September is Alzheimer’s Awareness Month and each week POhWER will be sharing a client story to show how we support people with Alzheimer’s to have their voices heard and their needs met.

Winnifred’s Story

Winnifred’s friend Ruth has Alzheimer’s disease and lives in a care home. Winnifred has power of attorney over Ruth’s health and welfare. Ruth was admitted to hospital and Winnifred discovered that a do not attempt cardiopulmonary resuscitation (DNA-CPR) form had been completed without Winnifred’s knowledge. Winnifred had received a copy of the form in the post and had noted that this had referred to Ruth having a husband who had been involved in the DNA-CPR decision but Ruth had never been married.

Winnifred contacted the ward and tried to resolve her concerns over the telephone with the person who completed the DNA-CPR paperwork, without success. Following a subsequent telephone call from a senior manager, Winnifred was advised that it was a mistake and to destroy the form. Winnifred felt that the staff involved were too dismissive and did not acknowledge the seriousness of what had happened.

Winnifred told her Advocate, Emily, that she would like to make a complaint. She said she didn’t feel confident writing a complaint letter and worried that she would struggle to focus on writing this because she is a carer for two elderly people and that takes up most of her time. Emily agreed to draft a complaint letter for Winnifred based on the information provided by her.

Winnifred received a written response to her complaint and was not satisfied with the outcome as she felt there was no guarantee that the same mistake would not be made in the future.

Emily explained Winnifred’s options and she decided she would like to request a complaint meeting. Emily explained what to expect at the meeting and gave Winnifred some suggestions on how to raise her issues. Winnifred had questions concerning the Mental Capacity Act and whether or not the Trust had been compliant. The advocate consulted with an Independent Mental Capacity Advocate and provided Winnifred with some guidance around the legislation. This helped Winnifred decide on the questions she wanted to ask in her meeting. Emily agreed to accompany Winnifred to the meeting and explained what her role would be.

At the meeting Winnifred received a more detailed explanation of what had happened. She also felt the face to face apology from the person involved appeared more genuine. The person who completed the form explained that she had reflected on her practice and as a result had changed the way in which she completes the DNA-CPR forms. She had also fed this back to the nursing staff so they too can learn from the experience and be aware of the importance of involving a relative, friend or third party in the DNA-CPR assessment process.

The Trust explained that they are currently undertaking implementation of the Gold Standard Framework to facilitate advanced care planning. Winnifred was told that the staff involved in this will be advised of the implications of this incident to inform that implementation process and reduce the risk of this happening again.

Ruth felt supported throughout the process and said she would not have progressed her complaint as far as she did without advocacy support.

If you would like to support POhWER to help more people with Alzheimer's like Ruth then please donate now.