Making Day-To-Day Life A Little Bit Better

This is the transcript of my TedX speech for the UK’s first TedX NHS.

I’d like to talk to you today about reimagining the other side of care — the non-medical side. Thanks to our healthcare system, people diagnosed with long-term illnesses can be sure they’ll receive the medical care and advice to treat the progression of their tumour, to the best of the ability of their dedicated nurses and doctors. They’ll have their treatment schedules and their medicine regimen, and they’ll know who to call.

And then they’ll go home and be living with it. Day in day out, maybe for years. The word patient means ‘one who suffers’. This is borne out nowhere stronger than in a long-term illness. Think about cancer, for example, where the tumour itself, and the treatments — like chemo, radiation, surgery — can cause countless symptoms and side effects — such as itching till your skin is raw, a constant metallic taste that makes everything taste awful, a sore mouth that makes it painful to even drink water, or brain fog where your memory lapses make you feel like something is really wrong. These are in addition to those we more frequently hear about like nausea, hair loss and pain.

When you’re living with these side effects and symptoms, it’s hard to have a normal home, family or work life — to take your children to school or even to go to the supermarket. Quality of day-to-day life takes on a whole different meaning.

But the fact is that there are hundreds of products, services, tips, exercises, recommendations — that, if known about, would put the power in the hands of patients, to make small improvements to their daily life — that could make the world of difference.

Examples

  1. A PICC line is a long, thin, hollow tube that a doctor or nurse puts into a vein above the bend of your elbow. It is used to give you chemotherapy and other medicines. It can stay in place until your treatment is over. Many many cancer patients told us that they were struggling to find a suitable and presentable cover for their PICC line, and were cutting up socks to put over their arms and cover the site. We managed to source one from the US — made with a breathable comfortable cotton/lycra fabric that has an EPA-approved antimicrobial treatment. The cover can be machine washed and the antimicrobial treatment will last at least 100 washes whilst maintaining 99.9% efficacy. The cover includes a mesh window which allows both airflow and visibility to the PICC line, allowing for any changes in the appearance to be seen easily. And the type of feedback we get is “I love the mesh window, which makes it easy to see my PICC site and ensure it’s doing well. I also love that the band keeps everything nice and covered, which helps to prevent snags and also makes me feel more normal in public.” — little bit of an improvement to day-to-day life
  2. There are several lotions that can help with extreme itching. Patients don’t know what could help, and don’t know what is available, and often don’t seek help. One of our community had a grandpa with terminal cancer, whose chemo had made his scalp unbearably itchy, and he had been scratching and scratching his head raw. From simply using two anti-itch lotions, we got the following note: “Here is a very thankful review from my mother: grandfather got the creams, and they help, and he doesn’t have to scratch his head all the time anymore, and the itching is gone. He is very very happy! One life made a bit better!”
  3. And finally, here’s a very very simple product — it’s just a length of rubber tubing to put on toothbrushes and other things that need handling but are impossible if you can’t grip. We even felt a bit bad sending this out — it’s so unremarkable. But the feedback we got was remarkable. The lady we sent it to wrote to us and told us that her husband had fitted it to her knife and fork, and for the first time in years she was able to feed herself her Christmas dinner. It made the world of difference to her feeling normal.

That every single patient with a long-term illness doesn’t immediately (from the point of diagnosis) know about every single thing that could improve their quality of life is hugely frustrating — and wrong.

Non-medical care that addresses daily living with an illness is neglected, in our country and in most others. It doesn’t fall to any entity’s clear responsibility, the major ones of which are — very rightly — concentrating on treatment or cure.

It’s also fragmented. Charities, support groups and personal networks fill the void — and then it’s down to the patient themselves to put together little pieces of what they could do to make their day-to-day life better.

Making day-to-day life better for people with cancer and all long-term illnesses is going to take a step change in this non-medical side of care.

It’s going to take a few things to make this happen:

First, education. Patients need to know what’s coming…

Even as treatments progress, the wealth of patient reviews and feedback means that establishing the most common set of side effects and symptoms is straightforward. What’s even more useful is the less predictable or talked-about consequences. I talked to one woman who wasn’t told about the fertility effects of chemo and that she could explore egg-freezing options in advance of receiving treatment. She discovered this post-treatment. It turned out to be too late for her to have a planned-for, longed-for third child. This kind of information gap or disparity is damaging.

But, information alone can be merely frightening. One man gave me the print-out of side effects that his oncologist had handed him. So, knowing what’s coming needs to be coupled with…knowing what can be done about it. For cancer, we haven’t yet found a side effect or symptom for which there is no potential action. It may be something that provides light relief, or distracts, or soothes, or wholly or partially alleviates it. If that exists, it should be something patients know about, and then the power is in their hands to decide whether to choose it or not.

The second thing needed is aggregation. The search costs for a patient should be zero. For someone with the world on their mind, this should be at the fingertips. The necessary work is in collecting, curating and continually updating.

And the third is integration. As with everything in healthcare, coordination along the care pathway is everything. This non-medical side needs to be part of care planning — even if it’s simple as signposting at the right time.

Educate, Aggregate and Integrate. Who’s going to do this? Medical and research institutions working in the space of long-term illnesses have their hands full — and their budgets no doubt full too — with treatment, research and cure. So, there’s a massive and exciting role in healthcare for those of us — social sector and entrepreneurs in particular — who aren’t doctors, nurses or scientists but care deeply about the long-term unwell. Reimagining the non-medical side of care needs its own focus to make sure as a country, we are at a minimum coordinating all that we know, and all that exists that could help, to make day-to-day life a little bit better. I think this an idea worth spreading.