EU vote, Jo Cox and Protecting the NHS

Hello all,

I’ve decided to write down my thoughts and opinions on the EU Vote. As I feel passionately about it and want to let others know why I will be voting Remain. I get that everyone has a the right to their own opinion and all I’m asking and hoping for is that which ever way you vote, you all use your right to vote but also make an informed choice- and know what you are voting for and against. But firstly I’d like to explain one of the reasons that I was prompted to write about the subject. The tragic death of MP Jo Cox.

I grew up in a very political family my mam was a local councillor and sat on the planning committee for the local area for a number of years. My grandad was a councillor and also Major of Newport. I grew up delivering leaflets, campaigning for people to vote, visiting many Politian’s houses and I even did my year 11 work experience week with my local MP and helped out at MP surgeries. My sister was an assistant to many MP’s and an MEP, and even stood for election as an AM at one point. So when I heard that an MP had been shot from my BBC News alert I immediately turned on the news, I hoped they had got it wrong but learning they hadn’t- my heart sank.

I thought about all the MPs I know, their families and their team who help them campaign and run their offices. I thought about Jo’s family, her friends and her political family and I prayed for them all, I prayed that by some miracle that Jo would pull through.

On twitter I read the outpouring of support from thousands of people but also read one twisted post who I have no idea who it came from nor do I wish to- about how the Remain campaign would use this to their advantage if she died… I read a lot of backlash for this post and was about to post to get it taken down when I read that my prayers had not been answered that they were too late and Jo had sadly passed away. The post I believe has been removed, regardless of sides on the EU Referendum this is a tragic loss to all, it’s a loss to our government our country, humanity and the world. But love will always be stronger than hate.

As the tears began to stream down my face- I continued to read more about what a wonderful woman she was and the incredible work she has done for our world. My tears were not because I knew her but because I could relate to her, I know many whom that could have been and she cared a huge deal about the charity sector just like me. I feel her loss as do many across this nation.

I hear about how her assistant was with her holding her until the ambulance arrived and think that could have been my sister, someone who has a passion for politics and cares about the future of so many. I think about how Jo woke up that morning excited to meet with her constituents to solve their problems, to listen so she could advocate better for them whilst in parliament. This is what a good MP does, listens to views from all sides and then makes a balanced decision to help their constituents and our nation to be fair and strong in the future. MP’s are people just like you and me, they believe in a better future, they believe in humanity and they believe in democracy, just like you and me.

I’m deeply saddened by these events but immensely proud of how her husband Brendan has spoken out for people to unite against the hatred that killed her and that he wants to continue her work. I agree whole heartedly with Jo Cox’s opening speech at parliament ‘We have far more in common than that divides us.’

My views on the EU vote have also been prompted by a call by Lucy Caldicott (see link) for more charities to join in the debate and share their views and opinions. Now many have chosen to remain silent and I get it- deciding one way or another can be hard enough for one person to do- a charity as a whole even tougher. Plus it risks the support of supporters too who are voting opposing. I’m just hoping that for those who remain silent don’t regret this on Friday morning- this also goes for all those who aren’t sharing their views currently there is still a lot of undecided people out there- sharing your thoughts may help them make up their mind too.

So why am I voting Remain?? Well mainly because my opinion is that we are stronger in the EU than we ever will be out of it. I was diagnosed with a very serious illness in 2010 just 7 weeks before I was due out in the states for 3 months, that 7 weeks saved my life. If I’d made it to the states and been diagnosed 7 weeks later then I would probably not be alive and would have most likely had a second transplant (due to the first taking so long to graft), if I’d made it through by some miracle the cost of treatment would have left my family penniless neither of my sisters would have had the lives they have (both probably wouldn’t have been able to afford their own children) we would have lost our house, the cars and my mum her job (due to needing to be in the states while I had treatment).

Now both sides are currently saying they are going to protect the NHS- the leave campaign claim more money will be saved by leaving and this could go into the NHS (although there is no promise it won’t be spent elsewhere). Currently the NHS sends patients who need rare, complex treatment or treatment not yet available in the UK abroad (mainly to the EU). We also have many medicines, drugs and blood products provided to the UK by our EU partners. (Currently the immune system I receive to keep me alive once a week comes from Germany). This will all be protected if we Remain in the EU but if we leave this will either no longer be possible or come at an added cost to the NHS meaning more stain on the service and those saving claimed to be had by the leave campaign will soon go.

(The subcutaneous immunoglobulin therapy I receive thanks to our german EU partners)

For complex cases doctors are able to share research and treatment options with partner hospitals in Europe (this could be effected to). Research for all conditions is massively important to me as I believe that research will improve the quality of lives and ultimately a cure for many conditions. Currently this is done alongside the whole of the EU meaning a stronger pool of people to get the data from, the continuity across euro so we can better our healthcare, more opportunities for trials. This results in more areas being researched by specialists across Europe and all this research wether it’s preliminary or completed can be shared throughout the eu. If we leave we will be narrowing the trials available for all medical conditions, shutting off and narrowing the research British scientists feed into.

Currently staffing in our hospitals, laboratories and our universities are mixed and we have many EU members in these jobs if we leave their positions could be at risk and also they may choose to leave and work in a country where they can access that data early, work on that trial or research project and educate to a standard recognised by the European Union.

Our NHS is struggling yes, but because of UK government cuts not because of the EU. We are not being over run by EU members using our NHS in fact we spend less on treating our EU partners than the British public spend in EU hospitals. Our NHS is over run by us the British public (some through no fault of their own, some through bad life choices). I’m proud that our NHS does not discriminate. I’m proud our NHS leans on our partners in the EU. Im proud that our NHS is saving thousands of lives whilst remaining a free service for all. Im proud that we are apart of the EU.

I’m not saying the EU is perfect nothing is, but I do believe we have a better chance at improving the UK and the rest of the world as a whole by remaining in the EU.

These are my opinions and the reasons I believe we should #Remain. However, thanks to my political up bringing I know that everyone has their right to their own opinion and it’s ok that we think differently that’s what makes us humans. We are lucky enough to  live in a democracy where everyone’s opinions matter and count. If you haven’t decided which way to vote there is still time to research and get your butts to the polling station it closes at 10pm. What ever you do today if you’re registered to vote- don’t waste it! Don’t let your voice go unheard, make an informed choice but use your right- GO VOTE!!!

What ever the outcome is tomorrow I hope this referendum vote will change how the United Kingdom does things, that future elections will be less slanderous and more factual, that the opinions of all sides are respected. So that we can become better humans and live in a better world.

Get Voting

Wen x

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 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??