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GREAT NEWS! My book, ‘Beyond My Control: Why the Health & Social Care System Need Not Have Failed My Mother’ is shortlisted for THE PEOPLE’S BOOK prize.

If you think my book is a worthy winner please vote before November at http://www.peoplesbookprize.com/section.php?id=2 Thank you.

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A complete stranger, a reader, got in touch with me via my website.

‘Hello Suzan, You don’t know me, but I have read your book – ‘Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ and wanted to tell you how much it has helped me.

My mother was in a care home and there were so many things that caused me anxiety and anguish about her care, I really didn’t know who to turn to at first, however, after reading the advice in your book I was able to get things moving.

There were so many issues we had to address that I was always expressing concern when things were not right for any of the residents, let alone my mother.  Eventually, they realised that I was not going to let them get away with bad care.  Again, we followed the advice in your book-we didn’t always visit at the same time or on the same day. And we saw different things happening, not all good!

I told the homes managers of my concerns. She was useless, so I did what you say in your book, I put my concerns in writing and I kept a copy. I thanked staff when they did well and told them when I knew [after reading your book] that things were not right, i.e. expecting mother to sleep on a wet, urine stained mattress [which smelt awful!] and be put to bed after tea time [although she didn’t always eat her tea, which meant she had to go right through until 7am the next morning to have something to eat]. She was put to bed at 6.30pm and lights out].

Similar to the good nurse in your book, this home had one excellent carer. She gave excellent care, empathy and understanding. She was with us at the end of mothers life having just completed a 14 hour shift, but didn’t go home as she could see that mother was nearing the end.

Thank you for sharing your story; it helped us at a time when we really needed it. The book helped my mother have a dignified death. Thank you. I am so sorry your mother did not have a dignified death. She would be proud if she knew what you were doing to help others. I will be thinking of my mother and your dear mother tomorrow, on Mother’s Day. I am shedding tears as I write. God Bless xx’

[Names omitted to protect identity].

My mum left me with a mission. A mission to ensure that no one will ever, ever suffer the way she did. A mission to get the message out there on what is good care and bad care and to raise awareness on how to report concerns if you or your loved one is receiving poor care, in a care home, nursing home, hospital or receiving care at home. ‘Beyond My Control: Why the Health and Social Care System Need Not Have FailedMy Mother’ is available in Kindle and Paperback and can be bought from various websites including:BMC jpeg

Amazon http://goo.gl/8wq4wo

My publisher’s website, Hammersmith Books ow.ly/uFIxW

4/5* reviews on Amazon ☆’Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother’ ☆http://goo.gl/dYiXJl

But you know it’s not about how many copies is sold. It is about getting the message out there, so why not ask your library to get copies in

Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother

ISBN no: 978-1781610282

 

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Care and Compassion

by Yvonne Newbold

In writing the book, I also had to do a fair bit of research, and I wanted to read other books on similar topics. Apart from anything else, having books to read gave me an excellent distraction at times from the task in hand of getting my book finished, holy moley, any excuse! It was a brilliant excuse really, a completely guilt-free one, because it was “research” rather than “procrastination”!

So I bought 5 or 6 books covering similar, but not identical issues, and surrounded my laptop with them on the dining room table. If you ever came to my house you would wonder how I ever got anything written at all with the constant comings and goings, dramas, crises, interruptions and Toby’s screamingly loud Barney the Purple Dinosaur videos inches away from my ears. That’s not to mention the constant stream of family and friends and Uncle Tom Cobbley and all that pop in to help or for a chat or a cuppa. Piccadilly Circus is an oasis of calm compared to my dining room.

There was one book that kept disappearing. I found it on the sofa, in the other room, on the stairs, even in the loo once, in our kitchen …. people just kept picking it up and wandering off to devour it’s contents. I now have a long list of people who want to borrow it, and most of them have now gone off and bought their own copies because they are impatient to read it and finish it.

Eventually, it stayed still long enough for me to get hold of it and read it too. That was a mistake…. because I couldn’t put it down, and I finally finished it in one sitting at 5am in the morning.

It’s called “Beyond My Control” by Suzan Collins. It is a truly harrowing read, but also essential reading for anyone, like most of us, who may at one time or another, have someone we care about dependent on hospital inpatient care.

It details the story of Suzan’s mother, an elderly lady with a physical disability but who was mentally still as sharp as a pin, and how a catalogue of appalling neglect, incompetence, apathy, poor nursing practice, cover-ups and error after error caused her completely unnecessary death following months of equally unnecessary agonising pain, misery and a total loss of dignity. It shines a spotlight on what is actually happening in many of our hospitals, how management has lost it’s way, how it’s all about shifting blame or covering up rather than taking responsibility to ensure it doesn’t happen again, and how ward staff often can’t see what is so blindingly obviously neglect that they are inadvertently delivering instead of care.

The most shocking aspect of all of this is that Suzan herself has worked in the Care Sector at a very senior level for over 30 years. This is a daughter who understands the system, who knows what constitutes basic standards of care, and who is intelligent and articulate and still, despite all of this, she was powerless. Suzan did everything she possibly could to help her mother access the level of care and concern that she both needed and deserved, and yet it got them nowhere, such is the size of the machine that the NHS has become. It begs the question, if Suzan couldn’t right the wrongs, what hope have the rest of us got when it’s our own vulnerable relatives in hospital?

Well, the book addresses this aspect too. Suzan has included advice and information about how to make the system work better for all of us to learn from. This is an essential book to read, and one that is best read when everyone in your family is well and healthy, please don’t wait until there is someone you care about already in hospital and falling through the cracks where the care should be.

