Heartfelt, compassionate and emotional, readers cannot help but be moved by Victoria Scott’s thought-provoking novel, Patience.

Life for the Willows is no picnic. Every day brings with it fresh challenges, stresses and concerns for the family. Louise has devoted her life to caring for her disabled younger daughter. There is absolutely nothing Louise will not do for her child and she has grown used to putting everyone else first and herself last. Meanwhile Pete works abroad and he hardly ever sees his loved ones and feels like an outsider with his own family. Eldest daughter Eliza has also got her own worries as she is heavily burdened by heart-wrenching secrets which she must keep very close to her chest. Eliza would love nothing more than to confide in her family, but she doesn’t want to burden them when they’ve got enough on their plate.

Youngest daughter Patience observes the world while trapped in her own body. Patience has views, opinions, passions and worries just like everybody else. However, not even the people who love her the most and who would do anything for her know what really goes on beneath the surface. Her family makes all the decisions about her life and her body, yet Patience can only watch while they decide what is best for her. Patience doesn’t think that her life will ever change until her family gets the opportunity to take part in a gene therapy trial that could cure her Rett’s syndrome.

Torn between wanting to do what’s best for Patience and the fear that the risks will far outweigh the benefits, what will the Willows decide? Will they make the right choice? Or will regret and disappointment end up shaping this family’s future?

Victoria Scott’s Patience is a tale full of warmth and hope that explores the sacrifices people are prepared to make for their loved ones, the lengths they go to to protect them and the hope that sustains them when all seems lost and hopeless. Heart-breaking, poignant and honest, Victoria Scott’s Patience is an astute, engaging and intelligent tale about love, loyalty and family that is so beautifully written, it is sure to strike a chord with readers everywhere.

I wasn’t sure what to expect from this book. Judging from the publisher description, it isn’t exactly my usual kind of read. But something about the blurb reached me, so I picked it up.
And I am so very glad that I did.
This was an amazing story about the everyday pressures that face a family coupled with the stress of an incapacitated family member. It is a skillfully told tale that had me laughing and crying throughout.
I thought the author did an amazing job of detailing each family member’s situation. The chapters were written from four different points of view in no particular order or pattern. But it was never confusing.
This method gave the reader an entirely holistic picture of the family situation, which was more complete than if it had been only from one person’s perspective. This helped lend authenticity to the whole situation.
Moreover, it gave perspective into the lives of the three family members who had to deal with the situation at hand. And that is the crux of everything in the book.
Patience is by far the most unique character I have read in recent memory. I absolutely loved how she had a voice…even when she didn’t. That makes even more sense if you read the book. Her sense of humor also came through.
What struck me, however, is how easy it is to forget that people who can’t outwardly communicate can still have feelings and opinions. They just can’t get them from their brain to the outside world.
I thought about this a lot while reading because my father was ill for many years with a Parkinson’s-related disease. When he was robbed of his speech, I could still see in his eyes that he had more to say…he just couldn’t say it.
I think about the number of times my mom and I discussed things around him. We were always careful about what we discussed because we knew he could hear us. But after reading this book, I look back and wonder what he was thinking at those times.
Did he have an opinion that he wished he could share? Did he want to say something? Would he have made different choices than those that were made for him?
This is going to haunt me for a while, I think.
In light of this perspective in the book, I found it fitting that some complications stemmed from the simplest of issues. But Patience couldn’t express that. Very interesting, indeed.
I thought that the author was a little heavy on Louise’s martyrdom as it got to be a bit much. But I also understood why she was written that way. I did think that the way the individual stories were wrapped up was effective, as there were unanswered questions right up to the very last pages.
It was obvious that this was a personal story, because the emotions and events were told with such care that they couldn’t be anything but real. And that authenticity is what gave the story its heart.
I highly recommend this book. One of my top reads of the year.

A real eye-opener about the life of a family with a disabled adult child to care for.

Patience has Rett’s syndrome which has prevented her from living life to the full; her family have loved and cared for her, entirely unaware of how much she takes in of the world around her. Elder sister Eliza tries her best to live life for both of them, for their parents’ sake. Mum Louise copes on her own most of the time as Pete, their dad, works abroad for the extra cash it brings in, necessary to cover expenses. Now there is the chance of getting Patience on to a trial which may – or may not – improve her quality of life and this begins to tear at the very foundation of this family. What will they decide and how will it affect them all?

