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In memoriam: The Late Professor Richard Robinson

In memoriam: The Late Professor Richard Robinson

1942 – 2022

Dr Ming Lim & Dr Alasdair Parker

It was with great sadness that we at the Mac Keith Press learned of the death of Professor Richard Robinson earlier this year. Professor Robinson was a wise and esteemed colleague of long-standing whose contribution to the Press’ work over the years is incalculable.


A paediatric neurologist, Professor Robinson acted as British Paediatric Neurology Association (BPNA) representative on the Mac Keith Press Editorial Board. He was ultimately made an honorary member of the Board, along with Professor Jean Aicardi. When Professor Robinson was asked to review recent issues of Developmental Medicine & Child Neurology for Board meetings, we were always grateful for his precise and constructive comments.

Early in his career, he worked with Dr Ronnie Mac Keith at the Evelina Children’s Hospital and the Newcomen Centre. Professor Robinson was past president of the BPNA and secretary general of the European Federation of Child Neurology Societies. He was also a member of the expert group for the Progressive Intellectual and Neurological Deterioration study for new variant CJD surveillance.

After he retired from Guys and St Thomas, Professor Robinson continued his work for Mac Keith Press. He recently wrote the Foreword to The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management by Martin Gough and Adam Shortland (2022).

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Pictured above: Professor Richard Robinson

‘Richard was a key figure in the development of paediatric neurology in the UK. He had a hugely stimulating intellect and was a great friend to all those who worked with him. He was one of three professors of paediatric neurology at Guy’s Hospital and was part of the team that continued the tradition, pioneered by Ronnie Mac Keith, of multidisciplinary work to assess children with neurodevelopmental problems and provide support for their families. He brought his extensive experience and wisdom to the Mac Keith Press Editorial Board, continuing to participate actively as an emeritus member. His witty and rigorous contributions were such an essential part of Board meetings that it is hard to imagine them taking place without him.’

Dr Christopher Verity

‘Some years ago Dr Adam Shortland and I were invited to write a book on musculoskeletal development in children with cerebral palsy and the implications for clinical management. Professor Robinson was strongly supportive over the years it took us to write the book, encouraging us to continue and complete it. He reviewed the first draft of the book and made a number of helpful and constructive suggestions which greatly improved the format and cohesion of the final proofs. We invited him to write an introduction to the book, and were humbled by his warm and extremely generous foreword.’


Dr Martin Gough

‘Richard was an excellent clinician, teacher, and researcher who just knew so much about everything. Someone who was knowledgeable and experienced, wonderful with the children and gently explanatory with any family. It was a pleasure seeing families with him. He contributed greatly to paediatric neurology and neurodisability in particular through Mac Keith Press where he was on the Board and contributed many articles and chapters to books over the 40 years he was active clinically. He continued to be involved in retirement while also extending his interest in orchids to the entire British Isles flora, becoming an outstanding botanist as well as enjoying choral singing and enhancing village life developing a first-responder team during Covid. He was both loved and respected by his colleagues, and trained many of the current paediatric neurologists who remember him as an excellent teacher and inspiring clinician.’


Dr Gillian Nicholson

‘Richard dressed carefully in suit/tie and his bag of equipment/toys were ever ready. His luxuriant beard further added to families’ impression that his was a superior clinical opinion to those of his juniors. If he had one failing, it was putting his trainees in the invidious position of introducing themselves to Bermondsey mothers, who were consistent in expressing their disappointment that they were not seeing the Professor!’
Dr Ming Lim and Dr Alasdair Parker


On behalf of all of Professor Robinson’s trainees

Post by Dr Ming Lim & Dr Alasdair Parker

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Cerebral palsy: more than a definition?

Cerebral palsy: more than a definition?

