Common Pitfalls

  • Introduction
  • Clear Understanding
  • The Value of Experience
  • Closing the Gaps

Introduction

The care/rehabilitation pathway following a brain injury can be fraught with pitfalls.

At some point, all of us have been to a doctor or to see a specialist and come away surprised by something we didn’t expect or feeling as though we were dismissed or not looked after the way we would have liked.

We all also have stories about the problems we have had, for example, how we may have felt unsupported, undervalued, or misunderstood by family and friends.

By nature, we are problem solvers, so the brain is interested in those incidences where things go wrong or could be improved.

What we aren’t always good at is keeping things in perspective and yet the evidence is paramount that far more things work well, than don’t.

Turning problems into solutions isn’t always that easy because so many other complex issues come into play such as our emotions, opinions and attitudes. It can be challenging to see the wood for the trees and easy to fall into ‘victim’ or ‘woe me’ patterns of thinking without realising it.

The brain is also good at justifying our thoughts and actions, and sometimes this can interfere with our ability to be flexible.

Clear understanding

Unless someone offers us feedback, we can think that how we are doing things is working just fine.

Not only do we all have a propensity for efficiency, but as people, we take pride in doing our best and feel satisfied when we do so.

As individuals, we can’t think of everything; collaborative efforts and teams work well for this very reason. Whether we are treating, studying or living with brain injury to bring change, we must work together.

Medical systems and protocols are updated regularly, and patient feedback is a valuable part of this process. Experience and knowledge drive studies that bring changes.

Neuroscience is still, relatively, a young field of discipline and the study of how the brain is affected by injury is even more youthful.

This interest emerged about a decade ago with the study of sports-related injuries and scientific integrations with neurodegenerative disease.

While change is already happening, it can be slow to filter out, and because not everything happens at once, people still experience gaps in the brain injury care path.

The value of experience

Every experience post brain injury has tremendous value. Every single aspect of your journey that has caused you pain, has hurt you, has caused frustration or stress – every insight, every best path travelled – it all matters.

It matters because when you share what went wrong for you, someone somewhere will care enough to try and do something about it to try and make sure it doesn’t happen to other people.

The ultimate goal for all of us is to continue changing the experience of brain injury for ourselves, and everyone following behind us. We shouldn’t forget that change also affects the way our doctors and experts can work with us improving their experiences too.

This whole process starts with us. Researchers can’t evidence their theories unless they have enough people providing the data needed for them to prove or disprove an idea.

When the system works – we start to close the gaps. When we begin to close the gaps – we create the opportunity for change, and we improve care pathways.

We are all advocates; we are all ambassadors of the global brain injury campaign for change.

Closing the gaps

While patients, doctors and scientists all play a part in improving the care path, so too does technology. With these technologies the initial application or download can come from anyone, including being introduced by professionals.

For example:

  1. Gaps occur within the rehabilitation pathway when communication breaks down between a patient, their family, and specialist services.

A patient might wait for an appointment for months, losing valuable healing and rehabilitative time in the meantime.

The ‘NeuroProActive’ app, designed to facilitate communication, primarily aims to close this gap. 

  1. When a patient leaves a rehabilitation unit and returns home, the amount of input from experts reduces, and the family begin to take a more active role in the care of their loved one.

Communication between the family, the patient and professionals, can be fraught with problems. Also, the individual living with brain injury may be keen to work towards independence and not be entirely safe to do so.

‘Alfred,’ an app created by the team at Neumind, aims to provide support while connecting with everyone responsible for the care of the individual facilitating independence.

  1. Many people find themselves without any medical support or care after a brain injury. These individuals are usually the ‘walking wounded’ who, on the surface, appear to be capable of returning home and to life.

They are often sent home without information, and this can make them vulnerable on many levels. This website aims to fill that gap by providing both experiential peer-led psychoeducation and informed expert advice.

  1. Without support or information, progress can be very slow. People need professional tools which, historically, haven’t been available to them.

The BEST suite of apps and the cognitive training available from BEST Connections provides tools to fill this gap helping those further forward in their recovery to regain control over their lives. 

While these are very brief introductions to how new technology can help to bridge the gaps and prevent individuals and families from falling into crises, that people are doing something shows how often issues arise.

The development of ‘Goal Manager,’  also has patient needs in mind. By creating a software solution to be used by professionals to collate data and manage client progress through goal setting and rehabilitation, ‘Goal Manager’ helps different specialist services to collaborate.

Many further projects are in the planning process, and much thought and collaborative effort streamlined to close even more gaps.

While we know, we will see more tools become available and more protocols and practices updated, we also believe neurological problems in COVID-19 patients will ultimately further highlight gaps in service provision.