How did you first hear about/get involved with PAMIS?
I worked within a day centre setting and we had problems finding accessible changing facilities. After some detective work, we found out about the early work that PAMIS was doing to try to install what are now called Changing Places toilets.
What inspired you to work with PAMIS?
Prior to working with PAMIS I had spent 10 years working alongside people with learning disabilities. Most of this time had been spent working with people with profound and multiple learning disabilities. Within the day centre environment, I had the opportunity to see how the person with PMLD and their family needed support as life could be challenging in lots of ways. When a Family Support Service role opened up within PAMIS, it seemed like the perfect step to being help to help not just the person with PMLD but their family too.
What is your role?
I’m one of the Family Support Service Director’s and I share the South Lanarkshire post with Lesley McLaren. This role gives me the opportunity to help families with any specific issues they have; difficulties getting their son/daughter the right services, managing their support packages and budgets, listening when things get difficult, helping them to prepare for meetings, discussing guardianship, help filling in grant applications, filling in benefit forms, finding holiday destinations and finding Changing Places toilets!
We also host a number of opportunities for families to come together, this can be through information sessions, workshops or fun and leisure activities. This year we have had Digital Passport workshop and drop in session as well as a fun activities such as adapted boat session at Strathclyde Park and a day trip to Blair Drummond Safari Park. Bringing people together helps families build relationships with other families and we see lots of peer support going on through this.
Just as important as working directly with families is our indirect work. We represent families and people with PMLD on a number of local and national groups and committees. Amongst groups I’m a member of here in South Lanarkshire, are the Carers Strategy Group and the PMLD group which ensures that we are sharing our families experiences across the strategic planning within statutory services.
Other areas of indirect work include responding to local and national consultations (I’ve recently responded to the NHS Lanarkshire healthcare strategy and the Scottish Government Social Security consultation) and campaigning – we’re always on the lookout for Changing Places toilets!
What are your areas of expertise?
Within the last few years here at PAMIS we have been able to secure local NHS Lanarkshire funding and Scottish Government funding to develop information resources and services related to postural care. This has meant that I have been able to develop an increase in my knowledge on body shape protection and can support others to do the same.
What does working at PAMIS mean to you?
Working at PAMIS has allowed me to build some great relationships with families and be there for them when times are hard but in fun activities too. I like the idea that that I’ve been able to reach out and touch a family at a time when they’ve needed support. I also enjoy the fact that I can constantly talk about people with PMLD and use the experience I have gained to do this at local and national levels.
What is a typical day for you? Day to day functions?
There is no such thing as a typical day for a Family Support Service Director! Today I’ve been calling some families to sort out dates for reviews and home visits, we have a drop in session for families creating their Digital Passports, I have an engineering student coming in to speak to families about a design idea she has for a comfortable chair and I’m finalising an end of year report for the Scottish Government.
Why do you think it’s important for people to know about PAMIS and the services they provide?
PAMIS has an exceptional level of expertise in providing support to families caring for someone with PMLD and it’s important to ensure that people across the country know that we are here.
What is your motto, or favourite quote?
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” The Lorax, Dr Suess