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Report on NHS England’s Cancer transformation programme published

You can read the progress report from NHS England’s Cancer transformation programme here.

The report details the investment the NHS is making in cancer transformation, including £130m over the period 2016/18 in new and upgraded radiotherapy equipment and £200m over the next two years to accelerate rapid diagnosis and enhance patients’ quality of life.

The report describes progress across the field including:

  • Modernisation of radiotherapy equipment throughout the country.
  • New models of care introduced to ensure cancer is diagnosed earlier and improve survival.
  • Establishment of Cancer Alliances across the country to bring together clinical leaders, healthcare workers, patients and charities for better coordination of care.

Achieving World-Class Cancer Outcomes – Progress Report 2016-17 describes the significant advances the National Cancer Programme has made over the past year as it moves towards the full delivery of the NHS five-year national cancer strategy.  The strategy was developed in 2015 by an Independent Cancer Taskforce that was asked to deliver the vision set out in the NHS Five Year Forward View.

As well as the work on new models and clinical pathways, the 2017 progress report also details action on standards and metrics.  Five pilot sites are now testing a new faster diagnosis standard that will ultimately ensure patients receive a cancer diagnosis or an “all clear” verdict within 28 days. 

A new quality of life metric – the first anywhere in the world – is currently being tested in multiple sites around England.  Its purpose is to measure long-term outcomes for patients once treatment has been completed.

Cally Palmer, the NHS National Cancer Director, said:

“Cancer survival rates have never been higher than they are today and patients are reporting a very good experience of cancer care. 

“I am confident the NHS can deliver the recommendations of the Cancer Taskforce and I am certain these recommendations will improve survival rates even further, enhance quality-of-life for cancer patients and ultimately provide the very best cancer services to patients everywhere.”

Advanced Prostate Cancer Q&A on Video

If you've got some questions that need answering about advanced prostate cancer, try these two online videos:

Advanced Prostate Cancer - Video 1

Advanced Prostate Cancer - Video 2

Management of Patients with Advanced Prostate Cancer

The European Association of Urology, via publisher Elsevier B.V., has reported on The Advanced Prostate Cancer Consensus Conference APCCC 2017

BACKGROUND: In advanced prostate cancer (APC), successful drug development as well as advances in imaging and molecular characterisation have resulted in multiple areas where there is lack of evidence or low level of evidence. The Advanced Prostate Cancer Consensus Conference (APCCC) 2017 addressed some of these topics.

OBJECTIVE: To present the report of APCCC 2017.

DESIGN, SETTING, AND PARTICIPANTS: Ten important areas of controversy in APC management were identified: high-risk localised and locally advanced prostate cancer; "oligometastatic" prostate cancer; castration-naïve and castration-resistant prostate cancer; the role of imaging in APC; osteoclast-targeted therapy; molecular characterisation of blood and tissue; genetic counselling/testing; side effects of systemic treatment(s); global access to prostate cancer drugs. A panel of 60 international prostate cancer experts developed the program and the consensus questions.

OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: The panel voted publicly but anonymously on 150 predefined questions, which have been developed following a modified Delphi process.

RESULTS AND LIMITATIONS: Voting is based on panellist opinion, and thus is not based on a standard literature review or meta-analysis. The outcomes of the voting had varying degrees of support, as reflected in the wording of this article, as well as in the detailed voting results recorded in Supplementary data.

CONCLUSIONS: The presented expert voting results can be used for support in areas of management of men with APC where there is no high-level evidence, but individualised treatment decisions should as always be based on all of the data available, including disease extent and location, prior therapies regardless of type, host factors including comorbidities, as well as patient preferences, current and emerging evidence, and logistical and economic constraints. Inclusion of men with APC in clinical trials should be strongly encouraged. Importantly, APCCC 2017 again identified important areas in need of trials specifically designed to address them.

PATIENT SUMMARY: The second Advanced Prostate Cancer Consensus Conference APCCC 2017 did provide a forum for discussion and debates on current treatment options for men with advanced prostate cancer. The aim of the conference is to bring the expertise of world experts to care givers around the world who see less patients with prostate cancer. The conference concluded with a discussion and voting of the expert panel on predefined consensus questions, targeting areas of primary clinical relevance. The results of these expert opinion votes are embedded in the clinical context of current treatment of men with advanced prostate cancer and provide a practical guide to clinicians to assist in the discussions with men with prostate cancer as part of a shared and multidisciplinary decision-making process.

