Thursday, 12 March 2009


is home to the greatest number of Brain Injury Clubhouses of any state in America. The Clubhouse is a user-led model first developed in mental health settings. The idea behind it is that people with difficulties of whatever kind should be put in the driving seat, supported to run their own programme of services with a view to getting along in their lives. Clubhouses, as far as I'm aware, typically place emphasis on their members conducting all the administrative, managerial and maintenance work along side paid staff. They deliberately keep staffing levels low, such that the staff have no choice but to rely on the membership to get things done. A start to understanding Clubhouses is to read the Standards laid out in the website of the International Brain Injury Clubhouse Alliance website (below). If you do that, you'll know just about as much as I do. There are no brain injury Clubhouses in Britain. I hope to visit three Clubhouses - in Charlottesville, Roanoke and Richmond. (More: A big question for me will be this: who do they include? At Headway we have no functional criteria. That is, we don't exclude anyone whatever their condition. This means we have people who are, for example, tetraplegic, or who have formed virtually no new conscious memories since thier injury (in some cases many years ago). The principles of Clubhousing seem to presuppose a fair level of capacity among membership - the capacity to choose workgroups for example. I'm excited to find out how it all works.

is the base of Giveback Inc., a mentoring and training scheme that recruits people to learn and then pass on techniques for coping and succeeding in life after injury. I came across the programme while reading a paper by it's director, Larry Schutz, in the research journal Brain Injury ( In correspondence, Larry has been extremely friendly. He'd also heard about Headway, which I took as a good sign. The Giveback website describes the organisation as having created a 'community' that provides opportunities for self-help and peer support in the absence of long term support from the health care system. It also talks about offering support to people who have never had any formal treatment or rehabilitation. One of the most impressive elements of the Giveback programme is the number of people with brain injuries that have been recruited as trainers and programme coordinators, the implication being that a graduation process is an inherent part of the plan. In some support programmes, participants with injuries are actually prevented from taking roles as volunteers or staff. At Headway East London we have people with injuries at all levels of the organisation, typically on a voluntary basis, but a major challenge for us is that of increasing the support we offer people in taking up formal jobs (either within or outside the organisation).

is where I will (hopefully) meet Professor Edgar Kahn, inventor of Time Dollars and enthusiastic promoter of Timebanking. I saw Edgar speak at an event last year put on by the New Economics Foundation ( People with disabilities or illnesses drop out of the competitive job market. And as they do so, they drop into a category of little or no political value - the category of 'economic burden'. They are viewed as people who must be carried, paid for, subsidised for the rest of their lives. Timebanking is a formalised barter system that allows people outside the mainstream work market, people who have little money and are often excluded from society, to exercise valuable skills, reclaim self-esteem and reconnect with the community. Sometimes timebanks use a hard currency (like bank notes), sometimes they just record people's contributions on a data base. By signing up local organisations (cafes, cinemas, schools...) you can plug in resources and rewards (free tickets in exchange for free cleaning, free coffees in exchange for free leafleting...). Everybody wins. That's the theory at least. Timebanks have existed for a while in the UK, and have been used for all sorts of clever purposes. In D.C. they run Youth Courts on a Timedollar system, where young people arrested for crimes are tried by courts run by their peers. But as far as I'm aware there are none that offer specific support for people with brain injuries to join in. We're trying to set one up at Headway. I want as many ideas as I can get about how these things work. (More:

is a big city like London. Just like London it's diverse and multicultural. It has rich people and poor people, healthy people and sick people. It's also full of cars, just like London (and where there are cars there are accidents). When I visit I will be wanting to learn how (and how well) this comparable city supports people who've had brain injuries. My starting point will be the Brain Injury Day Treatment Programme at the Rusk Institute of Rehabilitation Medicine (550 1st Avenue). The institute has a long standing reputation because it is run by one of the most respected experts in contemporary rehabilitation, Yehuda Ben-Yishay, who was influential in developing what's known as the Therapeutic Milieu approach. According to Ben-Yishay, this approach, like that of Giveback, can also be described in terms of creating a small 'community' of survivors - a tight-knit team who support each other through the process of rehabilitation. I know less about this programme directly than I do the others. Most of my knowledge is based on extrapolation from Ben-Yishay's writings and what I've learned from similar programmes in the UK (e.g. the Oliver Zangwill Centre in Cambridgeshire I'm lucky enough to have been invited by Dr Ellen Daniels-Zide to sit in for four days in June. I'm looking forward to seeing the Day Programme in action, and witnessing some of its widely-reputed (and replicated) practices.

