A letter to the NHS

Hi NHS,

My name is Kit. I’m 35 years old and I have secondary breast cancer. I was diagnosed de novo at stage 4 nearly two years ago. Since then I’ve spent lots of time dealing with you. It hasn’t always been easy for either of us, so this is a letter telling you how I feel. I want to clear the air so that we can be friends. It feels a bit like writing to Father Christmas. I don’t know if you’ll ever read this, but I hope so. I also hope you don’t hate me afterwards as I really need you in my life right now. I know nobody likes really long letters so I’ve tried to focus on the key issues we need to discuss.

Firstly please know that I love, adore and respect the NHS. Criticising you makes me sad. But honestly you aren’t making things easy for me.

Access to drugs for stage 4 cancer patients needs urgent reform. I’m young, strong and healthy, but I might be starting chemo next month which will slowly but steadily destroy my body. There are alternatives out there, but your rules on treatment lines mean that I can’t access them. Over 11,000 British people will be killed by breast cancer this year. Most of us could live for years with better drug access and investment in newer radiotherapy technology. I’m working full time despite having terminal breast cancer. Your staff keep telling me to take it easy and not exercise or work, but I’m still young and have a lot to offer. How about meeting me halfway and offering access to new and innovative treatments being developed by skilled researchers across the world. At the moment I’m facing death knowing that you could extend my life. That makes it very hard to be friends with you.

If drug access is too much to ask for, can we discuss your long term strategy on cancer? Awareness and prevention are great things to work on, but your strategy doesn’t seem to cover people living with incurable cancer now. When I see ministers talking about you focusing on catching cancer early I feel a bit sad. It’s like you are leaving those of us who are at stage 4 to die in the corner. I know you wouldn’t want to do that. Would you? Besides even if you catch breast cancer early, up to 1 in 3 people will have their cancer come back anyway – often at stage 4 which is the stage that kills. How about focusing on stage 4 for a bit? There are literally thousands of us hoping for a minute or two of your attention. My oncology unit has over a dozen primary breast cancer nurses. We only have 1 part time secondary breast cancer nurse who is incredible. But she is on a temporary contract and I’m really scared of losing her. Stage 4 really does need more than part time and temporary help.

If drugs and staffing aren’t good conversation starters, can we have a chat sometime about my GP surgery? They have some great staff. They also have some mean ones who make me go home and cry. Yesterday I went to the surgery for my monthly injections of zoladex and denosumab. I have a weakened immune system due to cancer treatment. As such the surgery waiting room is a very dangerous place for me to hang out. Normally I ask the receptionist and they let me wait in a side room to reduce the risks of me catching something and possibly dying as a result. Last time I had a cold I spent 5 days attached to an IV in hospital. My immune system sucks! Yesterday though the receptionist told me I should sit in the corner and I’d be fine. I explained I wasn’t prepared to do that. The GP has told me never to do that. Her response was that she knew I’d be fine as I go to work. Yep sue me I’m dying, but I still have bills to pay. I had to point out that generally my colleagues don’t come into work with contagious diseases before she reluctantly agreed to find me somewhere to sit. At the time I was annoyed, but now I’m already stressing about what will happen next time I go to the surgery. Other receptionists have suggested I could cope without my thyroid drugs – one of your wonderful surgeons removed my thyroid 5 years ago so I really can’t cope without the drugs. There are more problems, but I don’t want to discuss those issues in public. I am literally getting sick with stress every time I have to deal with the surgery. So I’d really appreciate it if you could ask them to always be kind to sick and scared people like most of their colleagues. Thanks in advance for that.

Finally NHS I just wanted to ask if you had any thoughts on how money is spent at the oncology unit by your hospital managers. The oncology unit is largely paper based, a bathroom ceiling in the ward is falling down, the only entertainment comes from donated jigsaws and the booking line doesn’t even have an answering machine. Computers (the few that they have) are ancient. Chemo awareness briefings are done using a laptop running Windows XP. The chemo rooms are so crowded that patients can’t take anyone with them to appointments. The unit needs investment. That has to come from your budget or the charitable trust that raises funds for the unit. The charity does great work but seriously NHS you shouldn’t be relying on them to buy chairs for chemo. I wish that my oncologist had access to a tablet or laptop with all of my medical records on. At the minute most of the appointments are taken up with her checking handwritten notes! If it isn’t in the notes she has to go and find a computer in another room. It’s 2019 and my oncology unit is still heavily reliant on pen and paper. NHS it makes you look bad, although the sky ceilings the charity has recently been installing do make you look pretty as well.

I know this letter sounds mean. I don’t like criticising you. When you are great I boast about you. But the other day someone told me how lucky I am to be sick in the UK as we have the NHS. I really wanted to agree with them, I really did. However, despite some superb staff working in your hospitals and surgeries I couldn’t agree. That made me very sad. So NHS I wrote you this letter. I doubt you’ll ever read it. I know lots of people will disagree with me, but I just had to let you know how I feel. I love you too much to lie to you. So thank you for everything and please don’t hate me. Regardless of everything in this letter (and all the things I left out) I love you.

With the warmest regards,

Kit