Carers World Radio chat, Thursday 12thMarch 2009
In attendance:
.
Sam_B, Online Editor, The Princess Royal Trust for Carers
SamS, The Princess Royal Trust for Carers
Ronc, Carers World Radio
Patricia Carers World
Carers:
jeanette
Glynne
Virginia
Rosse1234
Sam_BHi RonC.
ronchi sam
Sam_BWelcome to the chat room.
jeanettehi ronc
ColinBin that respect virginia, the PRTC here is streets ahead of the other carer's charities
ronchi jeanette
Sam_BHow are you doing?
Sam_BRon, we were just talking about the rotating door, sometimes you get kicked out of the chat room and have to log in again.
virginiaah lol
roncfine thanx just talking to patricia she will be with you in 2
Sam_BWill Patricia be joining us tonight Ron?
Sam_Boh..you beat me to it!
roncyes just called her
ColinBhello ron..how are you this evening?
ronchi Colin im very well hope you are ok
ColinBim pretty good thanks
Sam_BHow are things going with the radio station Ron?
roncgreat
Sam_BHave you had any shows today?
jeanettewhere are you based Ron?
roncits going ok we are talking to othere internet stations who want to take the prog
Sam_BIt's great that there is a radio station devoted to carers.
ColinBthat is good
roncwell thats weird Jeanette I am based in Berkshire but our presenter lives in LA
ColinBwell done
jeanettegood heavens
Sam_BWhat time is it in LA now? ::laugh
roncwell i may have some breaking news on that tonight. You will be the first to hear it
jeanettehow long have you been going?
roncmidday
Sam_BWe are lucky! Being joined by someone from California!
glynnewb me!
Sam_BThat's not so bad then!
jeanetteI cant talk american ,lol
glynnesunny
Sam_BWelcome back glynne!
ColinBlucky her you mean..least she will have heat and sun..lol
ColinBwb glynne
glynnefought u where busy colin?
glynnety
roncwell it started around 11 years ago when i was a carers support worker with care fm which was an fm station based in Surrey. We were on for
28 days with live progs 24 hours a day
ColinBi just popped in to say hi glynne
Sam_BRon is here now and Patricia will be joining us from....LA ::laugh
glynnehi
glynneHello ronc
jeanettethat is a long time.I hadnt heard of it.how do you advertise?
roncbe back in a mo just setting patricia up
Sam_BOk, see you in a bit ron!
glynneHelo Virginia
virginiahi
Sam_BHow are you doing Glynne?
Sam_BWhat's the weather like where you are?
glynneme? all right ty how are you?
Sam_BIt's pretty damp in London.
glynnecured the computer quirks
Sam_BHow are your cats?
virginianothings changed on here then
virginialol
jeanettecold in Brum
glynnemad as ever bane of my life, females you see.
Patricia Carers World joined.
Sam_BDo you reckon we should ask Patricia what the weather is like in LA. Bit of a waste of time really!
virginiano i mean talk of the weahter
glynnelol hello pat
Sam_BHi Patricia.
jeanettehi Patricia
virginiahi
Sam_BLOL glynne.
ColinBhi patricia, and welcome along
Sam_BYou got set up OK Patricia?
roncpatricia has joined us
Patricia Carers Worldthe weather in LA is fabulous ... its the people you have to worry about :-)
Patricia Carers Worldhi everybody
glynnepleade don;t tell us any more!
Sam_BHi rosse!
Patricia Carers Worldok
jeanetteoh like our social services Patricia
glynnehello rosse
Patricia Carers Worldyes!!! lol
virginialolj
jeanetteHi rosse
Sam_BGood to see you back in here rosse!
ColinBwell..i must dash off..so hi, bye and im sure they will be gentle with you ron and patricia..lol
ColinBbye for now
virginiabye
glynnebyre col
jeanettebye colin take care
glynnebye
Sam_BWe're very lucky tonight to be joined by ronc and Patricia from Carers World Radio!
ColinBc u later if you around glynne
Sam_BSee you later col.
glynnecu later got web cam on
jeanetteHi Jean
glynnehello jean#
ColinBcool
Sam_BHi JeanM
JeanMhello
ronchi jean
Patricia Carers Worldhello
rosse1234hello ever one
glynnehi how are you?
