1.1. The Treat Me Right campaign calls for all people with MS to get the right treatment at the right time.

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1 19 September 2014 Open BD Treat Me Right campaign Ian Fannon Head of Communications and Campaigns John Palmer Executive Director of Marketing and Communications Nick Rijke Executive Director of Policy & Research The Board is asked to note the information in this paper, which provides a status update on the Treat Me Right campaign, as requested at the Board meeting on 22 May. 1. Strategic context 1.1. The Treat Me Right campaign calls for all people with MS to get the right treatment at the right time The campaign is highly relevant to the new number one organisational goal: People with MS will have access to effective treatments for their condition, including treatments which can slow, stop or reverse the accumulation of disability. 1

2 1.3. It also partially supports other goals, including goal 2 (responsive care and support), goal 4 (quality information) and goal 5 (strong community, independent lives) Treat Me Right will play a significant role in contributing to achieving the following draft 5-year strategic objective within the organisational strategy: We will have increased the proportion of people with MS who have timely access to the medicines and treatments which are right for them. This will include improved availability of treatments, access to informed clinicians, and provision of information and support to help people with MS make the right decision for them. 2. Broader campaigning context 2.1. Treat Me Right is currently the only recognised branded campaign we are running on an ongoing basis, but we plan to develop more such campaigns in future, broaden the commonly understood definition of what we mean by campaigns, and introduce a new approach to mobilisation and engagement. Following the creation of a new campaigns function within the Marketing & Communications directorate (for which dedicated campaigns staff are to be recruited) we intend to develop an overarching campaigns strategy This strategy will articulate: how we define campaigning how we will decide what to campaign on (in line with our organisational strategy and brand positioning) and the scale and scope of our campaigns how we will mobilise and engage the MS community and others to support our campaigns new campaigning methods we plan to use, including how to maximise our use of social media and respond to what matters to the MS community what campaigning success looks like Within this strategy, we will stress that campaigning is not just about influencing public policy change, but also about influencing other kinds of change where there is evidence that change would be of benefit to people affected by MS, such as change to behaviour of individuals or organisations (including the private sector), or change to professional practice. It will include tightly focused campaigns, such as a campaign to encourage particular demographic audiences to give legacies, as well as bigger campaigns with broader aims, such as changing public attitudes to MS, or indeed seeking to change public policy on welfare reform All campaigns will be backed by evidence and have clear, achievable goals. 2

3 We will also seek to maximise the fundraising potential of each campaign we run. It is likely that eventually we will seek to have several campaigns ongoing at any one time, with each dialled up and down throughout the year and coordinated centrally to ensure they do not compete with each other Our ambition is that a coherent campaigns strategy will lead to well integrated campaigns that enable us to engage and mobilise the support of our target audiences better driving the changes we want to see, building our brand and helping to increase income. We anticipate being able to share this strategy by the end of Q The campaigns strategy is likely to affect the future shape of the Treat Me Right campaign, but for now we are progressing the campaign based on our existing plans. 3. Evidence behind the Treat Me Right campaign 3.1. The Treat Me Right campaign builds on last year s Stop the MS Lottery campaign, based around the biggest ever survey of its kind of people with MS in the UK. The My MS, My Needs survey interviewed 10,500 people with MS in the autumn of 2012 and revealed unacceptable inequality in access to MS treatments and services across the UK The research showed particularly wide variation (and overall low levels) in access to drug treatments, but also poor access to emotional and psychological support and support to stay physically active. Given the rapidly changing landscape in drugs for MS, Treat Me Right has so far focused mainly on drug treatments, but its scope is intended to broaden over time to encompass access issues for all forms of treatment. See appendix 1 for a short confidential summary of the evidence and what it tells us. 4. Treat Me Right campaign strategy 4.1. While there is currently no end date for the campaign, many of the changes we re seeking will only be measurable over the long-term. As such, we are in the process of setting five-year objectives which serve the organisational fiveyear objective highlighted earlier. These are detailed below in draft form and remain under discussion by the Treat Me Right project group. Our intention is to set targets for all these objectives, and for objectives 2-5 we will have linked targets to reduce variation, as well as to increase overall access. 1. All treatments licensed for use in MS will be available for use on the NHS. 2. The proportion of people with RRMS taking disease modifying treatments 3

4 (DMTs) will have increased (40% in Q4 2012). 3. The proportion of people with MS taking symptom management treatments will increase (just 2% in Q were taking Sativex or Fampyra). 4. The proportion of people with MS who have their need for emotional support met will have increased (51% in Q4 2012). 5. The proportion of people with MS who have their need for support to keep physically active met will have increased (47% in Q4 2012). 6. The proportion of people with RRMS who can name five or more DMTs will have increased (58% in Q4 2013). 7. The proportion of people with MS who have had their need met for information about drugs available to support the treatment of their MS will have increased (56% in Q4 2012). 8. We will have enhanced the MS Society s reputation for being a leading voice on issues affecting access to treatments (benchmarks to be established) These objectives indicate the breadth in scope of the Treat Me Right campaign and that it can not simply be viewed as a bolt-on PR initiative. It will be necessary for the campaign to be closely linked to the wider detailed cross-organisational strategy which is being developed to tackle the issues around access to treatments in order to achieve the systematic change we are seeking The full Treat Me Right campaign strategy, which reflects the focus of the campaign to date, is available on request. We are reviewing this strategy as part of business planning for 2015 and in light of the new organisational strategy to ensure planned activities remain appropriate and build on successes and learnings to date. 5. Solutions and policy calls 5.1. The evidence points to three key areas in which work is needed: Effective treatments need to be made available on the NHS by regulators/government agencies MS professionals need to keep abreast of and understand the changing treatment options and their efficacy, and be proactive in 4

