Dedication sees changes for the better
I joined the Patients Council in November 1995. So much has changed in the Royal Edinburgh Hospital since then – mostly for the better! For the first few years, we held monthly open meetings which were well attended by many, but not all, patients. We ran a very successful pilot project offering individual advocacy on the old Ward 5 – a precursor of the present highly regarded individual advocacy team in the hospital. And we offered individual advocacy to people moving from long term hospital care into the community in the late 1990’s, a process which was documented in the publication in 2009 of our booklet ‘Stories of Changing Lives’.
The difference having an advocate made to our lives
I would like to start with some background. My wife has a chronic illness and disability which over the past three and half years has worsened making her mainly bed and housebound. I myself am her full time carer. I also suffer from mental health problems which make it difficult for myself to talk on the phone and I frequently get over- stressed about situations. Due to both our health problems communicating our needs and gaining the correct support has been very difficult. When my wife’s condition first began to deteriorate we were living in a privately rented two storey house that was totally unsuitable for someone with such a chronic illness. As my wife’s condition had deteriorated so much she was in a hospital bed in the lounge and I spent a year sleeping on the sofa as she couldn’t be left alone for long.
I got my little boy back. It’s crazy to think that I got my son back just because I asked
Janette is a young woman with a mild learning disability who was referred to her local independent advocacy organisation by the Children & Families social work department. Although her fifteen month old son lived locally with her aunt under a kinship care arrangement, Janette went round early every morning to provide all his care sometimes for 12 hours a day doing everything for him, feeding him, bathing him, changing him, etc. She didn’t listen to advice from her lawyer because she was content with the situation, thinking that saying anything would only make things worse. But then her contact was reduced, she was forced to babysit other kids in order to see her son, there were problems with other members of her family and quickly she had no-one on her side.
Getting on track
Charlotte had various issues in her life and was getting into more and more trouble until she sought help from her local advocacy organisation. Over time she was able to channel her negative energy into positive energy, working with her Advocate to put together a case which she was unable to do before. She says that Advocacy even kept her out of jail once.
Stand by me
A poem by Jo McFarlane
When I was broken, on my knees,
silenced by the weight of living,
on the brink of giving up,
an advocate came by
and deftly opened up my voice
by listening, simply listening.
Soon the cage became a key,
the words ran free
and hope took root within me.
For more advocacy stories and case studies, see our book A Voice Through Choice (pdf) and Stroke Advocacy Stories (pdf). To order copies of these books, contact us at firstname.lastname@example.org or phone 0131 556 6443.