Importance of paying expenses……

It never ceases to amaze me how some organisers find it acceptable not to pay all our expenses………

Some are totally wonderful. Not only do they support us in every way possible, by asking what help we need, but they detail what will be paid for and ask if anything else is needed. Some offer to collect and drop back home if local. Some even pay expenses on the day!

However, there are those with little understanding of what attending an event can entail. That makes me feel like a tick box and used…….😔

Many people with dementia and supporters are more than happy to speak at events, to staff, to organisations, etc, etc……but if our expenses are not in the budget please don’t ask us.

Many people with dementia and supporters are not in work and even if they are, surely it’s only courteous and expected that if you ask someone to take the trouble to attend and speak, then you ensure they’re not out of pocket?

Travel tickets are one expense but so also are taxis if needed and we still have to eat if it’s an overnight or if it takes a whole day with travelling. Many offer to meet us at the station, or suggest we get a taxi or provide a good walking map.

It’s embarrasing enough having to ask someone to book train tickets, so please don’t embarrass me further by making me feel bad about asking for my taxi fare to be refunded or anything else I reasonably claim. And after the event please don’t tell me taxi fares aren’t’ covered as how else am I suppose to get from my house to the station when public transport doesn’t exist?

I put lots of planning and preparation into any event I’m asked to speak at so please return the favour.

I rely on the integrity of others to repay any expenses claimed and havn’t a clue whether they are or not they are as once I’ve submitted I simply forget so if you’ve been my contact person it would be really useful to track whether I have actually been repaid, and some do this as a matter of course, which is wonderful.

I’m more than happy to attend and speak, but please don’t let me be out of pocket.

There’s a guide on the DEEP web site for including people with dementia in the second list “Involving people with dementia at conferences and events”…..the last paragraph is equally as important as the first and everything in between.

Sorry couldn’t make it appear as a link to the guide itself……end of rant….


About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

2 thoughts on “Importance of paying expenses……

  1. Excellent blog / rant Wendy. You’re absolutely right. I never cease to be amazed how some professionals want involvement from carers, and people with dementia, to speak at conferences or workshop or be involved with a strategic group and they don’t consider what is needed to support that involvement and the cost to the individuals. If we are to truly recognise the value of experts by experience then they should be recompensed appropriately for their efforts and that is more than expenses as a minimum.
    As you say we don’t just turn up but put a lot of preparation in to that commitment which needs to be recognised.
    Well done for saying how it is!


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