When I told my Social Worker that I was in need of 24/7 care in my own home, she actually laughed at the prospect of anyone in my local authority receiving such a level of care and support. Read the following paragraphs and you might discover why I NEED round the clock assistance to function as part of my community.

***

22.00: I was struggling to stay awake as I finished off my latest email to the Welsh Government, something that I knew in my heart of hearts would probably be ignored again. The #SaveWILG campaign has come so far and achieved a great deal, but still those in control refuse to listen and take note to Welsh citizens. The fight continues, but it would have to wait until the morning because I could hardly keep my eyes open…

22.45: Comfortably in bed, I watched the news on television and caught up with the latest chapter in the Brexit escapade. I am pretty confident that I could do a better job than the majority of politicians braying in the House of Commons. The success I have made out of the #SaveWILG campaign proves this, although as always I get by with a little help from my friends…

00.00: I am watching Porridge on Yesterday yet again, as I am too scared to go to sleep as I know I will probably wake up again in an uncomfortable position. This has happened far too frequently over the last 6 months and I have had to call my dad to straighten my legs, re position me in bed and rescue the duvet which often falls to the floor as I wriggle and fight to get comfortable. Hopefully, if Fletcher and company can keep me awake a little longer, I will be out for the count until the crack of dawn.

02.50: I’ve been asleep since about 00.30 but being awaken by massive cramp in my knees as my legs have bent during sleep. It is most painful and I just want to fully straighten my legs, but I can’t. After much effort, I managed to free my legs from my groin area and get them into a 45 degree angle which is as much as I can muster. In doing so I have managed to slide down the bed and my pillow has fallen on the floor. I shut my eyes determined to sleep some more as I can’t call my dad again…

04.36: I wake up again. My legs are in agony. I check the time on my mobile and hope it is 06.00 or 07.00 so that I don’t have to wait too long for my staff to come in at 09.00. I look at mobile and am shocked to see that it is only 04.40. There is nothing I can do, but call my dad. This is far from ideal as he has arthritis in both hands and is in agony whenever he is having to assist me but those at WCBC do not care about my dignity or the dignity of my carers. It is freezing outside and my dad finds his way to my house – a five minute drive away – in perilous conditions. It takes him about 20 minutes to reach my house where he proceeds to straighten my legs, re position me in the bed and give me some paracetamol, which I swallow with water. I hope this medication will send me to sleep and I hope I wont be woken until my PA arrives in the morning.

07.00: Not again. I’m awake this time because my bladder is full. I reach for the light switch but my dad has moved it and forgotten to replace it – something that can be forgiven at 5 in the morning. It is still pitch black, but I really need to use my urinal. The trouble is I can’t see at all. I manage to sit up and grab hold of the urinal, but it is a real struggle to get it in the right position. I am too far gone to be able to calm myself down and resist the inevitable… another two hours until assistance arrives means lying helpless in damp and demoralising conditions. On the plus side, the Welsh Government are soon to be washing their hands of their responsibilities and local authorities across Wales can screw disabled people for all they can by providing them with inadequate care and support whilst squirrelling away funds meant for the most vulnerable in society.

I am OK now after my PA came to the rescue, but one thing is for sure – this sort of situation can’t go on for much longer. WCBC MUST face up to the evidence that I have gathered from my GP, Neurologist, Urologist, District Nurses, Physiotherapist and Occupational Therapist that I need constant support in my own home for my physical and mental well-being. This shouldn’t be such a battle and that is why we need to retain and improve the Welsh Independent Living Grant as not all people who receive WILG can stand up for their rights in the way that I can.

I just want my home to become a comfortable place for me to exist. At the moment, I think I would be better off being banged up in HMP Slade and sharing a cell with Fletcher and Godber…