Advocacy Awareness: I am not Invisible

Having suffered a stroke, Hazel experienced a number of failings in the care she received while recovering in hospital. Hazel’s advocate, Fran, describes how inadequate communication disempowered Hazel, making her feel frightened and vulnerable… and invisible.

“Hazel is a poet and when she had a stroke the importance of direct and respectful communication became even more clear. During her stay in hospital, Hazel felt excluded from important decisions that were being made about her recovery. This included examinations that were not explained to Hazel and that she did not consent to. Often staff would speak over Hazel, directly to her family and friends, while not addressing her at all. Cutting Hazel out of the conversation about her care and treatment made Hazel feel completely invisible.

Despite not being able to verbally communicate, Hazel expressed feeling frightened and vulnerable by drawing pictures which alerted her family and friends to the serious shortcomings in her treatment. It was at this stage that Hazel was referred to The Advocacy People and our advocacy journey began. As Hazel’s advocate, I was patient and supportive and over time Hazel was better able to articulate her concerns.

By working with Hazel at her own pace, I was able to get the information I needed to support Hazel to express her wishes and feelings at a meeting with the Trust. The aim of the meeting was to achieve improved care; Hazel wanted the Trust to be made aware of her concerns and to get answers and an explanation as to why her care went wrong. More importantly, Hazel wanted the Trust to change the care plan for stroke patients at the hospital.

The Trust responded by apologising to Hazel for the poor care she experienced and agreeing to put systemic changes in place to ensure that other patients don’t have the same negative experience. The Trust also acknowledged that poor communication had impeded the situation and that Hazel should have been involved in all aspects of her care and decision making. Through Hazel speaking up about her experience, the Trust was able to address these failings directly with individual staff and ensure that appropriate learning was put in place.

Hazel is steadily recovering from her stroke, acknowledging that advocacy really helped her to speak up and have her rights upheld. She says;

My advocate helped me think about what I hoped the complaint would achieve and was able to put this into words for me. My speech was different each time we spoke. If I was upset it was weaker, could be less grammatically sound or the vocabulary could not be used because of the aphasia, making the work more complex each time. We worked together to communicate everything that had happened and to explain to the Trust what needed to happen going forward. We worked mostly over the phone, but my advocate explained everything in a way that made sense and was able to put my feelings into words. My advocate understood how emotionally difficult revisiting the experience was and she gave me time to make sure I was able to get the most out of the complaints process.

Hazel recently secured an Arts Council grant and is in the process of making 12 short films which will document different aspects of getting better after a stroke. Not being talked to in hospital is the subject of one of these films. Making the complaint and making a difference to future care has been an important part of Hazel’s recovery. She will be exhibiting her work in September 2021.

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