Labels are for jars

I became a wheelchair user 17 years ago. I have had chronic lung disease since birth and after years of struggling to walk it became clear that to be mobile I needed wheels and constant oxygen. Now I drive a power chair with elevated leg rests. My oxygen is attached to the back of the chair and I have a nasal cannula.

It always amazes me that every time I see someone in the newspapers or on television using oxygen or nebulised drugs they use a full face mask. I think it must be for the sympathy vote or for dramatic effect. It would be impossible for someone to use a mask 24/7 as they would not be able to eat while wearing it. I look like Kermit the Frog if I am using a mask and have not yet found one that I can match bags, shoes and clothes to. Despite my illness, I am still a woman who likes to co-ordinate.

In the past 17 years I have been called a patient, a client and now I am given the title service user. It is often forgotten by those who provide services to me that they may well be the service user of tomorrow. We all have a right to be treated with dignity and respect.

Care is now supposed to be person-centred but I have seldom found this to be the case. I have found life with a long-term illness to be a battle. I have the intellectual capacity to work my way through a system that is filled with bureaucratic nonsense and “informed” service providers. I have to butt heads and lock horns with people who think they know what I need. Like others who have lived with a physical impairment, we have become expert in what we need. Far too much time and money is wasted by service providers who fail to listen to those accessing services.

Although I do encounter people who have failed to adapt to a changing ethos on disability, my GP, diabetic team and respiratory physicians are all wonderful.

Recently I had a home visit from a member of a telecare monitoring service. I wear a pendant, which I can press should the need arise, and I can get help quickly. I was asked to check the details they hold on me and was handed a piece of paper which logged my medical conditions and next of kin. It contained an urgent warning that I could be verbally aggressive. I made a copy of the sheet and was more gracious than usual with the departing worker. Then I made a formal complaint. I have been called many things in my time: academic, psychologist and service user. I am not usually prone to verbal aggression.

Labelling someone is dangerous. Should there have been a need to contact medical staff they would have been warned by the monitoring service of my likely aggression. They would then have informed other staff, say at A&E, and the cycle would have continued. I received a written apology but how many other people are treated less favourably because of an inappropriate comment placed on providers’ records. Labels belong on jars, not people.

Arlene A McKeever has physical disabilities and is doing a PhD