Do you know how much more having a diagnosis of MS has cost you financially?
I don’t, but at a guess I would say that your car insurance and travel insurance have gone up and that it’s difficult and expensive to get life insurance and a mortgage. Not to mention the hours spent on the telephone and with the forms, and getting medical reports to submit with the forms if you need them.
Then there are all the other day-to-day costs of MS, which can certainly mount up. These are things like prescription charges, hospital and GP surgery car parking charges, costs of specialised equipment if you need it. Specialised equipment need not be exotic: I’m thinking of things like smartphone apps to help keep track of your MS, or fans to help you keep cool. Would you need these if you didn’t have MS? And then there are the financial deals you miss out on – for instance, does the need to plan around your MS mean that you can’t take advantage of cheap deals on things like travel, theatre tickets or restaurants, because they are only available at short notice or at strange hours?
We know that all of these things have an impact on your financial situation. Unfortunately, as a small charity, we don’t have the resources to campaign about the financial impact of MS but SCOPE, the disability charity, does. In July their launched their Extra Costs commission which is running for a year and looking at the extra financial costs that people with a long term condition or disability face.
SCOPE are specifically requesting individual accounts of your experiences of extra costs that are incurred because of your MS, and of how these costs affect you and your financial situation. Have these costs led to financial hardship? Does it make it harder to make ends meet? Please don’t let the fact that SCOPE label this as ‘disability’ put you off – this is an opportunity for people with MS to explain just how financially expensive having MS is, along with being emotionally, physically and mentally hard.
I cannot stress how important it is that all aspects of the costs involved in MS are exposed within this report, and that can only happen if you submit your personal experiences. SCOPE needs to hear about the extra costs you face, but also about their effect on your whole financial situation. There is an online form here which is really simple to use and which allows you to say as much or as little as you like, in your own words so that you can focus on what matters most to you.
Alice, Policy Officer