Fruit Salad anyone?

Knowledge is knowing that a tomato is a fruit. Wisdom is knowing not to put it in a fruit salad. Brian O’Driscoll

I love learning new things.

Although I’m always filling my brain with new stuff, there are many things I’ve been taught over the years that I know I will never, ever use. All that trigonometry stuff to do with Sin, Cos and Tan for example. What on earth is that all about? My extremely sketchy recollection sits there taking up space in the depths of my memory in a half-baked state that makes no sense to me. I don’t even know what real-life problem I might be needing to solve for it to be of any use. No idea at all.

On the other hand, I also have a whole catalogue of information that I have stored up over time that, out of the blue, can become the most useful thing I know. Things like how to sew on a button so it will never fall off again, how to safely tie up a pony’s hay net or how to do a proper hospital corner when making a bed. Probably fairly lightweight pieces of information in isolation but very useful when needed.

I have a lot of information stored in my head that I have collected during my lifetime. When I need to work something out or if I find myself an unknown situation, I can usually give most things a go because of what I know already. Failing that, I will probably know enough to ask Google the right question to get the information that I need. The stuff that I already know helps me to be more resourceful, to find out what I need and to get things sorted.

So, what exactly is my point here?

My point is that sometimes, having really useful information stored in our heads, ahead of when we might need it and alongside a basic understanding of when to use it, enables us to be more confident, resourceful and able to cope with what might be a difficult and stressful situation. This was never truer than when my Dad died, fairly unexpectedly, a few years ago.

Before Dad had his stroke, I had spent several years leading a project to ensure the best end of life care was available in the area I was working in. When I started the project, it wasn’t a world that I was familiar with, even though I had a lot of project experience within the NHS. I knew nothing about how it all worked and spent a lot of time asking “stupid” and obvious questions about how people are cared for when they are thought or known to be within the last year of their life.

The work itself was life-changing for me and I continued to work in the field way beyond Dad’s death. Over time, I developed a deep understanding of what was possible when people were approaching their death, enabling them to get the most from the time they had left. I learnt what patients and families needed to ask, who to ask and when. I learnt from clinicians working in hospitals, hospices and in the community. I learnt from patients, their families and their carers. I learnt from the statutory sector, the private sector, the voluntary sector and from everyone in between. The service improvements we put in place over the years were informed by all of these conversations. We made many changes, including developing a service to help patients, their loved ones and clinicians navigate the complexities of “the system” at end of life. It’s complicated and a problem that needed to be addressed. We found a way and won a national award for doing so.

Looking back, the important part for me in all of this was that I was learning about it from a User’s perspective, not from the viewpoint of a clinician. I was learning what it is really like to be needing to understand about end of life care, death and dying when you know nothing about it, when you are in need of information and care and understanding, when you are in distress, when you are losing someone you love, when you are thrown in to a situation that is difficult, unknown, scary and you need help from a system that is hard to navigate.

The thing is, we will all be in that situation at some time in our lives. Like it or not. It will happen, even if you just choose to ignore it and pretend it won’t. It will.

When my Dad died, I was in a fortunate position. I knew to ask the difficult questions of clinicians, to help my Mum and my family to understand what was happening, to get my Dad the best care he could have up until his last breath and beyond, to look after us all in an incredibly distressing and sad situation. The information was in my head and I could access it to help when I needed it. Knowing what I did didn’t stop my Dad from dying but his death was as good as it could be, for him and for us and that helped us in our grief. I am eternally grateful that I knew what I did and we were all empowered through my knowledge.

Whilst I was working on the project, it had never occurred to me that I would soon be using what I knew in relation to my own Dad’s death. The thing is, I have also been able to help many friends, family, and colleagues when they have needed advice, support and guidance too. What to ask, who to ask, what to expect, what should be possible, how to get help, support and access to resources. Stuff they didn’t know when they really needed it. Information that is powerful and supports a level of control in an uncontrollable and unknown situation.

The reality is that it is human nature not to look at death and dying in the face unless we need to and even then, it can be incredibly difficult to do so. For most of us, it’s uncomfortable and painful to think about our own death or of those we love. It feels pointless to think about it when it’s not relevant so best just avoid it and leave it for those who need to know about it now. Poor them.

So my challenge to you is this: What is the worst that can happen if you find out some information about end of life care that you can hide away in your memory until the day that you need it? I can promise you that doing so won’t directly cause anyone’s death (unless they have a heart attack at the sight and sound of your proactive approach to facing mortality head-on or you electrocute yourself trying to turn your dodgy desk lamp on in order to Google the definition of palliative care).

Searching out information on the internet in relation to the following questions might be a good starter for 10:

  • What’s possible in terms of available care and resources when people are nearing the end of their life?

  • How can you make sure that clinicians, carers and family members know about what you would want to happen to you if you were dying?

  • What’s possible in terms of getting someone support to be cared for in the place of their choice?

  • What do you really know about what happens in a Hospice?

  • How would you ensure that someone could make decisions about your care on your behalf if you weren’t able to?

  • What is Continuing Health Care funding and who is eligible to receive it?

  • What would you like your own funeral to be like (and who do you need to tell)?

The reality is that none of us know when we or those that we love will reach the end of life. For some it will be sudden and unexpected. For others it will be known about in advance and there will be time to make plans and to talk. I have no idea which is better. They are just different, and the circumstances will affect those who are left behind in a whole manner of ways. What I do know, both from personal experience and from my work, is that having some knowledge and information is key to making the best of what is happening, however small a difference it might make.

So go on - be courageous and start to plant some seeds of relevant knowledge and information in that brain of yours. It might be uncomfortable but it won’t hurt and nothing bad will happen. It might just make all the difference when you need it.

I’d love to hear how you get on.


Sue Tappenden

Tel: 07801 627947​

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