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Public Affairs Award Submission FINAL

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Stuart Barber
Stuart Barber

The campaign resulted in ending Scotland's system that denied cancer patients access to drugs available in England due to a postcode lottery. With a minimal budget, the campaign highlighted individual patient stories and advocated for the charity's proposed "Triple Lock" solution. This increased political and media pressure on the Scottish government, resulting in the system's replacement with a new Peer Approved Clinical System based on the campaign's solution. The campaign succeeded in its goal of ensuring equal access to treatments for Scottish bowel cancer patients.

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PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo Why should the campaign win the award? The Scottish Government bowed to pressure to end a postcode lottery that denied patients access to cancer drugs that were freely available in England. From a standing start, with no initial presence in Scotland and with minimal budget, our ‘hearts and minds’ campaign resulted in the end of a system that was failing cancer patients. The issues were lifted to the top of a political agenda that was dominated by the referendum, with the First Minister and the Cabinet Secretary answering questions in Parliament and the media, pushing them to take action without delay.
PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo Campaign Budget: below £10,000 What was the purpose of the campaign? As a charity advocating for bowel cancer patients, we received reports from Scottish patients unable to access treatments that their clinicians felt could benefit them, as patients in England could. In response, we had a clear goal – to end restrictions on access to treatments for bowel cancer. The widening disparity was leading to a postcode lottery for cancer between nations, meaning Scottish patients were three times less likely to get the latest cancer drugs than patients in England 1 . They were forced to pay £3,000 a month to fund treatment themselves, or else forego the treatment because they couldn’t afford it, with tragic consequences. Some were forced to consider relocation to another region, or cross the border to England. Despite acknowledgement from across the political spectrum that there was a problem with Scotland’s poor provision of new cancer medicines, there was no urgency by Government or even some cancer charities in Scotland to address the immediate needs of cancer patients. It was clear patients’ voices needed to be heard without delay, whilst a new, solution was needed to give patients certainty that they would be able to access the drugs they needed to help prolong their lives. Our campaign, with its Triple Lock formula proposal did just that. Objectives To ensure Scottish bowel cancer patients had access to the same drugs as their neighbours in England by lobbying for the abolition of the current IPTR process and securing the adoption of our Triple Lock model, through:  Increasing political and media pressure on the Scottish Government to take immediate and decisive action to resolve the problems facing patients.  Highlighting patient concerns by developing a network of informed and empowered patient advocates.  Ensuring Beating Bowel Cancer was accepted by key stakeholders as a leading authority and commentator on the issue. Strategy Against a background of the Government’s New Medicines Review and a Parliamentary Inquiry into access to new medicines, we had to ensure that key stakeholders knew Beating Bowel Cancer was advocating for patients in Scotland; by clearly and decisively establishing our position on fairer access very quickly in order to move the political debate along. We set out to engage with patients, parliamentarians and policymakers through a sustained and prolonged ‘hearts and minds’ media and lobbying campaign highlighting the plight of patients denied access to key bowel cancer drugs and influencing any proposed improvements, and subsequent solutions with our own Triple Lock model. Method Deployed May 2013  Highlighted the issues in MSP briefing papers and letters to opposition spokespersons on health and co-conveners of the parliamentary Cross-Party Group on Cancer.  Sourced and worked with 4 patients who were being denied drugs. Arranged one to one meetings with MSPs and media editors.  Private meetings with opposition health spokespeople calling for urgent action on drug access. Ensured Scottish Labour leader Johann Lamont MSP raised the issue at First Minister’s Questions two weeks running, highlighting a case of a patient forced to move to England. Headline after headline focusing on Scotland’s ‘health refugees’ appears in Daily Express, Press and Journal, Daily Mail, Daily Record, The Herald, The Scotsman, STV and BBC Scotland.  We released our Triple Lock model to key stakeholders, winning early endorsement from clinicians, pharmaceutical companies and patients. Triple Lock was circulated to MSPs as a way to break the policy impasse.  A one-to-one meeting with Health Secretary Alex Neil and key officials, including Head of Medicines Policy Kathryn Fergusson.  Submitted evidence to the Parliamentary Health & Sport Committee criticising IPTRs and the recommendations of the New Medicines Review. Our submission receives extensive coverage in Daily Mail, Daily Express, The Sunday Times, The Herald, The Metro, The Sun, The Scotsman, Edinburgh Evening News and Glasgow Evening Times.  Beating Bowel Cancer responses to a survey highlighting that a third of oncologists knew of patients moving across the border to get treatment generating 27 media mentions.  ‘Scandal of Scotland’s NHS Postcode Lottery’ makes front page headlines in Scottish Mail on Sunday with bowel cancer patient forced to pay £3,000 a month for treatment.  ‘Cancer care apartheid denies Scots drugs’ appears in follow up article in Mail on Sunday.  ‘Cancer Drugs: A Great Victory’ front page headline in Mail on Sunday. Further articles in Daily Mail and Daily Express. 1 Rarer Cancers Foundation, Nations divided? An assessment of variations in access to cancer treatments for patients in England, Scotland and Wales, August 2011
PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo  Cabinet Secretary Alex Neil goes head to head with Beating Bowel Cancer CEO, Mark Flannagan, in an hour long debate on BBC Scotland’s flagship morning phone-in show ‘Call Kaye’. On the same day, we secured a 1000-word article on the leader page of The Scotsman under the by-line ‘Scotland needs free, fair cancer drug access.’ June-Sept 2013  Our Triple Lock model was submitted to the Parliament’s Health & Sports Committee as part of its inquiry into new medicines. Participated in a stakeholder consultation to review MSP recommendations and called for immediate changes to fix the problem.  As the Health and Sports Committee publishes its report. We were one of just four organisations singled out for their constructive approach in working with government on improving the system. The report generates wide coverage with the charity quoted in The Scotsman, The Times, The Herald, The Press and Journal, Sunday Express.  The Scotsman publishes further opinion piece under the by-line ‘Give bowel cancer patients the drugs they need’.  Sustained coverage in the Mail on Sunday and the Daily Mail under headlines ‘Drugs row cancer patient must beg for her life – yet again’ and ‘Watchdog condemns NHS over drug refusal ’. Further front page headline ‘My joy over drug war’ in Mail on Sunday, including editorial comment.  Sustained coverage in Sunday Post of bowel cancer patient under headline ‘Cancer mum forced to take handouts to fund vital treatment’ October – December 2013  Death of IPTR system as the Government announces new Peer Approved Clinical System. The key principle underpinning our model – that the patient’s clinician should be at the heart of decisions over drug access – is embedded within the Government’s new system, due to be unveiled in May 2014.  Alex Neil speaks at the Beating Bowel Cancer Parliamentary reception where he commits to ensuring cancer patients are not unduly disadvantaged by promising to do all he could to break down the barriers giving more patients access to the drugs they need. Outcomes The campaign delivered a new system for accessing cancer drugs. From a standing start with no initial presence in Scotland, our media and lobbying campaign pressurised ministers to end a system that was failing cancer patients. The issues were lifted to the top of the political agenda, with the First Minister and the Cabinet Secretary answering questions in Parliament and the media, pushing them to take action without delay. We ensured that Beating Bowel Cancer was accepted as a leading authority and commentator on the issue of drugs access with all key stakeholders. At the end of the campaign, the Cabinet Secretary announced a package of improvements including the scrapping of IPTR, replacing it with a Peer Approved Clinical System (PACS) which has the principle of our policy solution, Triple Lock, at its centre. We had clear acknowledgement that the Government listened to patients and adopted our solution. Relation to objectives and cost-effectiveness The role of patient advocates was central to our campaign. With minimal budget, we focused on identifying and then targeting key political influencers and media editors with strong patient stories which bought the issues to life. By facilitating meetings between patients and their MSPs we ensured key parliamentary champions who were able to cite patients in parliamentary debates. We forced the First Minister to defend the provision of cancer drugs in the Chamber - with a patient who felt let down sitting directly above him in the public gallery. We forced the key decision maker - the Cabinet Secretary for Health – into a live broadcast debate that pitted him against our most powerful influencers; the actual patients who would be affected by his decisions. As a pragmatic politician, the Cabinet Secretary stated in our meeting that the only way to make the headlines go away was if he listened to the patients. Creativity / originality Patients were front and central to our lobbying. Strong, emotive patient stories caught the imagination of the national media. We worked closely with a number of patients (and their families) to facilitate targeted media interviews securing the support of key national editors which generated timely front page headlines and comment, bringing audiences right to the heart of the problem. We also managed to present a totally novel policy solution, which government explicitly told us ‘led to the conclusion that the patient’s lead clinician who will know them best should be central to the decision making process’ (Scottish Government Health and Social Care Directorate). People Beating Bowel Cancer: Stuart Barber, Campaigns Director; Elspeth McAusland, Head of Communications; Mark Flannagan, Chief Executive. Indigo: Peter Smyth, public affairs consultancy. Patient Advocates: Janice * and Alan Glasswell. Ian * and Jacqui Morrison. Maureen and Ian Fleming. June * and Graeme Rankin. Tina McGeever. Isabelle and Matt McManus . * These patients have subsequently passed away.