is a few hours north of NYC. It's the New York State Capital (for those of you, like me, who didn't know that already). It's also the base of the New York Neurobehavioural Resource Programme, a system funded by New York State to provide concrete, sustainable support in the long term for people with complex difficulties - in particular people with drug and alcohol dependency as well as brain injury. I met Mark Ylvisaker, one of the programme directors, last year when he visited HEL. He spent a day there talking about his work and seeing what we do. He also spent a weekend at my house, eating vigorously and providing wisdom and jokes in return for hospitality. I've read a good deal about Mark's work in the reasearch literature, and it resonates strongly with what we're doing at Headway. He and his colleagues have developed a number of inspiring devices and techniques for helping people with injuries overcome their problematic histories and start planning more hopeful futures. He also writes about the importance of acknowledging and working closely with people's existing motivations, the things they are proud of and that matter to them. My hope is to see how these principles are put into action. (More:;

is a little way west of New York. John Corrigan is the director of the Ohio Valley Centre for Brain Injury Prevention and Rehabilitation (OVC) ( and also the co-author of the super-pragmatic Whatever It Takes (WIT) model of rehabilitation ( What I like most about the work of the OVC is their willingness to challenge the conventional wisdom that professional services are inherently the best solution. One of the key points of the WIT model is that state funding infrastructures often limit people's access to the right kind of help and that 'natural' supports (those present in the community) can often last longer and be more pertinent than those provided by professionals. In a 2003 paper ( John and his team also demonstrated the bias in the results of many out-come studies caused by the high rates of participant drop-out: the fact that such studies typically end up reporting on only the better long-term outcomes because the large number of people who do worse (those with drug or alcohol dependency, those with mental health problems) tend to disappear. This certainly echoes my own experience - many of the people we work with at Headway have been failed by the state-funded services and some are off the map entirely. The big challenge in London is creating and organising the communities that might provide the long-term 'natural' supports the WIT model talks about. Hopefully when I visit in June, some of the OVC's Frontier Spirit will rub off on me.

is where President Obama worked for many years as a Community Organiser. It's also the home of the West Side Health Authority ( - a community based health programme run by residents on a not-for-profit basis (I believe). Every Block a Village, the moto of the Authority, is said to be inspired by an African proverb - that it takes a village to raise a child. Based on this idea, the Health Authority have developed a network of block-based resources, capitalising on the will of community members to provide for each other. This, like the Youth Courts, is a visit based on the hope of finding new and innovative systems for generating community in urban settings. I haven't arranged it as yet, but if time permits, I will.

Wednesday, 11 March 2009


Hi. This is a weblog following a journey from England to the United States, visiting a series of programmes for the rehabilitation of people with acquired brain injury - that is, people who've had accidents or illnesses causing injury to their brains.

You can read more about me, about the trip, and how it started, in the other sections of this blog, listed to the right.

If you are hoping to follow my travels, you can subscribe to this blog by clicking on the link that appears at the bottom of each post.

Tuesday, 10 March 2009



1. There is no cure for brain injury. At present, brain surgery and drugs are used to prevent damage, or lessen its impact. There is no putting back lost tissue. Some regrowth can occur naturally, but this isn't extensive. (More:

2. The concept of 'recovery' can be confusing in the context of brain injury. The changes caused, whether small or large, usually persist. In the case of smaller changes that either don't dramatically affect the person or can be more easily compensated for, the person may appear to have 'recovered'. In the case of more severe injury, changes often remain noticable for good or ill and the person appears not to 'recover' in the same way. But in both cases the changes are not reversed. Injuries have a persistent impact on the persons involved, being simply more noticable in some cases than in others. But this does not mean a person cannot be well, happy and successful after injury. Because in all cases also, the surviving nervous system continues to change and reorganise. The damaged tissue forms part of the context for ongoing change, but does not make future changes inevitably or exclusively bad.

3. The brain is an organ designed to alter its stucture over time - it organises itself in response to the environment (the one inside the body and the one outside, experienced with the eyes and ears and skin and so on). This self-organisation is called learning. Learning is the result of (the same thing as) the strengthening and weakening of connections between cells in the brain and this is a process that continues throughout life. Memories are formed, skills are acquired and improved, habits are hard to shake, useless (and useful) things are forgotten. Without this, none of us would be able to do anything new. After an injury (particularly one caused by trauma, by impact) there is a period when the brain can't form new connections, and so nothing is remembered or learned. But once the brain, and the person it's in, have returned to health, once they have recovered from the trauma, the process of connecting, learning and remembering returns - in all the tissue that is undamaged, still present and functioning. Different parts of the brain play different roles in this process of change, and in the other tasks of the nervous system (seeing, feeling, thinking, imagining, behaving, wanting, believing...). Injuries to different parts of the brain have different effects on the process of learning and remembering. As a rule of thumb, the more significant (the more dense, the more wide spread) the injury is, the more difficult learning and remembering will be. But all living nervous systems remain capable of responsive structural reorganisation becuase they are made up of cells that have no other way of being. (More:

4. All living people, therefore, even those with significant brain injury, are capable of learning, changing, responding and reorganising themselves to a greater or lesser degree.