In this blog post, Mac Keith Press authors, Martin Gough & Adam Shortland examine the definition of cerebral palsy. The emphasis of the piece is on cerebral palsy’s variation from person to person and that its presence is not captured by a single definition or description


What do we mean by the terms ‘disease’ or ‘condition’? Cohen (1953) suggested that there are two main disease concepts.  Disease may be viewed as a distinct entity, so that if a person A has a disease they become ‘A plus B’, where ‘B’ is a disease.  Disease may also be viewed as a deviation from a perceived ‘normality’ due to a number of factors (x1, x2, x3…). The attraction of Cohen’s first concept may be the implicit possibility of a disease-free state or ‘cure’: if a disease is viewed as ‘A plus B’ then removal of ‘B’ with a resulting restoration of ‘A’ is theoretically possible.  This concept may involve an assumed anatomical localisation of ‘B’ which may then become the target of therapeutic intervention.  An ‘A plus B’ concept of person and disease, together with an assumed anatomical localisation of ‘B’, may explain the clinical concept and approach to spasticity in children with cerebral palsy.  Cohen’s second concept, that of disease as a deviation from a perceived ‘normality’, may be represented in the context of children with cerebral palsy by the popular concept of the potential normative power of ‘plasticity’: in this situation however, there is an implicit assumption that rather than true ‘plasticity,’ any changes that occur will be in a positive direction only and will act to restore the expected normative development of the child.

Baron (1981) noted that the medical paradigm may be seen as a functional abstraction with three basic elements: ‘a physician, a patient, and a disease… which each come to be seen as fundamental elements in and of themselves’: ‘physicians then look through their patients to discover the underlying pure disease….what starts out as a heuristic model becomes an ontological fallacy’.  This view was shared by Foucault (2003): ‘Paradoxically, in relation to that which he is suffering from, the patient is only an external fact: the medical reading must take him into account only to place him in parentheses’. 

A definition of cerebral palsy as a condition which is somehow separate from the child, and which focuses on the ‘what it is’ of cerebral palsy, can obscure the child’s experience (or the ‘that it is’) of cerebral palsy which exceeds and is not captured by our definition and is in this way idiotic.  This concept of idiocy (Desmond 2012) is derived from the Greek ‘idios’ which means “one’s own, personal, private”, with the noun “idiotes” indicating a private person.  Cerebral palsy can be seen as idiotic in that it is a unique or singular experience for each child which cannot be fully determined or captured by any definition we use.

Photograph taken by Martin Gough whilst in Yorkshire. Children have imprinted their own faces on the tiles.

This would seem to be an intellectual impasse: we seem to be defining cerebral palsy as something which cannot be defined. This approach would seem to support Cohen’s comment that ‘Philosophical enquiry in medicine is apt to be regarded as an arduous eccentricity’.  And yet, philosophy does have an approach to offer.  Levinas (1979) commented that ‘Western philosophy has most often been an ontology: a reduction of the other to the same’.  By this, he meant that in defining what things are, we change them from being ‘other’, something that we cannot know, and instead make them part of our understanding by objectifying them as ‘same’.   He suggested that our view of what we consider as known (‘the same’) is challenged by experiencing another person: ‘a calling into question of the same – which cannot occur within the egoist spontaneity of the same – is brought about by the other.  We name this calling into question of my spontaneity by the presence of the other ethics’.  This can seem somewhat abstract until we think about an encounter with a child with cerebral palsy: before and beyond any description, diagnosis or classification we can offer is our immediate awareness of the presence of a unique or singular other person.

An ethical approach (to use Levinas’ term) which accepts the singularity of each child with cerebral palsy is intuitively attractive but may make clinical management more of a challenge: if each child is unique, how do we use concepts such as ‘cerebral palsy’?  Derrida (2003), another philosopher, wrote that ‘Ethics start when you don’t know what to do, when there is this gap between knowledge and action, and you have to take responsibility for inventing the new rule which doesn’t exist….An ethics with guarantees is not an ethics….Ethics is dangerous’. We have a choice: we can take an ontological approach where we define cerebral palsy as an independent entity and face the challenge of making each child fit the definition, or an ethical approach where we focus on the child’s experience of the world and on our experience of the child, and work from there.  Ethics may be more dangerous and involve more responsibility, but seems to offer the child and the clinician far more.

Cohen H. The evolution of the concept of disease.  Proc Roy Soc Med 48:155-160, 1953.

Baron RJ. Bridging clinical distance: an empathic rediscovery of the known.  J Med Phil 6:5-23, 1981.

Foucault M. The Birth of the Clinic: p9: translation by AM Sheridan; Routledge, Oxford, 2003. 