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Public Affairs Award Submission FINAL

  • 1. PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo Why should the campaign win the award? The Scottish Government bowed to pressure to end a postcode lottery that denied patients access to cancer drugs that were freely available in England. From a standing start, with no initial presence in Scotland and with minimal budget, our ‘hearts and minds’ campaign resulted in the end of a system that was failing cancer patients. The issues were lifted to the top of a political agenda that was dominated by the referendum, with the First Minister and the Cabinet Secretary answering questions in Parliament and the media, pushing them to take action without delay.
  • 2. PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo Campaign Budget: below £10,000 What was the purpose of the campaign? As a charity advocating for bowel cancer patients, we received reports from Scottish patients unable to access treatments that their clinicians felt could benefit them, as patients in England could. In response, we had a clear goal – to end restrictions on access to treatments for bowel cancer. The widening disparity was leading to a postcode lottery for cancer between nations, meaning Scottish patients were three times less likely to get the latest cancer drugs than patients in England 1 . They were forced to pay £3,000 a month to fund treatment themselves, or else forego the treatment because they couldn’t afford it, with tragic consequences. Some were forced to consider relocation to another region, or cross the border to England. Despite acknowledgement from across the political spectrum that there was a problem with Scotland’s poor provision of new cancer medicines, there was no urgency by Government or even some cancer charities in Scotland to address the immediate needs of cancer patients. It was clear patients’ voices needed to be heard without delay, whilst a new, solution was needed to give patients certainty that they would be able to access the drugs they needed to help prolong their lives. Our campaign, with its Triple Lock formula proposal did just that. Objectives To ensure Scottish bowel cancer patients had access to the same drugs as their neighbours in England by lobbying for the abolition of the current IPTR process and securing the adoption of our Triple Lock model, through: ï‚· Increasing political and media pressure on the Scottish Government to take immediate and decisive action to resolve the problems facing patients. ï‚· Highlighting patient concerns by developing a network of informed and empowered patient advocates. ï‚· Ensuring Beating Bowel Cancer was accepted by key stakeholders as a leading authority and commentator on the issue. Strategy Against a background of the Government’s New Medicines Review and a Parliamentary Inquiry into access to new medicines, we had to ensure that key stakeholders knew Beating Bowel Cancer was advocating for patients in Scotland; by clearly and decisively establishing our position on fairer access very quickly in order to move the political debate along. We set out to engage with patients, parliamentarians and policymakers through a sustained and prolonged ‘hearts and minds’ media and lobbying campaign highlighting the plight of patients denied access to key bowel cancer drugs and influencing any proposed improvements, and subsequent solutions with our own Triple Lock model. Method Deployed May 2013 ï‚· Highlighted the issues in MSP briefing papers and letters to opposition spokespersons on health and co-conveners of the parliamentary Cross-Party Group on Cancer. ï‚· Sourced and worked with 4 patients who were being denied drugs. Arranged one to one meetings with MSPs and media editors. ï‚· Private meetings with opposition health spokespeople calling for urgent action on drug access. Ensured Scottish Labour leader Johann Lamont MSP raised the issue at First Minister’s Questions two weeks running, highlighting a case of a patient forced to move to England. Headline after headline focusing on Scotland’s ‘health refugees’ appears in Daily Express, Press and Journal, Daily Mail, Daily Record, The Herald, The Scotsman, STV and BBC Scotland. ï‚· We released our Triple Lock model to key stakeholders, winning early endorsement from clinicians, pharmaceutical companies and patients. Triple Lock was circulated to MSPs as a way to break the policy impasse. ï‚· A one-to-one meeting with Health Secretary Alex Neil and key officials, including Head of Medicines Policy Kathryn Fergusson. ï‚· Submitted evidence to the Parliamentary Health & Sport Committee criticising IPTRs and the recommendations of the New Medicines Review. Our submission receives extensive coverage in Daily Mail, Daily Express, The Sunday Times, The Herald, The Metro, The Sun, The Scotsman, Edinburgh Evening News and Glasgow Evening Times. ï‚· Beating Bowel Cancer responses to a survey highlighting that a third of oncologists knew of patients moving across the border to get treatment generating 27 media mentions. ï‚· ‘Scandal of Scotland’s NHS Postcode Lottery’ makes front page headlines in Scottish Mail on Sunday with bowel cancer patient forced to pay £3,000 a month for treatment. ï‚· ‘Cancer care apartheid denies Scots drugs’ appears in follow up article in Mail on Sunday. ï‚· ‘Cancer Drugs: A Great Victory’ front page headline in Mail on Sunday. Further articles in Daily Mail and Daily Express. 1 Rarer Cancers Foundation, Nations divided? An assessment of variations in access to cancer treatments for patients in England, Scotland and Wales, August 2011