This is very different from my usual type of read, but it is really well-written with a good story as well as raising awareness of this dreadful condition. I sympathised with each member of the family and how Rett’s syndrome affected them, but over and above that it is a tale about family dynamics. A shining example of how alert a person can be even if they don’t look it! Each harbouring their own secrets, it is impossible to tell how it will end. An enlightening read and one I enjoyed. I’m very happy to give this one four stars.

My thanks to the publisher for my copy via NetGalley; this is – as always – my honest, original and unbiased review.

Incredible.
What a wonderful debut from Victoria Scott, it blew me away. We are taken into the world of Patience, a young lady with Rett Syndrome who needs 24-hour care, having a caring, compassionate family and support network. This normal, run of the mill family face some of the most difficult challenges in caring for Patience and eventually realise they are struggling to give her the quality of life needed. An opportunity presents itself that tears the family apart, each wanting what is best for Patience but each seeing things from a different point of view.
A chance of a cure via gene therapy seems like a miracle and Patience’s’ Mum is passionate that this is what they’ve been waiting for; her dad however questions if the risks are worth it; he is sure Patience is happy and they are managing.
What a challenging, heart-breaking decision to make. The characters were all so engaging, especially as we knew the inner thoughts of Patience and had that special unique insight her parents etc didn’t. Each character has their own struggles on top of caring for Patience, that adds extra pressures to their lives but also extra complexities to this story.
This book is at times heart breaking but thought provoking, it provides an honest insight into those living with severe disabilities and those who provide their care whilst challenging the perception of what a “good life” may be.
There are moments of light, laughter, and lots of love of all kinds. Victoria Scott has written this with intimate knowledge of living alongside this condition and I know it will provide education for others, like me, who knew very little of this syndrome. Her writing has compassion, heart and humour and it captured my attention from the first page.
I cannot recommend this book highly enough.

I have to confess I had some difficulty with the subject matter of this book, namely the young woman Patience, who suffers from Rett syndrome, effectively locked in her body, unable to communicate. It is well written, however I feel that the author was ascribing thoughts and feelings to Patience which she had no way of knowing that Patience would experience. I struggled with the juxtaposition of this, and the lighthearted, flippant, romantic comedy style of much of the story. I really felt I did not want to be ‘entertained’ by such a heartbreaking storyline, it got to me too much. This is an entirely personal view, and probably I will be in the minority of readers reviewing this book. Sadly it was not for me.
My thanks to the publisher and Netgalley for my advance copy of this title.

I really enjoyed this book. The story of the Willow family; mum Louise, dad Pete, and adult daughters Eliza and Patience. Patience is disabled. living with Rett syndrome, which we find more about as the book progresses. A happy soul, she has no speech, and as far as anyone knows, no understanding and a mental age of a toddler. However the story is told from the different viewpoints of the family members - including Patience. And we observe how much she understands, and how she is content in her own dream world. Being a permanent carer has worn Louise down and when she gets the opportunity to put Patience forward for a medical trial to reverse the gene that causes her condition, she is keen to go for it. Pete worries about the side effects and reasons that Patience is happy as she is. The family is being torn apart. Meanwhile, Eliza has her own problems that she keeps to herself so as not to add to her parents' burden. A very real story, of a family who care deeply about one another, but don't know how to show it. Thought provoking and it held my attention. #netgalley #patience

What an incredible story! Really different, sensitively told with some lovely humour, I thoroughly enjoyed the way the perspectives of the four main characters wove together to create a powerful and thought provoking narrative about family, love and the complexity and risk in the choices we make. Highly recommended.

What a fabulous read The author writes Patience story from four perspectives, her mum,dad .sister and also Patience herself and it is both beautiful and moving as Victoria Scott draws on her own experiences of living with a person with Retts syndrome..The family all have their problems and some secrets that make this a real page Turner, but they all want what is best for Patience and when they are offered some treatment that could make life better for her they all have decisions to make. A brilliant debut novel I absolutely loved it

A fabulous, sensitively-written novel. Patience has Rett Syndrome and is in her 30s. When a radical experimental gene therapy trial becomes available, Her parents disagree on whether Patience should take part, does she need to be 'fixed' and are the dangers too great? Although Patience can't speak she gets her own voice in the novel. Brilliant debut from a disability ally author.

