OK, time to dive into a little more detail about what stroke-survivors.org is trying to achieve.

Firstly, in case you didn’t know (and I’ll keep it brief if you do) - my name is Paul Quinn and for want of a better term, I am the founder of stroke-survivors.org. Back in late July and early August of 2023 I had two ischemic strokes which occur when a blood clot or other blockage cuts off the blood supply to the brain, leading to tissue damage, and can cause all the massive damage many of you will be aware of either as stroke survivors yourselves, medical staff, carers or family members.

I’ve been incredibly lucky with my recovery, but the whole experience of recovery has led me to think about what can be done by survivors and their support groups to make their experience more beneficial to themselves and to others.

My mother was a nurse throughout her working life and my childhood, and my daughter is a resident doctor - formerly called junior, (although getting more senior with each passing day). Yet, I never realised the sheer effort, dedication and yes, love that medical staff, clinicians, therapists and others put into the care of those who need that care at the most vulnerable times of their lives. It is truly humbling (and even bewildering) to be on the receiving end of total strangers dedicating so much time, effort and love into your care. 

However, we all know, regardless of where in the world you are, who your care provider is (publicly funded or private) that there comes a time when patients have to stand on their own two feet.

In the case of publicly funded health care such as the NHS in the UK, despite the politically motivated desire to offer as many services for as long as it takes, the harsh reality is that care is a finite resource for many, many patients.

That appears to be the case for stroke survivors and I say that with no criticism of those delivering the care.

So what can be done?

There’s a care deficit which occurs after the initial emergency care (which is by necessity focused on life saving and damage limitation) followed by the rehabilitation services which are vital to the degree of recovery most survivors will experience. 

That care deficit provides an opportunity for individuals and collective organsiations be they charities, community groups, faith groups or any other interest group - the community organisations funded by football clubs (and many others) for example, Trade Unions or even neighbourhood watch groups to create a resource that can benefit members of their communities.

In the case of stroke-survivors.org I propose two related solutions, both based on the same premise. 

With the limited knowledge I have of medical care, health care and follow on care, I’ve noticed the reference to patient advocacy. 

What does that mean? It means providing patients  with the opportunity to express their views, wishes, and concerns, and to protect their rights within the healthcare system.

It’s a very important and fundamental aspect of health care.

A step further

However, I’d go one step further - patients, survivors, family carers and other concerned parties - but particularly patients, must be allowed to have greater ownership of their recovery beyond whatever medical and technical intervention is required. 

I say that not to challenge the providers of medical and health care, but to complement it, and ultimately enhance the ultimate objective of the most complete recovery by the patient. 

The benefits of ownership and therefore “agency” are huge. Based on my own experience - the most damaging effect for me (and I appreciate others will have huge physical and cognitive effects greater than this) is post recovery, or even part through recovery, (as I am likely to be) is a feeling of loss of value and self worth.

Whatever you were, and however you define it, it’s likely that that role is diminished post-stroke - be it professional, work or business related, family related or even amongst friends. That’s even before we consider how we view ourselves. 

Peer to peer support, and being involved in it, can add refreshed purpose, focus and ultimately meaningfulness to a life that through no fault of your own has been radically changed. This is true of all people regardless of your role prior to your stroke.

A possible solution - at least a contribution to better times ahead for the people you relate to and yourself

I fundamentally believe that by creating peer to peer support groups, we, as survivors, can add huge value to our own communities, and as a result add significant value to our own feelings of self worth. We can reduce our personal deficit and that of the community or communities around us.

The solution is simple, both at an individual and collective, community level.

It’s about creating peer to peer support groups using modern technology. In the first instance it’s using Whatsapp - but that in no way excludes any other platform or network - public or private.

That’s where stroke-survivors.org steps in. 

We can provide access to existing groups of stroke survivors or at the organisational level provide knowledge and insight - including risk analysis as to how to best set up. 

As a non-profit organisation we want to work with individuals, health professionals, care providers, health providers (public or privately funded) and very importantly individuals to achieve our objective - the best possible outcome collectively and individually post-stroke.

(Incidentally this concept works across all communities of different medically related groups of patients, survivors, families and carers - we believe the concept of peer to peer support, of greater agency and patient/survivor involvement and specifically post event ownership has immeasurable benefits - more to follow).

Please contact me at paul@stroke-survivors.org  - I wish to engage with as many people as possible