  • 3. PR Week Awards – Public Affairs Access for All (Scotland) campaign - Beating Bowel Cancer with Indigo ï‚· Cabinet Secretary Alex Neil goes head to head with Beating Bowel Cancer CEO, Mark Flannagan, in an hour long debate on BBC Scotland’s flagship morning phone-in show ‘Call Kaye’. On the same day, we secured a 1000-word article on the leader page of The Scotsman under the by-line ‘Scotland needs free, fair cancer drug access.’ June-Sept 2013 ï‚· Our Triple Lock model was submitted to the Parliament’s Health & Sports Committee as part of its inquiry into new medicines. Participated in a stakeholder consultation to review MSP recommendations and called for immediate changes to fix the problem. ï‚· As the Health and Sports Committee publishes its report. We were one of just four organisations singled out for their constructive approach in working with government on improving the system. The report generates wide coverage with the charity quoted in The Scotsman, The Times, The Herald, The Press and Journal, Sunday Express. ï‚· The Scotsman publishes further opinion piece under the by-line ‘Give bowel cancer patients the drugs they need’. ï‚· Sustained coverage in the Mail on Sunday and the Daily Mail under headlines ‘Drugs row cancer patient must beg for her life – yet again’ and ‘Watchdog condemns NHS over drug refusal ’. Further front page headline ‘My joy over drug war’ in Mail on Sunday, including editorial comment. ï‚· Sustained coverage in Sunday Post of bowel cancer patient under headline ‘Cancer mum forced to take handouts to fund vital treatment’ October – December 2013 ï‚· Death of IPTR system as the Government announces new Peer Approved Clinical System. The key principle underpinning our model – that the patient’s clinician should be at the heart of decisions over drug access – is embedded within the Government’s new system, due to be unveiled in May 2014. ï‚· Alex Neil speaks at the Beating Bowel Cancer Parliamentary reception where he commits to ensuring cancer patients are not unduly disadvantaged by promising to do all he could to break down the barriers giving more patients access to the drugs they need. Outcomes The campaign delivered a new system for accessing cancer drugs. From a standing start with no initial presence in Scotland, our media and lobbying campaign pressurised ministers to end a system that was failing cancer patients. The issues were lifted to the top of the political agenda, with the First Minister and the Cabinet Secretary answering questions in Parliament and the media, pushing them to take action without delay. We ensured that Beating Bowel Cancer was accepted as a leading authority and commentator on the issue of drugs access with all key stakeholders. At the end of the campaign, the Cabinet Secretary announced a package of improvements including the scrapping of IPTR, replacing it with a Peer Approved Clinical System (PACS) which has the principle of our policy solution, Triple Lock, at its centre. We had clear acknowledgement that the Government listened to patients and adopted our solution. Relation to objectives and cost-effectiveness The role of patient advocates was central to our campaign. With minimal budget, we focused on identifying and then targeting key political influencers and media editors with strong patient stories which bought the issues to life. By facilitating meetings between patients and their MSPs we ensured key parliamentary champions who were able to cite patients in parliamentary debates. We forced the First Minister to defend the provision of cancer drugs in the Chamber - with a patient who felt let down sitting directly above him in the public gallery. We forced the key decision maker - the Cabinet Secretary for Health – into a live broadcast debate that pitted him against our most powerful influencers; the actual patients who would be affected by his decisions. As a pragmatic politician, the Cabinet Secretary stated in our meeting that the only way to make the headlines go away was if he listened to the patients. Creativity / originality Patients were front and central to our lobbying. Strong, emotive patient stories caught the imagination of the national media. We worked closely with a number of patients (and their families) to facilitate targeted media interviews securing the support of key national editors which generated timely front page headlines and comment, bringing audiences right to the heart of the problem. We also managed to present a totally novel policy solution, which government explicitly told us ‘led to the conclusion that the patient’s lead clinician who will know them best should be central to the decision making process’ (Scottish Government Health and Social Care Directorate). People Beating Bowel Cancer: Stuart Barber, Campaigns Director; Elspeth McAusland, Head of Communications; Mark Flannagan, Chief Executive. Indigo: Peter Smyth, public affairs consultancy. Patient Advocates: Janice * and Alan Glasswell. Ian * and Jacqui Morrison. Maureen and Ian Fleming. June * and Graeme Rankin. Tina McGeever. Isabelle and Matt McManus . * These patients have subsequently passed away.