Kate Northcott: A voice to be heard

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Kate Northcott with Jessica Versey, who was diagnosed with leukemia. Pic:Kate Northcott (Twitter)

“As long as it comes from the right place and you know your passion and you know your subject, people will listen to you”, says Kate Northcott: campaigner, cancer patient advocate, and resident of Chester.

Kate specialises in Exceptional Case Appeals and has worked tirelessly to help hundreds of cancer patients across the country win access to life-saving drugs that had yet to be approved for use on the NHS, with an astonishing success rate and all without any medical training.

A person diagnosed with cancer might expect to be given access to the best treatments available. But thousands of patients are denied drugs recommended by their clinician every year.

Nine years ago, Kate’s mother, Pamela Northcott, was diagnosed with kidney cancer. She was refused drugs that could have saved her, that were used as standard treatment in the rest of the western world. Kate took up the fight and lobbied till she eventually won the drug for her mum, but it was too late. Pamela died soon after the case was won.

Kate founded the Pamela Northcott Fund in the same year, and continued campaigning for other patients that were struggling in similar predicaments, lending her voice and expertise to their cause.

“With Mum you will find that most charities and most campaigns start sadly with a tragedy, most of the effective ones anyway because it’s massive fuel. My mum was my best friend, she lived with me most of the time, much to my husband’s horror”, Kate remembers fondly.

“It’s a fabulous way of coping, because of the passion and fuel of grief, you keep going and going. I don’t get tired of this work, ever, because there’s a real energy from it. I’m doing something right from the right place, and I want to achieve something and give that to people.”

Kate’s drive to help others overcame her lack of experience in the medical and legal field: “It started with a year of me being up all night, learning, the law learning, how commissioning works, how funding works, to become a real expert”.

She stresses the importance of working with the media to back her cause: “So that if I get impatient I will almost be like their PR and say we’re gonna go on local radio, we’re gonna go on the daily mail, there are all sorts of different ways of trying to get your stories across, to shame people.

“To tackle the big boys you have to build up your credentials, you can’t just shout. I do research for BBC and certain news programs, they’ll come to me about what’s happening locally, nationally, if there’s a new policy on cancer drugs or cancer treatment or scans or anything like that.”

Kate is skeptical of the potency of social media campaigns, especially in Chester: “There are lot of twitter campaigns happening at the moment, locally, that to me are pointless. You can’t just tweet and say we are a campaign, we are supporters, you have to have a vision of what you are going to achieve and who is the power broker and how you get to that person.”

Fear is not an issue for Kate when confronting the higher-ups: “I’ve always been brought up to feel like I can speak to anybody, to question and ask them their point of view”.

She says that campaigning needs directness and adaptability: “You go straight to the top person. I do it through fighting and using their own language. It’s constantly learning, constantly understanding, putting your argument over very well and just keep going. It takes time.You have to a real command on where you’re going and who can change what you want changed.”

Eight years after Pamela’s death, the situation is still dire for many cancer patients in the UK, particularly in Wales. The lack of a designated Cancer Drugs Fund in Wales means drugs such as Avastin can be prescribed by the NHS in England but not by its Welsh counterpart.

A petition of a 100,000 signatures made its way to the Welsh Assembly earlier this month, calling for such a fund. It was ruled out immediately by health minister Mark Drakeford. “He said that the people of Wales don’t want it and they think it’s unethical and immoral”, says Kate.

She doesn’t have to look further than Chester to see the effects of the problem: “In the Countess they have English and Welsh patients, so I would work with patients on the ward, and the Welsh patient would not be getting the drug that English patient sitting next to him is. It’s scandalous.

“They’re following a party line that is wrong and they know it”.

When asked whether she expects change to come soon, Kate responds: “Absolutely yes. We’re now eight years on since Mom died, since I’ve been doing it, the situation in England is so different”.

She stays confident: “I wasn’t expecting it to get to eight years but it will change because it’s so unethical and so immoral. I have hope and lots of people have said you’re one person and you can’t change anything. I’ve never ever thought I couldn’t change anything. I’ve always thought I’ve got a voice and can use it. I wouldn’t put the energy in if I didn’t think I could change it.”

Kate can be followed on twitter at https://twitter.com/campaignkate

Her website, The Pamela Northcott Fund, is at http://www.pamelanorthcottfund.org.uk/

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