To read the report in full, click here.

New Diagnostic Blood Test will help target drugs for men with advanced prostate cancer

Tackle Trustee Hugh Gunn was interviewed on ITV this week about a new Diagnostic Blood Test which costs less than £50 and can predict whether patients with advanced prostate cancer are likely to respond to certain drugs and whether they might be better served by alternative therapy.

The blood test identified a particular gene which is resistant to the drug. This test could save the NHS thousands of pounds.

Watch Hugh's interview here.

Prostate cancer screening reconsideration by the USPSTF in the USA

In 2012 the influential United States Preventive Services Task Force (USPSTF) decreed that there was no value in PSA testing for prostate cancer as the “harms” of screening outweighed the “benefits” in terms of lives saved.  This put the USPSTF at loggerheads with most expert American urological opinion but nevertheless resulted in a fall in PSA screening.  The USPSTF was heavily criticised for having no prostate cancer specialists on its panel and also for failing to identify black African Americans and men with a family history of prostate cancer as being in special risk categories that require a proactive, informed approach to screening.

Since 2012 the proportion of American men presenting with advanced prostate cancer has risen and as more and more screening trials and advances in clinical practice are reported, the USPSTF’s position has become increasingly isolated.

It is therefore of considerable relief to hear that the USPSTF has drafted recommendations that support “discussion-backed decisions for men aged 55-69 based on clinician-patient discussion” that allow patients to make an informed decision based on up to date trial evidence and advances in clinical practice that have significantly reduced the risks of “over- diagnosis” and “over-treatment”.

It is to be hoped that the UK’s National Screening Committee will similarly move to a more positive stance on screening.

Tackle joins with APPGC to raise awareness of the importance of improving local one-year survival rates

Tackle were pleased to be involved with the All-Party Parliamentary Group on Cancer (APPGC) which has written to all CCGs in England to highlight the important role they have in improving one-year survival rates, and to offer support in helping to achieve this. Read the letter.

We fully support John Baron MP, Chairman of the APPGC who said: “If we are going to improve cancer survival rates, we must improve early diagnosis. By writing to CCGs we hope to further raise awareness of this issue, and encourage them to drive forward improvements so that thousands more people are able to survive cancer.

“We have also written to offer our support as we are conscious that CCGs do not have responsibility for broad national issues, such as the workforce. The APPGC’s summer Parliamentary reception, which recognises the 20 CCGs which have most improved their one-year figures, presents a further opportunity to engage.”

Vital Funding for Drugs - Share the Petition!

Tackle Prostate Cancer is one of 19 cancer charities working together to campaign and lobby for better treatment and access to drugs.  As a coalition, we are trying to have NHS England and NICE reconsider their plan to cap drug treatment costs.   One of the actions we have taken is to try and get as many people as possible to sign a petition to stop this proposal.  The petition has been developed by Prostate Cancer UK on behalf of all our charities. 

We urgently need your help, to persuade NHS England and the National Institute for Health and Care Excellence (NICE) to reconsider plans that threaten to have a devastating impact on men fighting prostate cancer in the future.

What we know

The plans would mean NHS England can indefinitely delay access to any new treatment which doesn’t fit under its proposed cost cap. This means that breakthrough treatments for advanced prostate cancer such as enzalutamide and abiraterone may have been delayed for years, arrived in the NHS too late for the thousands of men whose lives they have extended, or never have arrived at all. We are seriously concerned for the treatments of the future, which is why we need you to sign our petition.  

Help us fight for change

Although we recognise the significant financial challenges facing the current system, this is not the solution. NHS England and NICE need to hear this is unacceptable for patients and come up with a proposal that makes sure patients get the drugs and treatments they need, when they need them. 

 

LINK TO THE PETITION:  https://www.change.org/p/nhs-engand-don-t-delay-funding-for-vital-drugs-and-treatments

Accentuate the Positive!

New research suggests that keeping a positive mental attitude is important in surviving cancer. The study shows that people who are anxious or depressed are far more likely to die from the disease.

As Tackle trustee Hugh Gunn commented: "I could not agree more! How else could I have turned a prognosis of 18 months into 11 years".

