What's your favourite thing about Christmas? With markets galore, Christmas carol singing, parties and quality time with friends and family Christmas really can be 'the most wonderful time of the year'.
But what about when it isn't? I think back to a cold October day when I was 14 and all of a sudden I was on my way to a psychiatric hospital. One day I was marching on with a classic teenager's routine: up, dressed, breakfast, school, home, dinner, bed. All the while avoiding spending as much time as possible with my parents of course. Not yesterday though. Yesterday I had made a serious attempt on my life. I tried, it failed and I was in such a place that I didn't see how it would be a big deal. I only mentioned it in passing to my psychiatric nurse. It didn't occur to me that it would set in motion a long and difficult hospital admission, unfortunately one in many.
Anyway, it was October and the clocks had just gone back. I was now an inpatient on a child and adolescent unit. A psychiatric ward is a strange bubble. It's very clinical, there are endless locks on locks and every wall has an emergency alarm. There are regimental meals, meetings with doctors, medication and bedtime at 10pm sharp. There were 12 beds: 12 children and young people with 12 different stories. 12 different sets of symptoms. It was a strange place.
Halloween came and went and the world shifted its gaze towards Christmas. After fireworks night the countdown started rolling on in earnest. But this was a psychiatric ward, so far removed from the rest of the world. While our friends and families were out and about enjoying the build up we were stuck inside. Some of the children and young people had some leave from the ward; perhaps they could go out with friends and family. Others had no leave at all. Some were legally detained in hospital - this is known as being sectioned.
As Christmas drew closer the TV always reminded us of it. The adverts endlessly snowing and a smiling Father Christmas on the back of a lorry. There were so many things that didn't occur to me about Christmas on the ward. We couldn't have any tinsel as it was a 'high risk' item - the same with lights. All our games were fairly old and outdated and we played them to death. There are only limited times you can play operation and, in my case, only limited times I could lose spectacularly.
As the day gets closer and closer other things change. CAMHS (child and adolescent mental health services) wards all have some sort of provision for education to try and keep people in touch with their schoolwork. These had lessons everyday and got us off the main ward. There can also be groups such as art and music therapy, yoga and psychology. These groups make a real difference. They break up the day and provide a good distraction, spending some time thinking about something other than mental illness. But then Christmas is on the horizon and the education and groups stop for the holidays. You go from having some variation and things to focus on to long dark days stretching in front of you with what feels like constant reminders of all the fun things you're not doing. It's really hard.
And then wham: the day itself. Some patients may have a little bit of leave for the day and, if they're really lucky, may have had the night before too. But most of us were on the ward. Waking up on the ward felt extremely hard. Father Christmas hadn't visited us and the tired plastic tree felt more depressing than it would have been to just not have a tree at all.
The staff really made an effort to lift our spirits with Christmas music and jumpers. I remember a nurse grabbing my hands and whirling me down the corridor laughing with music blasting out from a massive speaker. I couldn’t help but smile and join in! The staff tried their hardest with the little resources they had, and it was massively appreciated. It’s what made it bearable and we all managed a smile and a laugh. We even got a card and some chocolate coins from the consultant - very snazzy! The nurses sat us all down and gave us our present from the ward and there was a cooked breakfast being served.
Even with this, we could all feel lonely and forgotten. Being a child or young person in hospital can feel like the whole world forgets about you. There's so much stigma around mental illness that even those who do know you're there can often have negative or stereotypical views of what you and the hospital look like (think padded cells, straitjackets etc). These negative stereotypes of wards and patients were very different to my experiences on the ward. We all got along with each other as best we could and there was sense of camaraderie. Despite our different experiences and what we were going through, we pulled together with the staff to try and have a good day. The little bubble we were in was trying to have a good time, but the outside world seemed a long way away.
These were my experiences of being a young person on a hospital ward. That loneliness is what Deck the Wards hopes to fill at least in part.
Deck the Wards came into fruition in the hope of reaching out to CAMHS wards and the children and young people in them to help bring some of the joys of the season to them. We work with wards to compile lists of things that would improve the holidays on the ward. This can range from boardgames to badminton sets, basketballs to karaoke machines and musical instruments. We ask that the lists are made by the service users themselves as we want them central to decision-making, meaning we're getting things they actually want. We can't make it all go away or find a cure to offer, but what we hope to do is make those difficult days and weeks a little bit better.
Deck the Wards is growing year on year and we are reaching out to more and more wards. We are proud to support more and more children and young people as time goes on and we hope we will be able to support even more this Christmas. Every share and like to spread the word makes a difference. We want the children and young people we work with to know that they are not forgotten, and that the holidays can be a bit more special and a bit more manageable, even on the ward. I can genuinely say that everything people offer to support us makes a real, tangible difference to children and young people. We are so grateful to the many generous supporters who have helped us Deck the Wards this Christmas.
