"Going for gold" in community neurorehabilitation

Image_20210417_121658

Share this page

Share on linkedin
Share on twitter
Share on email

Cognivate is firmly rooted in our experience of developing a successful approach to community neurorehabilitation in the NHS.   Back in 1992 Jane Powell (our CEO, and neuropsychologist) and Richard Greenwood (consultant neurologist) were commissioned by the government to pioneer a new service for people who had been discharged home after their brain injury.  

So we set up the ‘Outreach Team’, based at the Homerton Hospital in London, and over the last three decades we have undertaken and published research showing how effective it is.  Jane and Richard have continued to be involved with it across all these years, and until recently it was led by Martha Turner, who is now Cognivate’s clinical director.  We are excited now to be bringing this approach into the independent sector, making it more widely accessible.

The key findings

Outreach clients make substantial gains across 3-12 months of treatment.

Typically, they improve by at least 25% in one or more important areas of their daily functioning (independence, socialising, work/education, psychological wellbeing) and their overall quality of life improves alongside these practical gains.

Outreach clients maintain their gains after discharge.

In a randomised controlled trial [RCT] we followed clients up 1-2 years after they were discharged, and found that most were still at least 25% better in one or more areas.

Outreach clients do better than people who have not received Outreach treatment

Our RCT found that people who were similar to Outreach clients but were not treated by the team did make some improvement – but it was much smaller (typically less than 10%)

Time since brain injury doesn’t matter

It doesn’t make any difference when someone sustained their brain injury – those who are many years post-injury benefit as much as those who are within months of their injury.

Cause of brain injury doesn’t matter

In our research, Outreach clients whose brain injury was caused by stroke, illnesses or accidents all made the same overall extent of improvement

Age doesn’t matter

It doesn’t make any difference how old clients are when they receive Outreach rehabilitation – for example older people who have had strokes can make as much progress as younger people who have suffered their brain injuries in accidents.

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.
This model was called the Contractually Organised Goal [COG] system – and this is one of the reasons we have named our new team ‘cognivate’.
 

2. Finding out if it worked: An experiment

 
Because the government funded the Outreach Team as a ‘model service’ for people with traumatic brain injury [TBI], it was important to discover whether or not it was helpful and to publish our findings so that they could guide the development of other services in different parts of the country.
 
Dr Greenwood and Dr Powell decided that the best way forward was to conduct an experiment to answer the following questions:
 
  • 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?
The experiment took the form of a randomised controlled trial [RCT].  This meant assessing a lot of people with TBI, and then for each person tossing a coin to decide whether they would become:
 
  • 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.
Importantly, the groups of Outreach clients and Controls were very similar to each other in terms of the severity of their injuries, time since injury, age, gender, and other personal characteristics.
 
To find out if the treatment worked, we needed to assess every participant (in both groups) twice:
 
  • BASELINE: before treatment began
  • FOLLOW-UP: after treatment had finished
 
We decided to follow people up 2 years after baseline, as by this time it would be a year or so after they had completed their programmes and so we would see only long-lasting improvements.
 
At follow-up, participants were contacted by a researcher they had not previously met and who did not know whether or not they were in the treatment group.
 
We expected that some participants in both groups would make some improvement in any case, because some people who were quite early after their TBI might carry on recovering naturally.  In addition, some people in both groups would probably get some help from other sources.  However if Outreach treatment is helpful, then clients should improve more than controls.
 
We used clinical questionnaires and rating scales which measured participants in terms of:
 
  • 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
(for those who would like to know more, the measures we used were the FIM+FAM, the Brain Injury Community Rehabilitation Outcome scales, and the Hospital Anxiety and Depression scales)
 

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.

There are lots of things we don’t know yet.  For example, we don’t know whether variations on the Outreach approach would also have worked.  However we believe that some of the important ingredients that makes it effective are:

  • the holistic interdisciplinary model, with therapists bringing their specialist perspectives together to get a well-rounded understanding and to develop integrated rehabilitation programmes tailored to the priorities and needs of each client
  • the systematic focus on real life goals which really matter to the client and their family
  • the frequent reviews which make sure that treatment does not ‘drift’ and go on indefinitely 

In any event, because of this strong evidence that the Outreach approach works Cognivate has adopted key elements of the model and brought it into the independent sector

Our emphasis on delivering gold standard treatments which are guided by evidence means that we are continuing to learn from new research in a range of ways:

  • all our therapists are allocated time to ensure that they are aware of recent developments, and they receive supervision from leading practitioners in their fields
  • we bring practitioners together to share expertise with each other
  • we invest in new technologies, including online facilities, which give our clients and therapists access to emerging tools and systems.