Read the full story here and stay positive!

Putting the Patient Perspective

A key part of our campaigning is to put the patient perspective.

Keith Cass, Tackle Trustee, has been doing that recently. He was a member of the independent panel reviewing how local health boards in Wales carry out Individual Patient Funding Requests (IPFR). Keith provided the patient perspective. You can read and download the full report here.

Keith's important contribution was recognised in a letter of thanks from Vaughan Gething AM,  the Welsh Cabinet Secretary for Health, Well-being and Sport which you can read here.

 

BBC Radio 4 Inside Health Programme on Prostate Cancer

For anybody that missed this show, you can catch it up here.

Merits of PSA Testing

Medscape reports that, "although about two fifths of all of physicians (42%)...said they believe the prostate specific antigen (PSA) test is overused, a huge majority (90%) said the benefits of the test always, often, or sometimes outweigh the risks, and many frequently recommend a baseline diagnostic for their male patients".

One oncologist, James Benton, MD, said screening is not the issue. "It is what one does with the information that is the real issue," he said. "Medical bureaucrats should not be the arbiters of decisions to screen or not screen," said Dr Benton, adding, "A man in conjunction with his family and doctor should have an unobstructed right to know if he has a cancer and make an informed decision as to how he will proceed with various treatment options ― from active surveillance, radiation, or surgery."

Read the article in full here.

 

 

 

90% of men receiving curative treatment for prostate cancer say their care was very good

Ninety percent of men who had surgery or radiotherapy to cure their prostate cancer in the English NHS rated their care as 8 or above on a scale ranging from 0 (“very poor”) to 10 (“very good”) according to the third annual report of the National Prostate Cancer Audit (NPCA) published by the Clinical Effectiveness Unit at the Royal College of Surgeons today. The audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme.

Prostate cancer is the most frequently diagnosed cancer in men and the third most common cause of cancer-related mortality in the United Kingdom, with about 40,000 new cases each year resulting in 10,000 deaths. The NPCA audit looks at whether NHS services in England and Wales for men diagnosed with prostate cancer meet recommended standards.

In its third year, the NPCA investigated the care men received following a diagnosis of prostate cancer between April 2014 and March 2015 in the English NHS. The report also contains the first preliminary results for men diagnosed in Wales between April 2015 and October 2015.

The audit found four out of five men reported that their views were taken into account, that they had been involved when decisions about their care were made, and that they were given the contact details of a clinical nurse specialist who would support them through their treatment. These results were based on just over 5,450 responses to a survey that was mailed to all men who had had curative treatment 18 months after their prostate cancer was diagnosed.

The survey also showed that many men reported poor sexual function as a side-effect of their curative treatment. However, urinary incontinence, which is another possible side-effect of the treatment, was reported by most men as a much less severe problem.  In response, the audit recommends that all men who have side-effects of prostate cancer treatment should have early and ongoing access to supportive specialist services.

Professor Heather Payne, NPCA Oncological Clinical Lead, representing British Uro-oncology Group, said:

“The National Prostate Cancer Audit demonstrates that men with prostate cancer who have curative treatment report a good experience of the care that they receive.

“It is welcome news that men report that they are involved in the decision- making process with regards to their management. It is also reassuring that the majority of men have access to a specialist nurse who plays an important role when these decisions are being made and later will provide further support after the treatment is completed.”

The audit also demonstrates that in England the percentage of men with locally advanced prostate cancer who undergo curative treatments with surgery and/or radiotherapy continues to rise.  This percentage increased from 27% between 2006 and 2008 and 47% between 2010 and 2013 to 61% in men diagnosed between April 2014 and March 2015. The increased use of these therapies in men with locally advanced cancer is in line with national guidelines.

Professor Noel Clarke, NPCA Urological Clinical Lead, representing British Association of Urological Surgeons, said:

“It is very encouraging to see that the number of men with locally advanced prostate cancer (prostate cancer that has a high risk of spreading but is still potentially curable) who receive curative primary treatment is still going up. We know that in particular healthy older men have the potential of a long-term cancer cure with multimodal curative therapies.”

In Wales, the NPCA commenced one year later than in England. As a consequence of this later start performance indicators reflecting how men with prostate cancer were being treated in the Welsh NHS are not yet available. However, preliminary findings demonstrate that the completeness of the data is excellent which reflects the crucial contribution that clinicians make to the collection of audit data in Wales.