Desmond W.  The William Desmond Reader: p47; edited and with an introduction by CB Simpson.  State University of New York Press, Albany, 2012.

Levinas E. Totality and Infinity: an Essay on Exteriority: p43: translated by A Lingis. Martinus Nijhoff Publishers, The Hague, 1979. 

Derrida J. Following Theory, p31-32 (in) life. after. theory. Edited by Payne M, Schad J, Continuum, London 2003.


Martin Gough & Adam Shortland May 2022

Martin Gough and Adam Shortland’s The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management is out now. The title challenges conceptions and current practices about the child with cerebral palsy to offer a new perspective and alternative clinical model. Promising to offer a real paradigm-shift in the ways we think about cerebral palsy, this book will be a critical resource for clinicians and researchers involved in the care of children with cerebral palsy including neurologists, physical therapists, orthopaedic surgeons, and neurosurgeons, as well as researchers and clinicians in the philosophy of medicine.

Martin Gough

Martin Gough trained in orthopaedics in Ireland where he developed an interest in the orthopaedic management of children with cerebral palsy and in gait analysis.  Following fellowship experience in Toronto, he was appointed as consultant in paediatric orthopaedics at the Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, in 1998, where he was able to combine these interests as part of the team in the One Small Step Gait Laboratory.

Adam Shortland
Adam is in receipt of an award from the leading UK children’s charity, SpARKs (Sports Aiding Research for Kids) for his contributions to medical research. Adam is the director of an MSc in Clinical Engineering at King’s College London. It forms part of a unique programme of training to bring people with a background in the physical sciences into clinical practice. He is reader (Associate Professor), King’s College London.

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Volcanoes in Iceland: How it all started with SINDA

Volcanoes in Iceland: How it all started with SINDA

In this blog post, Mac Keith Press author, Mijna Hadders-Algra reflects on how her upcoming book, SINDA: Standardized Infant NeuroDevelopmental Assessment was conceived and how an Icelandic Volcano played a pivoted role.


In spring 2010 an international workshop on the Infant Neurological Assessment was planned in Groningen, the Netherlands. Front runners in the field of developmental neurology were invited from many countries, including myself. They were experts who used the existing infant assessments, such as the Hammersmith Infant Neurological Examination or the examinations according to Amiel-Tison and Touwen. The workshop was organized as a preconference event of the international meeting on early intervention “Impact of Intervention”.

The reason for the workshop was the increasing awareness of clinicians that the existing neurological scales mainly addressed muscle tone and reactions, whereas the general movement assessment had taught the field how important the quality of spontaneous movements is. Thus, it was generally felt that a new assessment tool was needed.

The workshop was well prepared, so that the participants knew which aspects of the infant exam they had to present and discuss. But then something unexpected happened: the Icelandic volcano Eyjafjallajökull erupted.

All air traffic to and within Europe was cancelled. For the workshop this meant that only the German participants were able to get to Groningen – they travelled by train. Though we were reduced in number, this did not dampen our spirits! The ‘left-over’ participants from Germany and the Netherlands decided to hold a mini-workshop. It became clear that the development of a new assessment tool would take much time and that it would be a project that would not easily receive funding. The colleagues who had not been in Groningen decided to hop off the project.

Eyjafjallajökull erupting in 2010, photo courtesy of Henrik Thorburn (https://bit.ly/3MiV2uu)

But the German-Dutch participants of the mini-workshop had been so inspired, that they continued the development of a new infant neurodevelopmental assessment. Our group embarked on a non-funded weekend project, in which the four members (Uta Tacke, Heike Philippi, Joachim Pietz and myself) met about twice a year and exchanged many emails and documents during the intervals. Gradually the Standardized Infant NeuroDevelopmental Assessment (SINDA) emerged. SINDA’s three scales, the neurological, developmental and socio-emotional scale, were clinically tested. Next SINDA was implemented in clinical practice and normative data were collected. SINDA turned out to be an instrument that is quick and easy to apply, is reliable and is a very good instrument assisting prediction of high risk of neurodevelopmental disorders and parental counseling. No expensive toolkit is required.   

