"Going for gold" in community neurorehabilitation

The full story:

1. How the team came about

It began in 1992 when there was very little help available to people after they had been discharged from hospital and in-patient rehabilitation units.  This meant that people and their families were often left to struggle with day-to-day challenges.  Some did not recover as well as they could have done; others became worse than when they left hospital, or became housebound, because they lacked the ongoing expert advice and help to overcome difficulties and grasp new opportunities.

After this issue had been raised repeatedly, the government allocated some funding to develop and evaluate a few ‘model services’.  One of these was a new Outreach Team set up by Dr Richard Greenwood and Dr Jane Powell at the Homerton Hospital’s Regional Neurological Rehabilitation Unit (the RNRU), which developed the approach now being used by Cognivate.  The key features, which are explained in detail in other parts of our website, were these:

• Therapists from all four disciplines [neuropsychology, occupational therapy, physiotherapy, speech and language therapy] worked together all the time as a team
• They visited patients in their homes to help them tackle problems they were experiencing in their everyday lives, in particular focusing on enabling them to be more independent, get out and about more, develop their social and work lives, and feel better in themselves
• Treatment was intensive and finite – it usually lasted for a maximum of a year, and the aim was to help clients make gains which they could sustain and build on after being discharge
• treatment programmes were goal-focused, with the goals being the outcomes of greatest importance to clients and their families
• programmes were organised as a series of contracts (or ‘blocks’). Each block was a contract between the client and the team, where goals were agreed and an action plan was set up. Towards the end of each contract a progress review involving the client, family members and the team led to a decision about either planning discharge or moving into another contract with new/revised goals.

2. Finding out if it worked: An experiment

• would Outreach treatment lead to better recovery by people with TBI?
• would any improvements be long-lasting?
• did it matter how long it was since people had sustained their TBI?

• Outreach clients, receiving treatment from the team [
• Controls, receiving whatever was already available in their area.  We put together a booklet of information for these people and advised them which services they might find helpful, but the Outreach team did not see them again.

• BASELINE: before treatment began
• FOLLOW-UP: after treatment had finished

• their independence within and outside the home
• their ability to organise their daily life their participation in social activities the amount of time they spent in employment (including paid and voluntary work, childcare, and education)
• their psychological well-being (e.g. loneliness, frustration, anger, boredom, fatigue)
• anxiety and depression

So what happened?

We followed up 48 Outreach clients and 46 Controls; the two groups were very similar at baseline.

On average Outreach treatment lasted for 6.5 months, but for some people it was shorter and for others it was longer.  In most cases it was between 6 weeks and 15 months.  

At follow-up:

• The Outreach group had improved more, compared with baseline, than had the Controls.  
  • The typical Outreach client improved by at least 25% on one or more of the scales measure independence, social participation, and psychological wellbeing.  For controls, the typical improvement was less than 10%.
  • The areas where Outreach clients did particularly well compared to Controls were in organising their daily lives and their psychological wellbeing.

• It made no difference how long it was since the person had had their brain injury

How have these findings been publicised, and what impact have they had?

The findings from this study were published in an academic paper: 

Powell J, Heslin J, Greenwood R (2002) Community based rehabilitation after severe traumatic brain injury: A randomised controlled trial.  Journal of Neurology, Neurosurgery and Psychiatry, 72, 193-202.

It has been recognised as a leading study in this field, because RCTs are very difficult and expensive to undertake – indeed, eighteen years later this is still the only one in existence in community neurorehabilitation.  A systematic review of the literature in 2015, in an eminent Cochrane report, highlighted this trial as one of the strongest sources of evidence that community rehabilitation after TBI is effective:

Turner-Stokes L, Pick A, Nair A, Disler P, Wade D (2015). Multi-disciplinary rehabilitation for acquired brain injury in adults of working age.  Cochrane Database of Systematic Reviews, 12, CD004170.

Our findings have also been cited by health insurance companies in the USA and Australia, to support their funding of similar rehabilitation provision in their own countries.

3. Does Outreach treatment work for people with other kinds of brain injury?

Because the team was recognised to provide a valuable and effective service, the NHS continued funding it and opened it up to adults whose brain injuries had arisen from various other causes (apart from degenerative conditions like dementia).  

This meant that we started to see people who had had strokes and brain infections as well as people who had suffered traumatic head injuries in accidents.

We continued to collect information about our clients’ functioning at the start and end of Outreach rehabilitation, and now have results for nearly 200 clients.  Of these, over half have had strokes, about a quarter have had traumatic brain injury, and the remainder have had illnesses or infections.

We used two measures:

• The BICRO, giving scores for independence, social engagement, and wellbeing [186 clients]
• A questionnaire called the QOLIBRI, asking people about their satisfaction with different aspects of their life (‘quality of life’) [88 clients]

We found that:

• Clients typically improved by at least 20% on one or more of the three BICRO scales
• Clients’ overall quality of life improved, on average, by 10%.  Nearly nine in ten reported an improvement of at least 20% in their satisfaction with one or more aspects of their life 
• Similar gains were made by people with stroke and traumatic brain injury
• Improvements were similar regardless of time since injury, except that those who were earlier post-injury made slightly more progress in returning to employment/study

This research is being written up for publication, by Dr Powell and Dr Turner with Outreach colleagues, at the moment.

4. Overall conclusions – and keeping things fresh

On the basis of all the research described here, we know that people with brain injury can benefit from rehabilitation programmes provided by a team of therapists once they are at home, even many years after their injury and regardless of what caused it.