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