Donating toys and gifts to children in hospital

This was written by someone I know who is a doctor. I run a charity for seriously ill children and can grant most wishes for young cute kids with cancer and provide 10 different holidays but it's much harder for other conditions!

Last year I worked in a children's hospital at Christmas time, and there were so many presents donated, mostly from corporate donors. The entire large meeting room was taken over with gifts to sort. There were hundreds too many presents, so some were leftover for birthdays and other occasions. We still had boxes full of Lego packs in June. 

This Christmas I'm working in child and adolescent mental health, still in a hospital ward. We have had no presents donated and I don't imagine we're going to. Our patients will have one present each, chosen by the therapy team, paid for out of the ward's budget - scrimped and saved from the budget that is meant to cover food, activities, and other expenses. 

If your company, or RAG society, or someone you know is thinking of donating gifts to the poorly children in hospital this Christmas, ask them to donate them to the poorly children in the mental health hospitals instead. They're not as cute and photogenic and good for corporate image, but they're less likely than a sick kid in a medical hospital to have loving family showering them with gifts. Any gifts to child and adolescent mental health services (CAMHS) would be appreciated, both by the young people, and by the staff trying to stretch the budgets to give the patients a nice time. 

It would be lovely if the world could start to address the stigma of mental health, and the disparity of only caring about children with physical problems rather than also those with mental problems.

EDIT: This is the link to the list of CAMHS wards in alphabetical order. They aren't all NHS, but even the private ones will have lots of NHS patients because of CAMHS underfunding and bed crisis. http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/ccqiprojects/childandadolescent/inpatientcamhsqnic/membersdirectory.aspx?theme=mobile
This link shows you CAMHS units on a map, by region, but doesn't seem to work from a mobile http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/ccqiprojects/childandadolescent/inpatientcamhsqnic/mappingofcamhsunits.aspx

Good generic presents include things for an older child or teenager: arts and crafts things, colouring books, cookery things (my patients love cooking and baking!), remote control cars and helicopters, nail varnish, age-appropriate DVDs, nice smellies. Nothing sharp or that could easily break. 

Corporate or larger gifts for a CAMHS ward would include games consoles, sports equipment, cooking equipment (smoothie maker?!), a TV or radio - but best to consult with the ward you're donating to.

Cards would also go down well, even if it just says eg "to young people and staff at [hospital], seasons greetings"

Sent from my iPhone

A short update

Hello, long time no post! I'm afraid this is a short post too. I've not been very well the past few months so have done very little except sleep, rest and when able sew.

I nearly finished my JOY stocking although lost a piece so need to see if I can get a replacement.


I spent August in hospital, not my favourite of places but the staff there are so lovely.

I'm currently working on a little project for my upcoming birthday, I will post details when it's underway.

Until then....

Dear Body

Last week I was listening to Nikki Grahame's book 'dying to be thin', it was very good and gave a good insight of what people, especially children go through when battling eating disorders. After I finished listening I went onto her site and click on a link to Body Gossip. Body Gossip encourages people to write about their body, most were about insecurities so I got writing. It only took 5 minutes to write this letter and much to my surprise Body Gossip are going to have it performed by an actor!


Dear Body, I look in the mirror and feel let down by you. Surely people in their 20's shouldn't have bingo wings or so many wobbly bits? I'm too young for boobs to head south and too old to have a zit of such epic proportions but you seem to disagree and bless me with these qualities.

Despite this I think my body looks ok and after all beauty is only skin deep. The wobbly bits aren't my issue with you, why did you have to let me down so much by turning against me? I'm sorry I spent time with someone with Glandular Fever when I was 11 but I think it's more than time you got over this, let me be me, not someone with severe M.E.

Being confined to bed for 12 years is no fun, nor is the level of pain you successfully manage to spread everywhere, although I must compliment you on your wide range of Neurological symptoms, it's an impressive array and could fill a text book on what can go wrong but please, do me a favour and go be in a text book and leave me the hell alone.

I appreciate that you, my body, does cooperate with me more than you used to, thank you for letting me sit up after 5 years of stuck laying flat, will you consider walking again soon?

I'm looking in the mirror and aside pale skin and the dark eyes looking back at me, I really can't see you at all although I can't see the bubbly happy person I am either. You do a great job of hiding beneath the skin, it's no wonder so many people don't believe how ill you make both me and my friends with your presence, you even took my good friends life.

Dear Body, please release me from the prison that is you, let me get on with achieving my hopes and dreams, let me walk and dance, oh and if that's not too much to ask, please take away the epic zit.

Yours faithfully,

Vikki

Very severe M.E, seeing an invisible illness is believing

ME (Myalgic encephalomyelitis or Myalgic encephalopathy, mistakenly called chronic fatigue syndrome (Cfs)) is a neurological condition that is poorly understood by the medical profession and the general public. It can vary from people who work full time to those who are bedridden for decades, sometimes it is fatal.