And so here we are! The English language version of SINDA will be published by Mac Keith Press very shortly and it’s all thanks to great and steadfast collaboration, some hard work and (at least in part) to the eruption of an Icelandic volcano.


Mijna Hadders-Algra March 2022

Mijna Hadders-Algra is professor of Developmental Neurology.  Her research focuses on 1) early detection of developmental disabilities, 2) early intervention, 3) significance of minor neurological dysfunction (MND) in children with DCD, learning- and behavioural disorders, 4) pathophysiology of motor impairment in children with cerebral palsy or DCD. 

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Looking back on 2021: Books, courses, and more to come!

Looking back on 2021: Books, courses, and more to come!

In this blog post, Mac Keith Press Editorial and Marketing Coordinator, Paul Grossman, looks back on some of the highlights from the Press over the last year.

Paul Grossman, Mac Keith Press Editorial and Marketing Coordinator

It’s February already! The first month of the year has gone by so quickly, partly because there’s so much happening at the Press… and partly due to playing catch up with all the tasks that didn’t get completed before the Christmas break.

There’s certainly been no shortage of exciting happenings here at Mac Keith Press. In case you missed it, last year Mac Keith Press fully launched our online course series, starting with two full accredited courses (EACCME® / AMA PRA) – Principles of Child Neurology in Infancy and Clinical Practice of Child Neurology in Infancy. If you recognise the names, it’s because they’re based on one of our signature titles, Principles and Practice of Child Neurology in Infancy, 2nd Edition by Colin Kennedy. The courses were built in partnership with the EPNS (European Paediatric Neurology Society) to support paediatric health professionals to develop best clinical practice for all neurological problems in infancy. You can find out more here.

Mac Keith Press online accredited courses in child neurology – Principles of Child Neurology in Infancy and Clinical Practice of Child Neurology, built in partnership with the EPNS.

In December, the Press was pleased to publish Children with Vision Impairment: Assessment, Development, and Management by Naomi Dale, Alison Salt, Jenefer Sargent, and Rebecca Greenaway which was a long-awaited Practical Guide on disorders of the eye, optic nerve, and brain in children. It received a fantastic reception in the clinical world and I’m very excited to see what the future holds for this title. This book has been particularly noted for its inclusion of chapters written by parents and those with lived experience. You can find out more about the book and her lived experience from chapter author, Holly Tuke, or the recent author podcast.

The last twelve-months or so have seen several new quality titles added to the Mac Keith Press catalogue. Extremely Preterm Birth and its Consequences edited by Olaf Dammann, Alan Leviton, T Michael O’Shea, and Nigel Paneth, explores the results of the ELGAN (Extremely Low Gestational Age Newborns) Study which was the largest and most comprehensive ever of its kind looking at babies born before 28 weeks’ gestation. The book is helping clinicians to prevent adverse health outcomes to the developing brain of newborns such as inflammation and infection. Last year, the Press also published the new edition of the Gross Motor Function Measure User’s Manual by Dianne J Russell, Marilyn Wright, Peter L Rosenbaum, Lisa M Avery, building upon the excellent work of the second and first editions with new insight and information on the GMFM App+. The Press also published Early Detection and Early Intervention in Developmental Motor Disorders by Mijna Hadders-Algra, which addresses how best to detect which infants will be later diagnosed and how timely intervention can improve quality of life. It was a really great year with quality publications, so make sure to check out any books you might have missed.

Early Detection and Early Intervention podcast – click here

Gross Motor Function Measure User’s Guide podcast – click here

Children with Vision Impairment podcast – click here

Last year, we also launched a blog with the aim to offer more opportunities for our authors to talk about their books and provide another longer-form channel to provide our supporters with updates about the Press. It’s also given us a new platform to encourage content submissions from parents, care-providers, and those with lived experience.  Holly, chapter author from Children with Vision Impairment, was kind enough to contribute a piece on what it was like to write a book chapter and her experience as someone with vision impairment, written in collaboration with Naomi Dale. Since then, we’ve also published blogs from longstanding Mac Keith Press author, Mijna Hadders-Algra, and from Martin Gough and Adam Shortland on their upcoming publication with the Press. There’s lot’s see and lot’s more to come, so watch this space.