Told from the perspective of 4 people ‘Patience’ is a moving story of a family living with Rhett syndrome, this is a fictional story
I did not know what Rhett syndrome was but this story tells what is like from the parents, sister and Patience herself what a eye opener of what the illness can be like.
A thought-provoking, compelling and entertaining read. I could barely put the book down until its equally heart-wrenching and heart-warming ending.. I know readers will absolutely love it

For someone non verbal Patience has one hell of a voice. That is completely down to the heart the author has put into the character in this very personal book.

Patience has Rett syndrome and this book illuminates the world of severe disability. From those that suffer to those that care for them and love them. It offers the family and the readers a glimmer of hope and also gives them a major dilemma. Do you fix someone to make them what you consider normal?

Featuring Take That and a protagonist who is both funny and smart, this brought a warmth to my heart and a smile to my face when her potty mouth was used to great effect (girl after my own heart). This book is an opportunity for readers to see the difficulties faced by the disabled, to elicit some form of understanding and empathy and show that underneath what you see often lies a superhero who battles evil every minute of every day.

I’ve thought for a while now that there are not enough books featuring disability. In my opinion they are the forgotten minority group and are hidden away almost as if people can’t cope with that reality being seen. There are 14.1 million disabled people in the UK they deserve a voice like Patience. I will leave you with one of my favourite quotes “good health is a crown worn by the healthy that only the sick can see”.

Told from the perspective of 4 people ‘Patience’ is a moving story of a family living with Rhett syndrome, this is a fictional story however loosely based on the authors own experiences as her sister has Rhett.

Mum Louise is the primary carer for Patience & gave up her career to look after her, she is made aware of a gene therapy trial to reverse Rhett & goes into overdrive pushing forward for Patience to take part.
Dad Pete is harbouring his own secret, working in the Middle East to increase financial stability and coming home every month or so, he is not keen on the trial
Sister Eliza is juggling a hectic personal & work life, trying to be the best daughter & to cause little upset
Patience herself, she knows everything that’s going on but just can’t speak to allow people to hear what she wants to say on all matters!

It took me a while to get in to this book however once I did, I couldn’t put it down.

I laughed & I cried….. the author has done a great job of balancing both… you really don’t know how this will end.

Thanks to the publisher & netgalley for the opportunity to read & review this book in return for an honest review.

This is a brilliant book, written from the points of view of Patience – a young lady with Retts, her parents and sister. When she is offered a trial of gene therapy, which could improve her communication and motor skills, her family have a hard decision to make as the list of side effects include cancer and death. I can’t recommend this book highly enough. It made me smile and cry, as well as wonder what I would do in that situation. A brilliant book.

This was a thought provoking book based on the authors real life experience with her sister who has Rett syndrome.
I loved how the story was told by the different members of the family showing their thoughts and feelings. It was a touching and sensitive story told in a caring and sometimes humorous manner.
In summary this book is full if warmth and humour and in my opinion is a must read.
Thanks to netgalley and the publishers for this read.

I was curious about this unusual story dealing with adult disability, written from the point of view of all four members of the Willow family. Patience has Rett syndrome which, according to an NHS site, is a rare genetic disorder that affects brain development, resulting in severe mental and physical disability.
The story spirals around the characters, gradually revealing their roles – carer, provider, sister, invalid. As the layers are loosened and revelations made to the reader, we learn of their frustrations and fears, what makes them tick and why they act as they do.
Author Victoria Scott presents a realistic, pragmatic and unsentimental telling of a difficult and emotional situation, with surprising humour in dark places. I found Patience an absorbing page-turner, with a hopeful conclusion.