As some of you know I have Severe ME, it has varied over the years as to quite how severe, from being able to go downstairs (on a stairlift) and lay on the sofa for an hour to completely paralysed. People only ever see me on that good moment on the sofa as very severe ME is invisible.

 Many people don't realise how severe ME can be due to people being stuck in bed unable to be part of the outside world. It's an invisible condition on the whole but one brave friend has spent months putting this together to show some of what she goes through.

Please please take a moment to look, reflect on what it must be like for that to of been your life for over a decade (the person is still classed as 'young') and then share it with friends. She rarely has a voice but you can give her one by sharing this.

 Visible ME #1: an actual pic of my room when the lights are out. I live in total darkness.

Visible ME #2: my room with lights on for carers; a soft red glow (less red than in pic).

Visible ME #3: Smartphone: Window on world; saves energy; aids communication.

Visible ME #4: some of my cooling equipment for hot flushes and sweats.

Visible ME #5: all sound is very painful and exhausting. I need earplugs 24-7.

Visible ME #6: Draught excluder. Can't bear even a crack of light.

Visible ME #7: red and amber bulbs; cannot tolerate any bright light.

Visible ME #8: too poorly to use mug, everything is administered by syringe

Visible ME #9: Even dim light very painful and exhausting. Need eye protection at all times.

Visible ME #10: I use pads due to double urge-incontinence and being too poorly to use a bedpan.

Visible ME #11: Tube-fed as too much pain and exhaustion to eat and drink.

Visible ME #12: vital advice, support and awareness, which is hard to come by

Visible ME #13: bed cradle to keep the duvet off my bent feet and prevent further damage.

Visible ME #14: Smell and chemical sensitivity makes me very ill and severely limits me

Visible ME #15: ME causes many types of constant, severe pain all over the body.

Visible ME #16: soft, loose clothing, bedding etc, due to pain, discomfort, touch-sensitivity

Visible ME #17: daily cocktails of drugs, though doctors are uneducated about appropriate symptom-relief

Visible ME #18: profile bed required to assist carers due to my severe lack of mobility

Visible ME #20: baby spoons required for very occasional oral feeding as they they are small

Visible ME #21: weakened body and immune-system means more susceptible to infections

Visible ME #22: all products have to be completely non-scented (inc no chemical smell). They are hard to find!

Visible ME #23: communication is so difficult. Special aides are needed for when I can't speak at all

Visible ME #24: Nausea and vomiting can be a big part of everyday life with ME

If you would like to leave a message for my friend who did this then please leave a comment and I will pass it on.

Seeing Father Christmas

Every year Father Christmas comes down our road to raise money for local causes. I have always loved this and as a child thought he was the only real Father Christmas. Quite why the real Father Christmas sits in a trailer being pulled by a car with a wooden reindeer I don't know but I did think that!

Even as an adult I love seeing it and every year I watch from my bedroom window. Every year one of the helpers shines his torch up to my window knowing I will be there. Last year I had had a big relapse and it was a huge struggle to get me the one meter from my bed to the window to see out. This year however for the first time in 12 or 13 years I went out to him!! I was probably the oldest 'child' he saw that night but it was fantastic and got me in the Christmas spirit!

 Waiting
With the man himself (who gave me a sweet!)

Going for gold

Going for gold

I've not been in a shop for a long time but I bet if I went into Asda this week there would be all sorts of items from PJ's to cakes, emblazoned with pink ribbons for breast cancer research.

I think the awareness, the fundraising and gradual removing of the stigma is a great thing but I bet as you look around Asda you will struggle to see gold.

October is pink - breast cancer research, a great cause.
September is (or should be) gold -childhood cancer research, also a great cause

I bet you wouldn't see many gold things and yet there needs to be more awareness so cases can be spotted quickly, in many cases childhood cancer isn't diagnosed until its stage 4 (the worst) as symptoms were written off as a 'virus', 'constipation' or 'problems at school'.

Here's a few gold facts for you
-1700 children in the Uk will be diagnosed with cancer in 2013
-3 in every 10 will die
-those who survive face a life time of difficulties, risk of relapse and risk of developing secondary cancers caused by treatment
-Some childhood cancer diagnoses carry a 0% chance of survival
-Many of these children will go through years of treatment and still die.

Lastly but not least, less than 2% of funding given to Cancer Research is given to research childhood cancers.

No one thinks it will happen to them, none of the hundreds of families I've known expected to become an 'oncology parent' until it happened.

So I'm turning my nails GOLD, not just for those who have fought the big battle and won or who fought and passed away but I'm going gold for those 1700 UK children diagnosed this year and the 1700 diagnosed the year later.