In the run-up to Christmas, we've been thinking about what Christmas can be like for some young people who will spend it in psychiatric hospital.
Daisy spent the festive period on a CAMHS ward as a teenager. She describes the time as one of mixed emotion, and different from the Christmases many other teenagers experienced.
"I often think back to that time. I can still feel the fabric of the sofas in the lounge. I can still smell the damp cloth used to wipe the dining room table. I can hear the buzzer and the entry phone. I can even see the crumbs left from biscuits in the afternoon.
Christmas on the ward meant tatty tinsel pulled out of a beaten up box and the odd card from an ex-patient, safely stuck on an otherwise bare notice board.
The staff did try - old Christmas colouring books with pages missing would be spread across a table. A box of waxy crayons in the middle to share. Underneath our ill exterior, we were all grateful for their efforts but we all felt little motivation to celebrate. Stuck inside, days dragged and Christmas always approached with a heavy weight attached to it. So many emotions, so many fears. Dread and trepidation often littered a snowy sky.
Through the darkness however, we tried to see the light in each other. We used the blank backs of the colouring book pages to draw our own festive scenes. We made them into cards and posted them under each other’s bedroom doors at night. We drew all over the walls of the lounge area and graffitied our names on the backs of the wardrobes. We supported each other and created life long memories. It wasn’t Christmas as most people knew it, but it was ours and always will be."
The feelings of dread, trepidation and isolation are feelings often shared by those experiencing a mental health crisis. This can be especially difficult for those who need treatment in hospital, and even harder when that treatment takes place over Christmas.
At Deck the Wards we hear countless stories of the ways in which young people and members of hospital staff find light in the dark. So many of these stories involve coming together over something shared, like festive scenes in the backs of colouring book pages.
We know that presents at Christmas can't heal everything. But we also know that the crafts, games, books, musical instruments and more that we provide can help create those shared moments Daisy describes. They make it a little easier to find the light.
In the run-up to Christmas, we'll be thinking about all those who will be spending time on psychiatric wards. We extend our love and thoughts to all those staying in hospital, and we wish them all the best in their recovery. We express our thanks to the members of staff we work with who look after the young people in their care, and work tirelessly to bring everyone together over a game or an art project. We also hope all those temporarily separated from their loved ones are able to share precious moments together in person again as soon possible.
Last but not least, we want to thank everyone who supports us to reach as many wards as possible each year. We're extremely grateful for all the donations, social media support and to everyone who gifts us their time, energies and organisational skills. Because of you, we can provide the little things that make Christmas a little lighter.
Mental Health Awareness Week, hosted by the Mental Health Foundation, is an annual opportunity for the UK to come together and focus on mental health.
At Deck the Wards we understand that the week can sometimes prompt different opinions and responses amongst the people we work with directly, or alongside. We’d like to take a minute to explain what the initiative means to us and why ‘raising awareness’ still has an important place in our work.
Whilst the general awareness of mental illness and mental ill-health is thankfully getting better, we find that this does not always include the experiences of children and young people in psychiatric hospitals. We still hear from many who were unaware that children or young people might experience mental ill-health, or that it might be serious enough to require a hospital admission. This means that, in contrast with physical health hospitals, children and young people staying in psychiatric hospitals are still often forgotten about.
Even where child and adolescent psychiatric hospitals are discussed, the picture we see in the media and press can be stigmatising, sensationalist or inaccurate. The stories of what it’s really like to be in hospital are still not being told as often or as accurately as we would like.
On top of all that, this year’s Mental Health Awareness Week has come at a strange time: the middle of the Coronavirus outbreak. Whilst we are all feeling the effects of uncertainty, boredom, isolation and concern, children and young people in hospital will be adapting to changes to their usual routines or protective measures such as limits to the time they can spend outside of the ward or suspended visits from family and loved ones. Although necessary to keep them safe, these measures may increase the loneliness, boredom, frustration and distress that can come with spending time on a psychiatric ward. Family members and staff have also felt the impact of these additional challenges.
This is where awareness still has a part to play. We will be spending the next week doing our part to share stories of what it is like to be staying in a child and adolescent psychiatric hospital during the outbreak: the good, the bad and the mundane. We will also be shining a light on how their families, loved ones and members of hospital staff are responding to these challenging circumstances.
The collective focus on kindness, the theme of this year’s Mental Health Awareness Week, is also more important than ever.
Since the outbreak began we have seen the mental health community coming together to support one another in new ways; family members adapting to support their loved ones from afar and hospital staff working hard to keep children and young people safe. Key to all this is kindness. We therefore want to lend our support and admiration to the people we work with, and to shine a light on all those important acts of kindness.
