Soapbox: People with profound and multiple learning disabilities need specialist care in Scotland - Ann Maxwell

For anyone campaigning in Scotland the parliamentary Public Petitions Committee can seem like a daunting avenue. When I lodged my own petition this year, calling for recognition of residential care as a way that people with profound and multiple learning disabilities (PMLD) can lead happy and fulfilled lives, I did so more in hope than certainty that it would help.

That outcome is still uncertain, and Petition 1545 will come before the committee again this month, but I remain confident that members have begun to appreciate that there needs to be action in the short term that relieves the pressure that many families of people with PMLD are living under.

The current situation is clear. Families often face huge obstacles obtaining standards of care that meet the individual needs of people with PMLD in Scotland, meaning that they are left isolated and struggle to get the right support. Yet while every person with PMLD has specific needs, there is widespread confusion over a working definition of PMLD among support service providers. As a result, we don’t have an accurate idea of how many Scots with PMLD there are and all stakeholders agree that sufficient data in this area isn’t collected.

And because people with PMLD consistently aren’t recognised properly during assessment, their needs effectively become invisible. Public sector providers of support services don’t assess them effectively, so their numbers aren’t counted and their complex needs aren’t addressed. That means families often have to fight – and face repeated denials – before they are granted access to the right treatment and services, like residential care, that they know will help their severely disabled loved-one to thrive.

 For my family, the consequence is that my son Muir, who has Dravet’s Syndrome and turned 18 this year, will move from his current residential care setting at Donaldson’s School in Linlithgow to a residential facility run by Young Epilepsy (YE) in Surrey. We know YE will give him the best possible care until the age of 25, but it would be far better – and fairer – if we and other families in Scotland had a similar option closer to home.

That’s why I’m urging the Scottish Parliament to look at how best families can secure the specialist care they need in the short term, so that their needs, and the needs of our most vulnerable profoundly learning disabled people are met in Scotland.

Ann Maxwell is the founder of Muir Maxwell Trust