Tuesday, 16 March 2010

Bulletin from the front

Progress and problems

Veteran conductive parent Emma McDowell writes, from the font line–

Last week I participated at a conference held by three major Health/Social Care organizations (two regional, one national) all of which have me on their variously named consultancy committees (in a voluntary capacity, of course.)

It was all in praise of how well we now follow the high and mighty notion of involving users and carers in our policy making and practice. The title of the conference was: “Is Partnership Working?” The Northern Ireland. Minister of Health, Michael McGimpsy, opened the conference,

In the afternoon I was in a workshop discussing the exemplary activities of a group working at trust level, within one of the four Northern Ireland Health and Social Care Trusts, the Southern Trust. (This H &S Care Trust is interesting from a CE point of view because it contains geographically the town of Dungannon, and within it the only existing CE Centre in Northern Ireland, the Buddy Bear Trust.)

The group that presented about its activities is called 'Wrap-around and their novel policy is that they are child-centred, i.e. 'Let us not take the disabled child to wherever we have services in the Trust area, but rather, let’s extend all services to all areas – within the Trust – and make it thereby available to the families.' They have established very good 'Public / Voluntary Partnerships' – something that we were once dreaming of in Chas McGuigan/Sutton days, as a means of introducing CE proper into Northern Ireland. Anyway, parents (young, enthusiastic and intelligent parents) are now systematically included in qualifying and extending the services. (A pre-requisite of this “wrap-around” approach is that the service should be locally available). It all sounds great, the participating parents are invigorated to work (free) to help (the Trust achieve best services for their children and young people, and also for themselves as carers. A lady doctor was the main presenter. She is all pals (first-name terms) with the parents and other participating professionals.

Or course I couldn’t just sit there nodding and congratulating, I had to navigate a few cautious questions towards the lot of young children with disabilities (particularly cerebral palsy) whose life could be best helped by an educational approach with which I happen to be rather familiar. I made a few appreciative remarks (in general, of course) about how we, parent carers know all about our own children and what’s best for them, and how good it is that we are now being consulted – gone is the old hostile attitude from the authorities that only they know best, not us, mere parents.

But I only said all these to be able to say that we STILL continue to need well-trained professionals, we rely on them, and rely on their keeping up with the newest research and development on their field, and so on. But what about “wrapping around” health and education services, in a child/patient-centred manner, so that we are REALLY helped?

I talked to the doctor afterwards. Of course she knew all about Conductive Education and the school in Dungannon. Unfortunately she didn’t approve of it (I guessed as much of her attitude)…'The results of the survey (20 years ago) didn’t show any difference…' etc.

I feel so happy that there are so many conductors out there now doing great work, so yes, we have done something over the past twenty or so years. But I also experience these, and similar, pangs, as described above. Not even in Budapest is the conductive pedagogy appreciated by all whom it could help, and doctors are the main culprits STILL!!!

An example is a recently diagnosed adult friend of my brother's who lives fives minutes from the Pető Institute, with lots of doctor-friends – whom I have had to advise, diplomatically, through my brother, to 'try out CE with his Parkinson’s!!!

The front line is the family. How goes it for yours?

1 comment:

  1. Cautiously, very cautiously, I sense we at Paces are making some headway again. We have had, these past few weeks, a series of unusually promising strategic meetings with external individuals and agencies. No promises, mind. And yet ....

    Could the biggest threat to Paces' progress be our own inability to let go the past and learn new tricks?