"People with a profound learning disability teach you how to be adaptable and teach you how to work as a team."
Promoting a More Inclusive Society (PAMIS) have supported people with profound and multiple learning disabilities, as well as their families, in Scotland since 1992.
As with other third sector organisations, PAMIS are having to adapt to the new reality we are all living in. The COVID-19 pandemic has brought about major challenges for PAMIS as an organisation. One of the challenges PAMIS share with many other organisations at the moment is uncertainty around funding. With funding for some of their posts coming to an end, they are finding that more and more of their time is now being spent writing funding applications.
However, Jenny Miller, Chief Executive at PAMIS, instead highlighted the welfare of the people who rely upon PAMIS’ services as their main concern during these difficult times: “Our biggest challenge is how we maintain and support families so that nothing awful happens. Some families are really at the end of their tether. They’ve moved from a caring role where they’ve had support into, for some, becoming a lone carer 24/7… Families have told me that they are terrified and that the reality of (COVID-19) is their worst nightmare.”
Access to personal protective equipment (PPE) is a major concern for family carers at the moment. Although guidance has been released on how to obtain PPE, Jenny believes that not enough has been done to make organisations aware of their roles and responsibilities. Family carers are confused about where they should go for their equipment and there appears to be a lack of coordination about who is responsible at a local level. In one area the local carer centre were highlighted as the supplier of PPE, however the carer centre were not aware of this decision. Jenny suggests an implementation plan should be released alongside any future guidance to minimise confusion.
COVID-19 has made PAMIS’ services more vital than ever. Their Family Support Directors play an important role communicating with families and finding the information that they need. And this information sharing is multidirectional. As well as sharing information, PAMIS collect the experiences of the people and families they support and share these with the Scottish Government to inform future decision making.
However, PAMIS’ diverse range of services go far beyond information sharing alone. As the lockdown came into force, they quickly moved from face to face meetings with families to telephone conversations and counselling sessions. As an organisation, they are also keen to support personal assistants and paid carers who play a vital role in the support of families.
PAMIS have recently rewritten their postural care training resources which have been made available online. They are also continuing to offer other services online (this link will take you away from our website), including multi-sensory storytelling, creative sensory art therapy, music therapy and activity sessions designed by an occupational therapy student. The latter offers an online pack of physical activities which are both entertaining and practical, supporting people’s fine and gross motor skills.
As well as this, they are working on an online resource which will allow people to develop and update their PAMIS Digital Passport. This tool allows people with profound and multiple learning disabilities to communicate what is important to them, giving them a voice in the coordination of their care.
Jenny believes that the third sector has an absolutely vital role to play in Scotland’s response to COVID-19. She is concerned at the trend of specialist therapists being redeployed into acute hospitals to tackle COVID-19. Although these new roles are vital, they leave people that PAMIS support without the therapy and interventions that they badly need, potentially leading to serious health issues in the longer term. The third sector’s ability to adapt has meant that it has already become ‘an absolute lifeline’ for these vulnerable people, who would have ‘quickly become isolated as everything has shifted to tackling what’s happening in the acute hospitals.’
In terms of tips for other third sector organisations who are also having to quickly adapt, Jenny highlights the importance of creativity, listening and digital approaches.
Jenny stresses the importance of listening to the people you support, as they are the experts: “We say that profound means deep, wise expert. And, actually, I think we were probably able to adapt because people with a profound learning disability teach you how to be adaptable and teach you how to work as a team. The challenges that were faced by the families who have been isolated for years have taught us what is needed.”