You shouldn’t have to queue for chemo.

I had the privilege of speaking at the National Clinical Homecare Association’s first annual conference. I was there to represent the patient perspective, and recount my experiences of breast cancer treatment both privately and on the NHS.

Here’s my speech; I hope you find it helpful:

Lorsque vous apprenez que vous êtes atteint d’un cancer, il est très difficile de réaliser complètement ce qui vous arrive. Que vous soyez jeune ou vieux, marié ou célibataire, les réactions sont les mêmes partout dans le monde: incrédulité, peur, refus… Votre cerveau refuse de comprendre et ne veut pas assimiler la majeure partie des informations données. C’est comme si vous écoutiez une langue étrangère: vous comprenez quelques mots, mais le reste est incompréhensible.

I’m going to hazard a guess that around 99% of you understood some of what I’ve just said. The odd word, phrase, sentence perhaps, but not everything. Well, that’s what it’s like when someone breaks the news that you’ve got cancer. Your brain doesn’t quite engage, and you miss huge amounts of information. It really is like someone is talking to you in a foreign language; you understand a small amount, but the rest is indecipherable.

By the time you’ve gathered your thoughts you’re in the system… havingconsultations, blood tests, an operation, getting dates in the diary for treatment, receiving handouts GALORE about side effects of the different drugs, more blood tests, meeting your breast care nurse, having treatment. But it’s good to be in the in the system, it’s there to help save your life, but you can easily feel overwhelmed, that you’ve lost control and cancer’s in control of you.

Not many of us have the ‘opportunity’ to experience cancer care both privately and on the NHS, but I did. I’ve had breast cancer twice in the last six years, so comparing and contrasting has been interesting and informative.
Initially, it doesn’t really matter if you’re on the NHS or private, when you hear the words: “it’s cancer”, you think you’re going to die and that’s it, your world’s over. Not long after that, you realise you’re not going to die and then CONTROL becomes a very important commodity.

I’d like to tell you a little story about control. My recent holiday experience in Mallorca with Ryanair in fact.
The family had had a brilliant time, and the last day was spent sightseeing in Palma before going to the airport. As soon as our flight was called, we made our way to the departure lounge and queued behind the priority boarding sign. The queue got longer, then the staff decided to change the queue for priority boarding. We all raced to the new location – this is Ryanair after all – and renewed the queuing. Then one of the staff told, not asked, told the first man in the queue to put his hand luggage in the little measuring cage. It went in after a little pushing, but that wasn’t good enough, he had to remove his laptop from the case. We all knew what was coming next: “you have two pieces of luggage, 40 Euro!” and she marched him off. We actually thought she was going to fingerprint him, but she just wanted to humiliate him, which she did, because she could. The priority queue changed again, but now most of us were locked together like a Rubik’s cube, so we all shuffled over, and when two Ryanair ground staff shouted at us to get into single file, we couldn’t. Then some of the children started to cry because the shouting frightened them and they thought their mums were going to be arrested for having oversized hand luggage. The delay in boarding, caused entirely by the staff, meant we lost our slot and had to wait in the plane for another hour and a half.

What did this teach me? That Ryanair had complete CONTROL but also that this kind of travel is an amazing masterpiece of logistics. Millions of passengers are processed and sent all round the world, very safely, 24/7. But a masterpiece of logistics leaves very little room for customer care or a bespoke service, yet we’re the paying customers.

In many ways hospitals are a little like airlines. They have to meet targets; they have to come in on budget; they have to keep the beds filled; they can’t let you ask too many questions in a consultation or the queues will be even longer than they already are; it’s a fast moving business. The problem here is that cancer’s not a business, cancer’s personal.

In 2004, when I was first diagnosed with cancer, I received chemotherapy at home. I was delighted by this, even though I didn’t know what chemotherapy was, I was on my own turf. The routine was as painless as it was simple:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• The dates and times for treatment were agreed with my chemo nurse
• I had the same nurse for virtually every treatment
• She was always on time
• The whole treatment was over within 2-3 hours max

I handled the treatment really well. I worked throughout it, only taking two days off for chemo. I had a great relationship with my chemo nurse Elaine – I could ask her anything and I’m still in touch with her seven years on. Most importantly, I’d timed the chemo to coincide with when my children came home from school. Even though I was plumbed in, we all had afternoon tea together. They could see that chemo wasn’t scary at all, and it took a load off them and off me too. I felt in control of so many aspects of my treatment and very confident about my future.

In 2009, at my five-year check-up, I found out that I had breast cancer again, another new primary. I no longer had private medical cover, but I asked my oncologist, the same one, if I could have chemotherapy at home. I received a very swift and definite ‘no’. I put forward the argument for home treatment, but it didn’t wash. So this was my new NHS routine:

• I met my oncologist who told me about my drugs and my treatment plan
• Everything was explained to me clearly and unhurriedly
• There was no choice of date or time, I had to fit in with them
• Then I had to queue…
o The first queue was for the car park (I usually ended up in an NCP)
o The second queue was in the outpatients waiting room
o The third queue was in the oncology corridor, where everyone was also weighed in public view
o The fourth queue was in the chemotherapy waiting room
o Finally, I got to have chemotherapy, sitting alongside ten people, each accompanied by a friend
o The whole process usually took five hours, but one day because of staff shortages, I was there for seven hours

And, as I rarely had the same chemo nurse, I couldn’t build a relationship as I had previously.

I still continued to work during treatment, in fact I had set up my own company, but if anyone asked me how I felt on the third day after chemo, I’d start crying, but I had no idea why. Generally I just didn’t fare as well second time around; I didn’t feel as “good”. Was it because I knew what was coming? Was it because I was five years older? Was it because I had no input? While I cannot fault the medical treatment I received, I used to hate the days I had to go to hospital for chemo.

I believe it had more to do with the lack of CONTROL, the impersonality of it all and the utter frustration of hours just spent queuing. Whether you have private health cover or not, no one should have to queue for chemo.

I’ve been very explicit about my home care and hospital care experience, but perhaps you’d like to hear how we all might be ablehelp to improve the patient experience still further? When I first had cancer the sheer amount of stuff I received was formidable. But it was also very cold and often didn’t even scratch the surface of what was for me intensely important. For example, why didn’t anyone tell me how to prepare for the possibility that I might get diarrhoea at work? Because I did. Why didn’t anyone tell me I could lose my fingernails and toenails? Because I did. Why didn’t anyone tell me that I might get cording and how to deal with it? Because I did. Why didn’t anyone tell me running would alleviate my joint pain brought on by chemo? Because it did. Why didn’t anyone tell me that I could still enjoy a drink at the end of the day, as long as it was sweet? Because I did.

I want information that I can assimilate easily; it should be delivered in a way that enables and empowers, that inspires and builds confidence; it’s about being creative with what you’ve got – just changing little things can make a big difference.

A great example of doing something very small but creative, which has improved the customer experience (and saved money too) is at Schiphol Airport in Amsterdam. Has anyone here used the men’s urinals there? There’s a small black fly embossed in each urinal. It was put there to help improve the user’s aim and it worked. It reduced cleaning times, and therefore costs, and made visiting that loo a pleasure not a pain. It’s a practice that is being adopted all over the world.

I’m sure, with a little more creative thinking, plain old information about cancer can be delivered in a far more relevant manner, more interactive, more encouraging, tailored to people’s lifestyles today, NOT the lowest common denominator. I don’t want to be told what I can’t do; I want to feelinformed about what I can achieve.
I believe there are people here today who can help make that happen.

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