Scotland leads the way in postural care

As a result of the ‘Got My Back’ conference in September 2016, Changing Our Lives is bringing family carers, disabled people and professionals together from across England to develop a national postural care strategy and accompanying set of standards. In preparation for this work, we visited PAMIS and the Scottish government as we were keen to find out about their ground breaking work.

PAMIS is a family carer led organisation that works exclusively with people with profound and multiple learning disabilities Scotland wide. They are driven by a commitment to put the family and disabled person first, co-designing supports for families and championing issues so that quality of life improves for the person with profound and multiple learning disabilities, and the whole family. Speaking with Frances and Kate, both incredibly proactive and positive family carers who lead some of PAMIS’ postural care work, we learnt about the ‘life changing’ effect postural care has had on their son and daughter, who both have an improved quality of life, enjoying opening Christmas presents and even head banging to Eminem!

PAMIS is working in partnership with the Scottish government to develop a national strategy for postural care. Meeting with Pauline McDonald from the Scottish government, we got a real sense of the journey Scotland has been on over the past 17 years. In 2000 The Same as you? was published, championing the government’s commitment to people with learning disabilities being included in local communities, having employment and living in their own homes. Whilst this led to improvements, the 2013 publication Keys to Life placed a real focus on health inequalities and the injustice experienced by people with learning disabilities and their families as on average people with learning disabilities still die 20 years earlier than people in the general population. This drive to ensure health equality underpins the Scottish government’s partnership working with PAMIS, where both parties, led by families are developing one postural care strategy for Scotland.

Thinking a little competition is always healthy, we asked the Scottish government if they were happy to meet with their English counterparts to share progress and ideas, and they were.  Both Changing Our Lives and PAMIS have also made a commitment to work together to strengthen the voices of disabled people and families on the issue of postural care.

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