In 1950, the survival rate for childhood leukaemia was 20%.
Prior to that, the child was “made comfortable”.
In 1994, I was diagnosed with Acute Lymphoblastic Leukaemia. The survival rate was 70%.
I trialled a new treatment protocol, which meant I would have three intensive blocks of Chemotherapy, instead of the usual two. I responded well to treatment and became a survivor. I was one of the incredibly lucky ones. I owe the NHS my life, several times over.
Some children I met in hospital, weren’t so lucky. Some of them died. My mum had to endure two heartbreaking funerals with tiny coffins, whilst knowing her own daughter had the same thing.
Ever since my treatment finished, I carry a card, stating that I may develop secondary tumours, as a result of my chemo. In January this year, that happened for me. A 6cm malignant tumour was removed from my thyroid (Papillary Thyroid Carcinoma). I then underwent internal radiotherapy (Radioactive iodine treatment / RAI), which made me radioactive for a short time and earned me the title “Radioactive Mum” on Google, and across international media. This treatment was not new, its been around for over 30 years. It’s only used for thyroid Cancer and thyroid disorders, so it’s little known about.
It reminds me of a film I watched many years ago, when on hearing he had to have radiotherapy after chemo, the character exclaims, “First you poison me and now you want to nuke me?” (1998 movie Shattered Hearts, which was later renamed A Champion’s Fight) … but its true. A lot of chemo drugs are horrendously poisonous.
Post-nuking, I have to carry a card with me, for 6 months, stating that I will set off radiation alarms at airports, which is a little bizarre!
Guess the possible late side effect of radioactive iodine treatment…
Now, in 2013, the survival rate for childhood Leukaemia is 90%.
90%… That’s great, but what’s changed? Not a great deal in reality. Chemotherapy is still a medieval form of treatment. It still makes the patient incredibly sick, puts them at risk of dying from infection or a minor illness, like Chicken Pox. Chemo still causes late side effects, like tumours and for Leukaemia, treatment is now over 2 years long (it was 100weeks for me aged 8). In fact, by large, Chemo hasn’t changed much in 40 years. Some of the drugs for Leukaemia have changed, due to innovative doctors risking their jobs to try and save lives. For many other cancers, there has been little to no improvement in survival rates over the last 40 years.
Why aren’t doctors trialling more new innovative treatments? There are still some Cancers, where there is no cure or where treatment just doesn’t work. Rarer cancers being the worst. There are drugs and treatments that have been researched and may work, but they aren’t used. Why? Because any doctor who chooses to deviate from standard procedure, is subject to litigation for patient neglect. The NHS spends around £4.5Billion pounds in litigation, where patients have sued.
Most of the trial treatments and research for Cancer, which are funded and permitted in the UK, are for “the Big 4” Cancers (most common). These are breast, prostate, lung and bowel.
So we are doomed right?
Lord Maurice Saatchi tragically lost his wife to ovarian Cancer and decided he wanted to change the law, to allow medical innovation, in order to save lives. This is known as the Medical Innovation Bill (aka The Saatchi Bill). Under this bill, doctors are able to present each patients’ case to a multi-disciplinary panel, whom will collectively authorise or decline the doctors’ treatment proposal. This will allow safe and legal innovation, which puts the patients’ best interests at heart, without posing risk of litigation to the doctor.
If passed as law, the Saatchi Bill will pave the way forward for someone to find those vital cures for Cancers. In addition to cures… Improvements, so side effects such as “more cancer” can be eliminated, and so treatments wont make people so ill. What’s more, the medical innovation bill will apply to all illnesses, not just Cancers.
So where do you come in?
On Wednesday 11th September 2013 The Medical Innovation Bill was read in the House of Commons, as a 10minute rule bill. It’s due a second reading in October. Bills like this can take years to get through Parliament, but this can be speeded up by MP’s and media attention. So… If you’re reading this, please please write to your local MP and ask him/her to support the Saatchi Bill. And if you are a blogger or someone whom works in media… Write about it. Lets give the Saatchi bill the attention it deserves, in honour of those who have died of Cancer, those who are still fighting and those whose lives may be saved in the future.
And if you are sat there, thinking, “my letter wont make a difference”, you’re wrong! Your letter might be the tipping point for your MP’s decision. Your MP’s support could make the difference to whether this bill goes through or not. This bill could help find the cure for Cancer, so much quicker. So you see, your little letter, could save someone’s life.
Verily Victoria Vocalises says
An absolutely FAB post lovely, really well written x
Verily Victoria Vocalises recently posted..Post Comment Love and Newbie Showcase 27th to 29th September 2013
Sarah MumofThree World says
What a brilliant post. It seems so obvious that doctors be allowed to try new treatments. I’ll be backing the Saatchi bill!
Liz Scarff says
Thanks Emma for such a great post. Your personal experience brings into sharp focus exactly why the Saatchi Bill is needed.
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