Open Letter about Malcolm Sargent House

Dear Supporter, Campaigner and potential supporters,

I’ve decided to write this open letter to explain my thoughts and feelings towards the news of the proposed closure of Malcolm Sargent House. I’m doing it because I get it, I see it from both sides and because I feel currently my voice isn’t being heard with you. I’m sorry it’s so long but it seems you’ve all had lots to say too.

As a young person at the age of 20 I was diagnosed with Very Sever Aplastic Anaemia which meant I had to endure high dose chemotherapy, a bone marrow transplant, months of isolation, and many many long lasting complications. I have been to Malcom Sargent House a few times and I have a lot of fond memories there, including the last time I saw two of my cancer friends Carly and Freya. I had many laughs, shared many tears but I have long lasting memories from there. Yes, I will be sad to see it go like anyone else, I see the benefit of it, but I also see the bigger picture which is what I’d like to share with you.

I’m very lucky to be alive as I was extremely unwell by the time I was diagnosed but I’m even luckier to say I had the support of CLIC Sargent. Currently CLIC Sargent can only support 2 out of 3 children and young people who are diagnosed with cancer. This is not fair to them or to me, why should I feel guilty because I got something they didn’t? Why do they have to go through this hell like slog without any support? Well currently it’s because there isn’t enough money to fund extra social workers, community workers, play specialists and community nurses. There aren’t enough Homes from Homes or enough money to give every single person diagnosed with cancer under the age of 24 the grant they so desperately need.

For me personally my social worker saved and gave me a life, at diagnosis I thought my life was over! I’d been told I had months of isolation ahead of me, needed at least a year off from university, and possibly had years of recovery ahead with no end in sight. I lost my independence, my confidence and my financial stability thanks to not being a student for a year. The time I first met my amazing social worker I was at rock bottom. She came into my room and all I wanted was for her to get out, but she respected me, my space and my feelings whilst also letting me know she was there to help.

When I eventually let her sit down with me she really helped! She tied up loose ends with uni and student finance. I got a grant from CLIC Sargent and the benefit advice I needed. She also helped me come to terms with my illness, the treatment, the loss of university and Camp America (I was about to leave for). She spent hours and hours sharing my prison cell that is the transplant ward, chatting to me about anything and everything just to get me through the day. She helped me prepare for the big wide world outside that door, visited me in follow up, helped me settle back into my uni house. She took me out for coffee so I didn’t feel trapped at home, listened to my hopes, dreams and fears, and helped me plan for my new future. She helped me return to uni, and helped me realise going part time was ok. She helped me get through some very difficult mental health patches, making sure I had the right support in place at all times. Told me about the holiday opportunities like at Malcom Sargent House. Enabled me to help push CLIC Sargent’s direction by sharing my views and opinions with the participation team. She helped me stick with university through the good the bad and the ugly. She is so important to me that she was the first person I rang when I got my degree results. She’d pick me up, dust me off and push me when I needed it. She is my shoulder to cry on, my friend, my second mum, my rock, my guru, my social worker. I couldn’t imagine my life without her, I certainly wouldn’t be where I am or who I am today without her.

It makes me really sad to know that some people out don’t have this and they are really struggling, not able to have that friendly ear, to have someone to talk about the dark stuff with and with support to thrive after cancer. CLIC Sargent social workers also are there to listen and support those who unfortunately won’t survive too they help them plan, and have control but also help the families grieve. I know people that haven’t been lucky enough to have the support of CLIC Sargent at this time, I’ve seen how difficult that is and that’s not ok.

I have read some of the comments on Facebook and on the petition that some people aren’t as lucky as me, services have been stretched to thinly or worse still there isn’t the help there for that child, young person and their families. I’ve read and know personally about the massive benefit of being able to go to MSH but these people (myself included) we able to go because we had CLIC Sargent support in the first place.

I’ve read comments about Dara our wonderful director of services, the trustees and the other directors not having a heart, apparently earning too much, not thinking about the impact of MSH has and questioning if Dara had ever visited MSH. I can tell you from my own experience yes she has. She saw my tears, heard my laughs (some would say cackles), and listened to my experiences along with those of many others. She did this to help shape and improve services in the future. This decision regarding MSH is not one that has been taken lightly, thoughtlessly (the directors and trustees have memories there too) or without serious consideration of the options. Unfortunately something has to give so the charity can survive and thrive in the next 10 years. In terms of the directors earnings their pay reflects their job as is the with any charity. If I could and the charity had the money- I’d give every single member of the CLIC Sargent staff a raise. If these highly capable people were working in the business world and not the charity sector they would be getting ten times more money, for way less effort. So please don’t question this I don’t want them to leave for a business job! CLIC Sargent are a charity that cares, a charity that listens and a charity that’s in it for the long haul, it’s a charity with heart, soul and passion from the casual volunteer bucket shaker all the way through right up to the top.

