Supporting carers - Andrew Marr & Jackie Ashley

[Janet_16021]

I work at DLF the Disabled Living Foundation and am lucky enough to be involved in the forthcoming Alf Morris Lecture at which Andrew Marr and Jackie Ashley will talk for the first time about their personal experiences of Andrew's stroke and what it meant for them as a couple and Jackie as a carer.

At DLF we are trying to use this amazing opportunity to raise the profile of the role of carers - Jackie is a journalist by background and comes from a political family who were very pro-disability issues from years ago & yet they say their perspectives are different since their own experiences.

We plan to video the talk and use every opportunity to put the spotlight on them and their experiences. It's rare to have people in the public eye who are willing to be open and say things which need to be said about the state of support in the UK............

[Seoc an Aonaidh]

It's all very well highlighting the trials and tribulations of two high profile individuals, but it really doesn't help the rest of us. Frankly, it merely highlights the simple fact that if you're a public figure, you're in the very fortunate position of being able to get the care and support you need (especially as an employee of the BBC - where the programme bearing your name continues, until you are sufficiently recovered, enabling you to resume your previous role). If you're not in the public eye, it's more like a game of poker or craps, totally dependent upon which way the cards are dealt, or the dice roll.

Surely it would be better to feature everyday people, dealing with similar circumstances, rather than further inflating the egos of already very egotistical individuals. Andrew Marr, although having had a serious stroke, is hardly representative of the majority of people, who have found themselves in the same situation - he still has a job - many younger people who have had strokes, do not! Nor do they have a voice - and his certainly isn't one of them - questioning politics and politicians is his game, (and I've yet to see him question the plight of many stroke victims).

Finally, Andrew Marr's partner is hardly likely to experience the hardships that many other carers do.

[jenny lucas]

Speaking personally, I always think it's a bit of a balance in terms of pros and cons of having a 'famous' person fronting any health issue. Sometimes it can be very good for 'the rest of us' - eg, Angelina Jolie and BRCA, and even poor Jade Goody on cervical smears (though that effect has worn off, I understand, and far too many young women still don't bother with their check ups).

I'm not particularly 'against' Andrew Marr etc, but in the end, with caring it mainly comes down to money. If you have money, you can hire professional care workers, and the stress levels just drop to (near) zero. That said, I don't think they drop completely to zero, as the emotional stress, worry and anxiety is still there. Plus, in the end, no amount of money can take away the 'drag' factor that someone in need of care places (through no fault of their own!) on their family carer.

For example, I might be a millionaire, and have an entire wing of my mansion staffed by nurses and care-workers to look after my 91 y/o MIL with dementia - but it is still ME she wants, and my company is what gives her happiness. Without my presence, she isn't happy. That is the 'drag' factor on me, that means my life is no longer entirely my own. (I don't mean that 'nastily' but it is true, all the same)

Anyway, hope all goes as well as possible with your project and having AM etc there.

[bowlingbun]

I too have grave doubts about things like this. I'd far rather have a fighting fund set up to help one or two people a year get what they are entitled to, and deserve. Our forum has some dreadful examples of people who are simply not getting what they are entitled to, and no one cares. Local authorities are increasingly "gate keeping" information about entitlements.

[jenny lucas]

I suppose, to add to the generally 'sceptical' response (not to be nasty, I hasten to say, and apols if it upsets!), but we've had TWO prime ministers who have BOTH had 'special needs' children. Gordon Brown's daughter has CF, and David Cameron's late son had cerebral palsy.

BOTH those men know EXACTLY the toll that caring takes on families.

Have they done anything to ease that toll for all the thousands (tens of thousands? millions?) of family carers in the UK?

So I don't really think there's any need for 'awareness raising' - those of us who are family carers have very good awareness of how totally inadequate support is in the UK in general (for non-millionaires!). And I'd venture to add that the NHS and SS have equally good awareness of what they are NOT being funded to do properly!

(That said, for the record, I will ALWAYS have a good degree of respect for DC, as he personally created the Cancer Drug Fund when challenged by one of his constituents with terminal cancer for which NICE denied him the only drug at the time that could extend his life. )

[Seoc an Aonaidh]

Raising awareness involves increasing public understanding. It is not generally within the remit of politicians, or journalists, unless they have a very personal agenda (as would be the case here) - their ultimate aim is usually somewhat different. Unfortunately, your average Joe, doesn't grasp the implications of a caring role.

In this instance, the likes of Andrew Marr and partner, won't make one iota of difference, whereas the likes of Adele or Cold Play, could. Popular singers, musicians and entertainers, are the way forward. No disrespect to journalists (who are marginally slightly above estate agents, when it comes to credibility), but, they are really not going to have any impact on the general public, as a whole. We watch and listen to the news, many of us may well read newspapers, or internet news sites, but, the majority of us take it all with a pinch of salt.

People like former paralympic athlete Ade Adepitan, are more likely to help our cause, than people like Andrew Marr et al. Ade overcame his childhood disabilities (polio), to carve out his career. Andrew, after his stroke, relied upon what he'd achieved, as an able bodied person, to continue his, already established, career. There's a huge difference, involving opportunities that are rarely available to the majority of disabled, or yet to become disabled, people.

