In this blog Neil Topping, a volunteer advocate for Oxfordshire Advocacy tells us about his support of Maria (not her real name)
My advocacy partnership with Maria, a nursing home resident began in March of this year after a referral from Social Services. Maria, a Portuguese citizen, had been diagnosed with terminal bone marrow cancer and had a life expectancy of 12 months. Some years ago, she had also been diagnosed with schizophrenia.
The partnership agreement centred upon providing support to Maria in accessing her Portuguese bank account, assisting her in managing her account on line, helping her to understand her care cost liability and reconciling her budget and providing information for her to decide on whether to sell or rent her property. From the outset, Maria accepted that her illness was terminal and she would not be returning to her flat.
In mid-June, I attended a meeting at the nursing home where Maria decided to sell rather than rent her property and the social worker confirmed that the Council Money Management team could handle the sale. It was also agreed that she would bring a representative of Money Management to the next meeting with Maria. I agreed with her that I would also attend this meeting and that provided that she was satisfied with the arrangements being made, the advocacy partnership would conclude.
Shortly after I returned from my holiday, I was contacted by the nursing home manager to be advised that Maria had just died. She asked me for any information that I could provide to assist her with the funeral arrangements and in a few days we were able to piece together some details of her life and some idea of her wishes as she hadn’t made a will. I concluded the partnership having satisfied myself that the nursing home would organise the funeral and that Money Management would deal with the estate and financial matters generally.
The partnership was made easier because Maria understood the severity of her illness and wanted to deal with the implications. This, of course, is not always the case with those who are terminally ill. However, I learnt at an early stage that we had to let Maria control the pace of her decision making process and let her take time to understand her options. I also learnt that afternoon meetings seemed to suit her best. It may have been due to her schizophrenia, but it took a little time for me to gain her trust. Therefore, throughout the course of our meetings, both the social worker and I asked her if she was ‘happy with the way things were going’ and how we were supporting her.
In future cases, I would check at an early stage whether or not the care/nursing home, has clear information on file regarding the clients wishes following his or her death. With cancer, life expectancy projections are difficult to get right. Those of us supporting Maria were attempting to deal with the issues facing her in a way that was sensitive and recognised her prognosis but, as it turned out, was unrealistic in terms of the time that was left to her.
by Neil Topping – Oxfordshire Advocacy Volunteer Advocate