Thursday, 29 October 2009

To Cardiff

To sniff the air…

Reflections from a conference

To Cardiff, to sniff the air. Not the fragrant breezes of the South Wales Rivera, but a whiff of the air that parents of children with neurological conditions breathe here in the United Kingdom, in 2009.

The opportunity for this was by the Annual Conference of the charity Cerebra:

www.cerebra.org.uk

Croeso y Gaerdydd

Cerebra is a young. medium-sized charity, its four-million pounds’ annual turnover dwarfed by the hundred-million of so that Scope turns over each year. Cerebra is there for ‘brain damaged children’, whilst Scope regards itself as standing up for the rights of all disabled people, so neither deals exclusively with motor disorders. None the less, they operate across overlapping fields and one cannot help wondering whether this vigorous and cheery newcomer is the potential successor organisation to meet the needs of Scope’s one-time popular constituency.

The meeting was in Cardiff, ‘the city of arcades’ as it currently styles itself. In the late sixties for a couple of years I lived and worked a few miles down the road in its poor sister, Newport (Mon). Taking the train to Cardiff for the day really was going up to the big city, albeit in those days a rather seedy, pretentious place with the airs and graces of the capital of a Celtic Ruritania.

Now it really is a capital of sorts and has visibly upgraded itself. On a warm Indian Summer’s weekday the Victorian city centre had a real urbanity about it, and the rescued and restored arcades were a real delight.

Cerebra’s headquarters are situated in Carmarthen. This conference was held in what is the very heart of Wales itself, in an executive suite at the Millennium Stadium.

What does Cerebra do? Lots. Free to families. Its publications are very conscious of the concerns of families and young people themselves. They include a quarterly Bulletin. The charity also runs e-learning courses (free for parents, a charge payable by professionals), it has a multi-media helpline, provides speakers and a postal lending library, offers legal advice and even makes bespoke furniture and toys. The emphasis is very much on real, practical communication and assistance. There are personal, practical help services for children’s sleeping problems, parental ‘stress’ and form-filling, and a postal club for childre There is the start of a regional structure within England.

It also funds research.

I am impressed. All that said, however, the conference itself did suggest, against all this background of social, human activity, a gnawing contradiction beneath, peculiar neither to this disability charity but apparent pervasive in society as a whole.

The event

Not being a cerebral-palsy person there was probably no way in which I would had know of this conference had I not had been alerted to it by the International Cerebral Palsy Association.

This was an odd mixture of an event. Its first day comprised two very different occasions rolled together into one: formal academic presentations before lunch and very human, family business afterwards. It was specifically for the before-lunch session that I had attended, but I could hardly help be aware of the other half too. The small number of stalls on the first day ware directed to parents and there were no ‘academic’ stalls. I could not stay for the second day, judge for yourself who that was directed towards, from the online program:

http://www.cerebra.org.uk/OneStopCMS/Core/CrawlerResourceServer.aspx?resource=B453FF58-E4ED-41D2-BEC7-A581FCA27039&mode=link&guid=6f7f6bfacb064ff995ee700826e04e6e

I should not perhaps been surprised by the very ‘different’ atmosphere of this event:

  • the event was fundamentally for families of children with neurological conditions, and it did have a real family atmosphere about it
  • at the same time, Cerebra is much taken by ‘research’ and the event permitted the charity to air the results of its research investment.

Strange bedfellows together in the same room but it set me wondering about something wider, that I have seen in other disability charities predicating upon a given condition, adults’ as well as children’s charities, motor and non-motor conditions alike:

  • the real pressing, human needs of people whose lives are caught up in the condition and
  • the different-order phenomenon of trying to do something about the condition, usually prioritised in terms of prevention and ‘treatment’.

It is also hardly surprising that these two functions may enter into contradiction.

I attended Cerebra’s conference with the self-set task of trying to form a clearer notion of the world of cerebral palsy as it might be presented to parents in the new century, and perhaps try and glimpse this world as it might be seen by professionals and charity-wallahs in the field. Cerebra’s event might not be the ideal way of doing this (but what would be?), but it would be one way.