CLIC Sargent’s 10-year strategy Aiming High which consulted the views of children and young people throughout its development. Ambitiously want to support all children and young people under the age of 24. To do this the charity has to grow, and find those children and young people that are currently missing out. Find where services are stretched and not working effectively and push them to be the best they can be. BUT and it’s a huge BUT to do this the charity needs to be in a position where it is fanatically stable with the resources to be able to grow. This is tough, in a time when charities across the UK are struggling more and more to raise the funds whilst also trying to keep the costs of running the charity down. With bad press about charities, financial uncertainty in the world’s economy and the competition for charity support- it’s tough. There are new legislations coming in all the time making it difficult for charities to contact supporters in the ways they use to, people’s attitudes to fundraising are different and less secure so the charity sector has to be creative and at times make really tough calls.

If the charity had more committed direct debit supporters, more charity partners and more fundraisers then this tough decision about MSH wouldn’t be on the cards right now, but the charity needs to be create financial stability now so it can grow effectively in the future. Every single person who has signed the petition to save the house, has an opinion about this decision, or is currently reading this could do more! It could be that you’re already a committed giver and for that I thank you immensely, but have you talked to a friend who might consider supporting the charity to help keep vital services afloat? Are you someone that could dig a little deeper and increase your support or start a direct debit or taking on a new challenge. Do you work for a company that could help CLIC Sargent? Why not contact corporate@clicsargent.org.uk and start that conversation? If everyone was able to support the charity that little bit more and that little bit sooner this decision wouldn’t have been on the cards at all. But they need you NOW more than ever to stop them to have to make difficult decisions like this again.

In truth MSH costs the charity £500,000 per year (this does not include the money needed to make repairs, or the costs of the flights/ transport to get the families to MSH). This doesn’t matter if the house is full to busting or only having 3 families there the costs are the same and those cost are going to keep rising. Yes, it’s a safe haven, it’s a rest bite holiday, it’s an amazing place and yes, I’ll be sad to see it go. However, it’s also part of something much much bigger. It’s part of a charity that cares about the children and young people it sets out to support. MSH can only cater for the 5% of people the charity currently supports and there are 1 in 3 across the whole of the UK that currently are getting no support at all. Which is better supporting everyone- or supporting that 5% so well that the 1 in 3 will always remain without any help and support?

The charity is struggling so tough and very difficult decisions have to be made. They are already making cuts wherever they can, restructuring departments so they can be as efficient and cost effective as possible, but people don’t see this. People see the staffing costs growing without looking at the number supported growing too. They look at the money raised and think it’s all spent on lavish company cars and holidays abroad (no they are a charity- a fundraising organisation not millionaires!). This money raised is actually, it’s spent on people like me, people like my friends that are no longer here, and 10 children and young people that will be diagnosed with cancer TODAY!

On Friday I attended a meeting where Dara de Burca and Kate Lee (director of services and CEO) listened, acknowledged and cared about the thoughts and opinions of the Young People’s Reference Group (Designed to help the charity listen to the views of its service users there is also a children’s version). They answered our questions about why they were making the call, and what would happen to the services offered there currently (social workers will refer patients and their families to other charities that offer holidays, and bereavement work will be looked at with the best way to continue this whether that be locally or in some other way.) They explained the reasoning behind this decision that money is tight and they need to be able to protect services that are key and accessible by as many children, young people and their families as possible. We all were able to see the bigger picture, that the charity needs to be financially stable to continue to offer those vital services. To get into in a position in the future to be able grow and reach that 1 out of 3 CLIC Sargent currently can’t.

Finally, I’d like to thank you for reading this letter, I’d like to thank those who have put in the hours and hours of thought to get to this difficult decision. I’d like to say to all those who have shared a memory of MSH thank you it shows that CLIC Sargent were there for you. To those that are angry about this decision I hope that you are now able to see the bigger picture. Ask the question which would your children rather seeing someone struggling and not able to have any help and support or going on a few days’ break? If you haven’t had CLIC Sargent support or had a bad experience tell them about it, they are a charity that want to help more and wants to continue to improve the services offered.

They need you, all of you.

How can YOU help CLIC Sargent now??

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