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Hello I'm new to the Carer UK Forum - Carers UK Forum

Hello I'm new to the Carer UK Forum

Tell us a bit about yourself here.
Hello I'm new to the Carer UK Forum

My name is Billy Walker and I have been married to Margaret for 26 years. Margaret was diagnosed with Primary Progressive Multiple Sclerosis 11 years ago, exactly 1 week before her 40th birthday...nice pressie eh!
Whilst I was still working full-time, my 2 sons in effect became young carers for their mum but the degenerative nature of her type of MS meant I had to give up work 3 years ago and I am now a full-time carer

I want to do whatever I can to publicize the Campaign in the Edinburgh area and although I have read the comprehensive campaigning tips on the Carer UK website, I must admit that I am more than a bit overawed by it all, I have no experience of lobbying and political campaigning and dont know how to start the ball rolling

Any ideas and support out there
Hello Billy welcome to the forum Image Hey you have come to the right place for advice etc someone will pop along and advise you on how to go along with the Campaigning i wish you well with it Image

Any ideas and support out there
Welcome to the forum Billy.

You will get plenty of support and even ideas but what issues do you want to campaign about first?

There are quite a few members on the forum from Scotland and several both organised and took part in a carers protest in Edinburgh in April.It was linked with a one in London held same day.

See here

I will point out your post to a few of them and hopefully they can help you more.

Rosemary
Thanks John T....thanks for responding so quickly, I would have replied earlier but I have been out all day....my dad died recently and my mum is now in a care home as she is registered blind and has advanced dementia, my brother appeared at my door along with her earlier today today ....Her periods of lucidity are rare and precious to us all so off we went as a convoy, brother and mum + wheelchair, wife+ wheelchair and me...had a brilliant day out and my brother has just taken her back to the care home

Tomorrow after mass we are off to see my in laws who are also in a different care home (again due to blindness and dementia).......its nice not having to explain and i know other carers will understand just how it feels to care full-time plus look after family and care-home visits, medicals, physios etc....anyway i am definitely not looking for sympathy, I bet there are many carers out there who care for extended family as well and there is always someone worse off than us....

However over the past 11 years, any medical and/or financial improvements in our situation have needed us to research, us to lobby, us to navigate beaurocratic benefits mazes, funding applications. nobody tells you anything....it almost seems that if something out there would benefit your situation (eg adaptions), you never find out until its too late and its impossible to find anyone who's job it is to make it a reality....however if something is detrimental (eg benefit rules) then its everbody's job!!!!.....everone seems to crawl out of the woodwork to kick you while you are down

Anyway its been estimated that Scots carers save the economy £ 6.7 billion yearly...Don't know what the national total is ( bet its astronomical)...in return we get to exist on subsistence level benefits.......

we dont get our rightful share of that money in return for the provision of expert care
nor do we get MP's salaries or their expense accounts...
we are not valued or treated with respect for the expert care
we are not valued for being nett contributors to the economy

frankly i've had enough and i am hoping that there are enough carers out there who feel the same, its time for real change....so as I said I dont know how to go about this campaigning mullarkey...its all a bit daunting but experience has taught us nobody else is gonna do it for us...we need to stand together and help ourselves if things are to get better.....any ideas and advice welcome

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what issues do i want to campaign about?...i must admit my first reply was EVERYTHING, THE WHOLE SYSTEM IS CRAP....however on reflection the truth is I had never really though of this and have just found the first benefit of this forum...new eyes and a fresh perspective to better analyse a situation...thanks Rosemary
I must admit im stuck for an easy answer to this.... our case has been so complex over the years and our experience of every aspect of all the services provided have been negative....this might be a bit naughty to bounce it back but what are you thoughts about the priorities....what do other carers think
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Here we are together: along with Cathie Craigie, my MSP:

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....this might be a bit naughty to bounce it back but what are you thoughts about the priorities....
Well then,who feels a fool now Image Image How was I to know Billy that you already knew that rogue Rob Image Image .To think I emailed Rob and Marie to link you all up Image

You just have to read this and other forums Billy to realise that no two set of circumstances the same, so the issues to campaign about can vary too.However, as individuals/groups, the support given online is great.We all help each other when we can.

As regards priorities Billy,for me ( and others ) the most important thing happening just now is the Welfare Reform bill which is back at the Lords this coming week.Amendments will be coming up at Grand Committee stage on Tuesday 9 June onwards.I believe it can be watched live but will check that out tomorrow.

For example,although the govt said any carers if moved to JSA would not be expected to look for work, no such assurance is written into the Bill.This is needed.

Govt are abolishing Income Support.This needs stopped.Lord Kirkwood and Baroness Thomas are putting an amendment to delete Clause 7 of the Bill about this.
The Government also intends to remove adult dependency increases for new claims for carer's allowance from 2010. However, adult dependency increases already in payment at 2010 will continue until entitlement ends or until 2020, whichever is earlier.

The Green Paper on Social care is due within next 2 weeks too.Will be interesting to see what it contains.

Bet you wish you had not asked Image Image Image
Hi MS Carer and welcome aboard!

It's always tough to decide which battles to fight. Fight too many and you'll be exhausted, with no result. Which one issue gets to you the most?
Hi MSCarer and welcome Image
Pick a battle, any battle and join in, because every way you turn, there is one.
But the tide is slowly beginning to turn, whereas once you fought alone and blind, now there is a whole army of people who have been there, done that and can tell you how best to 'arm' yourself, all at the other end of a keyboard.
Though in truth, they are battles none of us should have to fight as all we are really asking for is a decent standard of living for our carees and ourselves.
Hi MS Carer welcome to the forum Image