Are you child cancer aware?

A beautiful small world- open letter

I'm still in hospital and made some bunting both for myself and for another patient. We are all in our own rooms and isolated from our 'neighbours'. Until now we have been able to decorate our rooms however we like, for many long term patients it means sticking things on the wall with blutac or hanging a picture of their choice on the wall. For me, I peg cards people kindly send me onto my curtains. It brings comfort and is something nice to look at.

My friend Jessica is being admitted, Jessica spent a long time in here (years) and had the most amazing room with a HUGE Johnny Depp, paintings which she did herself and lots of stars going up a wall. Stars are her thing of comfort, they give her hope and strength. I got some star lights and a little chain with stars on (meant for a Christmas tree). She was going to arrive to a room with stars but that has been banned, instead she will be admitted to a clinical looking room.

I sometimes write letters or things to people as a form of therapy, I won't send it and the last thing I need is to get an argumentative or difficult reputation over a few triangles of paper so instead I will just leave it as an open letter, never to be seen by those involved but off my chest!

What have you seen today?

You woke up in your bedroom, bleary eyed until things came into focus. You probably walked to the kitchen, the bathroom and passed through other rooms, you opened the curtains and saw today it is cloudy, there's a slight mist and the grass is damp, a bird flies past the window as your looking out. Maybe you see your loved ones and pets.

You rush off to work, getting in your car and traveling a distance, there are other motorists, you pass houses and shops, pedestrians- the old man walking his dog and the young child off to school, you drive past trees, grass, big buildings, flowers and cafes.

Once at work you greet colleagues, grab paperwork, take the stairs or lift and start your working day, after your shift you do all that you did in the morning but in reverse.

What have I seen today?

Today is a good day as a result I have seen 8 walls, that's 4 more than I have seen in the past and indeed 4 more than many of other ill people get to see. I have a window but can't look out, is the sky blue today or is it cloudy? Are flowers in bloom or have the leaves on the trees started to turn to shades of amber? I simply don't know. My phone vibrates, a text from my loved ones, we try to have a conversation but give up as the signal is too poor. I'm greeted by staff who are dear to me but I don't see my parents. I wheel into the bathroom, a different 4 walls which is nice but no hint of the outside world, I still don't know what colour the sky is today. Back in bed I lay on my right side, even in the dim light I can make out the butterfly pattern on my wall, butterflies are my sign of hope, at home I have them dotted all around my room. I dream of the day I break out of my chrysalis. It's tiring keeping my eyes open so I spend most of the time with them closed, still facing the wall I know the picture is like the stars, 'they are there even when you can't see them'. In the afternoon I lay on my other side, from here I can see the cards on my wall, a connection to the outside world, a connection to friends. I look at the picture a little boy drew me and smile while remembering the great day I once spent with him. I look at a card from my best friend and think of her, hopefully we will manage to talk in the next couple of days. Next I see a card from Tori, its a picture she has taken, I think of all those years she spent bedbound and completely paralysed,  I love how she is now able to take pictures outside of the house. Again I close my eyes.

Later symptoms hit me really hard, it feels unbearable to be inside my own body, I lock my eyes on a hanging shimmery star and focus hard, willing my mind to escape reality and it helps a bit.

The world is a beautiful place, for those of us though who can't be out there we have to live in the world of one room and try our best to make this small confining world a beautiful place we are happy to be in.

The Balloon Fairy

I love balloons, they can mean celebration, happiness, get well or good luck wishes, congratulations, sad goodbyes and even 'just because'.

I had some helium left over recently and so today we blew up some balloons. My original plan was to do some and have Mum tie them to the front door of a neighbour (who has the same illness as me) with a note just saying they were from the balloon fairy. I realised it was her 18th birthday this week though so blew up lots of balloons which mum took up with a card. This isn't the first time there has been a balloon fairy. A few years back when I was doing better, I managed to go to a dinner organised by the local paper and they presented organisations/charities with a donation. As soon as I entered the room I clocked the heart balloon bouquets and thought of how they could make kids smile. I was able to ask an official if it would be possible to take some home to give to some local children, they said they would find out for me. So we have dinner, then the cheques are presented and everyone was moved so I could join the others for a photo at the front of the room. After it had been taken they announced that children's charities can take the balloons and to my horror they all seemed to instantly vanish before me (all the other charity people could walk!) and there was chaos trying to move me an inch forward. I told my dad 'forget me, the balloooons, the balloooons' (seriously, anyone would think they had bunches of winning lottery tickets rather than some heart shaped balloons), some kind guy over heard me and snagged me quite a few. Everyone who was with me pointed out we could never get that many balloons in our car and I informed them that they should be positive and when there is a will there is a way (I'm not sure if positivity effects the laws of physics but hey it's worth a try). My dad had recently got a new car which didn't have a boot the size of his old one (which got mentioned every time the boot was used) and my wheelchair alone filled it. That left 4 of us and about 18 balloons, we had them crammed into every nook and cranny, I even had my leg over some so they wouldn't obstruct Dads view, thank god it was dark! We concluded that if we were in an accident we would be fine due to this very large air cushion surrounding us but when rescued we would be all squeaky as its helium! My insanity paid off though, the next day balloons were delivered to a boy who had recently seen his sister die and a family where a mixture of illness and disability led the family to crisis point, they got home to find their porch filled with balloons from seemingly no where (although they guessed it was us). The kids apparently loved it and decided it was the balloon fairy!