Professor Howard Kynaston, NPCA Urological Clinical Lead in Wales, said:

“The high level of completeness of data collection that the Audit received for Welsh patients demonstrates that we have an unrivalled opportunity to evaluate cancer services provided to men with prostate cancer by the Welsh NHS.

“I look forward to seeing the results for key performance indicators that will inform how well the prostate cancer services provided to men diagnosed in Wales meet national guidelines.”

The NPCA is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme in response to the need for better information about the quality of prostate cancer services in England and Wales.

The audit is based in the Clinical Effectiveness Unit (CEU) at the Royal College of Surgeons of England (RCS) and is led by clinical experts from the British Association of Urological Surgeons (BAUS) and the British Uro-Oncology Group (BUG). The National Cancer Registration and Analysis Service (NCRAS) manage the data collection in England and Public Health Wales does the same in Wales.

Tackle celebrates successful SMC campaign allowing Cabazitaxel in Scotland

Thanks to Tackle’s continued effective campaigning, NHS Scotland will now provide Cabazitaxel, a life-extending drug for advanced prostate cancer patients who need it. The drug is predicted to help almost 60 men, it is given when the cancer can’t be controlled by hormones and is taken after treatment with Docetaxel. Tackle’s campaigning has helped improve lives by getting Cabazitaxel back on the Cancer Drugs Fund and for use on NHS in England, as well as six more major approval advances.
 
Roger Wotton, Chairman of Tackle commented: “This is positive news for men in Scotland who now have the same access as other men in the UK to a life-prolonging treatment that increases their chance to live longer. Any extension of time a man with prostate cancer is able to get back to be with family and friends is highly important. The availability of Cabazitaxel (Jevtana) means men in Scotland now have an alternative effective treatment option. Likewise, physicians now have another effective medicine in their arsenal to treat patients.”  
 
 Hugh Gunn, trustee and lead campaigner for Tackle, thanks his own Cabazitaxel treatment for still being alive and well today: “This approval is particularly poignant as Tackle led the campaign and I myself have greatly benefited from accessing Cabazitaxel in England, otherwise I feel I would be very near the end of my life.”

Tackle Supports PCUK Erectile Dysfunction Campaign

Prostate cancer patients ‘abandoned to deal with erection problems alone’ - Prostate Cancer UK warns

Thousands of prostate cancer survivors affected by erectile dysfunction are being abandoned without adequate support, new Freedom of Information (FOI) data obtained by Prostate Cancer UK has revealed.

Today, the UK’s leading men’s health charity has issued a warning that patchy, insufficient care for erection problems is leaving men across the country with unnecessary long term physical and psychological damage, and is calling on the nation to take action by campaigning for better care in their area.   

Erectile dysfunction is a common side effect of prostate cancer treatment, affecting 76% of men who have been treated for the disease but it can often be treated if the right care is available.

However, the results of recent FOI requests issued by Prostate Cancer UKreveal a dramatic post code lottery of support with just 13% of local health commissioners across the UK providing the breadth of treatment and services needed to give men living with this challenging condition the best chance of recovery. These findings are reinforced by the results of a survey of over 500 men with erectile dysfunction after prostate cancer treatment,  in which as many as 1 in 4 (24%) men claimed no one offered them support or medication to deal with the issue.

John Robertson, Specialist Nurse at Prostate Cancer UK said; “When it comes to treating erectile dysfunction following prostate cancer treatment, early support and treatment is vital.

“As a specialist nurse, I regularly speak to men at rock bottom because they can no longer get or maintain an erection. Not only can it put a complete stop to a man’s sex life, it can have devastating longer term implications including depression and relationship breakdowns. It is therefore incredibly concerning that only a handful of men are getting the support needed to overcome this condition and it’s shocking that in some areas men aren’t getting any support whatsoever.”

It is the responsibility of commissioners (CCGs in England, Health Boards in Scotland and Wales and Health & Social Care Trusts in Northern Ireland) to bring about change at a local level. In a bid to put a stop to the wide disparity in care, Prostate Cancer UK is calling on the public to put urgent pressure on health funders in the worst performing areas to ensure they are held accountable for improving access to treatments and support.