Andrew Marr does not in any way represent people with acquired disabilities, from any background. He has been very fortunate, in many ways, and I would not take that from him, but, as a representative, or indeed consul, of people who have had strokes - sorry, he just doesn't have the qualifications, nor the diplomatic skills required.

[Henrietta]

Just to put a positive touch to this thread, Andrew does offer light at the end of the tunnel. Many of us know that not everyone is fortunate enough to recover as well as he has been able to but nonetheless it does show the varying degrees of impact a stroke can have, and that if you know someone whose had a stroke it is possible that sometimes good progress can be made with recovering speach and mobility.
I am sure that if he weren't sharing his experiences and trying to do some good out of his own illness, people would be criticising him even more.
He's not trying to change the world but just doing what he is able to in his privileged position.

[Greta]

I nearly chipped in on the negative side at the beginning. I did read this message as a sort of slap in the face for the hoi polloi.

After that I looked at the DLF site and they help disabled people locate useful equipment (among other things). So this is just a form of fundraising for a particular charity, selling expensive tickets for an event to make funds. Good luck to them. And surely as Jack Ashley's daughter Jackie will know a lot about the disabled.

Still, there are a lot of carers suffering in their lives and this is not going to help them much.

[Seoc an Aonaidh]

Apologies if I remain on the negative side. Greta I agree, it is a way of raising funds through the sale of expensive tickets. Which also raises the question as to why publicity for such an event was posted here. But, I'll leave that one well alone.

Having once attended (as an invited non-paying guest) a charity dinner and post dinner auction at the Cafe Royal in London, there are many fortunate, and indeed well off people, who attempt to be philanthropic through such events (£30,000 was the highest bid of the night!). Unfortunately, these events, whilst successfully raising funds (which is always good), do very little as far as raising awareness is concerned. The event was fun, undeniably (the meal was excellent and the expensive champagne flowed freely, until about 1 am), but no-one left any the wiser as to what the charitable foundation's purpose really was.

Sorry, but as an ex-marketeer, I don't approve of the verbiage behind the claims. Raise funds by all means, but please don't sell an event as awareness raising, when it's really just a publicity stunt for high profile guests. Has anyone thought to ask whether Andrew and Jackie are being offered any form remuneration? And, if so, how much? According to the following site, his standard fee range for; After Dinner Speaking, Keynote Speaking, Awards Hosting & Presenting, and Conference Facilitating, is between £16k and £25k http://www.nmplive.co.uk/andrew-marr. Let's hope he "kindly and sympathetically" waives the fees for this event?!

For ticket information: http://www.eventbrite.co.uk/e/the-alf-m ... 9294780207. This site also states:

"All income from ticket sales and donations will go towards The Alf Morris Fund for Independent Living, which provides older and disabled people with practical help to live independently."

Please note, "income" would be the revenue after all expenses have been deducted, these expenses would obviously include venue hire (Shaw Theatre, 446 seats), catering venue costs (Pullman St Pancras Hotel), and the guest speakers' remuneration. I would suggest that considerably less than 10% of the total revenue will actually benefit the charity. Then, a deduction for administration and marketing costs needs to be made, by which time, the total that may actually benefit any of the charity's recipients, could amount to less than one percent of the total revenue raised!

There won't be any high level media coverage. Who has actually heard of The Alf Morris Fund? (Courtesy of the late Lord Morris of Manchester). http://www.dlf.org.uk/node/706

Seriously, even though every penny helps. Is it really worth it? There are better ways of raising funds and awareness, than resorting to expensive B Class celebrities, and self indulgent events for those with the wherewithal to support them.

[jenny lucas]

That's a very penetrating expose of charity galas! Sobering, too.

I guess my own personal attitude is that such bashes are sort of 'better than nothing' - in that 'the rich' (ie, those who can easily afford the tickets, the auctions etc etc) will always spend loads of money on enjoying themselves, and so if a fraction (however small??) of that spend gets to the recipients of the charity's funding, then, OK, the bashes are, overall, justified. (But not much justified!). From the charity's point of view, even a small fraction of the 'jollies-spend' by rich folk is better than nothing at all....

It's presumably the same kind of justification that charities use when donated items (eg, clothing) are sold by third parties, and the charity just gets a portion of the profit, and the seller gets the rest. (The Daily Mail ran a story once about the lavish house that some rag-and-bone guy lives in, courtesy of his share of the profits from selling clothes donated to, I think, the Salvation Army.....but, again, the SA do get SOME of the money, which is better than nothing - even if the seller guy gets rich on it....) (It's certainly a tricky moral problem for the donors of the items, whether it's 'worth' giving them to the charity or not, since they will 'also' be enriching the rag-and-bone guy!)

To me, however, I can't really see the point of any 'awareness raising'. Like I say, we've had two PMs with a personal vivid awareness of happens when a high-care-needs individual is in the family, so they don't need their awareness raised. (They just need to divert some of the public tax purse to funding more care for such individuals and their families).

And what good will it do if 'the public at large' have more awareness of the burdens that caring can impose on families? The public don't have control over public tax purse strings, and are they really going to lobby their MPs and local councillors to fund carers better?

The issue of caring can be discussed endlessly on the telly etc etc, but so what, UNLESS more money is put into the pot by central and local government. ONLY if 'media pressure' can achieve government action is there any point at all in 'raising awareness'.