Patricia Carers Worldall good here
Patricia Carers Worldso - what kind of interviews do you like or would you like on Carers world radio??
rosse1234hi hpoe you can read this as am new
glynnelol
glynnesam!
Sam_Bhello again... ::blink
virginiahow do we tune in never heard of it
Patricia Carers Worldron can answer that
rosse1234hi onc
roncHi Virginia you go to and there is a link
there to listen in widows media or podcast
virginiaok thanks
glynne ty
virginiaalways online then??
Patricia Carers Worldits worth doing and we'd love your feed back ...
virginiawill do
Patricia Carers Worldwe want to do more stories about carers too
roncwe have a prog once per month and we are always looking for Carer experiences
jeanetteI am trying to do a one 'man' awareness campaign and petition for people with L/D and early age dementia.( doing it on the net)have you come
across this problem during your time on radio?
roncyes on line all the time
rosse1234glyn i have big trouble witrh ther quirks
glynnelol
glynneand I am being naughty sorry
roncyes there is many people who do this and this is one of the reasons we wish to move forward with the Carers radio station.
glynneAnd I bet ther are sone carers care stories out there
rosse1234one minute too fast theb no one says anything
glynnethere are a millon carers sorois out there this has been one of them!
roncif we could get a national radio station for carers to better inform and debate issues for the 6 million + Carers within the Uk and the
billions across the world
glynnegood idea government funding?
Patricia Carers Worldit would be nice to be able to pool all the one man situations
glynneand websites
Patricia Carers Worldgive people an individual human voice through a common network
jeanetteI seem to be batting my head against a brick wall to get an appropriate service
glynneor swat gen around more
Sam_BCan someone bring me up to speed? ::blush
virginiai am flabbergasted at the injustice of benefits
virginianow i,m on income support
virginiaand a single parent
roncGlynne wish there was can't see the Government funding this. The last 24 hour station we put on air no one would give us cash and we funded
this on advertising only
Sam_BWe get a lot of calls in the London office about benefits.
Patricia Carers Worldinteresting Jeanette - sadly not uncommon ...
Patricia Carers Worldeven with all the strategies in place
Sam_BOnly the other day a carer called to inform me they were setting up a petition to keep Carers Allowance seperate from others.
virginiado you work forprtc sam
jeanetteif we dont fight we get no where
Sam_B...and for carers to be able to claim it regardless of other claims..
JeanMtrue
glynneI have been asking about the figures; if only less than a million get carers allowance why have we five million neglected in that way? It
looks an large figure if this is based on not fulfilling the requirements of a carer!
Patricia Carers WorldI know - it is so easy (too easy) for voices to be lost ...
roncThe key bit is transfer of the strategies into hard fact on the ground
jeanettewe have enough on our plates without hacving to fight
glynnea large figure sorry
JeanM5 million are neglected as they do not qualify
Sam_BOne of our jobs at the PRTC is to influence government.
JeanMdoesn't mean they don't care for more than 35 hours
Sam_BIt's a massive task as we can easily be drowned out.
glynnebut did not a mill or so say 50 hours care or more?
Sam_BBut we're getting better at it...
Patricia Carers WorldI was at the house of commons last year and the politicians were very proud of their selves with all their policies ... but I spoke
to Carers on the ground and the amount of healthy cynicism was amazing ..
Sam_Brosse, how are you?
JeanMi work for 24 hours a week and care for the rest
JeanMi don't qualify
Sam_BIs there a similar situation in the US Patricia?
jeanetteah but Patricia..it is easy to say something ..the hard part is doing it!!!
rosse1234ok sam
Sam_BThere's a a lot of healthy cyicism on our boards!
Patricia Carers WorldI think that is why there is so much more room to give you guys more of a voice on the ground ... we need to create that facility cos
your stories are so very compelling (unless of course you have no heart)
Patricia Carers WorldJeanette - I couldn't agree more
roncwell Sam if we had the national Carers station this is the sort of thing that could be debated and listened to up and down the country and
for Carers to be able to question the people that make the decisions. i think it would be a great way to push the carers agenda instead of isolated pockets
of people trying to do stuff. what do you all think?
glynnewb me
Sam_BI have the tv on in the background, The One Show, and they have a feature on abot young carers. Good stuff to have that stuff on prime time
TV.
