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Recently, I spoke with the charity PAMIS, an organisation who share the same passion and vision for myself and the OOVIRT team, of building a more inclusive society. In fact, PAMIS’s name stands for, Promoting A More Inclusive Society.

I have myself volunteered with PAMIS to help provide one of their many services offered to the families they assist. I can truly say they are a charity helping to make a huge difference across the UK to not only the directly supported families, but also as critical driver for people and places being inclusive.

The insights below are shared by, Fiona Souter, whose role within PAMIS is as their Information and Inclusive Communities Director.

Who is the organisation?
PAMIS, promoting a more inclusive society, is the only UK charity that works solely with and for people with profound and multiple learning disabilities (PMLD) and their family carers to ensure they lead valued, healthy and inclusive lives.

PAMIS have 26 years’ experience of supporting this group of people across their life span and are recognised as the experts in understanding and promoting their needs through research, development of best practice, education, campaigning and specific support. People with PMLD are some of the most marginalised and complex people that we have in our communities and PAMIS works in partnership with them to support communities to develop inclusive opportunities for everyone.

They are a key partner in the delivery of the Scottish Government Keys to Life Policy and also lead for Scotland on the highly successful Changing Places Toilet campaign. The organisation was highly commended in the ‘Cracking Campaign’ category of the 2015 Scottish Charity Awards for its Changing Places, Changing Lives initiative.

The campaign aims to ensure Changing Places Toilets are available in communities as without this facility people are totally excluded and isolated. They were winners of the prestigious GSK and Kings IMPACT award in 2016 recognised for excellence in Innovation, Management, Partnership working, Achievement, Community Focus, and Targeting Need.

Profound means deep, it means wise, it means expert and PAMIS passionately believe that people with profound and multiple learning disabilities and their family carers are some of the best educators that we have. They lead the organisation and all of PAMIS’s work is instigated by their ideas, issues and aspirations.

Why was the organisation set up? What was the vision/background to this?
PAMIS was established in 1992 with a small but important starter grant and one unpaid member of staff – Loretto Lambe (founder of PAMIS.) The original vision was one in which people with profound and multiple learning disabilities and their families were at the heart of our work.

The original direction and initiatives taken all stemmed from the expressed views and needs of the families. A Scottish Executive grant was then given to develop family support services in areas throughout Scotland and these services are still at the heart of realising our mission.

From these beginnings, PAMIS has gone on to develop a wide range of initiatives that aim to ensure that people with profound and multiple learning disabilities and their families are full and equal members of their communities, that their rights are respected and that their quality of life both social and health, reaches the highest standard.

What does the organisation do?
PAMIS offer a number of services to those with PMLD and the families and carers who support their day-to-day living. Services provided include

  • Supporting families
  • Information and advice
  • Learning and development
  • Community involvement – accessible leisure opportunities
  • Digital passports
  • Research
  • Multi-sensory storytelling
  • Campaigns and policy

A major component of the charity is our campaign to provide the facilities that help ensure those with PMLD can live life to the fullest. This centres around the Changing Places, Changing Lives campaign.

A lack of appropriate toilet facilities is a huge issue for the families PAMIS support which is why we are the lead organisation for this campaign in Scotland and founder and co-chair of the UK Changing Places Consortium (alongside Muscular Dystrophy UK.)

The lack of appropriate toilet facilities in the UK goes beyond people with profound and multiple disabilities and affects ¼ million people who need Changing Places toilets to get out and about and enjoy day to day activities that many of us take for granted. The changing Places consortium launched in 2006 on behalf of these people who cannot use standard accessible toilets. This includes:

  • People with motor neurone disease
    • Cerebral palsy
    • Older people – including people with dementia
    • People with Muscular Dystrophy
    • People with brain injury
    • People with Spina Bifida
    • People recovering from cancer or living with bowel and bladder disease
Why is accessibility & inclusion important to you?
I passionately believe in an equal society where everyone should have the opportunity to live as full and healthy a life as possible. People with profound and multiple learning disabilities are some of the most marginalised people in our communities and for the families we support, I see the daily struggle they face due to a lack of appropriate toilet facilities called Changing Places toilets.

This is the biggest barrier to people being active members of their community and PAMIS have worked tirelessly since founding the campaign to ensure there are more of these vital and life changing facilities in Scotland. It is so encouraging that we now have 187 Changing Places toilets in Scotland but there is still so much more to do to ensure that Scotland is a world leader in accessibility and inclusion.

What has the business done to improve/promote accessible/inclusive for their customers?
PAMIS can offer expert advice, guidance and support to any organisation or venue looking to find out how they can become more physically accessible but also how they can develop services and engage with people with Profound and Multiple Learning Disabilities as well as those who require Changing Places toilets. 

We can offer training courses to staff as well as professionals and family carers utilising a wide range of training and learning courses and opportunities which are very popular. We can also work with a venue to put together bespoke training or guidance.

We also:

  • Have a library of Sensory Stories which are available to borrow and we also offer training on sensory stories including an introduction to those who are completely new to using them
  • Work with event organisers to improve the accessibility of their event either with expert guidance
  • Host regular events for the families we support and have fundraised to purchase a charity vehicle which has been adapted to become a mobile Changing Places toilet meaning our events are fully accessible for all to attend
What can business/people support PAMIS?

Every donation large or small makes a real difference to the lives of people with profound and multiple learning disabilities. There are a number of ways you can support PAMIS.  You can make a regular donation by standing order or participate in one of our fundraising events.

Sign up to our mailing list to find out ways you can help support us. If you have spare time and enthusiasm we would love to tell you more about the range of volunteering opportunities we have available. You can support us if you have professional skills by donating your expertise and advice to support the valuable work we do.  

If you have rooms available to hire at free or low cost we would love to hear from you. You can support the delivery of training courses either by providing facilities or venue hire or with a financial contribution/sponsorship. 

If you are a business, make a commitment to share PAMIS information including fundraising events and campaigns. You can also choose PAMIS as your training provider for accredited First Aid At Work courses. There are so many ways to support the work you do and make a real difference.

More information is available at www.pamis.org.uk/.

Follow Claire D'All:

I graduated from the University of Dundee in 2016 with a Bachelor of Science Honours degree in Applied Computing. During my studies the field that I had a great interest in was web development however since graduating I have also become very interested in accessibility. I was born with Congenital Muscular Dystrophy and since the age of 3 I have used a wheelchair 24/7. Due to my disability I have always come across problems regarding accessibility, which is why it’s such a passion for me.

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