A recent post from the Mac Keith Press Instagram featuring the new blog.

In other news, our journal, DMCN (Developmental Medicine and Child Neurology) broke its previous record by being awarded a new impact factor of 5.449 (2yr) and 5.366 (5yr)! You can check out our new “Welcome to Mac Keith Press” video from DMCN Editor in Chief Bernard Dan here and his 2021 DMCN wrap-up here. If you’re not already connected with us on our social channels, you should be – we post content and news from the Press daily, plus highlights from DMCN and author podcasts to our YouTube channel. If you’re considering buying a book or course from our store, make sure you sign up to our newsletter as new sign- ups receive a one-time 20% off coupon to use in the store.

Looking ahead, the Press will soon publish two more titles, both of which I expect to spark debate in their respective circles.

The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management by Martin Gough and Adam Shortland is due for publication in February and promises a “paradigm shift” in how we think about the musculoskeletal system in the child with cerebral palsy. The book critically challenges current standard practice and advocates for an alternative clinical model, focussing on the experience of the child and the world and embracing uncertainty. The book is available for pre-order now.

Coming not long afterwards, Mijna Hadders-Algra is publishing her third title with us – this time, SINDA: Standardized Infant NeuroDevelopmental Assessment edited with Uta Tacke, Joachim Pietz, Heike Philippi. This Practical Guide offers a way to accurately predict neurodevelopmental disability within the first year of life using their new assessment tool.

The Musculoskeletal System in Children with Cerebral Palsy podcast – click here

SINDA: Standardized Infant NeuroDevelopmental Assessment podcast – click here

As you can see, it’s been a very busy (and exciting) period for the Press with lots more just on the horizon. In 2022 we will be commissioning new books and courses and expanding our offerings for parents, care-providers and persons living with disability; if you have an idea about what we could do better, or to be involved in this process, please reach out. Keep in contact with us using our social channels or drop us an email at admin@mackeith.co.uk  – we’d love to hear from you!

A Mac Keith Press book, cake and a coffee make an excellent trio – from the Mac Keith Press Instagram page.

Paul Grossman February 2022

Paul Grossman

Paul Grossman is the Editorial and Marketing Coordinator for Mac Keith Press. They have a masters degree in history from the University of Nottingham and enjoy baking and creative writing in their spare time.

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How to choose a book cover: Commentary from Martin Gough and Adam Shortland

How to choose a book cover: Commentary from Martin Gough and Adam Shortland

In this blog post, Mac Keith Press authors, Martin Gough and Adam Shortland go into detail about the fascinating and at times difficult decisions around choosing a book cover. Make sure to check out their upcoming publication The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management, the subject of discussion in this post.

The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management is due for publication in February 2022 and is available for pre-order in both paperback and digital.

Adam Shortland (left) and Martin Gough (right)

Cover images tread a delicate line between expressing the core essence of the content held within the book whilst also necessitating an engaging and inviting cover art. It is often difficult to find an image that can do both well. We debated a series of images before agreeing on the one you see now on the cover. Some were bright but strayed too far from the messages of the book; others reflected our themes well but didn’t ultimately suit the cover format. The image we finally went with was suggested to us by Paul Grossman of Mac Keith Press: we liked it immediately because of the colours and energy of the image but also because we empathised with the figures (one of us goes purple with rage, the other pink with embarrassment!).

The cover image of the book shows a pink figure and a purple figure who appear to be either constructing or dismantling a slightly haphazard pile of coloured plastic blocks. On looking at the image there appears to be some discussion going on between the figures: should the blue block or the yellow block go next on top of the highest pile of blocks? The plan of the structure the figures are building is not very clear: it may be that they were sent to build a basic structure like a wall and got a little carried away in the excitement of playing with the blocks and in discovering new ways of putting them together.  The image conveys a sense of excitement and change although it is hard to know this from the faces of the figures, who are somewhat expressionless. As authors, we were invited to write a book on a specific topic, namely the development of the musculoskeletal system in children with cerebral palsy and the associated implications for clinical management, and we came up with a clear and straightforward plan. Like the figures, when we looked at what was involved in actually writing the book and when we began to see where we could take the discussion forward, we got a little carried away, and after a few attempts ended up with the present book which was not really planned in advance but in some way developed organically and brought in new perspectives through interaction and discussion between the authors.  This is partly because we liked all the topics in the book and wanted to include them all, and also because on looking at the different topics we could see new and exciting ways of putting them together. 

