A recent report from the National Council for Voluntary Organisations reported a huge drop in confidence amongst charities due to the impact of the recession. In response, charities are having to cut costs and in some cases merge with similar organisations. But for the small voluntary groups that try to provide a national service the downturn is causing particular concern says Liz Willetts.
‘Charities hit by economic downturn’ isn`t news and is hardly a surprise. How could it be otherwise, when the first things to go are corporate giving and training? Foundations who are generous with the proceeds from their investments, have less to be generous with, and the same applies to individuals whose generous impulses are tempered by the competing demands of rising costs and, in real terms, shrinking incomes.
Everyone is feeling the pinch, but some charities are being hit particularly hard. The organisation I work for, the Jennifer Trust for Spinal Muscular Atrophy, is a case in point. It is a national charity, providing very specialist support to individuals and families who need it throughout the UK, but does this make it `big`? Not in relation to the organisations that support people with heart disease or cancer. Although charities like ours are small in comparison, we are not `small and local`. Most communities hold their local hospice in high esteem and affection – a worthy cause to support – probably because most people these days have been touched in some way by the need for palliative care services.
Most people will not have heard of spinal muscular atrophy (SMA), although it affects approximately 1 in 6,500 babies born. This means about 100 new cases are diagnosed each year with the inherited condition. For babies with SMA Type 1, the most severe form, the outlook is bleak. Most die before they reach their first birthday, some even within weeks of diagnosis.
For families whose children have SMA Type II, after the shock of the initial diagnosis, adjustments might be made a little more slowly. These children often survive into teens and young adulthood, but again often have to face frequent crises with sudden respiratory problems, or the long drawn out problems for example of scoliosis and difficult decisions to be made about spinal surgery.
No local organisation could get to grips fully with the complexities of this condition because too few cases arise in any one area for experience to be accumulated. Of course many generic services around disability or palliative care have an important part to play, but having the specialist knowledge to recognise how best they can be shaped to fit the specific needs of SMA takes something extra.
The Jennifer Trust (and other specialist charities for rare conditions) need to be big enough to see as many of the total number of cases and different circumstances as possible. They also need to be small enough to give a personal tailor-made service in the unique combination of problems families with rare conditions experience.
But in funding terms, charities like ours are neither big enough nor small enough to fit neatly into criteria. Primary care trusts or social services probably haven’t heard of SMA or The Jennifer Trust unless one of the two new cases a week falls into their patch. When this happens, we are seen as a national charity and therefore big enough to provide expertise and resources to help out the local professionals. In the eyes of central government, we are probably seen as too small to make a significant difference, and too small for them to have any real responsibility to support what we do.
Our donations are not just noticeably less, but have dwindled to almost nothing. In the past two years we have had an income, and expenditure, of around £800,000 per annum. That’s the equivalent of just over £2,000 per day and it enabled us to provide an excellent tailormade support service to affected individuals and families, provide training and information to professionals as well as affected families, a helpline, and a youth service. It also ensured that we continue to have a high level of user participation because we also run a Volunteer Network made up of people who have themselves been affected by SMA, who offer to share their experience with people or families more recently diagnosed. We also invest in research and help to support three major research projects.
Lottery funding and funding from other trusts arrives in instalments throughout the year, but is not enough without extra donations. These are often from families who have used Jennifer Trust services (and their friends, workmates, and fundraising events they hold for us). We have been trying to broaden the range of corporations and individuals we approach, as well as combing through details of hundreds of trusts and foundations to see if we meet their criteria, but competition is greater than ever and the pot is getting smaller.
The big gap is in government funding. The Department of Health and Department for Children, Schools and Families recently announced its investment of £30 million to meet palliative care needs of children and young people, (Child Health Strategy, Feb 2009, pp 76-77) but it is allocated to primary care trusts to commission services locally and regionally. This will not work for us. No-one can predict where the next cases of SMA will arise. A Type 1 baby could be diagnosed in May and die in September, and would make no impact on the commissioning cycle, but we would have provided several thousands of pounds worth of services and support. The only logical way to support small specialist providers is with a service level agreement commissioned by central government, for services to be provided anywhere in the UK according to need not geography.
I cannot bear to speculate about what the recession will mean for services and staff. The services are the staff and the staff are the services. We have nothing spare, and absolutely anything that goes will hurt service users. Our highly motivated, hard working team, between them probably hold more specialist information about the day-to-day care and support of people with SMA than anyone else in the UK. They will eventually have to look to their own survival too and will leave, or hang on until the ship sinks. Either way, a service that provides gold standard care, economically, and with the optimum number of staff and is not wasteful of resources, may be lost.
Liz Willetts, director of support services
The Jennifer Trust for Spinal Muscular Atrophy