By S.Nicholls, Training Administrator. A Mum, and Carer
I became an unpaid carer back in the late nineties, when my son J was born with Cerebral Palsy, and when he was a little older, he was diagnosed with multiple and profound learning disabilities. It wasn’t until much later on in his life however, that I realised I was a carer at all. Initially, you are just Mum, and you do all the things any mum would do. As time changes, and children grow, they head towards their teenage years. The practical, and physical responsibilities of parenting start to change. That is when you begin to realise that you are a carer, because most teenagers will start to become more independent, and find their own ways of occupying themselves; going out with friends, sleepovers, concerts, gaming, or other social activities. As J is a permanent wheelchair user, and with his associated learning disabilities, he was unable to find his own ways of occupying himself, without support.
Professional care workers began to support J for short periods, initially when I was expecting our youngest son, and J was around 11 years old. It then increased to short domiciliary shifts for his morning and evening care, after I’d had major surgery a year or so later. Eventually when J lost his special college funding and left college at 19, he then began to have some day support as well. He had become frustrated with being at home with smaller children to annoy him – sibling rivalries! With there being little activities for him to do, and as my husband and I were both working at the time, he would go for his day activities to a local centre while we were at work. It worked well for our family for a short period of time. Although admittedly it was a battle to get the support that J needed. As many family members of a young person with a disability will tell you.
We had a mix of care workers over the years. Some amazing people supported him, who were fantastic with J, and also with our two younger children. They would make Christmas special, try to ensure that our family home, felt like our family home still, and they also helped us to understand a bit more, in terms of the practical elements; such as hoisting, using slings etc. We were never taught how to do that, and had to learn for ourselves. I am forever grateful to those staff, for the impact that they made into both J’s lives, and our family as a whole.
Sadly, we also had some care workers, who seemed inexperienced, or not fit for the role. This resulted in accidents that caused J to have injuries, damage to his wheelchair, and damage to our home - with sockets pulled off the wall once, leaving exposed live wires, and his wheelchair joystick control box to be completely knocked off - causing hundreds of pounds of damage to his private powered chair, and also leaving exposed wires. There were also occasions with hygiene issues, due to lack of awareness and Infection Control training.
Each time, an episode like this happened, I would wonder why a few care workers didn’t seem to understand how these things could have been prevented, or why they were not reported to us, or the managers of the care provider. It seems looking back, and having the experience I also have now, that it is most definitely down to a lack of good quality, face to face training.
On the occasions where my son had injuries, or I had reported concerns. It did not seem that staff involved had adequate First Aid training. One of the most important elements I have found myself, when having my own First Aid training for my role at work, is the responsibility of the person, to understand the importance of prompt, and essential First Aid treatment. This could be something as simple as a cold compress; a plaster, or cleaning and dressing a cut or wound, depending on the injury or health problem. Nonetheless, prompt treatment, or reporting of injury is vital.
Around 2014, I began to manage a small team of personal assistants for J. The hours started out at just 6-8 hours per week one to one support, to enable him to access social activities outside of the home, and eventually grew to 84 hours a week one to one support, as he moved into his own home in supported living accommodation, a few years later. I have found face to face training absolutely essential for his support staff. As J lives alone, his meals are often made in bulk and frozen. Having staff that have been trained in Food Hygiene, gives me complete peace of mind, that they are aware of all the protocols for ensuring food is labelled correctly, and used within the safe time periods.
J’s staff recently attended Mental Capacity Act & Deprivation of Liberty Safeguards training (MCA & DoLs). This was hugely important for me as a mum; to ensure his staff were aware of his need, for them to support him to make his own decisions, and also to ensure that decisions that are made, are made in his best interests. It is all too easy, even unintentionally sometimes, for society to make assumptions for people with a learning disability, and to also infantilize them. I wanted to prevent this, and ensure that his basic rights are always protected.
J feels completely at home in his lovely apartment, and is now approaching his fourth Christmas in his own place. Most years his Christmas decorations are up before the end of October! With each Christmas that approaches, the decorations have increased, and I cannot count the amount of light up stars he has acquired! He is happy and settled, and makes sure that he reminds us quite often, when he comes to visit, that he is not coming back home for good. We always joke, and say thanks mate – we love you too! But the reality is, he didn’t want mum and dad cramping his style. He didn’t want to be stuck in with younger siblings driving him mad, and he is happy, which makes us happy. He absolutely loves his apartment, and the independence he has gained. The staff that support him understand his needs, and most importantly, support him in the way that he wants to be supported. As a mum, this is the most I could ever want for him; J is living his life, his own way.
“As a mum, this is the most I could ever want for him; J is living his life, his own way.”
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