Dis1960 and Chrissie57

[Gillette]

I've moved this to a new thread with a better title


I think it would be lovely for members to send hugs and other good things to Douglas and his wife, Chrissie. They had a disappointing day yesterday (I shan't give details as they are not mine to share) and I am REALLY hoping it all gets sorted today. If it doesn't, I can provide some effigies and members can annihilate them with pins, if you'd like.

Sending hugs, best wishes and hope to you both.

P.S. That was some beard you had, Douglas!

[Ellie]

Sending good vibes and a big hug to you both, Douglas & Chrissie.




If there is one good thing about your prolonged hospital stay, it's that you have the wonderful Dina for company and support.

Hope you get sorted today, Douglas.

Love Ellie.

[Terry]

Hope it gets sorted without the effigies and pins Douglas and Christine;

Thanks Dina for your support to others.

Love Terry

[Doug Carpenter]

Hi Douglas and Chrissie.

Thinking of you and sending hugs.

Thanks for the heads up Dina.

Doug

[Dis1960]

Now back home,,

[Terry]

Hi Douglas,

Pleased to hear that you are back home although poor Dina will surely miss you both.

Love Terry

[Ellie]

Great news Douglas.

(now to free the Wythenshawe One )

Best wishes to you and Chrissie.

Love Ellie.

[Gillette]

Great news Douglas.

(now to free the Wythenshawe One )

Best wishes to you and Chrissie.

Love Ellie.

Ooh, I rather like the idea of a campaign for the Wythenshawe One!

[Gillette]

Now back home,,

Douglas and Chrissie,

I can't tell you how thrilled I am that you got home today. However, it would be dead simple to tell you how miffed and how jealous I am! Ha ha ha. All I can think is that the staff like me so much they can't bear to let me go! Anyway, I can't go home until I find someone suitable to take over as chair person of the Tom's Bottom Appreciation Society!

I was so sad for you both when I realised what had happened and I was worried that, being the weekend, nothing would be done until Monday !

I hope you received the message I sent via Apollo.

[Gillette]

Hope it gets sorted without the effigies and pins Douglas and Christine;

Thanks Dina for your support to others.

Love Terry

Thanks, Terry. It's my pleasure to hunt forum members down, or even MNDers who are not yet members, and drive them bonkers! No, I just remember how alone I felt when I was in hospital just after diagnosis.

[Gillette]

Great news Douglas.

(now to free the Wythenshawe One )

Best wishes to you and Chrissie.

Love Ellie.

Hi Ellie,

Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!

[Kayleigh]

Hi Ellie,

Don't rush the Wythenshawe One campaign - I need to stay here for a while to keep an eye on the two fire engines full of hunky firemen parked outside my window!

It might be too late to put that campaign on hold Dina!

Apparently TC phoned the Fire Brigade, urgently requesting them to rescue a damsel called Dina aka 'The Wynthenshawe One' (also, famously known as Gillette!).

The firemen must have realised that, as you are 'the best a man can get', they shouldn't delay rescuing you - and so don't be surprised if a fireman's ladder (and possibly his hose?) appears at your window very soon! LOL

Love Kayleigh x

[Terry]

Thanks, Terry. It's my pleasure to hunt forum members down, or even MNDers who are not yet members, and drive them bonkers! No, I just remember how alone I felt when I was in hospital just after diagnosis.

Hi Dina;

I try to do the same at meeting and hospital appointments. So often waiting rooms are quite places, sometimes not if I'm in attendance.

Love Terry

[Ellie]

Dina, I am heartened that you can at least get a day pass out of the hospital, but disheartened that the firemen didn't follow through on their rescue mission.....

The more I think of how your CHC application is being handled and how delay after delay and the uncertainty is affecting you, the angrier I get.

What happened to the NHS's stated "CCGs will normally make a decision about eligibility for NHS continuing healthcare within 28 days of getting a completed checklist or request for a full assessment, unless there are circumstances beyond its control" ?? And that's not even the timeframe for a Fast Track application, they (allegedly) can be processed in 48hrs if necessary.

If I were a cynic, I'd say they're trying to wear you down and doing a fine job of it too by all accounts

Have you the fight in you to complain to your CCG? Or have you an advocate who can act on your behalf? A well constructed formal complaint, not a moan, may get the ball rolling?

IDK how far you want to go with getting a decision within a reasonable timeframe, or if at all in case you rock the boat and they somehow manage to put your file to the back of the pile, which would be reprehensible. You could involve your MP - they may need you vote soon

Hope you continue getting the odd day out and can use the HCPs given you're in hospital. For example, the OT should assess your wheelchair needs and provide one which mitigates any pain it causes - they have an explicit duty of care to you.

And what about your PC access - can they provide anything or can AT / AAT visit you as an inpatient?

If necessary, involve PALS (again?) and MND Connect?

It's simply not good enough and the CCG should not be allowed to treat you as they are.

Love Ellie.

[Gillette]

Oh, Kayleigh, you did make me chuckle! Unfortunately nothing and no-one appeared at my window! Another of life's disappointments!

That's a kind thing to do, Terry. I can't do that: I might manage to talk to someone sitting next to me, but that's all.

Ellie, thank you for your anger on my behalf. At the moment, I've lost all my fight. I can't cope with talking about it, typing about it and definitely not thinking about it but my son has agreed to do something.

My MND is worsening noticeably every day. My life is literally being wasted in here, despite the best efforts of the staff - and they are being tremendously supportive.