How did you first hear about/get involved with PAMIS?
I worked with ENABLE for a number of years in their Information Service, dealing with enquiries from families who had relatives with a learning disability, and professionals. ENABLE and PAMIS go back a long way together - in fact the PAMIS service in Glasgow was originally based in ENABLE's head office - so I heard about PAMIS that way. PAMIS later went on to establish its own office, first in the Pentagon Centre, before moving to Central Chambers in Hope Street, where we are currently still based.
What inspired you to work with PAMIS?
While I enjoyed my role with ENABLE helping families, most of our enquiries were short-term so we rarely got to find out how issues were resolved for the families - and most our work was via a phone help-line. The PAMIS service offered an opportunity to get to meet families face to face, and to have a longer term relationship with them, supporting them through the years. Because the nature of the PAMIS service also means running workshops, discussion groups and accessible leisure events for families, there's also an opportunity to meet with them - and their relative with PMLD - during the better times. I also remember visiting Carisbrooke Day Centre (while with ENABLE) and this highlighted for me the needs of people with PMLD and their family carers, and made me want to get more involved. So when the opportunity came up to work as the PAMIS 'Co-ordinator' for Greater Glasgow and Clyde (as the post was called at the time), I felt it was a chance not to be missed - and I haven't really looked back since!
What is your role?
As Director of PAMIS in Greater Glasgow and Clyde, my role is to provide support and information to families in this geographical area - whether it concerns services that are available, how to access equipment, managing an SDS budget - or any other number of issues. Our families have relatives with PMLD of all ages - pre-school, school age and adults, which means I need to link me into schools, day centres, social work teams, the NHS, carers centre, and various other services, to be able to help with issues and concerns, and to help build contacts and partnerships - to help our families get the best possible support for their relative - and for themselves (as family carers). I organise workshop throughout the year on issues that are important to our families (oral healthcare most recently) - and also SIG (Special Interest Group) meetings, where we gather families' views to feed into consultations, discuss ideas for improving or developing services, or simply put families in contact with one another.
What are your areas of expertise?
I'm interested in all aspects of my job and the PAMIS service. But I've taken particular interest in raising awareness of PMLD and the work of PAMIS to students and future professionals. This has involved me going out to colleges and universities to speak to students in various fields, including social work, learning disability and mainstream nursing, and orthoptics - and I hope to widen this further to include many other areas. It's involved me in linking students to our families, setting up 'Day in the Life' of family placements, which gives a student a chance to meet first-hand a family carer and their relative with PMLD, and understand their circumstances. This training role has also involved me in supporting students on placements in the PAMIS Glasgow office, linking them with families for longer term contact, and other PAMIS-related work. It's great to see how much students benefit from involvement with PAMIS, and particularly with our families - and how much the families enjoy being part of this support work, helping the professionals of tomorrow.
What does working at PAMIS mean to you?
I've been working with PAMIS now for just over 13 years, and I have loved my job throughout this time. It's a real privilege to be able to spend time with, and get to know, our many families - and to see those relationships develop over the years. The variety in my work is a great thing - I can be out on a home visit one minute, then attending a social work review to support a family, then visiting a school to speak to staff, or students at the university, or helping plan one of many accessible learning activities.... By being involved with local and national groups, I get the chance to highlight the issues for people with PMLD and family carers - to make sure these are represented, as well as to promote the work of PAMIS - and to build relationships and connections with other organisations and services. I help provide families with Communications Passports for their relative - and can help them develop a Digital Passport, a great new tool for use when their relative is accessing new services, going into hospital etc.
What is a typical day for you? Day to day functions?
I don't really have a typical day! I can be out and about at a family home visit, supporting them at a school review, or representing PAMIS at a local or national group. When I am in the office, I am likely to be planning or following up on a workshop or accessible leisure event, contacting families about activities we are organising, or following up on enquiries and linking in with other professionals to resolve issues for a family. No day is ever the same - and I consider all the work I do really important to the PAMIS service we provide.
Why do you think it’s important for people to know about PAMIS and the services they provide?
Many people don't understand what it means to have PMLD - because people with PMLD do not often have a voice. It's PAMIS' role to speak up for them. PAMIS is also important because the care role for family carers is huge, and many just do not have the time or energy to continually fight for the needs of their relative to be represented and addressed - so PAMIS needs to be there to help.