Special trips for kidney patients aged 16 -40

Dear All

I got an email recently from a charity that supports 16-40 year olds with serious health conditions. They have supported local kidney patients and their loved ones with ‘special days’ over the last few years. If you or someone you know is the right age group and has kidney problems – you are eligible to apply, see the info at the bottom of this blog.

I chatted to one of my Wigan patients Sara to get some info about her experience a couple of years ago for this blog.

Dr Janet Hegarty

Patient Blog – Day trip to London

J – When you heard about the Willow special days what did you think of it?

S – I thought it was a brilliant idea for people that couldn’t afford to pay for themselves to go out on a special day, it was like a second chance, a nice treat for somebody.

J – You’d been dialysing quite a while at that point, how did it feel that it was offered to you as a kidney patient, a dialysis patient? Because we often think these sorts of things, I mean in the papers it’s all cancer and all that jazz isn’t it.

S – I felt quite lucky really and privileged.

J – How did you come up with your ideas, what was the process, you said you had to fill in a form.

S – Yes and I had to write down 3 places where I wanted to go, but the one that I wanted the most.

J – So what 3 things did you pick?

S – I think it was to go to London just for the weekend, to go to Buckingham Palace and things like that, you know have a look round, sightseeing.  I then I think the second one was to go to Paris and I can’t remember what the third thing was.

J – Had you been to London before?

S – No, I’d never been before

J – What happened after you put the form in?

S – Somebody rang me – her name was Katy, she rang me and then she said she would keep in touch with emails and ringing me, saying that if she couldn’t get the London then she would have to talk to me about going to Paris and how much they could contribute to it and what they’d pay for and what they’d be able to do for me, things like that.

J – So you plumped for London in the end and what was your special trip?

S – It was just sightseeing and spending some time with my partner, with Jody.  It was nice.

J – How did you get there, what did they pay for?

S – They paid for your 1^st class train ticket, which was obviously quite expensive really, then they booked us a taxi from the train station straight to the hotel, so we didn’t get lost or confused and then we went straight to the hotel and went to the desk and they sorted everything else there.  Everything was already on file because obviously Katy had organised it all, she had sorted it all out for us so we didn’t have anything to basically do, it was just like you go and they’d done it all for you.

J – And how did that feel?

S – Really stress free – it felt like a bit higher class, you know what I mean, like when somebody does something nice for you

J – I think you went out for a special meal or something didn’t you?

S – Yes we went to Gordon Ramsay’s restaurant, she organised that for us.

J – What was that like?

S – It was really good because we met loads of famous people as well.  Yes, they were all sat up on the top tables and you could see them all and if you wanted to go over you could have done.  It was really nice

J – What was the grub like?

S – Oh, I’d never go again!!

J – Too fancy was it?

S – Too fancy for me, they give me a raw steak and I don’t do raw steak, because they cook it how they want to cook it, they won’t be told how to do it and I was like, well I don’t like it like that, all blood on my plate.  I wouldn’t go again.

J – What was your hotel like, was it nice?

S – With the restaurant they also gave us a budget towards the food, they gave us £160 towards the food and that was quite nice to know and relieved really because it was an expensive restaurant!

J – So you didn’t have to worry so much.

S – Yes. The hotel was really nice, it felt a bit like luxury, because you got your luxury bathroom and shower and then obviously your big bed and your nice scene and TV in your bedroom with all the channels on it, mini bar, it was really nice I enjoyed it.

J – And did you do any sightseeing in the end?

S – Yes we went to the London Eye, we went round Buckingham Palace grounds, had a walk round and then we went to an animal centre, like a Sea Life centre with penguins and all different types of fishes and stuff.  It was just nice to get away and a change of scenery, that’s all I wanted.

J – How long have you dialysed for altogether now, just to give people an idea?

S – I think it’s about 10 years now.

J – So you say they still email you and they are still in touch, I didn’t realise that.

S – It’s just an update of how people are doing on their days out and what they have experienced.  It is quite nice to know the things that they do for everyone.  When they email me I do read through it, it’s nice to know.

J – I’m doing this as a little blog for GMKIN, just really so that people know, because we’d never heard of this charity ourselves and I’m sure loads of kidney patients don’t realise they could use this if they are under 40 and are the right age and everything.

S – I think I actually got it from here, it was a leaflet.

J – Yes, I can’t remember who found it but we did approach a few different patients to tell them about it, so I’m going to get Emma to go round again, we only have a couple of people under 40 to be honest, but just check if they’ve done it or not.

S – I know another patient John actually went with them as well. I think he went to Center Parcs with all the kids and stayed in a cabin, and he just loved the time obviously with his family.

J – So you can pick really different things, I’ve heard some people going to football matches and that and being shown round.

S – I got one email where somebody actually went meeting Gary Barlow and Take That, I was well jealous!

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If you are under 40 and interested – you can get in touch with the Willow Foundation below. Your kidney doctor or nurse will be happy to supply Willow with info about your medical conditions to support the application.

Willow is aiming to fulfil 1,100 Special Days in 2015 and with your help we can provide your patient with a positive respite from diagnosis and treatment, a day to plan and look forward to, a day to share with family and friends, and a chance to create precious memories.

You can read more about Special Days on our website – www.willowfoundation.org.uk.

Please do share this email with your colleagues and patients to enable us to reach many more seriously ill 16 to 40 year olds this year and make a positive difference.