At this time of Covid-19, PAMIS and the PAMIS family carers and the family members they support would like to offer the PAMIS Digital Passport template free to others who support those who have complex health needs, whether they have a profound and multiple learning disabilities (PMLD) or not.
If you are a carer and feel that the person you care for would benefit from a Digital Passport, or if you yourself feel that you would benefit from one, then during the COVID 19 period you can use our series of videos and our template to teach yourself how to develop a Pamis Digital Passport. The passport can then be used on a computer, tablet or phone and, we hope will support you during this time.
The PAMIS Digital Passport was developed nearly twenty years ago by people who have profound and multiple learning disabilities (PMLD) and their family carers. People with PMLD communicate in ways that are not generally understood by those who are unfamiliar with them. Learning to recognise communication takes time and experience, particularly during illness or times of stress. PAMIS family carers, realising that their family members were struggling to make themselves understood, worked with PAMIS to develop the PAMIS Digital Passport- a simple multimedia approach to getting to know an individual with PMLD. Video and photographs easily show someone’s life, abilities and needs in a vivid way allowing the person to communicate with those who are unfamiliar with them and share their experiences in a way that is easily understood and easily conveyed to others.
Caring is an intensive and isolating role and many family carers provide this 24/7 with little, if any respite. Family carers frequently find themselves having to repeat the same information over and over again to new carers, practitioners and those who are unfamiliar with their family member. This can be un-necessarily harrowing and exhausting for people who have already given so much of themselves to the caring role. The passport can help alleviate this by it’s approach, and carers have used it to record their unique knowledge of the family member they support. This has been particularly poignant during Covid-19, when some carers have become unwell and have had to pass their caring role on to carers who are unfamiliar with their family member’s needs.
For practitioners, many of whom have no experience in working with people who have a profound learning disability, it takes time to learn how to communicate, interact and work therapeutically with this group. It is important that practitioners are supported to do this so that equitable care can take place and so that practitioners feel they are working within their values base. Practitioners need the tools to work effectively with patients. The PAMIS Digital Passport is one way to do this, particularly at this time, when practitioners are working with very different teams.
Sadly, because we are a small staff team, we can only offer one-to-one support to those supporting people who have PMLD. We do, however hope that the videos will help others who have complex health needs, or their carers, to develop their own passports. If you are interested in offering your time as a volunteer to PAMIS, or would like to make a donation towards our work, please click here.
If you are a family carer supporting someone who has PMLD, you can speak to the PAMIS Family Support Director for your area about the Pamis Passport, and they will direct you to the resource. Click here to go to the contacts page- please note that contact should be made by e-mail during this period of working from home.
If you are outwith a PAMIS Family Support area, or if you are supporting someone who needs a passport but doesn’t have PMLD; if you would like to develop your own passport, or if you are an organisation looking to support an individual, you can gain access to the resource by contacting Cat Jamieson – [email protected]
If you would like to use the PAMIS Digital Passport as a whole organisation, please contact Fiona Harper- [email protected] as we offer comprehensive and supportive learning and development packages that support you to embed the Digital Passport within within your teams.
You can watch a video about how a PAMIS Digital Passport works here.
We have also made a video about the impact of the PAMIS Digital Passport which you can see by clicking here.