Patricia Carers WorldI see so many words on these documents written in a language I hardly understand
Patricia Carers Worldit is maddening
glynneso it is.
glynnesomething that I feel about that
glynneagree to the goobledegoog there
Patricia Carers Worldso - when we take over the world we do it in plain english :-) lol
Sam_BAt the end of the day, all this 'clever' language, is just bad writing really.
glynnelol
Sam_BIt doesn't reach it's audience.
Patricia Carers WorldAGREE
glynnethings have to be plain for me.
Patricia Carers WorldSeems we have one very strong strand of thinking here!
jeanette my daughter has just been assessed for the umpteenth time and the one latest one gives them scorings that are difficult to understand
Patricia Carers WorldI have been thinking it for ages ... I bet we all have!
Patricia Carers Worldoh right
Patricia Carers Worlddoes anyone understand the scoring - is there anyone to talk to in plain language
glynneask google for interpretor
Patricia Carers World:-)
jeanetteSam it is done deliberately so we will lose out because we dont understand what is actually being said
glynneand spell checker
glynneI have just posted something on those lines on the boards
roncthat is so true Jeanette
jeanettedont worry Patricia.I sign NOTHING unless I do understand it and agree
roncI think it is something around power
Sam_Bhello again everyone.
Patricia Carers Worldgoing back to Glynee - I think we all need plain language ... I think people hide behind the complicated language - I have
interviewed many people in parliamnet and senior policy decision roles and I get the feeling they don't even know what they ARE really talking about ... they
use it to hid
roncwb Sam
glynnelol
jeanettewe do user friendly reading in Brum so I tend to ask for that.
Patricia Carers WorldGood Jeanette, - but I wish people spoke more clearly too ... Mind you we spoke to Minister Phil this week and I have to say I REALLY
liked his manner and way of speaking .... a good guy
Patricia Carers Worldthe interview will be on Carers world radio (plug plug)
glynnespeaking to yes! But do they hear?
jeanetteIvan Lewis seemed ideal to me!!
Patricia Carers WorldOh - I haven't heard of that user friendly reading ..
jeanettebut they moved him
Patricia Carers Worldwell - I won't say anything but lets put it like this - Phil Hope granted us an interview straight away ... Ivan Lewis said he would
but never came thru - so I am biased
roncPhil Hope seemed to know what he was talking about so we shall watch and see what happens over the next few months
Patricia Carers Worldthis new guy Phil Hope, has promise
virginiaminister of what
jeanetteIvan Lewis had no choice with us ,lol.we just confronted him .lol
virginiamaybethats cos of his surname LOL
glynnelol
Patricia Carers WorldPhil Hope is Minister of State for Care Services and MP for Corby and Northhamptonshire
virginiawe,ve been hoping for a very long time
glynneI thought there would be more in here this ev.
Patricia Carers Worldmaybe ... Hope brings Hop
Patricia Carers WorldI mean Hope
jeanettehere is Sam again glynne ,lol
glynnedoing a glynne %%% tiss know in here now
Patricia Carers WorldSam - where are you going
Patricia Carers Worldoh was it somethig I said
glynneonly me not that bad.
glynnelol P C
jeanetteso where do you get your 'storys'from Pat and Ron?
Patricia Carers Worldso I don't know your situations - are you all carers or working in the care field
virginiai am carer of 13 yr old boy
Patricia Carers Worldoops - I'll let ron answer
jeanette41 years a carer me!!
virginiawith complex needs
Patricia Carers Worldoh right ... 13 years and always a carer
glynneis in lancashire caring for his wife Kathllen with arthritis plus
Patricia Carers Worldoh gosh ..
Patricia Carers Worldok -
Patricia Carers Worldso a lot of caring going on here
JeanMadvanced ppms carer
Patricia Carers Worldon top of getting your rights met
glynneKathis 92
virginiai cared for my hub for 3 yrs
jeanette24/7 Pat
virginiathen he left me
virginia!!!!
glynnenot so long at all me/
Patricia Carers Worldgosh - it is alway so humbling to hear carers stories
roncthe stories come from everywhere. Most of hte stories we get from Carers neews feeds we have come in and otheres we pick up by various
website. We try to bing stories from the Uk and the world. It seems that Carers face the same issues no matter what part of hte world they come from
virginiaafter he got 100,ooo pounds compensation
Patricia Carers Worldreally
virginia!!!!
jeanettepensioners are treated disgracefully
Patricia Carers Worldoh Virginia . thats not nice
Patricia Carers Worldgosh ...
virginiaoh no
Sam_BMight be an idea Glynne. Seems like you're doing a good job facilitating this chat yourself!
