Your article on valuing PWD, published in the JDC, was passed to me, and I thought, "Thank God, it's time, this issue was raised in a serious publication".
Having lived with dementia for twenty years, I have been heavily involved in promoting the continuing worth of PWD.
For nine years the question of payment, rears its head as regular as clockwork. But I have never seen the vexed question being resolved, or taken on board by the Government, to issue guidelines. This happens with people with other disabilities.
They are scared to air their valuable experience, to help others, for fear of being regarded, as fully employable. Some have had to appear in front of Boards, and some say they have been crucified. This can be the reason, why universities and the like, struggle for people to come and talk to their students, causing a severe gap in their tuition.
There was a large meeting once to discuss this, and the Government representative fudged the issue, and muddied the waters even more. Has anyone seen anything in writing?
What effects on benefits happen, when someone is given some remuneration, in cash or kind (such as shopping vouchers)?
Financial
Will they be required to pay it over to the Government? Will they lose entitlement to benefits, such as dental treatment, free medicines, eye glasses, hospital travel expenses and housing benefits etc?
Social
PWD can usually only "work" for short periods before exhaustion kicks in. They may be unable to sustain their best efforts for more than few hours, and it is impossible to do this, day after day. Employers want someone there fully fit, for each day, each week. Will they be treated as fit for full time work, and made to register for full or part time employment? If this happened, what would be the effect on their well-being and health? I find that, with the best will in the world, I have limited capacity now. I can only go so far, then my brain shuts down.
Before I reached pension age, I was rarely offered and never accepted any payment, for fear of the consequences.
I suggested it went to the group Now I can accept the odd payment, and pay tax on it. But I had to write to the DWP, and get exemption from paying National Insurance. I get P45's. and P60's. My son is at university and these "payments" adds to my income, and affect his student's grant entitlement.
The ironic thing is that I now pay tax, and am I employed or self- employed? In some ways I am employed, as I pay tax via the PAYE system, but I do not have a contract of employment. When I give a talk, I may hand out say eighty pages of home computer printed notes for the audience, but no one compensates me for this. Could I claim the expenses from my "fee" before it is taxed? I think not, and it raises all sorts of ramifications for different bodies.
Several places have given me an honorarium, no tax, no fuss. Why can't the Government allow these, up to so much per year, without affecting anything.
But the fact is, that the offer of payment is rarely made, and as I rightly say, it can cost you to take part in consultation. People phone from an office, and ask me to call back (at my expense). I send items by post, and I have to cover the postage, paper and envelope. They are never around, when I have to buy a new ink cartridge (they just get one from the stationery cupboard). The Post Office is not at the front door, so I have to be driven to it, using petrol, and pay to park.
While my computer/printer is shared by the family, I do not use it except for my voluntary work.
I have never been offered a penny in allowances. This is not me being mean, but I have not brought a wage home in twenty- six years, and the value of my income goes down and the costs mount up.
Expenses
Some think they are doing you a favour by repaying the expenses you incurred. Ye Gods! Do they not claim expenses in connection with their work? Why should we be treated differently? Some of the groups I now deal with, (willingly) pay cash expenses on the day. (money that I took from my pocket that morning) A few offer a travel warrant. Maybe that's why I stay with them. One group I was at, for attending, never paid me a penny yet charged me income tax on my train and taxi fares. That is money out of my own pocket. Despite my constant protests, they kept on taxing me, as they insisted my expenses, to help give them my experience free out of my pocket, went through a payroll. Naturally, I am no longer with them.
Some places keep me waiting weeks, for a refund of my own money. Eight weeks for the last lot. They put obstacles in the way, such as someone is on holiday, they deal only once a month with expenses, and you missed the deadline.
They promise to send you a claim form, and take weeks to send it, after reminders. Then they lose it, with the receipts.
I am currently owed GBP 75 for expenses, and goodness knows when I will see it. It has been more than that in the past, something like GBP 350, where air transport is involved, as I need a carer to travel with me.
If I go with my Group, they sort out the expenses, and I have no worries. I can concentrate on the job.
Time
Some people seem to think I am there for their convenience, and it is their divine right to have me there.
I have other things to do during the day, before dementia has the upper hand. I have other medical, dental and hospital appointments. I can use my time profitably at home or out in the community. I have siblings with poor health and need to stay in touch.
My time is valuable. I can go to meetings some distance away and while the meeting may only be a few hours, I can clock up 10 - 12 hours travelling.
I do a presentation of an hour, and need to rehearse it about three times at home the night before, so I am able to do it well. I take a pride in what I do, and have not lowered my standards. To be able to participate in meetings, I have to spend some hours, reading and re-reading lengthy reports. I have no doubt others burn the midnight oil until dawn, considering the groups we can be on, and no one seem to realize or acknowledge this. With some Groups, we feel we are there for their use.
But I must say that at times I feel very valued, and even loved, and it no surprise, that they have first call on my services.
When I suggest we have meetings on a Saturday, and everyone gives freely of their time, no one takes me up. But I am expected to give up my free time, and be unable to make medical/dental appointments. I've waited weeks at times, anxious for an appointment, but gave way to requests for my appearance.
They have the rest of their lives to live and work, my time is dementia limited. I have to use it wisely.
Getting there, and getting home safely
Some people think I parachute down from my house to the meeting place. I don't drive anymore, so have to use public transport where possible. Some do not even ask, how I am to get there. If I am to give of my best, I want to arrive refreshed. If I have a long walk from the bus stop, uphill and in the rain, I am soaking wet and exhausted, and simply not fit for the job. And, I like people to make sure I get home safely, as my road sense is dodgy.
If I have to travel a distance, I may get there, but unable to get home until the late hours and be good for nothing the next day. Time the meetings, so someone can come down the night before, have an early meeting, and get home at a reasonable hour.
My wife did a talk to nurses etc (the organization was being paid to run it), and had to take a day's leave off work. She did not look for a payment, just expenses, but they offered a fee. They gave her GBP 50 which included GBP 28 travel expenses.
Not exactly generous GBP 22 for a whole day's travel and work. And worse, they did not phone, email or write to say thanks. So long as they get paid their wages at the month's end, they are happy to leave us dangling.
So why do I carry on doing it?
I feel I make a difference, I’ve paved the way for others to emulate me, and I do meet some lovely dedicated people.
