Charities must have dialogue with policymakers

There will doubtless be arguments over who ought to be cast as the leads, and which of them has star billing, but there will also be people with just one line to contribute, uncredited walk-on roles and a host of extras required. As far as charities are concerned The Office of the Scottish Charities Regulator (OSCR) has released draft guidance regarding what role, if any, a charity should have in the debate leading up to the referendum.

Broadly, a charity can campaign on an issue if doing so advances its charitable purposes which are laid out in its governing document. Even then it cannot conduct a campaign if prohibited from doing so by that same document. Regardless, charities cannot endorse one political party or an individual politician.

A charity like Epilepsy Scotland could not campaign for yes or no to Scottish independence. It also would not seek to do so, for common sense reasons relating to how a charity like ours works and the need to engage with a vast range of people from different backgrounds.

The Scottish Parliament building in Holyrood. Picture: complimentary

Epilepsy Scotland seeks to represent the views of individuals affected by epilepsy. There are tens of thousands of people in Scotland who are diagnosed with the condition. Epilepsy certainly can mean having seizures, but some people can be seizure-free with appropriate treatment. Epilepsy is more prevalent in certain groups of people but it can affect anyone regardless of factors like age, gender, job or political orientation.

As a charity working in the health field, naturally there is a desire to work with health professionals of all kinds and also to engage with pharmaceutical companies. We are involved in social care, so working with professionals in social work is also necessary. For charities seeking to influence public policy, contact with policy-makers and politicians is also a necessity.

Our work is financed through various routes. People affected by epilepsy give generously of their time and money. Trusts and public bodies will provide funds if we can evidence that the work we do will be of benefit. Corporate bodies will also make donations and support our activities. We seek to involve as wide a variety of people as possible in our fundraising activities.

We provide services to people with epilepsy some of which are paid for by public funds or donations, some by the individuals themselves, and provide training for organisations and individuals, similarly funded. All of the people using these services are our customers.

We are answerable for our activities to our members, to the Care Commission and to OSCR amongst others. We must comply with national fundraising standards.

We, like many charities, make use of social media to communicate with and to gain the views of anybody with a personal or professional experience (sometimes both) of epilepsy. With such a varied group of people, given the heterogeneous ways that the condition affects their life, it is a challenge as an organisation to be demonstrably representative of all the potential views on one topic by whatever means we may try to achieve it.

For the sake of people with epilepsy, our supporters, customers, donors, volunteers, professionals in health and in social care, corporate donors, trust funders, and more, Epilepsy Scotland must form constructive and productive relationships.

We work with the public sector, private sector and other voluntary sector organisations and must amend our way of interacting dependent on the different cultures that prevail in these different sectors.

Throughout we must, by legal constitution and by organisational preference, operate as a not-for-profit but balanced by also being not-for-loss.

Many charities face exactly the same challenges as we do, regardless of the focus of their work. The voluntary sector in general approaches these challenges with a view to what it can achieve, what it can do, rather than what it cannot.

Epilepsy Scotland cannot be seen onscreen in The Road to the Referendum and would not want to be, because it’s not our kind of film.

Ours is more of a Fred Astaire and Ginger Rogers dance movie with a cast of thousands and if it is what is required to achieve the happiest ending possible we surely will, as Ginger to Fred, dance the routines backwards and in high heels.

• Lesslie Young is the chief executive of Epilepsy Scotland www.epilepsyscotland.org.uk

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