ONLYJOKINGS THREAD

[TripleyTigger]

Done!!

Hope the decision goes your way OJ fingers crossed, will be checking on here to see the outcome!

Dearest Oj,
Sending you every positve good vibe for today, should never all have taken this long, thank you for the picture, xxxx

OJ the photo of your two men is a truly beautiful one, it made me smile (and cry)

i am so cross i could swear

oh no what happened ?

oj what's up?

saw the consultant today had a coffee and chat with her, she talked about the meeting last week and how they wanted it to go to a panel next thursday the consultant and Mac nurse both said that was too far away and not good enough so the lady from funding panel said she would try and get it throu on tuesday (today)
then one of the nurses came down to see the consultant and me, she had had a phonecall from the oncology SW who said they are now saying panel will be next fecking thursday
the consultant went to make some phonecalls and i had to come home to do the school run so i still don't know whats happening, steve is not really with it today, he told the consultant he was on a boat
consultant think the confusion is not drug related but either tumour growth or brain damage from the radiotherapy.

Oh OJ poor Steve
Am so at this, time is something very precious for you at the moment, a week can be a very long time for all of you and mean major changes in Steves condition. However i have to say i am not surprised we had similair experiences in everything taking too long and my mum spent most of her last precious months in hospital when she could have been at home, it's so wrong and so very frustrating for you.

Oh no - you know your MP don't you? In your shoes I would give her a call!!

I'm sorry OJ, however you have not had that call yet so lets hope it is fruitful.

If not, NorthernLurker is right, get on the campaign trail, or on the doorstep if necessary. So [sngry] and at the same time to see you being treated like this.

Oh no OJ. Everything is a sodding battle isn't it?

Time to bring in big guns? MP and/or press?

Of FFS! OJ, I don't know why everything has to be such a battle, but I truly hope that your consultant is kicking some serious butt over this. Much love. x

No! No! No!

swear away, OJ, then contact your MP, cc minister for health (whoever that is) ask consultant what would help eg press, surely the trust would be seriously embarassed if this became widely known, do you have a local radio station, they are always keen for a local story. You need a campaign manager, this is too much for you to do alone. Your time is too precious. Is there a voluntary group attached to the hospice?

I am so sorry OJ this is frustrating to read so god knows how you must be feeling. I don't know how you keep your patience! Thinking of you xxx

dont buy a bed - you should get one funded by NHS CHC or soc.services.

if you want some advice about equipment email me on treesmad at yahoo.co.uk

I cannot stress enough dont spend money on the bed as you probably need a 4 section profiling height adjustable one which will cost loads.

OMG OJ what are they thinking of ?

How cruel to keep building your hopes up only to dash everything to the ground

forgot to say - contacting the press is a great idea . I heard a lady on Jeremy Vine recently with a CHC horror story.

The CHC laws are pretty crap and not clear so open to interpretation by different authorities but this is no excuse for the shittyshoddy treatment your family is getting.

as I said before email me if you want any more advice !

OJ. What a fecking nightmare. Lets mobilise the MN collective, and start the sit in plan, girded by a bottle of rum all round.

I'm so sorry that everything is such a battle. Do these people not realise?

i'm just so sad and angry that this has had to happen. . I do think maybe the press is a good idea. shame the trust into taking action.
I work in the NHS so am all to aware how frustrating and longwinded the whole social worker/funding issues are but this is just ridiculous. I think you need to aim high - get on to the top bod of the oncology service, the director of your NHS trust, the Social work director., head of OT services etc.
Do you need a letter campaign? if you tell us who these director bods are we can write the letters - millions of them.
Are there any charities can help with the equipment? or can your local pub/club do something fundraisingy - or previous employers?
will ponder some more - there must be a way to get some action.

Jesus, OJ. As if you haven't all been through enough! I'm astonished that they might be putting it back yet again.

What can we do to help????

XXX

from what i understand from what the consultant said, they now want to get funding from the mental health team which is a different pot of money from bog standard NHS.
today is the start of the financial year so they should have lots of money.
i am too tired and fed up to think straight to be honest, i am hoping that tomorrow we will know more. then will be the time to write letters, i don't feel comfortable with publicity as i don't want it to effect the kids and want to keep some privacy.i know this is a public forum but that is somehow different

oh oj i was truly hoping i was going to read some good news today. This is just so unfair

Gutted to see the faces when I logged on - so hope they can get things sorted so Steve can come home.

lots of love
x

ps lovely new pics - Elliott looking v handsome - just like his dad