Blog: shining a spot-light on our ‘behind the scenes’ campaigning

The key to campaigning is using a range of tactics to achieve success. Sometimes the best tactic will be to campaign publically and mobilise supporters and sometimes it may be better to campaign for change ‘behind the scenes’.

This post by our Senior Policy Adviser Daniel Vincent, explores our MND Costs campaigning ‘behind the scenes’. 

Shining a spot-light on our ‘behind the scenes’ campaigning

Since starting at the Association a year ago there have been times where, quite rightly, some of the supporters I’ve had the pleasure of meeting have asked me why we don’t work on a particular issue, and have then been surprised when I tell them that we do. In my experience, at the heart of this misunderstanding is that we often think of campaigning as the more public-facing elements; we think of placards, loudspeakers, petitions, social media campaigns and emails to MPs. Whilst this is very much a part of the campaigning we do, it’s not the only way we campaign and in our experience isn’t always the most appropriate or effective strategy for every situation and the change we want to see.

With this post I aim to shine the spot-light on the equally important but often hidden behind the scenes work we do and how this contributes to our campaigning goals. As a policy person at the Association, this is very much an element of campaigning that I’m involved with and just because it’s behind the scenes, it doesn’t mean it should be a secret. So to shed a bit more light on this, I’m going to talk about three example areas of our behind the scenes influencing and what they often involve.

Stakeholder Groups:

One of the key ways we influence is by being part of stakeholder groups organised by the important players who can bring about change. These are often semi-regular, ‘closed-door’ meetings where we are able to sit at the table with other organisations, raise our concerns and put forward our recommendations. There are too many groups to list here but some are organised by the NHS, the Department of Health, the Department for Work and Pensions and the assessment provider organisations for Personal Independence Payment (PIP) and Employment and Support Allowance (ESA).

To give just one small example of the difference going to these meetings makes, we attended the stakeholder group for one of the PIP assessment providers and they agreed to include a section on MND in the conditions guide available to their disability assessors. Whilst we know this won’t solve the many challenges people living with MND experience when applying for PIP, it does go part-way in addressing one particular issue, that some assessors have a lack of understanding of MND. Thanks to us attending the group, the company now has an up-to-date resource on MND which assessors can use. By continuing to go to the meetings, we’ll be pressuring them to make sure it’s being used and driving improvements.

Working in coalition:

Many issues we work on are relevant to other conditions as well as MND and it’s incredibly useful to come together to influence and be part of a bigger voice campaigning for change. However, not all the coalitions we’re a part of run public-facing campaigns. Quite often we come together to discuss opportunities for policy change, contribute to research and evidence gathering, write to relevant MPs and Ministers and request meetings (which they are far more likely to say yes to) and we respond to key Government consultations and calls for evidence. Within some of these coalitions the Association plays a key role. For example, as a member of the Continuing Healthcare Alliance we provided a number of personal stories for their influential report, which has been seen and referenced to by a number of politicians and key NHS and DH officials. When they read that report, they saw how Continuing Healthcare (CHC) isn’t working for MND.

To give an example of our behind the scenes coalition work, as one of over 80 members of the Care and Support Alliance (CSA) we campaign for a properly funded social care system that works for everyone who needs it. Following the 2017 General Election the Government announced it would consult on the future of the social care system and we have been pushing for more thought to be given to the needs of disabled working-age adults, which has not been seen as a priority. Just this month we attended a parliamentary drop-in organised by the CSA to talk with MPs about the need for the social care system to work for people of all ages. Although we were disappointed to learn that the consultation (now happening in summer 2018) will mainly focus on older people, there has been a commitment to a parallel work stream to look at working age adults too. This commitment was certainly brought about, in part, by the lobbying efforts of the CSA. Whilst still not ideal, it’s an important first step that we can’t take for granted. Following on from the CSA’s activity, the Association is writing to the Minister to raise our specific concerns.

Consultations, evidence and research:

A large part of the role we play in the policy team is to undertake research and produce evidence so that we can respond to calls for evidence and consultations that are on issues relevant to people living with and affected by MND. By responding to these we are directly raising the concerns of our supporters and proposing solutions so that those who have the ability to bring about change can do so. Most recently, we ran a series of focus groups to find out what people living with and affected by MND think of the social care system. This will help when we respond to the social care consultation next year (mentioned above).

This year (2017) we have responded to numerous consultations on issues ranging from guidance on suspected neurological conditions, to how PIP and ESA assessments are working. Whilst our consultation responses are often quite long and technical and not a public-facing activity, they contribute directly to the influencing work we do.

Upcoming work

Most recently we have secured a meeting with the Minister for Disabled People, Health and Work in early February, which we will use as an opportunity to find solutions to ongoing issues regarding Employment and Support Allowance (ESA) reassessments. We are being pro-active in finding solutions before the meeting with the Minister. We are approaching the Department for Work and Pensions (DWP) and Maximus (the company that carries out ESA assessments) to ask to meet with us in advance of the ministerial meeting, in order to discuss the details of the exemption process and explore how it could be improved. We hope that this will result in a well-informed and solution-focused discussion with the Minister.

The above examples aren’t all we do behind the scenes by any means. However, I hope this post goes some way to show that a lot goes on beyond the more visible aspects of our campaigning work to bring about positive change for people living with and affected by MND.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262