“The book itself is about change and development, and mirrors the change and dynamism implied in the cover image.”

Martin Gough & Adam Shortland
Upcoming title from Mac Keith Press The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management by Martin Gough and Adam Shortland

The book represents a snapshot in time for the authors when a range of concepts were brought together and expressed in book form: like the pile of blocks assembled by the figures, the ideas in the book are open to further development and should not be seen as complete or fixed. The book itself is about change and development, and mirrors the change and dynamism implied in the cover image. Rather than discussing a structure, the book discusses a process where, like the coloured blocks in the image, the components of the musculoskeletal system interact to form new arrangements and patterns. This complexity and capacity for self-development in the musculoskeletal system is hinted at by the background of the cover image, which is formed by leaves. The pink figure and the purple figure may be pleased about the outcome of their work and may see it as much more complex and interesting than a basic wall of blocks of a single colour but are probably aware that in comparison to the complexity of a living leaf the complexity of their pile of coloured blocks looks a little underwhelming.  In the same way, we have discussed complex topics in the book but when viewed against the complexity of the developing musculoskeletal system we have at best presented a very simple model.  Like the figures, however, we have to start somewhere: only by appreciating that there are blocks of different colours and that they can be put together in different ways can we implement new ideas. 

The figures in the image are not very expressive but seem to be enjoying themselves as they put the blocks together in new ways. Letting go of the apparent safety and certainty of the standard clinical approach may seem unwise but opens us to the excitement of new perspectives and approaches. Like the pink and purple figures, who would want to build a wall of blocks of the same colour when you could be involved in exploring something new? We hope this book conveys our enthusiasm and excitement in the same way that the image conveys the enthusiasm and excitement of the pink and purple figures working with their blocks.


Martin Gough and Adam Shortland January 2022

Martin Gough and Adam Shortland’s The Musculoskeletal System in Children with Cerebral Palsy: A Philosophical Approach to Management is out later this year and available for pre-order now. The title challenges conceptions and current practices about the child with cerebral palsy to offer a new perspective and alternative clinical model. Promising to offer a real paradigm-shift in the ways we think about cerebral palsy, this book will be a critical resource for clinicians and researchers involved in the care of children with cerebral palsy including neurologists, physical therapists, orthopaedic surgeons, and neurosurgeons, as well as researchers and clinicians in the philosophy of medicine.

Martin Gough

Martin Gough trained in orthopaedics in Ireland where he developed an interest in the orthopaedic management of children with cerebral palsy and in gait analysis.  Following fellowship experience in Toronto, he was appointed as consultant in paediatric orthopaedics at the Evelina London Children’s Hospital, Guy’s and St Thomas’ NHS Foundation Trust, in 1998, where he was able to combine these interests as part of the team in the One Small Step Gait Laboratory.

Adam Shortland
Adam is in receipt of an award from the leading UK children’s charity, SpARKs (Sports Aiding Research for Kids) for his contributions to medical research. Adam is the director of an MSc in Clinical Engineering at King’s College London. It forms part of a unique programme of training to bring people with a background in the physical sciences into clinical practice. He is reader (Associate Professor), King’s College London.

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An Interview with Holly Tuke and Naomi Dale

An Interview with Holly Tuke and Naomi Dale

In this special Q&A between Mac Keith Press authors Holly Tuke and Naomi Dale, the two discuss Holly’s involvement in the December 2021 publication Children with Vision Impairment: Assessment, Development, and Management by Naomi Dale, Alison Salt, Jenefer Sargent, and Rebecca Greenaway.

Holly kindly contributed a chapter to the book on the lived experience of young people with vision impairment which made for both an engaging and highly insightful written piece.

Children with Vision Impairment: Assessment, Development, and Management is due for publication on the 15th December 2021 and is available for pre-order in both paperback and digital.

