2016 GSK IMPACT Awards: Promoting a More Inclusive Society (PAMIS)
People with PMLD often have physical disabilities and many are wheelchair users. PAMIS's digital passport programme supports engagement with family carers and people with PMLD, and the 'Changing Places' campaign ensures people with PMLD can access communities through appropriate toileting and changing facilities.
The other 2016 GSK IMPACT Award winners
- Age UK South Lakeland
- Body & Soul
- Carers in Hertfordshire
- Children North East
- Falkirk and District Association of Mental Health
- London Friend
- The Shakespeare Hospice
PAMIS work with people with profound and multiple learning difficulties who are some of the most excluded people within our communities. They have very limited cognitive and communication skills. They multiple is often that they have very severe physical needs, they have… often have epilepsy, respiratory problems. A lot of them have problems with eating and drinking and most of them need care 24/7.
We were in a very difficult situation where we didn’t have any care. When we went to see neurologists and doctors, nobody would really explain what the future would be for our son.
This photograph really just shows how difficult it was for the family. We couldn’t access anything. We couldn’t go out and about.
So in Scotland, there’s about 28,500 people that have a learning disability and there will be three to four people per thousand that will have a profound and multiple learning disability. They are often unable to do very much for themselves at all so they’re reliant on their family carers and their carers. Some of them may exhibit behaviours which challenge us but a lot of that is around their communication.
Storytelling has been an amazing way of really connecting communities because everybody likes to tell stories.
A sensitive story is a story that can be developed for an individual person who is maybe having difficulty coming to terms with a sensitive topic. So you can develop a multisensory story to help that person overcome the fear.
One of the other areas, people are saying, “How do you explain about life changes when somebody is growing up?” So there are a number of stories around what happens to young girls and young men as they begin to grow and that’s grown into a library of about 50 sensitive stories. It opens up something that we all take for granted but again, something that we can do collectively.
The Scottish Government is committed to reducing the stark health and social care inequalities that people with learning disabilities face, so that’s why we’re pleased to be funding the digital passport work.
To additional communication passports which many people with learning disabilities have, we’ve made it digital.
The digital passports actually empower the families in terms of them being the experts. So when someone is admitted into acute hospital, for example, it can be very difficult for the staff within the awards to understand what the person’s choices and likes and preferences are, but it actually puts the family member or the carer in a position where they’re able to educate the staff.
One of the big issues that came up with our family carers, when we were asking the biggest barriers to getting out and about was toilets. So we now have 128 changing places toilets in Scotland, and I think people are now understanding that actually it’s a human right. If it was made compulsory within the British standards, then we would hope that every public building would have a changing place toilet within it. Without that, we’re back to people being changed on toilet floors.
The work that PAMIS do is far reaching, so although it’s about individual families, the ripple effect is across whole organisations.
When Robert was a lot younger and in a way I was quite naïve and didn’t really realise that Robert fell into that category of a child that was profoundly disabled, but as my child has got older, a lot of difficulties have come into place.
PAMIS is at the other end of a phone for me. Over the past few years, if I didn’t have PAMIS, I think I wouldn’t be coping as good as what I do.
Your family have a lot of love for you if they don’t know the ins and outs of the caring world that you do whereas PAMIS are dealing with so many different people, the general public don’t really understand, so they’ve become part of my family.