Recent treatment guidance for erectile dysfunction produced by Prostate Cancer UK and Macmillan Cancer Support recommends early intervention and a choice of five treatment and support options in order to give men the best chance of recovery.  Treatment and support should include access to a NHS erectile dysfunction clinic, an appropriate choice of medication including daily low dose tadalafil (Cialis®), vacuum pumps, and access to psychosexual clinics and counselling services. Erectile dysfunction clinics are widely regarded as the most essential service, as they provide support across both physical and emotional needs and help men to understand what they should expect at each stage of their recovery. However, the FOI results revealed that only half (51%) of commissioners could confirm that they offer this as an option. Two commissioners admitted that they offer no support whatsoever and almost 1 in 5 (17%) were completely unaware of the arrangements in their area. 17 commissioners failed to provide satisfactory information for all questions raised in the request.

Robertson continued; “This is an issue that has been swept under the carpet for too long and thousands of men have been left to suffer in silence. Erectile dysfunction is a debilitating health condition and it must be taken seriously by the NHS and commissioning groups.  Now is the time to take action – everyone can do their bit to make sure men across the country get access to the vital support they need.”

Brian White from Leeds (42) was diagnosed with prostate cancer at the age of 41. He had an operation to remove his prostate in October 2015.

“My partner and I were made fully aware of the possible side effects – incontinence and erectile dysfunction, but at the time I was so focussed on getting rid of the cancer – the longer term implications didn’t really come into question.

“One year down the line and I’m still in remission but I’m living with the harsh side effects of my treatment. Thankfully my incontinence is much better but I’m still struggling with erections. I’m only 42 and my partner is 36. Sex and intimacy is so important to us, as it is to most relationships and adjusting to a different way of life has been incredibly difficult. The spontaneity of our sexual relationship has gone and now every intimate moment has to be planned well in advance.

“Things are certainly improving but the road to recovery is a long one. I want to make everyone aware that support for erectile problems shouldn’t be a ‘nice to have’ - it’s essential. Before any man undergoes treatment for prostate cancer he needs to be safe in knowledge that there is appropriate care on the other side to help him with the aftermath. The fact that some men don’t get access to any support whatsoever is shocking.”

To join the fight and campaign for better care for men in your area, visit: bettercare.prostatecanceruk.org 

For further information on erectile dysfunction visit: prostatecanceruk.org/erectiledysfunction or speak to Prostate Cancer UK’s Specialist Nurses on 0800 074 8383.

Members share their prostate cancer stories on BBC Breakfast

A number of our members - beginning with Tackle Chairman Roger Wotton - were shown on BBC Breakfast telling their prostate cancer story in twitter-sized takes. See them here.

The PSA Debate across the pond

The debate about PSA testing and national prostate screening programmes continues to be debated around the world. Tackle welcomes thie latest contribution from across the pond which challenges current guidelines over there and makes a strong case generally for a prostate cancer screening programme. See the debate on Fox News here.

Tackle commends Ben Stiller for sharing his prostate cancer experience

We commend Ben Stiller for sharing his experience of being diagnosed with prostate cancer. Thanks to a wise and informed clinician, he has been saved from joining the ever increasing ranks of men diagnosed with advanced and incurable prostate cancer, which is partly as a result of the continuing misinformation and negative publicity about the PSA Test. This is exemplified by the ill-informed recommendation from the US Preventative Services Task Force (USPTF) that the test should not be offered to asymptomatic men. Well-informed clinicians (such as Mr Stiller’s) wisely ignore this recommendation, but it still has great influence over those clinicians not expert in the field, or do not have the time to read up and understand this complex problem.

No man was ever harmed by knowing his PSA. The harm, if it comes, used to come from what clinicians do with the results. But the rush to invasive diagnosis and over-treatment common in the last century is rarer these days as an intelligent, informative and risk-based approach is adopted in most centres. Examples of this are increasing use of MRI before biopsy, and the adoption of Active Surveillance as a management regime for low risk disease. What is important to point out is that all these techniques depend on an initial PSA test.

If PSA testing of asymptomatic men were to be stopped (as the USPTF would wish) the vast majority of men who develop prostate cancer would present with later stages of the disease that has spread beyond the prostate, and in most cases they would die from it.

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