By MS-UK’s CEO Amy Woolf
The story first caught my eye Monday morning when the BBC ran a piece on their breakfast show. I was getting my Son ready for school and heard the words ‘multiple sclerosis’ so I turned up the volume and with one ear listened in. The piece was about the UK adopting a proposed new measure of poverty and the BBC had chosen a woman living with multiple sclerosis to help illustrate the change.
They explained that unlike the current measure bought in under labour (Relative poverty), a new measure would take into account a number of ‘inescapable costs’ that related to particular people within the UK. One of these was disability. Without getting into the pros and cons of each or indeed any such measurement I focussed on what this was telling me about the people we are here to support.
It’s long been understood that the costs associated with daily living with a disability are, on average, much higher than for those without. So as I heard this, my first reaction was – ‘too right’ and ‘about time’.
The following day, I caught the same story, but this time in the Independent and seeing the full story, in black and white and with full concentration I began to reflect more deeply. And it dawned on me that my team and I have a huge challenge ahead of us if we are to support people affected by MS to live happier, healthier lives.
At MS-UK we are currently writing our next three year strategy – everyone is very excited about what we could be doing next, but underneath all that excitement is the ever present question of how to fund the services that people need from us – now and in the future. The pressure is always on for charities to be ‘sustainable’.
And I realise, with 11 million people in the UK recognised as having a disability, and 7 million of these potentially living in poverty, I’m not convinced it is even possible. That’s 64% of the disabled community living in poverty – and that’s not even taking in to account those that do not ‘live in poverty’ but at the same time do not have a disposable income to pay for the support they need - so many people cannot afford to pay for it. So who will? With struggling health and social care and reductions in government funding – (locally and nationally) – where does the money come from?
We’ve been fortunate so far at MS-UK that people believe in what we do and how we do it. These people support us year in year out through donations, fundraising events and a huge number of other activities – I cannot thank these people enough and I can only hope that the generosity of the UK public continues, so we can be here for people affected by multiple sclerosis for so long as they need us. After all, it seems we need supporters now more than ever.