5. Cognitive Rehabilitation is the process of helping someone with a brain injury learn things that are useful to them (reorganise for the better). This is similar to teaching. Just like in schools, in rehabilitation settings the approach to teaching and learning can take different forms. It can be approached according to a model of what works best, based either on research or presumptions or received wisdom. It can also happen without a model, or with multiple, perhaps competing models in play. It can be delivered in a one-way transaction, from master to pupil, with the roles of teacher and learner fixed, or it can be discovered in a responsive manner, through negotiation, where the roles may be flexible, reciprocal to some degree, as where two equals are concerned.

6. After brain injury, people don't become categorically different. They remain human and therefore will share common needs with other humans. They still want the same things other people want. These are: occupation, contact with other people, care, reciprocity (the chance to give as well as receive), and to be valued (by them selves and others). (More:;

7. Some recent research shows that, in the long term, the lives of people with brain injury are affected less by the original severity of their injury, or by the nature of any impairments they have to their function, than they are by the person's mood and their self esteem. (More: Neither the injury, nor any measure of its original impact, necessarily predict good or bad outcome for the person. A person's situation at any given time is dependent primarily on the question of whether their environment (both social and physical) meets their needs. This is true of people with and without brain injuries, of people who are well or unwell, of people of all abilities. The fittest, most able person relies continually on the support of others to live successfully, they just don't tend to notice because the support they receive is viewed as typical or normal. People who need more or different support in order to participate and succeed are often viewed as burdensome, but this is often due to a tendency to focus on what they cannot do and on the provision of 'care', rather than capitalising on the talents people have retained or on encouraging them to develop new ones. (More:

8. Successful rehabilitation practices are likely to be those that improve the mood and self esteem of their participants, those that enable them, somehow or other, to find occupation, contact with other people, care, reciprocity and value. Successful rehabilitation practices are likely to be those that help people compensate for things they find difficult, while encouraging them to do things they are good at.


1. To make a tour of brain injury rehabilitation programmes in the United States, deliberately choosing those that put forward a range of distinctive and successful approaches to the problems presented. To see programmes that are different from one another, but still comparably successful.

2. To learn from these programmes; to understand their overt aims and underlying principles; to discover their origins and track their development; to find out what they do well and what they do less well.

3. To ask participants in these programmes what is important to them - why they engage and what they get out of it.

4. To attempt to draw out any common elements that are apparent across the diverse programmes visited.

5. To bring what I learn back to London and use it to extend and improve the work of Headway East London and its affiliates.


Last year I applied to the Winston Churchill Memorial Trust for one of their Travelling Fellowhips, under the category of Rehabilitation of Traumatic Injuries. The trust provides something like 100 grants per year to people in the UK, across the arts, technology and sciences, and many more internationally.

During the 2nd World War, my grandfather, John Platts-Mills, was employed by Churchill to improve the public perception of the Russians, after Stalin joined the Allies. He did this by holding rallies and events encouraging people to collect clothing and supplies to send to the Eastern Front. Apparently the effort was such a success that it was impossible to send all that was gathered ( I am not aware of any further Platts-Mills' having worked for Winston Churchill, though I would like to encourage all of them, and everybody else who has the chance, to do so. He is a most gracious employer. My thanks go to him and the Trust for making the trip possible.

You can find out more about Churchill and the Memorial Trust at


I am Ben.

I live in London, the capital of the UK. I'm employed by an organisation called Headway East London (or HEL) (, where I work with people who've had injuries to their brains - usually through accident, assault or illness. People who've been hurt in road traffic accidents, people who've been hit over the head, people who have had infections or strokes. HEL has a community day centre in Hackney where most of the action happens. At the moment I'm involved in, among other things, developing and expanding what the organisation can offer - to the people who use the centre and to the local community. This is what has prompted the trip to America. I am in search of good ideas.

Tuesday, 3 March 2009



29th April - fly to New York City, spend a night there (where? with whom?)

30th April - catch the train to Charlottesville, Virginia, where my cousins live. I'll be passing through Philadelphia, Washington DC on the way.

May - visit three Clubhouses in virginia. These are: Highstreet Clubhouse, Charlottesville; Phoenix Star Clubhouse, Roanoke; The Mill House Clubhouse, Richmond .

Also May - visit Giveback Inc. Orlando Florida

End of May/Beginning of June - Washington DC, visit Edgar Khan, inventor of Timedollars, and witness the business of the Youth Court system,

2nd week of June - visit the Brain Injury Day Treatment Programme at the Rusk Institute for Rehabilitation, NYC

Also June - visit the Neurobehavioural Resource Project, and School and Community Support Inc., Albany NY

Also June - visit the Ohio Valley Centre for Brain Injury Prevention and Rehabilitation, Columbus OH; also make use of any other opportunities arising (possibilities include the West Side Health Authority, Chicago, IL; Timebanking Conference, Madison, WI

27th June - fly back to London and have a sit down.