Margaret tells us about her personal experience of being part of the ALLIANCE's Involvement Network.
My life basically had little involvement or interest with healthcare until my son was diagnosed with Bi-Polar Affective disorder in March 1999 and my mother, before she died, had six heart attacks, the first being in 2000. The consequence for my health was that it deteriorated and I currently live with Chronic Fatigue Syndrome, a long term health condition.
Right from the beginning of my journey into health and social care, I witnessed inappropriate behaviours from clinical members in primarily hospital settings and in the delivery of home and residential care, all of these situations are designed to “give care and compassion” to patients
Various factors prompted me to apply to join a West of Scotland Research Ethics Committee in 2003 and as a Lay Member I was given a good introductory training in medicines research and medical ethics. I sat on the Research Ethics Committee for ten years and also sat for 18months on The Scotland a Research Ethics Committee which only deals with applications which include research with Adults with Incapacity.
In 2013 I joined the Healthcare Improvement Scotland Public Partner team. I sit on their Research Management Committee and also got involved with the Person Centred Care work. I attended the second national event held in the SECC and it was there that I met ALLIANCE staff, who invited me to consider joining the ALLIANCE.
In July 2013 I received a warm introductory letter signed by Chief Executive Ian Welsh and from that point to this I have been involved with many of the networking events and more precisely some of the work stream programmes, such as self management.
Towards the end of 2013, I joined the People Powered Health and Well Being reference group. My contribution to the group has led me to take part in Person Centred Health and Care collaborative work. As a group member I have been invited to many health and social care events which affect Scottish patients and carers and recently the 15th International Conference on Integrated Care had myself, our Director and 2 others attend.
Last but not least, I was introduced to the network of the European Patients Academy on Therapeutic Innovation (EUPATI). A programme of ALLIANCE activity to promote patient knowledge and understanding of clinical trials. I then travelled to Leeds for the launch of the UK National Platform where I learned of the Patient Advocates in Medicines and Research Development course which would commence for 50 students in October 2014.
I was accepted to join the course and to date I have worked through the on-line learning package and attended a residential school in Barcelona which was very intense but well worth doing as meeting fellow students and speaking about our understanding of the subject matter was invaluable. This course also marries in with The Prescription for Excellence work that I do with the ALLIANCE as a Patient Representative, the PfE work is led by The Scottish Government.
As a EUPATI student, I received an invitation to Irelands’ National Platform Launch in Dublin, where I met a few of my fellow students, but also received support from ALLIANCE Administrative Officer, Laura McCulloch and Director Irene Oldfather who were also in attendance.
I would strongly recommend joining the ALLIANCE Involvement Network as in my experience, the gains to a person’s knowledge of health and social care activity in Scotland is innumerable. These gains also include meeting new like minded people and finding out about the third sector and the whole host of work that is being done to benefit the Scottish nation.