Our vital Family Support Services are currently  underfunded. We know how much our support means to over 700 families we support and we need to ensure these services continue at the level of support we currently provide. In order to make up the short fall in funding we are focusing on fundraising for Family Support Services through out 2018/2019.

Our first fundraising event will be our Bungee for PAMIS in September. If you would like more information about this fantastic event please click here.

All money raised by people signing up to do one of the remaining Kiltwalks for PAMIS  will also go towards our Family Support Services. For more information please click here.

If you would like to support PAMIS, by taking part in one of our events, or by creating your own, we would be very grateful. We can support you with your event – just let us know how we can help.

We have set up a fundraising campaign on Just Giving. If you would like to fundraise for PAMIS you can create your own fundraising appeal by clicking on this link and choosing ‘start fundraising’! https://www.justgiving.com/campaigns/charity/pamis/family

We could tell you what we think our family support services mean to our families but instead we are going to let one of our parents explain. Pat has written beautifully on the subject of how PAMIS have supported her daughter Lauren, and her family, for over 20 years.

“Our family’s involvement with Pamis stretches back for more than 20 years. We were first introduced to Pamis when the support service was set up in Kirkcaldy and we have been very fortunate to have been the extremely willing beneficiaries of every service that Pamis has been able to provide.  As a result of our long involvement with Pamis, we have been able to witness the blossoming of Pamis into a wonderful organisation that has helped and supported families in the PMLD community considerably beyond our hopes and expectations.

While our relationship with Pamis originated with our seeking assistance with the day to day traumas and difficulties of living with a family member with PMLD, over the course of the last 20 years Pamis has gone on to provide us with a wide range of support mechanisms and choices that have impacted beneficially on every aspect of our daughter, Lauren’s life. As a consequence of that there has been a corresponding improvement in the life of the rest of the family.

We have been the recipients of support with advocacy, advice, research and training on too many subjects and difficult situations to enumerate but they include such wide and varied topics as health and wellbeing, guardianship, dental treatment, restraint, loss and bereavement and digital passports.

However, in addition to helping us with the difficulties that we encounter, Pamis has also introduced Lauren and the rest of the family to a wide variety of activities that are not normally easily accessible or affordable to people with PMLD. These include music therapy, storytelling, a Friendship Club, SOMA and Boccia, walking outings, wheelchair ice skating, swimming, rebound therapy and a Pamis Christmas Party.  Who knows what the next activity might be!  A very welcome and unexpected outcome of all of the many activities and projects that Lauren has been involved in has been that we are now very much more aware of Lauren’s interests, abilities, memory and capacity for learning and achievement than we would otherwise have been.

We strongly believe that Pamis has given our family not only a place in the PMLD community but because of the work that Pamis does they have given PMLD families a place in wider society in a way that would have been inconceivable 20 years ago. At that time we felt marginalised and isolated and that we didn’t have a voice but Pamis has worked incredibly hard to ensure that the voice of PMLD families is heard far and wide, whether at international conferences such as IASSID, in the Scottish Parliament, in the local or national press or on social media.

When a member of your family has PMLD your life very much consists of asking and often fighting for all sorts of things. It might be related to medical treatment, education, benefits, respite, education, care, therapies. The list seems endless.  What Pamis does for families, in addition to providing us with support, is to enable and encourage families to give something back.  They value our expertise and knowledge and acknowledge that we are experts in most matters relating to our children.  This is enormously empowering for us when we often feel undervalued, patronised and even crushed by the organisations that we have to deal with on a daily basis.  As a Pamis family member and more recently as a Pamis Board member I have been involved in consultation, training, research, conferences, presentations, fundraising, mentoring, advising on new legislation and campaigning.  I have been given the opportunity to speak at conferences as far away as Melbourne, Birmingham, London and Manchester about Lauren and her life.  As Lauren is non-verbal I am enormously proud to have been able to ensure that her voice is heard by so many interested academics, family carers and professionals.

In conclusion, Pamis is a listening organisation which cares deeply about the people it supports. This is because Pamis is made up of individual members of staff who are knowledgeable, insightful, caring, approachable, empathetic and experienced but also because Pamis as an organisation is always open to new ideas and to continually reappraising how it can best serve people with PMLD and their families both now and in the future.”