I'm not a doctor, and apart from some basic first aid training (I know how to create a sling without needing a pin) I have little knowledge of healthcare, nor thankfully have needed it.

That changed 22 months ago when I had two strokes within a week of each other. The care I received must have been exceptional. I say “must have been exceptional” for two reasons (i) I have no memory of most of that time - hence the “must have” and (ii) the recovery I have made since - hence the “exceptional”. I am incredibly fortunate and even more grateful for the life saving care and attention I received, particularly after the second stroke. When found by the first responders, I’d been unconscious for at least nine hours and was not (to put it mildly), in great shape.

The fact I’m here today, healthy, cognitively functioning (some dispute that) is testament to the care I received immediately and thereafter. I know that’s not true for everyone and certainly in vast areas of the world, impossible. I read earlier this morning of there being only 3 stroke specialists per 10 million of the population in Africa - what a shocking and appalling figure.

Every stroke, every individual, and many people’s treatment is unique, the outcome is unique and the impact it has on individuals, their families, their friends is also unique. 

Individual experience offers value

The individual (and collective) experience though has, in my opinion, huge value to care providers, be that medical, therapy or social care thereafter. It also has huge value to the stroke-survivor themselves, but more on this later.

Thankfully, and despite the myriad of pressures placed on health care providers individually and organisations, the penny is dropping with increasing numbers, that involving stroke survivors and their support groups can have huge benefits for the care providers but also for the stroke survivors themselves.

Let’s start with the stroke-survivor. For most, if not all, life changes forever after suffering a stroke. Regardless of their roles in life prior to the stroke, and regardless of the extent of recovery, almost everything changes. This is certainly my experience, and I’ve yet to meet a fellow stroke survivor who doesn’t agree.

Aside from any physical or cognitive changes, for me the biggest change was one of self worth or value. If I wasn’t able to perform the roles I previously held in life, my value to myself and others surely must decline?

An odd feature of having a stroke, unlike say a broken leg, is that the very bit of the body that is most damaged, the brain, is really the only part of the body equipped to deal with the changes. It is therefore not surprising how difficult recovery is, and how demanding it is on the survivor (and all those around them). A very good friend of mine refers to her medical event as a brain injury for this very reason.

So the damaged brain is dealing with rebuilding itself where possible, is dealing with the new reality of life post-stroke, is dealing with what can be recaptured and dealing with the change of perception of oneself plus the perception of you by everyone you interact with. 

Improving self worth and value whilst improving the system

Wouldn’t it be wonderful if apart from all the medical, clinical assistance (assuming it is available) there was something which filled a few gaps and perhaps improved self worth or value for stroke survivors? How much better might the brain cope and recover if there was an up-tick in mental health and well-being? 

I fundamentally believe that we as stroke survivors can derive huge benefits from being involved not only with fellow survivors but by being seen as a huge and willing resource to improve future outcomes. Even the smallest act, the smallest degree of input, information or involvement must have a benefit. Your unique experience, an experience and therefore insight into the post stroke world surely has to improve future outcomes if that knowledge and insight can be put into the system. I say system because this is not unique to one healthcare provider be they publicly funded or indeed private.

All of this necessitates forward thinking individuals and organisations to accept the challenge of allowing patients to have some ownership of their own care and most importantly a role not only in shaping their own plans but at a wider level, even a strategic level. 

There is a unique, lived in, data, knowledge and experience led resource waiting to be tapped into to create better outcomes in the future. Surely this is a holy grail for health and care providers, policy makers and strategic planners. 

As I say, forward thinking individuals and organisations are seeing this and engaging. The more that do so, the greater the benefit on both sides of the equation - the care providers and the stroke survivors themselves.

Peer to peer support

In addition to greater engagement and a joining of forces, another area could be the adoption and promotion of peer to peer support groups filling the very obvious care provision gap when formal care ends. 

We are currently trialling this, and the results (albeit not scientific) are very encouraging to date. It’s a subject I want to return to in the near future.

So this is just an introductory piece outlining some basic ideas about greater patient engagement and advocacy alongside the idea of peer to peer support. 

The objective is to provide better care in the future, better outcomes and also acknowledges that no matter how great the financial resources are that are thrown at health services then demand is always going to outstrip supply. Greater patient engagement and advocacy plus peer to peer support provision alongside future preventative measures must surely help bridge many gaps.

All thoughts, ideas and even criticisms are welcome.

Thanks for getting this far!