"beneficial if family were included in decisions"

My mother was admitted to Ellen's Glen for "end of life " care in July 2017 as following previous hospital stays and home care packages it was decided she should not be moved again and this was the best option for her.  We were happy with the decision and the day to day care she received seemed good.  Unfortunately, as my mother had not passed away after 6 months we were told she had to move on.  This was very upsetting as Mum was now settled and we know from having cared for her previously that this was not in her best interests.  The decision was made without discussion with family and as we were being excluded from her care needs, and my Mum no longer had capacity , my sister and I applied for guardianship.  The attitude of senior nursing staff then changed and visits to Mum became unpleasant.  We raised some matters with Hospital Management but did not receive answers to our concerns.  During this time a Mental Health Officer was appointed to do reports for the guardianship application and to our amazement the staff interviewed raised unfounded concerns about our suitability.  They had not even met my sister.

My Mum died before the guardianship application went to court and as a result we did not have to go through the process and more importantly Mum did not have to move elsewhere to die.

In general the care Mum received was good and the ward doctors were very approachable but we felt it would have been beneficial to everyone if family were included in decisions particularly as Mum did not have mental capacity.  Had we been included as clearly indicated in NHS guidelines we would never have had to go down the guardianship route and a lot of the issues we had could have been avoided.

To summarise, the main issues were the fact that "end of life care" should have meant until end of life, communication with families was poor and the fact that nursing staff have the power to give inaccurate reports for court which cannot be challenged.  These points need addressed by senior management.