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.
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.
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
www.mencap.org.uk/inthemoment
Accessible toilets ! YAY
Getting out and about requires access to bathrooms – this is never easy for people who require an adult sized change table and hoist. In the UK, the Time For a Change campaign is leading the way with getting more REALLY ACCESSIBLE bathrooms around see http://www.changing-places.org/index.asp
Looks like Australia is moving on this too.
Somebody at an NDS session mentioned this the other day.
Today the Victoria Infoxchange posted the following.
News – Fully accessible community toilets and baby feeding room in Frankston central business district
| Contributor: Kate Sommerville. Source: Frankston City Council, Department of Community Development. Posted: |
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A fully accessible community facility has been set up at 5 Keys Street, Frankston, close to the central business district and the Frankston waterfront.
Jointly funded by Frankston City Council and the Department of Human Services, this facility is the first of its kind in a community setting in Australia. It is located in a shopfront style building in a clean and attractive setting in the heart of Frankston. Accessible parking is available at the site. The Keys Street facility includes two fully accessible toilets with hoists and adult change tables, universal male and female toilets, a parent/child toilet and baby feeding room. One of the accessible toilets is available 24 hours a day from Keys Street. The other is only available during operational hours (see the attached leaflet). Both accessible toilets require use of an MLAK key which can be obtained from any member of the Master Locksmiths Association of Australia (MLAA) on the submission of documentation that the user has a disability. There is a charge of around $9. Information about registered MLAA locksmiths can be obtained by ringing 03 9645 9995 or 1800 810 698 (toll free), or visiting the MLAA website. The MLAK or universal key is a national key across Australia for disability related facilties including toilets and Liberty swings. The MLAK system was considered necessary to facilitate the ongoing safety of equipment. The toilets have no attendant but are cleaned and checked five times daily by city contractors. More information is available at the Frankston Visitor Information Centre on the waterfront or at the Civic Centre, corner Young and Davey Streets, Frankston. MLAK keys can also be borrowed from these locations on the submission of photo identification. Contact Name: Kate Sommerville |