NICE's draft scope for its consultation on improving supportive and palliative care.
13th January: We commented on NICE's draft scope for the development of a pancreatic cancer Clinical Guideline.
17th December: We co-signed the Association of Medical Research Charities' response to the Department of Health's consultation on the role of the National Data Guardian for health and social care.
10th December: We attended a scoping workshop on the development of a NICE Clinical Guideline for Pancreatic Cancer.
2nd December: We attended a scoping workshop on NICE's consultation into Improving Supportive and Palliative Care in Adults.
22nd September: We commented on NICE's draft scope for the proposed appraisal of Nanoliposomal irinotecan for treating pancreatic cancer after prior treatment with gemcitabine.
17th September: We commented on NICE's draft scope for the proposed appraisal of Lutetium-177 for treating unresectable, somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumours.
3rd September: We submitted written evidence to the Health Committee's inquiry into primary care. Our response considered how reforms to primary care could benefit pancreatic cancer patients.
11th August: We submitted evidence to the Scottish Health and Sport Committee's inquiry on palliative care, looking at what could be done to improve the experience of pancreatic cancer patients.
16th April 2015: We have responded to a NHS consultation about proposed changes to allow supplementary prescribing by dietitians. We support the proposals which would allow properly trained and qualified dietitians across the whole of the UK to act as supplementary prescribers. This is because diet and access to specialist dietetic medication, such as Pancreatic Enyzyme Replacement Therapy (PERT) is extremely important to pancreatic cancer patients. We should hear more about whether these proposals will be progress later in the year.
16th April 2015: We have signed up in support of Cancer Focus Northern Ireland's campaign for Equal Access to Drugs in Northern Ireland. This is important to us as part of our Two More Months Campaign, which aims to make the new chemotherapy drug Abraxane available to eligible patients on the NHS across the whole of the UK. You can read more about the issues surrounding access to specialist medicines in Northern Ireland, and the ongoing consultation about proposed changes, here.
13th April 2015: We attended another workshop for charities held by the Cancer Taskforce. This was another opportunity for us to make sure the members of the Taskforce heard about the important issues for pancreatic cancer patients and their families.
27th February 2015: We have made a written submission to the Cancer Taskforce setting out some of the key points we want to see addressed in the new 5-Year Cancer Strategy for England. You can read a summary of our submission on our blog.
9th February 2015: GOOD NEWS! Abraxane is now approved for use on the NHS in Scotland, following a decision by the Scottish Medicines Consortium. This follows a long campaign by us and others. Read more about the decision and the background to it here and here.
2nd February 2015: We were part of a workshop hosted at Cancer Research UK, made up of different charity representatives, to discuss initial thoughts for a new 5-Year Cancer Strategy for England. The Strategy is being drafted by an independent Cancer Task Force and we will continue to feed into the development process over the coming months.
9th January 2015: A joint submission to NICE was made us and Pancreatic Cancer Action as part of the National Institute for Health and Care Excellence (NICE) following their consultation on new Referral Guidelines for Suspected Cancer. Our submission supported moves to encourage GPs to send patients for CT scans, but called for a broader range of symptoms to be included on the list that might trigger such a referral. We also argued strongly against the inclusion of age-thresholds at which that trigger should occur.
15th December 2014: We attended the public meeting of the Cancer Drugs Fund (CDF) which discussed whether to keep Abraxane on the CDF list of drugs. Further, closed, meetings of the CDF will now take place and we should know the outcome of the re-listing process at some point in January 2015.
9th December 2014: We attended a Patient And Clinician Engagement (PACE) meeting of the Scottish Medicines Consortium (SMC) in Glasgow, together with Pancreatic Cancer Action and local clinicians. We explained in more detail why we believe that Abraxane should be made available to eligible metastatic pancreatic cancer patients on the NHS in Scotland. The issues we raised at the meeting will now go forward to the full SMC meeting on 6th January 2015, when the committee will discuss the matter further. We hope the points we made are fully taken into account and that the SMC allows Abraxane onto the NHS in Scotland. We should know the final decision by 9th February 2015.
3rd November 2014: The Scottish Medicines Consortium are re-considering whether to allow the drug Abraxane to be made routinely available on the NHS in Scotland. We have made a new submission to the SMC arguing that they should make a positive decision. The application was made jointly with Pancreatic Cancer Scotland and Pancreatic Cancer Action. There will be meetings in December and January and we expect a decision to be made in February 2015.