This story is really inspiring and informative. I've never really heard much about Retts syndrome but I was genuinely curious to find out what I could when presented with the chance to read this book. It was written really well and gave me a real insight into what it's like to have this disability. I really enjoyed the story involving a thirty plus woman and her family members and surrounding care staff. I laughed and cried at high and low moments ,really getting into the story at it's most emotional.
The author Victoria has written this story in such a way that it will appeal to all, with the added bonus of finding out about Retts Syndrome . It writes like a novel with Patience, the main character, telling her views and opinions on what she thinks known throughout the story.
I've given it give stars because I really enjoyed it from start to finish!.
Thanks to Netgalley for the free ARC book for an honest review.

An amazing insight into the difficulties and struggles a family face because of a disability. Compassionately written looking at everyone's perspective in the family. A sensitive and captivating book that everyone should read.

Witty, warm and severely physically disabled Patience shares her story, alongside those of her parents Louise and Pete and sister Eliza.

#Patiencenovel follows the Willow family in the run up to and beyond a revolutionary gene-therapy trial. Louise struggles to get Pete’s approval or understanding, meanwhile Eliza has problems of her own - a broken relationship, the need to tell her parents that the wedding’s off and another surprise spanner in the works. And Pete struggles to keep the family finances straight. At the centre of it all is Patience, whose family love her to pieces but who has unwittingly created some of their biggest problems.

This is a charming story of love, family and the value of having a voice to share problems.

The story is based on many of the author’s own experiences of having a Rett sibling and perhaps for this reason, it’s searingly honest and raw in places.

I hope Victoria Scott has another novel in her, as her writing style and story-telling ability is excellent.

This is a thoroughly enjoyable story and thank you to #netgalley for a preview copy.

We meet Patience who suffers a seizure whilst out. Patience has Retts Syndrome and is invited to participate in a trial.


How far would you go to save the one person in your life?

The chapters are each told from a different perspective.

Had me gripped throughout and a thought provoking read.

This book will be used by myself in my lectures that deal with disability issues, as it concerns a young person ,and the student nurses really relate to this age group, which is not really surprising. A common question expressed by this group, concerns medical progress. If we can test for abnormalities, and can prevent so many diseases, where and how do these rare diseases develop? We look at the difficulties of a life spent dependent upon others and do exercises using wheelchairs, distorting glasses from the RNIB, various work experiences in care facilities, in an attempt to understand life from the viewpoint of a disabled person, but this book shows the stresses and strains that are laid upon the family as well, in their attempts to get Carers to help, organise respite care, how expensive the whole business of looking after a person with complex needs is, and how the Government at times, seems to go out of its way to complicate and frustrate.
Patience is a young woman with Rett syndrome, who is unable to communicate, but has a full understanding of what is said to her, unbeknown to her family. Her parents are exhausted, and cracks are starting to appear in their marriage. Her sister, Eliza, feels a great weight of expectation has been placed upon her to have the life that her sister is unable to enjoy, and also, to provide her parents with the hopes and dreams that are unable to be fulfilled by Patience. Eliza, however, has her own problems, that she is scared to share with her parents as she doesn’t want to disappoint them, so she confides everything to Patience, as she keeps all the secrets!!
The chapters are told from a different characters viewpoint, they reveal their difficulties and their determination to put on a brave face for others, but this can be at a terrible price for both parents and siblings. Siblings often feel very conflicted, they are ignored due to the needs of the disabled sibling, yet they are also part of the family, and they don’t want to cause hurt, they can become quite isolated, even in the middle of a big family.
This heartwarming and heartbreaking book asks you to put yourself in Patience’s shoes, if there was a treatment that would give an opportunity to reverse this syndrome, albeit with risks, what is best for Patience? Is she content in her own world, do we accept people as they are, or do we strive for perfection every time?
I am also a carer, illness dominates my life. The only time I seem to leave the house is for the Doctor, Hospital, Physio and of course, endless blood tests!! FOMO is a real thing, but you have to grit your teeth and carry on, for both yourself and the afflicted partner. Luckily, I can do most of my teaching online, apart from the practical parts of the courses.
This book is a marvellous read, and I hope will give a valuable insight into the world of the disabled person. I would like to wish Victoria Scott and her family all the best luck in the world for her bravery and honesty in sharing such a personal history.
My thanks go to Netgalley and publishers Head of Zeus for my ARC in exchange for my honest review. A five star read if ever there was one.
I will review to Goodreads, Waterstones and Amazon later.