Patient Power: Two Stories that Prove Your Voice Matters and Saves Lives

When the media and politicians constantly speak of the NHS being in crisis, it is easy to feel like patients are powerless over the healthcare they need. But I want to share two stories with you that prove your voice matters and with people behind you, your voice is hard to ignore.

Sasha’s victory 

In August last year Sasha, a mother of two, received the devastating news that she had relapsed with leukaemia. Doctors said that Sasha’s best chance of survival was to have a second stem cell transplant. But in July, the Government had decided that the NHS would no longer fund second stem cell transplants, because of budget cuts.

That’s when Amy started a petition for her friend, calling for second stem cell transplants to be allowed on the NHS. Sasha had no other chance of getting better but privately the treatment could cost over £150,000.

What happened next blew Amy and Sasha away.

Not only did 167,000 people come together and pressure the NHS to give Sasha the life saving treatment she needs, but they also chipped in and raised the funds so that Sasha could pay for the treatment privately.

Sasha’s care was underway when the NHS announced on Friday that they have changed their decision – second stem cell transplants will now be available on the NHS.

Amy now knows that the actions of one person can have a multiplying effect.

“I cannot begin to tell you how I am feeling right now as I am in complete and utter shock! I just needed to let you all know how amazing you are and how amazing this news is!”

Sasha is about to go into hospital and is waiting for her operation, and Amy is waiting to have her friend home.

“Now all we have to do is have our Sasha back to full health and we really will have her happy ever after!!!”

Abi and Lewis’s story

By the time Abi and Lewis were 11 years old, they had both been diagnosed with dense deposit disease  – a rare autoimmune condition which stops the kidneys from functioning. It is life threatening; doctors didn’t know if either of them would reach their 18th birthday without a drug called eculizumab.

According to NHS England, the condition was too rare to provide on the NHS and at £137,000 a year, eculizumab was too expensive for either family to pay for themselves.

Abi’s mum and dad, Jo and Andy, started a petition, in a desperate attempt to save their daughter, weeks earlier Lewis had also turned to too to do the same. Together their petitions were signed by over 300,000 people, and prompted David Cameron to order a health debate and review of drugs funding policy last year. 

Then on Friday the NHS announced that eculizumab will now be available to patients like Abi and Lewis. It means they can finally get the treatment they need. 

Abi and Lewis can finally look forward to a real future and thanks to the treatment, Lewis will now be able to represent Team GB at the World Transplant Games. He said;

“The future is really looking up!” 

Abi said,

“It’s been so hard for so long but I’m really looking forward to my life now… I promise I will look after my new kidney and make the most of every moment.”

Abi’s mum, Jo, says she couldn’t have done it without knowing there was so much support out there for the family,

“206,710 heartfelt thank yous to and each and everyone who put time aside to sign our petition to drive such significant change for our daughter and all qualifying patients to access this life saving medicine”

Abi, Lewis and Sasha’s friends and families turned to the internet for help when they felt powerless. Critics questioned whether campaigning could make a difference when up against Government cuts and NHS bureaucracy. But they kept going, because thousands of supporters out there believed in them.

And today, not only have they saved their lives, but they have also made a difference for others in the same position. 

Share this story to give hope to others fighting for the healthcare they need and to spread the word that people power can literally save lives.

Written by
Kajal Odedra
March 1, 2017 4:03 pm