31st October 2014: We made a submission to an NHS England consultation on the future of the Cancer Drugs Fund (CDF). The CDF make available certain cancer drugs which the National Institute for Health and Care Excellence have not deemed to be cost- or clinically-effective enough to be made routinely available on the NHS. As things stands, the pancreatic cancer drug, Abraxane, is on the CDF list, so this is a very important consultation for us. We argued that the CDF needs to focus on clinical-effectiveness rather than move too far down the path of cost-effectiveness, the latter of which would turn the CDF into a slightly less strict version of NICE. We also expressed concerns about the speed at which the consultation was progressing and that it was wrong to look at the CDF in isolation when what was required was a thorough overview of the whole drug commissioning system in England.
14th October 2014: We attended the NICE meeting in Manchester at which they considered comments made about their initial recommendation not to make Abraxane routinely available on the NHS in England. As part of their deliberations they acknowledged the points we made in our written submission but, disappointingly, there was no sign given that NICE would change their negative recommendation. We expect a final decision to be made in the next week or so and will provide an update on the situation as soon as possible.
30th September 2014: We have submitted a rebuttal to NICE's initial negative recommendation regarding Abraxane, setting out why we believe their assessment is wrong and reiterating that the drug represents a substantial and important advance for pancreatic cancer patients. NICE is scheduled to meet on 14th October to make a final decision whether to allow Abraxane to be made routinely available on the NHS in England. We hope they will listen to us, clinicians and, most importantly, patients and their families, and approve Abraxane .
22nd September 2014: The Welsh Health Minister has ratified a decision by the All Wales Medicines Strategy Group to make Abraxane routinely available on the NHS in Wales. Wales is now the first country in the UK to give routine access to the drug for eligible metastatic pancreatic cancer patients. Our Chief Executive, Alex Ford, has spoken out in support of the decision and has also reaffirmed that our "Two More Months Campaign" - which calls for Abraxane to be made available on the NHS across the whole of the UK - continues.
9th September 2014: NICE issued an initial recommendation NOT to approve Abraxane for routine use on the NHS in England. You can read our response here. Stakeholders, including us, have until 30th September to challenge this and we will be doing so robustly. A final decision is expected to be made in October.
21st August 2014: We met with Dr Richard Roope, the Clinical Lead for Cancer at the Royal College of General Practitioners. Doing more to boost early diagnosis of pancreatic patients is a priority for us and so we discussed ways in which more can be done to give GPs the training, support and resources they need to diagnos patients at an earlier stage.
12th August 2014: A NICE appraisal committee meeting was held in Manchester to consider whether to make the drug Abraxane routinely available on the NHS. (Read the background here). Having made a joint written submission to NICE with Pancreatic Cancer Action in support of Abraxane earlier in the year we were represented at the NICE meeting by Anna, our Head of Support and Information, who gave oral evidence from a patient and charity viewpoint. We should hear more about whether the drug has been added to the NICE list or not in the next few weeks and we will keep you informed of progress - keep an eye on Twitter and Facebook for updates.
8th July 2014: Pancreatic Cancer UK submitted comments to the National Institute for Health and Care Excellence (NICE) ahead of an appraisal for a new drug called liposomal cisplatin (Lipoplatin). We will be attending a more detailed scoping meeting later in July and will provide an update when we have more information.
19th June 2014: Pancreatic Cancer UK submitted a consultation response to the National Institute of Health and Care Excellence (NICE) on changes to the system used to decide whether new drugs and technologies get funded by the NHS. You can read a little more about the key issues on our blog.
11th June 2014: Pancreatic Cancer UK made a submission to the All Wales Therapeutics and Toxicology Centre, in which we presented the case for Abraxane to be made available to eligible pancreatic cancer patients on the NHS in Wales. As with our responses to the Scottish Medicines Consortium and the National Institute for Health and Care Excellence, the submission was made jointly with Pancreatic Cancer Action. A decision will be made by the All Wales Medicines Strategy Group on 3rd September
6th May 2014: We attended the public meeting of the Scottish Medicines Consortium as they considered whether to approve Abraxane for routine NHS use for eligible patients in Scotland. A decision is now expected in June.