Reading the book certainly got me thinking about the whole issue of care, compassion and how they are so often missing from everyday life on a hospital ward. Sadly, the nursing staff almost universally entered their profession because they cared so passionately about helping people, and lightening the load of the sick, the injured, those in pain and their families. On many wards up and down the country there are still huge numbers of caring, hard-working committed teams of nurses who strive to attain these ideals. What is hard to understand is that so many of these teams are working within an NHS culture that isn’t supporting them in their efforts to care compassionately about their patients. In some areas of the NHS, nurses are finding it just impossible to care properly because the culture is blocking their best efforts. It’s not the fault of the individual nurse, it’s the fault of the system, which seems to have sometimes lost sight of what the priorities should be.

I know from my own experience with Toby having been in hospital countless times, how a good nurse can make all the difference. A smile, a pro-active approach to pain management, a comforting word here and there, the time to stop and talk and make you feel like you matter – these are all things that reduce fear and engender trust and confidence, and once that happens patients are happier, and happier people actually get better quicker because their immune systems are stronger. It’s a no-brainer, really, but somehow the system often makes it impossible for even the best nurses to do these things that they can do so well, and that simply is unacceptable.

Until the priorities change and nursing staff are allowed to care for our families and friends in the way they want to, and have the time to notice when things are amiss, and their management adopts a more open approach to admitting failures and mistakes and working hard to putting them right rather than compounding them by pretending they never happened, it’s up to us to ensure the on-going safety of our hospitalised family and friends. We all need to be aware of what may go wrong and what steps we can take to put them right. Suzan Collin’s book, “Beyond My Control” may make you weep buckets as you read it, but it may also give you the skills you’ll need to advocate effectively on behalf of a loved one. Let’s just hope what happened to Suzan’s mother never ever happens again, and that things can and will significantly improve for everyone, patients and nurses alike.

http://yvonnenewbold.blogspot.co.uk/2014/01/care-and-compassion.html?spref=tw

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‘This heart-wrenching account left me with tears streaming down my face at one point.’
Great 5 ★★★★★ review. Click on link to read full review

http://www.amazon.co.uk/product-reviews/1781610282/ref=sr_cr_hist_5?ie=UTF8&filterBy=addFiveStar&showViewpoints=0

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A warning against apathy

This review is from: Beyond My Control: Why the Health and Social Care System Need Not Have Failed My Mother       

Beyond my control grips you by the heart strings and pulls you through a true story of frustration, anger, sadness and frequent utter despair. The book illuminates the dark corners of the overstretched, and at times entirely negligent, NHS and care services that is horrifying to witness. It follows the authors struggle to fight for her mother’s right for basic levels of care against what feels like a ruthlessly inhuman system that gripped her mother and processed her all the way to the end of life “Liverpool Care Plan”.

The book not only functions as a captivating modern story of a tragic struggle against ‘the system’ but serves to highlight the dangers threatening anyone in the receipt of care. The book introduces the authors mother from the outset, without relying on an unnecessary back story to the authors relationship with her to artificially pump the emotional impact of the book. The gravitas is in the eloquent and accurate recounting of the events leading to the mother’s death, allowing the genuine horror of the situation to serve as an honest vessel through which the message of the book is conveyed.

There are numerous moments in the book where your jaw will drop in shock at the 21st century care sector. If you think that we live in a transparent world where every action is taken to meet the basic standards that we expect for our loved ones in receipt of care, you are wrong. During your read, you will witness lying, negligence and carelessness at every level in the care and health services.

It is impossible not to feel great empathy with the authors frustration and sadness as she tries everything she can to improve the care for her mother. The feeling of hopelessness as the author repeatedly tries to rectify substandard care is suffocating at times as she is brushed off, ignored or just told her concerns will be ‘looked into’. The sense of the needless loss of life is incredible. The mother was admitted into hospital for a broken leg (as the result of negligent care), and through further hospital negligence and staff failing to follow the care plan, a pressure sore develops. We are left with a bitter taste in our mouths when the mother finally passes away in agony.

If you are a carer, in the receipt of care, or know anyone going through a similar situation, this book is highly recommended. The author does a great job of not only sharing her story, but giving you the tools and knowledge you need to best protect yourself and loved ones from negligence, which is summarised in convenient ‘what you need to know’ sections at the end of various chapters. While it is harrowing, it will certainly show you how important good quality care is and give any carer that works to good standards a sense of pride. In all, the greatest thing one can take away from this book is a warning against the apathy that exists throughout society when it comes to care standards. The author vocally rebels against this attitude from the outset reminding us that “accidents do not happen.”

http://www.amazon.co.uk/Beyond-My-Control-Health-Social/dp/1781610282/ref=la_B0037DXY46_1_1?s=books&ie=UTF8&qid=1385637071&sr=1-1

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“I’m doing an early hours reading session. This is so heart wrenching. I am very surprised at my overly emotional response thus far. It’s hard to concentrate on as I find that my emotional response is quite profound, so I end up rereading lots of bits. I’m really struggling just to write this  message due to emotional brain fuzz. My mind wanders to thoughts of you at the time, my own parents and wishing I could have been more helpful. I want to say sorry but I’m not really sure what for. This will be a most emotive read. Heroic effort writing this Suzan, you have my most sincerest respect. Sorry for rambling in a most unmasculine manner. I will continue reading now.”

“I finished it but I’m going to reread the last 2 or 3 chapters again in a moment though because I found my mind wandering about abuse and “what if’s”. It’s the sign of a thought provoking book.”

http://www.amazon.co.uk/Beyond-My-Control-Health-Social/dp/1781610282/ref=la_B0037DXY46_1_1?s=books&ie=UTF8&qid=1384098531&sr=1-1

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