A stay in psychiatric hospital can be scary and lonely, but it is our experience and belief that awareness and kindness can and does make a difficult time that little bit easier.
What we’ve been up to
Incredibly it’s been an entire year since we started Deck the Wards and what a year it has been. We started the charity last Christmas with the aim of helping one ward and with a target of £300. We ended up smashing our target and raising nearly £1500 and helping 4 wards.
We’ve held a bake sale with delicious homemade soup, sandwiches and cakes. We had an Easter Egg drive at the HCPC which supported us to deliver an Easter Egg to every single child and young person. King’s College London Women’s Rugby team chose us as their varsity charity and raised nearly £250 for us at Easter. Finally we held a charity quiz night in June which was attended by a whopping 90 people and raised around £1600 for us.
It’s fair to say it’s been a real journey and we’re grateful for everyone who has put in the time and effort to make all of this possible. Roll on 2019/2020!
Reflecting on our first year
To celebrate our first birthday we’ve asked each of our trustees three questions about their experiences over the year.
Firstly, what was your highlight of the first year with Deck the Wards?
Katie (Co-Founder and trustee): For me it has to be wrapping and packing the Christmas boxes and seeing just how much we’d been able to get for the wards. We were so grateful to have such successful fundraising and it enabled us to get everything each ward had asked for and to provide a special Christmas box with crackers, chocolate coins and a voucher for a Christmas party. Getting to see the results of everyone’s hard work and generosity was really special.
Jaz (Co-Founder and trustee): There’s a lot to choose from, but a particular memory from the Spring school holidays stands out.
We wanted to make sure that the Spring boxes were inclusive for every single child and young person so we put together boxes of vegan and gluten free chocolate (kindly donated by Ombar) notepads and craft items, baking equipment and more.
When we dropped these off at the wards the staff told us that these boxes would be inclusive for young people celebrating Easter who would want chocolate, young people receiving treatment for eating disorders who might not want to receive food at all and others who might not celebrate Easter for cultural or religious reasons. It felt great to know that everyone was included.
Hermione (Chair of trustees): Our quiz night has to be up there as one of my highlights of our first year. The support from our wonderful volunteers to get it all together and the total amount of money raised was just phenomenal! And what a fun night it was too. Seeing how well attended it was and how generously businesses donated towards it, tells me DTW's message is resonating with people.
Secondly, what’s your favourite thing about Deck the Wards?
Katie: I’m particularly proud that Deck the Wards was founded from a place of ‘lived experience’. Two of the trustees have spent time in adolescent inpatient care and these experiences have been a real driving force behind everything we’ve done and continue to inform our path. One thing we make sure of is that we contact and work with every ward to make sure the young people are integral in putting together the lists for us. This makes sure that we are giving them what they actually want and need, rather than what we think they want and need.
Jaz: It’s definitely knowing that the things we donate will brighten up the wards for years to come!
The things the wards ask for are generally items like games, DVDs and musical instruments. They’re things that children and young people can enjoy together during their time in hospital, but that last for years. For me that’s really important.
Hermione: I like how DTW works in partnership with the wards to put together the boxes. At DTW HQ we always get very excited after receiving the wish lists from each ward. They are always so different from each other, highlighting just how important co-production is. When we get to hear how things in the boxes are being used and the difference it makes to the young people on the wards, it spurs us on to keep going and to make the next holiday even better than the last.
And finally, what are you most looking forward to next year?
Katie: I can’t wait to hear from the wards about what would help them this Christmas and over the next year. It’s so exciting getting those lists knowing that they come directly from the young people on the wards. It’s exciting to see where this year will take us and I can’t wait for Christmas!
Jaz: Last year The Greatest Showman had just come out and all the wards asked for a copy for their young people to watch together on the wards. We played those songs on repeat whilst we packed the boxes and drove them to the wards!
I’m looking forward to finding out what would help the wards this year!
Hermione: I think next year is going to be a big (and busy!) year for us. We’re all brimming with ideas about what we want to do and achieve. This first year has been such a learning curve. I look forward to building on what we’ve learnt, strengthening the connections we’ve made and forging new ones, in order to be able to expand our reach.
Armed with Jaz and Katie’s amazingly organised shopping plan, and having rounded up a merry band of volunteers to help carry goodies, we prepared ourselves for the mayhem of Oxford Street 2 weeks before Christmas! This was a momentous occasion; our first shopping trip for the charity.
A couple of years ago I found myself up to my eyeballs in chocolate selection boxes, mince pies and brand new toys and games. I was opening up the latest generous delivery to my work – a place for families and loved ones of Children and Young People with cancer to stay while their loved one received treatment. It was a really special and touching moment and it had a real impact on the families staying with us.