Anyway, it came with a very important attraction: attendance was FREE.

A morning of research. Cerebra funds five university chairs. I am not really sure what this means but Cerebra does seem to be paying for five university research programmes, in Barcelona, Birmingham, Leeds and Swansea… There were members of the teams of all these programmes there; My impression was that these were the major part of the ‘professional’ part of the audience, they and people from Cerebra itself. The rest of the audience, growing over the course of the morning, comprised families, including their children ready for the afternoon’s Award Ceremony.

Think about it. For academics it would present and interesting challenge in the presentation of their work. For the families, it would be a challenge too. I must say that in the event, every one behaved very well. As for communication… For the most part the researchers seemed to have brought their standard conference-presentation overheads and given their standard conference-style presentations of their work. I doubt there was a single specialist there who would have really understood the presentations of all the others, though they would have at least been familiar with the genre in which these were formulated.

A morning of research

The conference’s morning presentations appeared very much a stand-by-your-beds exercise for five big research programmes that Cerebra currently funds. Those who pay the piper hearing what was being done with their money, in the presence of some the presumed beneficiaries. A worthy aim, but it would be fascinating to learn what the punters made of it all at the explicit level, even just a couple of days later.

From what I experienced on Day 1 this was a happy occasion, visibly and audible enjoyed and appreciated by the great bulk of those who participated, meeting old acquaintances and making new ones. My understanding of Conductive Education conferences is that, over the years and around the world, this dimension of conference-going has constituted the major source of satisfaction from everyone involved in that context too, as I suspect is also the case in many or most other fields. In that respect, then I was attending a successful conference.

I was not there however, to enjoy myself but to participate in and benefit from formal conference proceedings, formal transmission of knowledge (and better, some interaction over this). In this respect, as perhaps in their ‘fun’ aspects too, conferences are systems, involving dynamics between such factors as physical environment, spoken and written information, presentation-audience relevance, ‘feed-back’ and interaction… I did not feel the system in Cardiff had altogether got this aspect right.

For example, the presentations were made from the end of a long, narrow room, there was no time/opportunity for questions/discussion, though this would have been hard in physical contexts, the nature of the presentations (formal and academic) and the requirements of many of the audience could have been on the whole better matched, the conference folder provided incomplete information either to help bridge this gap of to meet my more ‘academic‘ needs.

Carping? No, I have been involved in the arrangement of conferences enough to know some of the difficulties, enough to to know when thinks could have been better sorted.

Here is the programme of presentations as I experienced it, along with some of the notes of what was said, that I made at the time, and (in round brackets) my thoughts on this..

Equip de Recerca en Medicina, Barcelona

Research into neurological disorders resulting from complications during foetal development.

(Perhaps unjustifiably I tend to see the opening presentation of a conference as a bit of a scene-setter. Certainly that is how things work for me. There was the usual late start and the usual problem in getting the presenter’s overheads to work. When the local geekery got this one solved it was immediately clear that a small projection screen at the end of a long room hardly comprise an effective means of visual communication, not least if the little image is shown upside-down. All par for the conference course in my experience and I must say that the speaker dealt with these opening with remarkable aplomb and kept his audience well on side till all was ready and running.)

Once he was away I learned that 75% of neuro-developmental problems are of prenatal origin, I heard of postnatal neuro-development, and I was told about neuro-behaviour.

(I could not but think of the scene in that early film by Afred Hitchcock, in which the word knife is heard again and again, to the point of madness.)

Just to get the message home I was treated to another, different word-wave, lots of brain, brain perfusion, brain connectonomics… ‘Perfusion’ and ‘connectonomics’…? Don’t ask. They were not explained and there were no opportunities to enquire or discuss, in any of the presentations.

(The overheads included pretty scans to illustrate such matters. I was let in no doubt that I was in the presence of science, well, at least technology, which, as the kerfuffle that opened the presentation so neatly illustrated can be so very client to its human adjuncts.)