5 engaging their patients in conversations about their options People with MS need to be properly supported to understand their treatment options and make decisions that are right for them In relation to point 5.1.1, there are different institutions (and different challenges) in each nation within the UK. In recent years we have been highly effective in engaging these agencies to encourage them to approve access to DMTs on the NHS. This remains a key area of our work, particularly as 2015 will see NICE begin a multi-technology appraisal which could see them overhaul their guidance to the NHS on DMTs. It has so far been more challenging persuading these agencies to recognise the value of SMTs (symptom management treatments) - this is particularly important at present in light of the current draft NICE clinical guideline which proposes blocking access to Sativex and Fampyra, on which we have vocally raised our concerns over the summer While point is crucial, a big challenge for the Treat Me Right campaign lies in the interplay between points and 5.1.3, which is why we have called for people with MS to receive regular reviews with their MS professionals. This is important not only in relation to drug treatments but also in relation to other treatments and therapies While our key task is to influence the NHS to respond to this call, the solution cannot lie purely with the NHS: there is work the MS Society and others can do to educate and arm people with MS with information, knowledge and tools to help them push for the right treatment for them. But taking this approach alone would be likely to disproportiately reward the most educated, proactive and savvy patients The Treat Me Right campaign needs to make a persuasive and persistent case to convince local and national decision makers to recognise the strength of our policy call. At the same time we need to create demand among people with MS for access to regular reviews. 6. Activity and outcomes to date 6.1. At launch the campaign received strong media coverage, including a lead article and letter in the Daily Telegraph, and there have been over 100 items of media coverage to date. Treat Me Right has already secured strong support from people affected by MS (over 6,000 have signed up online and this is still rising) and has achieved wider engagement through their social networks (our TMR Facebook updates throughout the spring and summer have each reached 25k to 50k people). 5

6 6.2. The campaign has opened the door to numerous conversations with clinicians, politicians, civil servants and other key decision makers and stakeholders, on a UK, national and regional level. Nationally, we ve secured public commitments from Scottish and NI Health Ministers to support the campaign. We ve also successfully persuaded NICE and the Scottish Medicines Consortium to approve access to three new DMTs Our influencing work under the Treat Me Right banner has also embraced our campaigning around the draft NICE clinical guideline, calling for NICE to revise their recommendation to block access to Sativex and Fampyra. In August we stepped up this campaigning in light of both the approval of Sativex in Wales and Home Office Minister Norman Baker s call to review government policy on cannabis for medicinal use. We achieved widespread media coverage, including the Sunday Telegraph, Daily Telegraph, The Times, Daily Mail, Guardian, BBC Radio 5, Sky News and LBC, and secured a positive meeting with Norman Baker Regionally, we ve engaged with all MS nurses, neurologists and key decision makers in the commissioning landscape including Clinical Commissioning Groups (CCGs) and Health and Wellbeing Boards on the campaign s goals. Numerous fruitful meetings have been secured, with just one example of success being the Joint Strategic Needs Assessment in the North West being changed to include MS, as result of evidence and recommendations presented within the campaign A more detailed summary of activity that has been completed to date and related outcomes is available on request. 7. Key priorities and risk management 7.1. There are naturally a number of challenges for such an ambitious, wideranging campaign. A full risk register is in place, which is helping to track and mitigate some of the risks associated with the campaign. For the purposes of this paper, five key priorities are worthy of note: Evidence As set out in appendix 1, while we have robust research demonstrating the scale of the problem with access to treatments, there remains some further work to be done to improve the evidence base in some areas. 6

7 Links to wider strategy Paragraph 4.2 identifies the importance of ensuring that Treat Me Right operates successfully as one part of the overall organisational strategy in relation to goal 1. Additionally, as part of the new organisational strategy we ve committed to underpin our work with a clear understanding of what we re trying to achieve and how we ll make a difference. The initial work on this is described in the paper on agenda item 13. Given that Treat Me Right will play a significant role in achieving Goal 1, we ll need to ensure the campaign project group aligns our work to the associated impact measurement framework which is developed Resources We ve achieved a lot so far with limited dedicated resources allocated to the campaign, but we will need to expand the resources available in line with our ambition and opportunity to create change. The campaign is currently project managed by a temporary campaigns manager two days a week, but going forward we plan to recruit a permanent campaigns management team to drive the campaign forward and ensure it is well integrated across the organisation. More budget will also be allocated in 2015, especially to produce engaging content and information tools, plan suitable events and invest in tackling some of the evidence gaps Collaboration and co-production The new organisational strategy stresses the importance of collaboration and co-production. Both will be key to the future success of Treat Me Right. We have collaborated with some key partners so far but we ll need to do more to engage the likes of the Association of British Neurologists (ABN) and UK MS Specialist Nurses Association (UKMSSNA) as well as commissioners, regulators and other decision-makers in the NHS. We need to identify allies and networks of influence and work in partnership with the right individuals and groups to build consensus around solutions. In terms of co-production, the campaign is built on evidence from people with MS but we know we must involve people with MS at the heart of the campaign Maintaining momentum There has been strong internal engagement and commitment to the campaign across the charity so far, helping maintain the campaign s momentum. However, the campaigns function within Marketing & 7

8 Communications is new and needs to be fully established and there are changes to structure and personnel taking place in other teams involved in the campaign. Retaining commitment and focus and engaging greater support from wider internal audiences such as branches - will be key over the coming months. 8. Upcoming activities and plans 8.1. A detailed activity planner for is currently being built, as part of business planning, but appendix 2 provides a short confidential summary of some of the key activities which are upcoming. 8