Voices From The Shadows

Voices from the shadows.

~~~If you would like to help you can simply by watching a film or donating a £6 DVD to my campaign~~~

  "You've got the words to change a nation But you're biting your tongue You've spent a life time stuck in silence Afraid you'll say something wrong If no one ever hears it how we gonna learn your song?"
I want to shout, I want people to listen, most of all I want to get the world watching "Voices from the shadows". I have severe M.E, this means I spend every day and night curled up in bed, in total darkness and often in total silence too. Do you know an 11 year old child? Think of every moment in their life, their first steps, first day at school, moving to secondary school, being made to tidy their room, going out to play, eating dinner every night. Every single day of their life I have spent curled up in bed. We could count how many days in the past 11 years that I've not spent the majority, if not all, the day and night in bed. Every day for 11 years. It's crap, pure and simply, M.E is crap. It can be mild enough that people can work, it can be severe enough that people are totally paralysed (I can't explain what it's like to not be able to even wiggle a finger), but do you know the worst thing? It's people's attitudes to the condition. From doctors, nurses, friends, media, some families (thankfully not mine), constant stupid comments, constant judgement and stress. I won't even begin to go into problems I have had with doctors who don't understand both in the past and even this week, if you haven't experienced it, it is quite unbelievable! Some attitudes are changing but only due to people campaigning. However how do you get your voice heard when you can't even whisper 'hello' to your carer?

The documentary 'Voices from the shadows' deals with that, 5 families telling their story, some top experts giving short descriptions and facts (did you know M.E is Neurological and has been classed so by the World Health Organisation since 1969 yet many doctors think its a mental health problem?). As soon as I watched it I wanted the world to see it but didn't feel able to ask people. The documentary finishes with the words 'but for some patients time is running out'. My friend Emily is in it, after it was made, time did run out. Emily died. Yes M.E, often combined with lack of medical care KILLS. Emily's death spurred me onto a mission to get people watching the DVD. I was in hospital at the time, thankfully a very rare place that mostly understands M.E but some of the staff said they would like to see it. I leant the DVD to a nurse in the afternoon, by her lunch time shift the next day she had watched it twice, ordered books on M.E and said she is questioning everything she has ever heard the condition. Apparently she had had very little experience of M.E and the first patient with it was a negative experience but after watching the DVD she wants to help people with M.E. She wasn't alone, journalist Sonia Poulton was a disbeliever, until she saw Voices from the Shadows and is now campaigning, read her fantastic reaction here So what can you do to help?

There's a few ways, firstly by watching it (either purchase the DVD, attend the screenings or watch online at www.mubi.com) and secondly if you would like to support my campaign then I would really appreciate it if anyone would be willing to donate a DVD to me please. I have purchased lots but given them all away, hopefully they are still circulating helping raise awareness. They are only £6, and can be purchased here My address is Vikki, C/O Post Pals, POBOX 278, Leatherhead, Surrey, KT234WN Thank you for reading, if we can change just 1 persons attitude then the world will be a better place for those with the condition.

"Read All About It" You've got the words to change a nation 
But you're biting your tongue 
You've spent a life time stuck in silence 
Afraid you'll say something wrong 
If no one ever hears it how we gonna learn your song? 
 So come on, come on Come on, come on 

You've got a heart as loud as lions
 So why let your voice be tamed?
 Maybe we're a little different 
There's no need to be ashamed 
You've got the light to fight the shadows 
So stop hiding it away 
Come on, come on 

 I wanna sing, I wanna shout 
I wanna scream 'til the words dry out 
So put it in all of the papers, I'm not afraid 
They can read all about it Read all about it, 

 At night we're waking up the neighbours 
While we sing away the blues 
Making sure that we remember, 
yeah Cause we all matter too 
If the truth has been forbidden 
Then we're breaking all the rules 
 So come on, come on Come on, come on, 

Let's get the TV and the radio 
To play our tune again 
It's 'bout time we got some airplay of our version of events 
There's no need to be afraid I will sing with you my friend 
Come on, Come on"