How a big campaigning charity improved the lives of deaf people

Big charities are getting a bad press. It was a few big charities that were found to have adopted unacceptable fundraising practices and misused the personal data of supporters. Some of the principal betes noires of right-leaning opponents of campaigning by charities, who see uncontentious service delivery as the “proper” role of the sector, are also big charities. The Chair of the Charity Commission hardly ever praises the sector’s campaigning role and has recently singled out “kitchen table charities” as “wonderful”, as if to deflect the focus away from the more troublesome big guys. Within the charity sector itself there is a popular narrative that the big guys attract a lot of money and attention to themselves, sometimes to the detriment of smaller and more local organisations where you will find the real heart and soul of charity.

Well, gather round children and listen to this brief summary of what happened to the lives of many deaf people in  2000 to 2005. It is not a fairy story. It is based on a case study in the Journal of Social Enterprise, Vol 5, no 2, 2009 by Alex Murdock, Professor of Not for Profit Management at London South Bank University, and Brian Lamb, then Director of Communications at the Royal National Institute for the Deaf (RNID – since rebranded as Action on Hearing Loss).

Some 11 million people in the UK are directly affected by hearing loss. This brings with it stigma, loss of social networks, isolation, and poor employment prospects. In the late 1990s the NHS’s auditory services were a Cinderella, typically housed in low quality buildings resembling old fashioned Sexually Transmitted Diseases clinics. The ambience and quality of private sector provision was much better, as well as expensive, catering for about 25 per cent of users but leaving the 75 per cent behind. Analogue hearing aids were inexpensive but s0 ineffective that they often lay unused in drawers. They magnified all sound, like a Victorian ear trumpet, rather than responding flexibly to the individual’s particular need. The new digital hearing aids provided this flexibility, vastly superior sound quality and greater comfort, but they were also expensive: about £2,500 each on the high street. Since the NHS was the biggest purchaser of hearing aids in the world, the RNID were convinced that its purchasing power could drive down the price of digital hearing aids and make them accessible to the many.

Against this background, the RNID could have opted to try to expand its own services funded from charitable sources, but this would have had relatively little effect on the mass of people with hearing loss. The Trustees assessed that they could pursue their charitable objects far more effectively by influencing public provision, ie by political activity as defined by the Charity Commission. They used what Brian Lamb called an “insider/outsider combination” of influencing methods, as many other charities do. The insider bit was getting close to Ministers, civil servants, NHS leaders, Select Committees, parliamentarians and other influential allies on the inside track, and put well-documented arguments about efficiency, practicability, economics and the political bang for a relatively small investment by NHS standards. They also offered their expertise, user experience and technical know-how to help the NHS get things right for deaf people. Yet they also campaigned hard, using the independence and power given by their 300,000 supporters to raise public awareness and deluge MPs and Ministers with postcards, getting Questions raised in Parliament and points made in debates and in the media.

This campaigning activity was crucial in getting the first pilot programme underway in 2000: over £10 million from the Government to transform 20 auditory service sites, with the RNID managing the change in partnership with the NHS, independently evaluated. It was a big success, with the unit costs of digital hearing aids driven down from £2,500 to £165 and 20,000 patients fitted with them and reporting a big rise in customer satisfaction with the modernised services. But at this point, momentum stalled when a new Minister was appointed. The private sector tried to take advantage of this, saying in their advertisements that: “It will be years, if ever, before digital products are  available to all on the NHS” (Evening Standard, 3 September 2001). So the public campaigning swung into action again. In addition to a general hubbub, strategic bodies including the Audit Commission and NICE were converted to the cause. Ministers responded by deciding to roll out a national programme of modernisation costing £125 million in all, jointly managed with the RNID, in further waves. By 2005 the whole country had been covered, and 1.5 million people were fitted with digital hearing aids. The price had been driven down further (to as little as £55 by 2008), forcing the private sector to reduce their prices also. Over 30,000 more people were being fitted with digital aids each month. Patient satisfaction with auditory services continued to rise.

What was the RNID bringing to bear in achieving this result? Its concentrated passion for the rights of people with hearing loss. Its deep knowledge of user experience. Its independence, underpinned by its 300,000 supporters and diversified funding base. Its professional staff and expert allies, working long hours on the research, the communications, the personal lobbying, the fundraising, the management expertise and credibility to win over so many sceptical organisations and politicians and help manage the modernisation process; its long term staying power (still working for the cause when individual Ministers are long forgotten); its status as a great national charity.

A few years. ago, this case study was seen principally as an example of successful partnership between Government and the Third Sector in delvering change. And so it was. Contemporary Ministers (Paul Boateng and Fiona McTaggart) also drew the lesson that “It is possible to combine a campaigning role – that of achieving better quality of life for deaf people and hard of hearing people – with a service delivery role”, and that Government should embrace both. That is also true. But in today’s diminished discourse, even more basic lessons stand out. Trustees should consider whether political activity may be the best way of pursuing their charitable objectives, as the RNID’s Trustees did. Service delivery funded by charitable donations alone is not the only “proper” way of advancing charitable causes. Big charities offer different skills from kitchen table charities and may have a scale of impact for good that is impossible for smaller local bodies. They may be just as passionate and determined, and be just as “wonderful”, in a different way. And influencing, including campaigning and lobbying, can be at the very core of what a great charity is there to do for its users, and how it serves the wider society. That is how digital hearing aids and much better auditory services became available to millions of people with hearing loss.


One thought on “How a big campaigning charity improved the lives of deaf people

  1. Pingback: A long post on a little campaign with a big roar – Voluntary Action and Other Animals

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