In Part II, I ended by saying I wanted to look at the positives following a stroke. I accept entirely for some survivors, finding a positive might be a difficult task. In a sense, I can only talk about my own experiences, but they have to be put into the context of the wider experience of the stroke survivor community as a whole.

I’ve met many fellow survivors in the last two years, I’d love to meet more. One thing that strikes me is that the stroke experience creates a new version of the person you were, or you perceived yourself to be. It might be true of survivors of many other medical conditions and especially conditions that created an emergency situation. Talking to people with experience of heart related conditions, people brought together by brilliant organisations such as the Global Heart Hub, there is that similar camaraderie, a similar recognition that life changes post such an event. Rarely I have found anyone whose life returns to the way it was.

I say that not to shock or scare anyone, it’s just my observation, regardless of the strength of the recovery and the scale of the consequences of your condition, life changes. The good news is that it can change for the better.

However, it won’t change for the better by chance. It needs to be worked at, and possibly this work will be the hardest work of your life - at a time when you (and perhaps your family and carers) feel  - often correctly - you are least equipped to do so.

The key therefore, is to become equipped. Part of being equipped starts with the medical care immediately after the stroke or strokes and the therapy received and available to you post the immediate medical emergency has been dealt with. 

The rest is down to a number of parties including yourself, family, carers and most importantly the stroke community. The stroke community is such a valuable resource that (in my experience) remains largely untapped and unstructured. 

Given I am talking from the perspective of someone having experienced care in one or more of the most resource rich countries in the world, the above can only be more true of those in less fortunate or poorer resourced countries.

The question is how do we go about creating a better recovery environment beyond the point where medical and professional therapeutic care drops off?

Understandably, almost all health care systems have a limit to their resources. What's more, almost all prioritise on a strict needs based criteria. Health care providers determine a range of care they can offer, and prioritise that care and who it is given to. That may be entirely budgetary based - ie there’s a certain amount of money to spend, it might be outcome based - ie what is the value of such a treatment, or indeed both.

All of this is understandable given resources, cash, trained doctors, nurses, therapists, carers etc are a finite resource. However, what is less understandable is how little patient input is permitted in reaching those critical strategic decisions that determine what care and how much of it is available. I doubt it is unfair or controversial to say such a thing.

I believe stroke survivors can add huge value in being part of this decision process, ie being significant advocates within whatever healthcare system they use. This is a massive and separate subject in itself, but I flag it now, because if we are to have better outcomes societally and indeed individually, then patients and survivors have to play a much  greater role in all of the above. 

This ought to be a great benefit in the short term for those involved, but in the longer term for all stroke survivors. (The same is true across all subsets of patient care and their conditions) - it should lead to stroke-survivors being better equipped through better care offerings from health care providers.

Patient Advocacy

Advocacy is a huge subject and I want to address it at length in a separate article but in the context of making life after stroke better it is vital in the future. In the context of the individual, and this includes me, if suitably interested and have the time to advocate individually or part of a larger group, you are making a vital contribution plus engaging in something which (i) fills some of the gaps in your life and (ii) improves feelings of self worth and value.

Peer to Peer Support

No less important, but perhaps not as strategic, but with much greater immediate benefits to those participating is the growing number of peer to peer support groups being set up within the stroke community but also many other areas. For example St Thomas’s in London, has a brilliant group for people who may have experienced trauma as a result of having to attend ICU in the most difficult of circumstances. Similarly there are many groups of survivors from heart related conditions, forming groups to meet physically or online. 

In a world where care beyond the immediate medical and therapy care ceases, there’s often a feeling of dropping off a cliff. Stroke survivors in particular, given the likelihood of both cognitive and physical problems seem to be impacted acutely from the withdrawal of professional support. 

Projecting forwards, with higher occurrences of strokes universally forecast and care budgets not keeping pace with demand or inflationary pressures the need for peer to peer support will only increase. 

The positive for stroke survivors is that it is relatively easy to find such a group, or if one doesn’t exist local Stroke-Survivors.org can assist in the creation of such.

I can’t over-estimate the benefits of being part of such a community and the potential benefits for all as the concept develops into a natural part of a stroke-survivor’s recovery programme.

For me, it’s a hugely exciting (and challenging) opportunity to try grow this simple idea into something much more significant in the future.

So, looking for positives during recovery and beyond - they are out there for stroke-survivors, their families and their carers. Positives that give stroke survivors ownership of significant elements within their recovery and agency in that we can individually but more effectively, collectively influence policy and bring about changes for the better.

Yes life changes, and for some the change will be much harder (because of the impact of their stroke) but there are pathways, advocacy and involvement in peer to peer support are just two examples.

Personally, it’s given me some new purpose and is slowly improving and a return of feelings of self worth and value. From a well-being perspective, no matter the extent of your involvement, even the smallest involvement must benefit your mental well-being. 

That in turn assists your recovery, and just as importantly allows you to participate in the recovery of others.

Please contact me if you’d like to discuss this further at paul@stroke-survivors.org