For this blog series, we invited people who draw on care and support – who are also members of National Co-production Advisory Group – to reflect on the Making It Real statements.
In this blog, Jennifer Pearl reflects on the statement ‘I am treated with respect and dignity.’
Why is this statement important to you?
It’s really important that my carers and health professionals treat me with dignity and respect. Everyone should be treated this way – whether they are in a wheelchair or not. We are all entitled to the same rights and emotional support. My carers are working in my house, which is intrusive in itself. And it is hard enough being in the position I am in. I didn’t choose to be disabled and need positive support around me so that I can get on and live the life I want to live. And I can only do that when I am treated with dignity and respect.
Can you think of a time that you’ve felt this statement was really true for you in your life?
Yesterday I had my usual care. Marcia has been coming to my house for over six years to do my personal care. She knows me well and my routine. She has become part of the family. So much so that she knew before my husband when my daughter got engaged, and supported me to get ready for her wedding!
We also knew that the district nurse was coming yesterday, so Marcia had prepared in advance what she needed. It’s taken a long time but now the district nurse phones me before they arrive. They come when Marcia is still here as it’s better for me and easier for them. Marcia knows the best way to distract me when it’s time to change my catheter, which can often be a tricky thing to do. And as it didn’t go smoothly, we were able to discuss what to do next. On the district nurse’s advice, I phoned my GP and fortunately got a same-day telephone appointment and we now have a plan in place. Details like these – having a carer who knows me so well, the district nurse calling in advance and us all working together when things don’t go to plan – make a real difference and result in me feeling treated with dignity and respect.
What might you like to change in your life that could help this statement work even better?
I wish that all the services I use would treat me with dignity and respect.
For example, I still can’t get my wheelchair repaired in a timely manner. I really would like wheelchair services to understand the impact that this has on my life. If my batteries won’t last for the day or I have to wait for weeks for a new cushion, it obviously impacts on my life and the integrity of my skin.
Fortunately, I have the ability to fight my corner and complain to wheelchair services. But I shouldn’t have to, and there are plenty of people who cannot speak up for themselves too. It angers me that these people are treated like second-class citizens, which has a negative effect on their wellbeing. As a result, issues like these ultimately have a detrimental effect on the NHS, health services, social care, and the taxpayer, too.
What kinds of things do you think people who work in care and support should have in mind when thinking about this statement?
Most of my care and health providers do their best. But recently when visiting one clinic I witnessed two members of staff shouting at one another, and then a separate staff member raised her voice at a patient. I could see that they were all incredibly stressed. This had an impact on me. I was concerned that I wouldn’t be treated well, and worried that when I needed support I wouldn’t be treated with dignity and respect. As it happens, this wasn’t the case. Nevertheless, the experience left me stressed by the whole process. I know that these are difficult times for our health services but those in the profession need to be aware that their own public displays of stress can so easily have a ripple effect among patients in their vicinity.
Learn more by exploring the other Making It Real statements or downloading the Making It Real Guide.
