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Breathing Matters; the third sector at its best

October 29, 2013

Over the past couple of weeks I’ve been contributing to a short publication designed to help City people interested in becoming charity trustees. My piece is a contextual chapter where in 2,500 words I’ve been trying to encapsulate the boundaries of the sector, its history, what it does and the future prospects…whew! In writing this I’ve been reminded of the very old Monty Python sketch on ‘Summarising Proust in 15 seconds’ – still available on YouTube and still (moderately) amusing.

It’s been interesting trying to characterise what is different about the sector especially in the prevailing gloom. Stephen Bubb, CEO of the umbrella organisation Acevo, has spoken of “a sinister agenda” and the most hostile political environment for charities for a decade. Add to this the cuts: NCVO has calculated that in the five year period from 2010/11 to 2015/16 the voluntary sector may lose around £1.2 billion in funding a year, a fall of 9.4% from public sector constraints. And this is happening when economic conditions have resulted in an increasing demand for services – the vulnerable, homeless people and those seeking advice for debt problems.

Some academic commentators too are gloomy. I’ve recently read a book that looks beyond the increasingly blurred sectoral boundaries to examine so-called ‘hybrid’ organisations, those that possess significant characteristics of more than one sector. Examples include partially nationalized banks, social enterprises and Fannie Mae and Freddie Mac. As the third sector grows and becomes increasingly engaged in income generating activities then their characteristics may become increasingly hybrid in nature. This is interesting, but I don’t buy its narrow central premise that the classic charity is a membership led body with no paid workers. First of all, charities have always been much more diverse than this, and delivering paid for public services is not new. And, if you start from this narrow perspective then all management and professionalism seems suspect.

What really puzzles me is why some of the sector’s prominente don’t seem to understand that engagement with the political elite is never an equal relationship. Politicians wax and wane in their enthusiasms and as I’ve commented on various occasions, their policy agendas are values loaded. The sector too has its fashions – social impact is up there right together with social investment. The caravan will at some point undoubtedly move on again to the next best thing.

But my faith was restored the other week when my partner Adrienne and I attended a celebration of ‘Breathing Matters’, the charitable fund of the Centre for Respiratory Research at UCL. It was set up to raise awareness of and help find a cure for a range of interstitial lung diseases and other respiratory infections. Some of these comparatively unknown diseases have no cure, yet are under-funded in research terms. My wonderful lung consultant at UCH, Dr Jo Porter, is Clinical Director.

One of these diseases is Idiopathic Pulmonary Fibrosis (“IPF) responsible for the deaths of around 5,000 people annually, claiming more lives than leukaemia or ovarian cancer with over half of those who develop it dying within three years of their diagnosis. Yet its causes are still little known, and apart from a lung transplant, there is no real cure.

The event in question was held to celebrate Breathing Matters’ third birthday and its impressive fundraising: £150,000 raised in the first three years, from events, such as cycle rides, tractor races, donations, Christmas cards and sponsorship.

Breathing Matters exemplifies the charity sector operating at its best. It identifies and channels a genuine unmet need – research for a disease that is increasing in frequency (or possibly frequency of diagnosis) with the goodwill of volunteers – fundraising often by sufferers themselves, their families and friends. This has enabled early stage research, and the appointment of a Research Fellow (the Lawrence Matz Clinical Research Fellowship), research that has leveraged £1.3 million in further institutional funding.

Attending events like these highlights how the real values of the sector remain despite the top level noise and flummery. The sector is far more distinctive and resilient than some of the doom mongers accept and will continue to address real need whatever the economic and political climate.

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