Macarena - Macarena

Since 1992, I have employed my own personal assistants, and therefore I have always been managing a small business with staff on top of everything else I do.


I have a high support package which includes funding from Coventry City Council, and Access to Work as a personal budget and direct payment


Between 2008 and 2018, I had live-in volunteers from Community Service Volunteers, now called Volunteering Matters, who support me 35 hours a week, as well as living with me. I have had male volunteers from Germany, France, UK, Colombia and Taiwan.


I require assistance with almost every aspect of my daily living including cleaning, cutting up my food, dressing, filling out forms. going on holiday, hoovering, ironing, laundry, preparing meals, shaving, shopping, showering, taking medication, taking part in sporting activities, translating at meetings and washing up.


I use a number of items and assistive technology to assist me achieve a good quality of life including an Apple Watch, a range of bibs, an electric wheelchair, a Lightwriter communicator, a manual wheelchair, a Clos-o-mat toilet, a hospital bed, special mugs, adult nappies, a special office chair, plastic pants, plastic smocks, straws, swimming jackets, and walking helmets.


In early 2009, I experienced an acute nerve virus that required 9 months rehabilitation and after a fight to avoid residential care, I had overnight care provided by a total of 3 providers over the period funded by NHS Continuing Care. Despite being very unwell, I was able to comprehensively document the systematic difficulties I experienced, which resulted in a multi-agency review of services which improved the quality of support provided to many users.


The support I receive and equipment I use enables me to live an active and fulfilled life as a contributing citizen.