Author: Lorraine Howard
Lorraine Howard wrote to the Centre to share her experiences...
I am writing this to make you aware as to what has personally been happening to me regarding my care. In 2018 this should not be going on and this treatment of disabled and vulnerable people needs to stop!
I was born with Spinal Muscular Atrophy type 2, a Neuromuscular genetic progressive condition; at 47 I am doing really well because of the way I have been supported and funded to be able to have the right care for myself. I do not have the strength in my body to do that much as my muscles are very weak; this is why my carers do most physical things for me. I am a Mum, I do believe I am probably the first woman with my condition to have had a healthy pregnancy and baby 21yrs ago and have written a book on this to help others. I live in a council Bungalow in Coventry and have lived independently since 1990, I’ve had my ups and downs like every adult but that’s life. I married my childhood sweetheart 4yrs ago and we live very content happy lives. My husband has a disability himself and is a manager at Coventry Carers Trust Heart of England.
I have funding to pay for Carers/PAs mostly from the Independent Living Fund and a smaller amount from Direct Payments which is council funded and I have never had a problem. When news about the ILF closing was made known I was worried but just assumed all funding would now come from the council; everyone was to have an assessment and rightfully so, but didn’t think things would be this severe.
I was assessed by a young male social worker from Adult Social Care in February 2017. We went through what I thought was a proper assessment; I thought his questions were quite vague at the time and thought nothing of it. Two weeks later he telephoned me to tell me he was "cutting my care considerably" leaving me without night time care, just 3 half an hours to go to the toilet, eat and drink a day, one shower a week and just 10hrs to help with things like shopping and social activities. I was told I wasn’t eligible for 24hr care anymore. He told me I would have nurses come in through the day and I replied "I am disabled…..not ill!"
The social worker in question did not take anything into consideration, made so many mistakes it was laughable and couldn’t even get my condition right. As you can imagine this really upset me - to be told you will now have no life, to live a regimented life where a simple thing like go to the toilet or have a cup of tea will only happen when someone can visit you for half an hour slots was something I couldn’t get my head round. How can someone that has needed 24hr care all their life go to almost nothing? The cuts being made isn’t my fault. My care needs haven’t suddenly got better just because the government needs to save money. I have never in all my life felt so useless, such a burden to society when all I have is a disability through no one's fault; it’s the way I was born.
I received some legal advice and was told that I was entitled to demand the assessment was done again and a formal complaint made about the social worker. I did this and have had an apology from the Adult Social Team and they have agreed to reassess me with a female social worker who will have more understanding of my situation.
The next step was to have an Occupational Therapist assessment, as they thought there would be ‘gadgets’ out there to help me and take the place of a human, which was started in September 2017. The OT from the over-65s (I am only 47!) agreed that there is no equipment that would help me, she also witnessed my PA get me up and out of bed so she could see how much care I needed. I also contacted Spinal Muscular Atrophy (SMA) Support UK for some support and one of their support workers wrote a brilliant letter to add to my case outlining SMA and pointing out the health risks if my 24hr care was taken away from me. I also wrote a care diary for 3 days logging every single thing my PA did for me. Both the OT and her manager agreed I needed 24hr care and sent the assessment back to the Adult Social Team.
Another young Social Worker again from the over-65s came out to see me along with the same OT to do a new assessment. This Social Worker had no clue about the history of the case, hadn’t read up on anything, she was going in blind, surely she should have read up on my situation! I was asked yet again about all the care I needed and my night care and was told Adult Social Care do not in no circumstances pay for night care.
I am now to have an assessment with Continuing Health Care to fund my night care which I have agreed to, baffling when I don’t have a medical problem. I can not do anything for myself and especially once in bed, I need regular turning to be comfortable and if my husband was away I would be solely left on my own which would be a massive safeguarding issue.
My care has now got to go to a Panel - a Panel that has never met me to decide if I am entitled to my 24hr care! The social worker has also asked me if I would consider sleeping in a hospital bed which I found humiliating, I am an adult woman with a husband; it’s not an option that he should sleep in another room! I was also told by the social worker that I would have to have an assessment every single year now, I have to go through this upset for the rest of my life, it’s disgusting!
So now after a year of worry and anxiety I am still waiting to see what Adult Social Care decide.
This should not be happening, I should not be jumping through hoops and proving how much care I need. THE proof is that I have needed it since I was born and I will need it until the day I die. My condition is progressive, it gets worse. My muscles with age are getting weaker and weaker. In fact I need more care now than ever. It seems having a sound mind, being in control of my bladder and not having sores because I have had the right care in place for all these years is going against me. If I didn’t have my PAs I would have sores, I wouldn’t be comfortable, I would wet myself, I would have depression and would probably end up killing myself - as it’s a life I wouldn’t be able to cope with - and rightly so, would you??!
Adult Social Care only care about the situation right now, not how having no care would affect you in the future, which is not right.
It is not my fault the government is making cutbacks. It is not my fault I’m living in a city with major money problems - Coventry City of Culture 2021 should be looking after their disabled and vulnerable too! I’m just one case, there are so many people that are going through the same, the difference is I know how to speak up, appeal, challenge them and stand my ground but there are so many that won’t and I dread to think how frightened they are. I have even been to see my local MP Geoffrey Robinson and he promised me he would be in touch with ADS but I don’t know if anything came of it.
Thinking of the prospect of most of my care being taken away I have had suicidal thoughts and I am close to going to see my Doctor for depression. I am normally a very happy, confident, out-going person and this government and its rules are slowly killing me.
You’ll probably put this aside, delete or not even read this, but I need maybe just one person to take this seriously and make a change before this situation does take many innocent lives!
The publisher is the Centre for Welfare Reform.
Government Cuts are Slowly Killing Me © Lorraine Howard 2018.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.