I gained the understanding that Cerabra’s research project in Barcelona involves:

1. ‘Understanding the problem’
2. ‘Diagnosis and prediction’
3. ‘Treatment’

I understood that the problem iss a medical one. I couldn’t really grasp the point on diagnosis and treatment, and a complicated diagram suggested that treatment might involve, inter alia, hospital/biomedicine/technology, biotechnology and society, but it all passed me by faster that I could take sensible note.

(I did, however, make specific note that not once did I hear mention of learning, education or any related factor. I am sure that everything being considered in Barcelona is important and to the good. I just had to wonder how people even more lay than myself with respect to the particular knowledge being aired could come to an informed critical judgment about its value to those who bring up children with neurological disabilities. Referring back to my headline purpose in attending, to gain a ‘whiff of the air that parents of children with neurological conditions breathe here in the United Kingdom, in 2009’, the conference had kicked off with a strong tang of the medical.)

Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham

Interventions for behavioural, intellectual, cognitive and emotional problems in children with genetic disorders.

(This second presentation would surely offer more firmly relevant ground. It came from a psychologist from, I think, the department of psychology (in my days it was being called a school, I don’t know the current word) in which I was lodged as a research fellow when we were working to get the proposed collaboration with Mári Hári off the ground in the mid-eighties. I cannot pretend that my relationship with that department was not without a couple of very unpleasant downs but, notwithstanding, here would be a presentation in which at least I would understand the language and perhaps recognise the models.)

We were instantly in familiar mainstream psychology country:

‘In-child characteristics interact with the environment and come together to maximise development’.

And there was to be no mention of ‘brain’.

Here the focus was on intellectually disabled children with rare genetic disorders and displaying certain disordered behaviours. Behaviours involved included autistic behaviours, problems of affect, hyperactivity, physical aggression and self-injurious behaviours.

Three good questions arise from this natural experiment:

1. Are certain genetic disorders really associated with particular patterns of behaviours?
2. If so what are the pathways leading from the biological to the psychological?
3. What are the implications for research?

Yes indeed, empirical investigation indicated that certain genetic conditions are associated with certain behaviour clusters. And the pathways from A to B? Here is one example of a ‘pathway’: a certain genetic condition includes a propensity ton stomach reflux and all the distress and anxiety that this may involve. It also results in rotten teeth, which in turn bring proneness to middle-ear infection… and so may lead to middle-ear hearing loss, which in its own turn may lead to further physical distress, never mind its likely effect upon language development and all the social miscommunication that may result.. No wonder a constellation of behavioural effects emerges.

(I was on familiar ground here, human dysontogenesis described as systemic, psychosocial effects a little behavioural in its expression for my personal taste and perhaps a little lacking in its transactional nature but still systemic.)

So what about the implications of this for research? In the specific area of rare genetic disorders more are being identifies all the time (present d prevalence of 309,000 in UK, ten million worldwide). The medical textbooks often describe the frequently experienced behaviours within these rare groups as an inevitable symptom of the condition. Thinking in terms of pathways (or as I would say it, thinking developmentally), taking into account the child’s wider well-being there was no need to consider that such behaviours were indeed insoluble.

And then a most familiar cri-de-coeur:

It is relatively easy to get money for evaluating interventions but it is so hard to get funding to develop interventions, funders do not want to put money into something that might not work…

(And my own especial cri-de-coeur for research, not least for psychological research: what are the mechanisms within science that so compartmentalise it in sub-sector, culture and time that the wheel has to be so continually reinvented?)

Inst. of Health Service Research, Peninsular Medical School, University of Plymouth & Exeter.

Measuring the participation & Social Inclusion of Brain Injured Children: What? Why? How?

(Now surely we were back on track towards the human problems of ‘neuro-developmental disorder’. Er…perhaps not.)

The Exeter Unit exists to provide parents of children with cerebral palsy informed evidence-based answers to their question about what might be available to help their children. Evidence comes from clinical trials. The Unit is concerned with the health service and social interventions (no mention throughout of any interventions that might be construed as educational, in any sense of the word).

