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Julie Sounds good to me Best wishes Jane Sent from my iPhone > On 4 Aug 2014, at 20:12, Julie Beadle-Brown <[log in to unmask]> wrote: > > Sorry to be late joining the discussion. Just wanted to add that I had a long chat with Martin Stevens the new chair of SCREC in Vienna and discussed with him some of the difficulties we had faced (which he hasn’t necessarily been aware of). Martin of course does come from an ID background and I think that at least on SCREC we may start to see some increased awareness. We did disagree on a few points but we did agreed that he and I would get together at some point soon to try and produce some guidelines specifically around research that involves people with severe and profound ID and autism (I.e. Those likely to not have capacity to consent and therefore require approval under the MCA). He was willing to discuss the way they look at things (not promising to change anything of course) but I think perhaps giving them the chance to consider the issues we are raising and come up with a response before going to BPS or anywhere else might be useful. > > I am happy to take to him the list of all the issues that people would like to raise and to start the dialogue with him, if that would help. > > Best wishes > Julie > > > ________________________________________ > Julie Beadle-Brown > Reader in Intellectual and Developmental Disabilities > Tizard Centre > University of Kent at Canterbury > Woodlands > Giles Lane > Canterbury CT2 7LR > Email [log in to unmask] > URL www.kent.ac.uk/tizard/ > Blogpersoncentredsupport.wordpress.com > ________________________________________ > <95748787-D693-4A6A-AFE3-19F386ECAEBA.jpg> > > From: Jane McCarthy <[log in to unmask]> > Reply-To: Jane McCarthy <[log in to unmask]> > Date: Monday 4 August 2014 18:39 > To: "[log in to unmask]" <[log in to unmask]> > Subject: Re: Ethics again > > Glynis > > Sounds good way forward to me > > What is the best way to collate the experiences? > > Kind regards > Jane > > Sent from my iPhone > > On 4 Aug 2014, at 18:22, Glynis Murphy <[log in to unmask]> wrote: > >> Agree Jane – and also Royal College of Speech Therapy >> >> How about we collect everyone’s accounts of good and bad experiences to send them? >> >> Glyn murphy >> >> From: Jane McCarthy [mailto:[log in to unmask]] >> Sent: 29 July 2014 17:18 >> To: Glynis Murphy >> Cc: [log in to unmask] >> Subject: Re: Ethics again >> >> Glynis >> >> Agree with similar experiences of lack of expertise and inconsistent decisions >> >> Should we take up at a higher level from the BPS and RCPsych >> >> Kind regards >> Jane McCarthy >> >> Sent from my iPhone >> >> On 29 Jul 2014, at 14:36, Glynis Murphy <[log in to unmask]> wrote: >> >> One of my projects was the reason the Appeals procedure was set up – we got turned down by two different ethics committees and at the time Dept of Health said that since we hadn't got thru ethics they would remove funding. I said no you jolly well won't! Where is the Appeals procedure? So we were allowed to go to a third for SOTSEC-ID – and we got thru the third. >> >> Meanwhile they set up an Appeals procedure. >> >> I also had experience in Lancaster of an ethics com turning down a student's project for stupid reasons, so I complained and we were allowed to go to a second where we got thru no problem. >> >> My view is that they are often very blooody ignorant about ID, rarely have a cline psych on them, and make very arbitrary and inconsistent decisions. >> >> Im not saying we shouldn't go thru ethics procedures but I do think they ought to work properly! >> >> glyn >> >> From: "[log in to unmask]" <[log in to unmask]> >> Reply-To: "[log in to unmask]" <[log in to unmask]> >> Date: Mon, 28 Jul 2014 15:44:45 +0000 >> To: "[log in to unmask]" <[log in to unmask]> >> Subject: Ethics again >> >> Have just had an unfavourable response to student NHS ethics application, there were some valid issues that might have been amendments but the core concerns showed significant misunderstanding of the ID population. Will resubmit but was wondering if anyone has any experience of using the REC appeals process? >> >> Dave >> >> Professor Dave Dagnan >> Consultant Clinical Psychologist >> Cumbria Partnership NHS Foundation Trust >> >> Tel: 01900 705825 >> Fax: 01900 608127 >> Mobile 07789 868259 >> >> We now publish the Cumbria Partnership Journal of Research, Practice and Learning >> http://www.cumbriapartnership.nhs.uk/volume-1-issue-2-autumn-2011.htm