Patricia Carers Worldyes ... it can be cruel
Patricia Carers Worldthe only thing that really makes a difference is people
Sam_BCan you listen to your radio shows after they've been braodcast, as a podcast?
glynneas pensioners we or I feel we ard better off than most carers
Sam_BIn fact, are there any carers podcasts out there?
Patricia Carers Worldoh - well that is something ...
glynneb r b east enders on and have to swtich that off or tell bows up.
Patricia Carers Worldmaybe it is a patchwork quilt of getting services out there and needs met
Sam_BYikes glynne.
Patricia Carers Worldso dependent on area too
roncyes Sam all the past shows are on the websitte. We also have a
you tube area. This is where we put a short section of hte show
jeanettedo you glynne.dont think a lot of pensioners will agree with you
glynnelol
virginiaI was with 3 other carers last night
Sam_BExcellent, so you can watch/listen to your programmes on youtube? What's the name of your channel?
virginiaall caring for brain injury
virginiawe all get
virginiadifferent services
virginiasome much better than others
virginiamy help seems the worst
Patricia Carers Worldreally - wow - it is such a lottery
virginiachildrens services !!
roncjust Caarers World Radio
virginiabut we all in diff parts off essex
virginiayet all getting
virginiadifferent things
virginiaits crazty and makes me so mad
Patricia Carers Worldwhen you trace it back does it make any kind of sense??
JeanMit's all post cade lottery
Sam_BI'll take a look for it after the chat. We have some young carers videos embedded on YCNet our young carers site.
Patricia Carers Worldor is it simply completely random
virginiawhat???
Patricia Carers Worldpostcode
virginiaRndom but borough councils make a difference and PCT funding
virginiai think
virginiawe all under the same county
roncwell it drags people into the site and has other Carers videos on it
virginiabut accessing different levels of help
virginiabloomin crazy
Patricia Carers Worldthe only good thing i can say is - be grateful you don't live in the USA - they are CRUEL - you have to be a winner or you are a
loser -
jeanettein my city you get assessed and the points you score gives or refuses a service
roncit seems to depend who your social worker / care manager is will depend what services you get
Sam_BI'd like to have videos on carers.org.
Patricia Carers Worlddon't go Glynne
Patricia Carers Worldstay
glynneI was speaking from the carers point of view in re me agan most carers
roncjust some code you need to put in sam
Sam_BDo 'caregivers' get benefits like carers do here Patricia?
Sam_BThanks Ron. Yes, I've been learnign the basics of HTML code.
Patricia Carers Worldno - the whole social services system here is - well - dreadful ... I promise you - it is unbelievable here
glynneah! carer here meand me as looks to me wife.
roncwe also want to broadcast conferneces out and for those carers who cannot make it to the event for them to watch on line and telephone into
the conference to be part of it
glynnecare workers get paid
Sam_Bsounds great Ron.
jeanettehey Sam pensioners DONT get Carers allowance .I get NO benefits
jeanetteyet am a 24/7 carer
Patricia Carers Worldthere is no sense of taking care of people in the community ... it is all "look after yourself" - I love we come from a country where
we want to provide some kind of help for people who are doingless well than ourselves
glynneand how much respite Jeaneete
SamS joined.
roncthis is what the Government need to review
SamShello!
Sam_Bso when you claim pension you can't get carers allowance?
Sam_BHi there SamS
Sam_BGood to see you in here.
SamSHi there SamB ::laugh
virginiahello
jeanetteGlynne respite for me keeps my daughter OUTof residential care
SamSI'm one of the ycnet workers for anyone who hasn't met me before, just popped in to say hello seeing as it's a special chat, hope you don't
mind? ::smile
Patricia Carers WorldI know funds are stretched - but as Carers UK are always sayiing - you guys are propping up the NHS single handed
Sam_BSay hello to Ronc and Patricia, our guest tonight.
SamS"hello"
Patricia Carers Worldhello
glynnenot at all all are welcon=me here
SamSThanks Glynne!
glynneeven me!
SamSSo you're from the carers radio station Patricia and Ronc? I didn't even know there was such a thing
till a few weeks ago ::blush