So long, @grangerkate

It has been just over a month since my friend Kate Granger died. The @grangerkate column in my TweetDeck stands still, but mentions of Kate flurry past. Still changing the world, a tweet at a time.

I’ve been watching a drama called Mr Robot. In one episode the main character is talking about a childhood conversation with his father, after he accidentally brought home a shoe full of sand from the beach.

Every day he said we change the world. Which is a nice thought until I think about how many days and lifetimes I would need to bring a shoe full of sand home until there is no beach. Until it made a difference to anyone. Every day we change the world. But to change the world in a way that means anything that takes more time that most people have.

Kate had less time than most of us. But she used it to change the world. The breadth and depth of reporting of her death would have amazed her. As a member of the UK’s peer support charity for people with Addison’s, I was asked if I would like to write an obituary. It took quite a few deep breaths, but I’m proud to have had a chance to share some of what I knew of Kate, and loved of Kate.


 

Kate Granger MBE FRCP was a doctor and patient advocate, who used her experience from both sides of the medical divide to campaign for better patient care. Here, her friend and ADSHG member Lindsey Fallow tells us more about Kate’s life and the difference she made to patients’ experiences through her #hellomynameis… campaign.

Kate Granger liked to describe herself as “An ordinary Yorkshire lass”, but she achieved some extraordinary things before she died, at the age of 34, on the 23 July 2016.

I say ‘died’, and not ‘passed away’ or ‘lost her battle with cancer’ because Kate felt very strongly that language around death and cancer is important. Dying is dying – she was a young woman dying too young and she wasn’t going to sanitise this with euphemisms to stop people from feeling uncomfortable. She wrote brilliantly about why the ‘cancer battle’ language loved by the media isn’t helpful – she couldn’t ‘fight’ her sarcoma, and when her body was finally overwhelmed by it she wasn’t a loser.

In my mind, Kate’s most important achievement was also about language – the four words that she noticed were absent in so many of her interactions with health care professionals: Hello, my name is…

In 2013, during yet another hospital stay for an infection, she noticed how few of the staff introduced themselves before doing things to her, and how much difference it made when they did. Her husband, Chris, told her to stop whinging about it and do something. So she did – they did – building the #hellomynameis campaign from a twitter hashtag to an international movement supported by the great and the good as well as junior staff working in the NHS.

Hopefully, if you’ve been to hospital recently, you’ve noticed that the health care professionals who met you started with #hellomynameis.

It sounds like a simple campaign about manners, but Kate understood, from her experience as a patient as well as her own work as a geriatrician, that you are always treating the person, not the disease, and that much harm is done when a person is treated as a disease. Introducing yourself, “Hello, my name is…” leads to a conversation. It’s almost impossible, outside of a GCSE French class, to say, “Hello, my name is Lindsey…” and stop there. The next part is likely to be an explanation of what your role is and what you are about to do. And then a question, because monologues feel uncomfortable. So now the patient and the doctor or nurse or healthcare assistant are talking. This has a profound effect on the experience of having something ‘done’ to your body, but also leads to an increase in patient safety – once the ice is broken, it is easier for the patient to raise questions or concerns, from “I’m sure my GP said we should do my thyroid levels while we we’re here?” to “I just want to check that you know I’m steroid dependent?”

For those of us with dangerous, uncommon conditions such as Addison’s, it’s a chance to educate as well as get reassurance that our steroid dependence has been considered, without the awkwardness of trying to pipe-up in a vacuum.

The increase in introductions, as reported by patients, is something that made Kate really proud. She saw the improvement in her own hospital experiences, and by the time she died she was beginning to understand the impact that she and Chris have had on the daily care experiences of hundreds of thousands of patients. That was a big deal, almost too big a deal for Kate to take in – along with her other achievements, which included an MBE for services to the NHS and improving care, and becoming the first doctor in training elected as a Fellow of the Royal College of Physicians. After each adventure – and there were many as she worked her way through a bucket list that included skydiving and publishing two books about her experiences as a doctor-patient, raising over a quarter of million pounds in the process for the Yorkshire Cancer Centre Appeal – she would go back to being ‘just Kate’, wife (to incredible husband Chris, who worked logistical magic to bring Kate’s “I wonder if…” into being), auntie, friend, cancer patient and consultant geriatrician.

Kate was an excellent doctor. I met people who had worked with her and all said the same. Kate used to joke that of course everybody would say that – nobody says anything horrible about the girl dying of cancer – but I know it was true. One day I met her for a coffee in the hospital and she was carrying a pint of whole milk. She’d asked – as she did every ward round – one of her patients if there was one thing she could fix for him today, what would it be? He’d requested ‘proper milk’, so she was fixing that. She understood, viscerally, that the priorities of the patient matter most, and are often nothing to do with the disease. Patients don’t say “cure me!”, they say “can I have a bath instead of a shower?”

Baths were important to Kate and for the final fortnight of her life she chose a hospice, St Gemma’s in Leeds, where they made sure that she could still have them. “They said I could have more than one bath a day if I wanted!” she told me, excitedly, when I first visited her there.

And that sums Kate up – an ordinary Yorkshire lass who achieved extraordinary things by appreciating the impact of the small things in life. “Hello my name is… introduce yourself, it’s not rocket science!” she used to say, but it is a powerful transformation spreading through the NHS and beyond. Every 36 hours, a million patients interact with the NHS. Hundreds of thousands of times each day, a doctor or nurse will say “Hello, my name is…” and the patient will have better, safer healthcare as a result. Thank you Kate.

You can find out more about the #hellomynameis campaign at http://hellomynameis.org.uk.

 


This article was originally published in the Addison’s Disease Self Help Group (ADSHG) September 2016 newsletter, which is a members-only publication. It has been reprinted with permission from the ADSHG. See www.addisons.org.uk.

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