2nd May 2014: Pancreatic Cancer UK is delighted to announce NHS England has referred the development of a pancreatic cancer Clinical Guideline and Quality Standard to the National Institute for Health and Care Excellence (NICE). The lack of updated NICE guidelines for pancreatic cancer has been a key platform of Pancreatic Cancer UK's lobbying activity since the publication of its 2011 "Study for Survival" report and the launch of our flagship "Campaign for Hope". This new guideline for pancreatic cancer is expected to positively impact on patient experience and treatment in secondary care. The NICE timeline for the development of these guidelines is yet to be confirmed but it is anticipated that the process will start late 2014 or early 2015.
2nd May 2014: Pancreatic Cancer UK have submitted our consultation response to NICE, making the case for Abraxane to be made routinely available on the NHS in England. This was a joint submission with Pancreatic Cancer Action to try to maximise impact. Although NHS England's Cancer Drugs Fund added Abraxane to its approved list in March, this is something of a stopgap and full NICE approval will mean longer-term, more routine NHS access to the drug. NICE's decision, due to be made by January next year, will also influence whether Abraxane can be used in Wales and Northern Ireland. We will keep you informed of progress.
25th April 2014: Pancreatic Cancer UK ran a second training day for nurses working with pancreatic cancer patients within the London region, held at UCL Partners. The day covered the same topics as the training on the 21st March. There was a lot of enthusiasm for the presentation and workshop on diet and nutrition for pancreatic cancer patients. A key question to arise from the day was 'should dietary symptoms in pancreatic cancer should be managed more
aggressively'. We will be organising more of these seminars around the UK over the coming year to help improve knowledge of key pancreatic cancer issues amongst health professionals, which in turn will lead to improved patient care.
23rd April 2014: Pancreatic Cancer UK has responded to a consultation being carried out by the National Assembly for Wales' Health and Social Care Committee. The consultation was part of the Assembly's Inquiry into how the Welsh Government is implementing its Cancer Delivery Plan. The Committee will be holding oral evidence sessions in June.
3rd April 2014:
Pancreatic Cancer UK has made a Patient Interest Group submission to the Scottish Medicines Consortium (SMC) ahead of their appraisal of Abraxane. We made a joint submission with Pancreatic Cancer Action to help maximise impact. The SMC will now make a decision in June about whether to make Abraxane available on the NHS for advanced pancreatic cancer patients in Scotland.
21st March 2014: Pancreatic Cancer UK organised a training day for nurses working with pancreatic cancer patients within the London region, held at the Royal Marsden. The Day covered new developments in treatment for pancreatic cancer, a patient story, updates on good pain management and a presentation and workshop on dietary support for pancreatic cancer patients. It also gave participants a chance to talk about some of the challenges to the role of the CNS. We will be organising more of these seminars around the UK over the coming year to help improve knowledge of key pancreatic cancer issues amongst health professionals, which in turn will lead to improved patient care.
19th March 2014: Good news! The NHS England Cancer Drugs Fund today announced that Abraxane has been added to its list of approved drugs. This means that eligible patients can now access the drug on the NHS in England. As our CEO, Alex Ford makes clear in her press statement though, whilst this is a welcome step, the CDF decision is something of a stopgap. We now turn our attention to making sure the National Institute for Care and Health Excellence will agree to make the drug routinely available on the NHS in England, and also press for it to be made available in Scotland, Wales and Northern Ireland. The next step is helping to make the case to the Scottish Medicines Consortium, who are due to make an appraisal on Abraxane sometime in June.
6th March 2014: Pancreatic Cancer UK attended the public meeting of the Cancer Drugs Fund as they discussed whether or not to add Abraxane to its list of approved drugs. We have been lobbying for the drug to be made available to patients as Abraxane, in combination with Gemcitabine, has been shown in trials to extend a patient's life for on average 2 months, however in some instances it has given people significantly more time. This is what our #TwoMoreMonths campaign has been pressing for.
26th February 2014: Pancreatic Cancer UK has launched its #TwoMoreMonths campaign, aimed at calling for key decision makers to add the recently licensed chemotherapy drug Abraxane® to the updated NHS England Cancer Drugs Fund list. You can read more about the campaign here.
6th February 2014: Abraxane, a new drug which has been found to extend a patient's life for on average 2 months, has today been licensed for use in the UK and Ireland. Alex Ford, CEO of pancreatic Cancer UK, has welcomed the decision. See her comments in the Daily Mail.
Stewart Jackson MP asks the Health Minister what she is doing to improve diagnosis and treatment of pancreatic cancer.