Tuesday, June 23, 2009

Hearing from the seldom heard

Here is a new project for BILD (British Institute of Learning Disability). It focuses on people with PIMD and advocacy, rights, and complaints. I've only had a little look, but it looks like an excellent resource.


Wednesday, June 10, 2009

Invasive Procedures

The following event is to be held in Scotland tommorow - shame Scotland is a few hundred, thousand kms away... will feedback any further info I can get.

Invasive Procedures: Breaking barriers and achieving control for people with profound & complex disabilities
Discussion at the conference will contribute to the development of planned expert consensus guidelines on invasive procedures.
Individuals with profound intellectual and multiple disabilities have complex and significant healthcare needs.
For many, a wide range of invasive medical procedures are required including the management of epilepsy through the administration of rectal anticonvulsants; severe spasticity requiring Baclofen implants; the management of respiratory problems through the use of ventilators and deep suctioning; and procedures requiring non-oral feeding (gastric and nasogastric). Execution of these procedures by social care staff remains a contested area, with some staff refusing or not being allowed to carry out one or more procedures, leading to people with profound intellectual and multiple disabilities being denied services.
There is a recognised need for change in the way this vulnerable group receive care and access services, and in particular health services.
This is supported by Mencap’s Death by Indifference enquiry report and a number of other reports from across the UK, notably: Healthcare for All; Equally Well; Same as You Review; and Valuing People Now.
The research project “Practice and Policy in the Administration of Invasive Procedures for People with PIMD”, supported by the Scottish Government, is at present being undertaken by PAMIS’ Invasive Procedures Working Group. This work will be reported as background to the conference.
Speakers will address the changing needs of people with profound and multiple learning disabilities and the ethical issues underpinning invasive procedures. Family experiences will be addressed as will the training needs of parents and care staff.
Workshops will be conducted in order to develop a consensus on good practice in this area.

For further info go to the PAMIS website

Makes me think of some of the issues in Australia around training staff in the administration of intranasal midazolam for status epilepticus.

Monday, June 8, 2009

Arts and people with PIMD

Mencap have released an excellent video relating to the arts and people with PIMD. The video presents segments of practice from: Oily Cart, Project Artworks, Soundabout and the Unlimited Company.
Well worth a look