The Unit has already produced fact sheets on three interventions raised by parents at two inaugural meetings, in Plymouth and Exeter. These are not on line yet but are available on request in paper form. An investigation into osteopathy for children with cerebral palsy is just about to be reported. Another on anti-epilepsy drugs for children with cerebral palsy is under way. An online forum will be an important source of future questions.

(Presumably, if you are a parent and you would like to know about the efficacy of Conductive Education, you should write in via its website

http://sites.pcmd.ac.uk/cerebra/main.php?g=adult&s=contact&c=contact

and trigger an investigation)

The rest of the presentation concerned the ICF, the International Classification of Functioning. Sort of low diagram modelled health conditions in terms of:

  • Body functions and mechanisms
  • Activities
  • Participating environmental factors
  • Personal factors

Associated with this (I think) I was also told of a model for construing different levels of functioning present in any given individual:

  • Capacity
  • Capability
  • Performance

(I think that I would understand the flow diagram as groping towards a developmental statement, without the connecting issues of learning give material substance to the arrows with which it joins its boxes. As for those different levels of functioning, where do you begin? Probably with so more than a shaft of learning! No wonder people in Conductive Education, and others, regard the ICF as such a primitive pre-paradigmatic diversion. And returning to my concluding sentiment to the previous presentation, why oh how can ‘science’ be so uninformed!)

Academic Department of Obstetrics and Gynaecology, Leeds Infirmary

Identifying predictive indicators for adverse outcomes in pregnancy.

(It was therefore a great relief to turn to a medical doctor talking medically about medical matters. Granting my total ignorance of what he was talking about I am sure that he did a most competent job. Maybe the rest of the audience was better informed. I can just about cope muself ‘also rhythms’, but what do ‘metabolomic’ and ‘protononic’ when they are at home? I suspect that they were not at all at home in Millennium Stadium that morning.)

Centre for Psychology and Counselling at Swansea Metropolitan University.

Stress in Parents and Carers with Brain injured children.Outline proposal by Prof. Ann Edworthy

This project, down the road in Swansea only began in September so is still finding its way. The presenter has already produced a book on the topic for parents. A small team has been recruited and will grow. The focus will be on managing stress and seems to be taking a broad, humane and social position:

In my view parents are let down by the very systems that were put there to help them.

(‘Stress’ is such a psychiatric concept, to do with ’mental health’ and ultimately medical A shame to pre-state the issue in this way.)

On conferencing

If the aim of this conference was that the charity, the researchers that it funds and a sample of its beneficiaries might have done some mutual informing and all come away a little the wiser, then I am in no position to judge how successful this was at the end of the two-day conference.

A three-way coming together, charity, researchers and beneficiaries is an interesting model. No doubt it is not unique and certainly it could do with some working on to make it more communicative, in every direction. One might start by questioning utility of the ’conference’ format.

Shaped up, this model might produce some long overdue and salutary learning for the world of Conductive Education, at each corner of the users-providers-researchers triangle.

I asked above, what in retrospect might the families who attended this morning event make of it explicitly. Even if, like myself, they took copious notes it is unlikely that they will have retained much. This is no particular criticism of them, the presenters or even myself. It reflects no more that the general unsatisfactoriness of conference presentations as a means of conveying durable information, even to fellow specialists in one’s own specialist field.

But what about the implicit message? That brings me much closer to the reason for my going. I smelled the air, and I did not like what I think that I sensed there: with exceptions, the pervasive background that things human are best understood along medical lines, alive and very well still in 2009. New millennium, new biolologism…

So where was education?

In the world of Cerebra it seemed barely to exist. Why ever not?

And where was Conductive Education?

Nowhere.

To be fair, subsequent enquiry found a parent who had been turned down by Cerebra for a grant to fund a CE placement, apparently ‘because this is educational’. She appealed to Cerebra’s Chief Executive and the decision was reversed.

Previous item onCerebra's Exeter Project

Sutton, A. (2009) Another chance to get CE on the UK map, Conductive World, 8 October.
http://www.conductive-world.info/2009/10/another-chance-to-get-ce-on-uk-map.html




No comments:

Post a Comment