Holly Tuke (left) and Naomi Dale (right)

Naomi: Hi there, Holly. It’s great to speak to you again. I just want to say thanks for contributing to the book. It’s such a wonderful addition and very insightful.

Holly: Thank you for letting me contribute. It’s an incredible feeling to be able to say that I’m an officially published author! …well, almost!

Naomi: Yes, almost! We should be publishing this week. I know my fellow editors are just as excited as you are. It’s been several years in the making, but the final book proofs look fantastic. We can’t wait to share it with everyone.

What I’d like to know – and I think the readers would like to know too – is a bit more about you and how you got involved in the book?

Holly: Well, my name is Holly Tuke, I’m a disability blogger, freelance writer and Social Media Officer. I am registered blind due to a condition called Retinopathy of Prematurity, as I was born at 24 weeks. I’m also a massive music fan and a bit of a bookworm.

Naomi: A bookworm? Not too surprising you’ve ended up becoming an author then!

Holly: Yes, definitely! I got involved in the book as I was contacted by one of the authors who had come across my blog, and thought I’d be a good fit for the chapter on young person’s experience of vision impairment. We exchanged a number of emails and discussed the book and the specific chapter in more detail, I then made the decision to write the chapter!


Holly Tuke is an award-winning disability blogger and writer. They are co-host of the Happy Hour on RNIB Connect Radio and a Social Media Officer.

In this photo, Holly Tuke is standing in front of Edinburgh Castle which rises up behind them. Holly is wearing a back blouse with white spots and a necklace. To their right, tourists enter the Edinburgh Castle via the entrance/gatehouse. Above the gatehouse is the royal crest of Scotland, a red lion on a yellow field.


Naomi: And we are very grateful you did. Not only including lived experience but listening to the voices and experiences of people (and children) with visual impairment was immensely important to us when writing the book. I’m glad that you were kind enough to be part of that process.

Obviously, we want people to read the book, but if you could sum up some of the core messages in your chapter, what would they be?

Holly: Listening and learning from people’s lived experiences is vital, so I’ve tried to encompass some important messages about that in my chapter.

The first being how important it is to listen to blind and vision impaired people. Take note of what we’re saying.

Naomi: Yes, absolutely.

Holly: Another core message of my chapter is that every blind or vision impaired person is different. What works for one person doesn’t mean that it’ll work for another. Vision impairment is a spectrum, it does not fit into a box.

I’d say that one of the most important messages of my chapter is reiterating the fact that blind and visually impaired people can lead normal, independent lives. We may do things differently, but we can still shape our life the way we want it to be.

Naomi: Thank you. Yes, I couldn’t agree more. It’s so important to keep highlighting that everyone with visual impairment is different and the experiences of vision impairment and just disability in general, are unique to the person. I imagine your own life experiences helped shaped your chapter too?

Holly: My chapter is a true reflection of my life. It’s real, honest, and straight from the heart.

“Blind and visually impaired people can lead normal, independent lives. We may do things differently, but we can still shape our life the way we want it to be.”

Holly Tuke

I’ve discussed some of the most pivotal moments that have helped me get to where I am today including my experiences of mainstream education, university, and employment, as well as my hobbies and interests.

When writing the chapter, I thought about what I wish I’d known when growing up with a vision impairment, what my family wish they’d known, as well as my interactions with professionals in the field.

The whole chapter is based on my lived experiences of being a blind person. In fact, it shaped every aspect of the chapter.

Naomi: Yes, you can really see that in the writing, and I expect readers will find it quite impactful to read. As a professional, I learned so much from your chapter which will change my own practice. I want to say again how great a chapter it is – so honest. Thanks again, Holly.

Holly: Thank you!

Naomi: Before we close off, I wonder if I might also ask you what you’re doing aside from the book? I understand you do work for a charity and run a successful blog?

Holly: That’s right. I work as a Social Media Officer for a charity that’s extremely close to my heart. Working in communications within the charity sector is something that I’ve had my sights set on for years, but I never thought it would actually happen.

Alongside my job, I spend a lot of time tapping away at my keyboard putting together a blog post for my blog ‘Life of a Blind Girl’ or an article for another publication or website. I also use my social media platforms to share my experiences of living with a vision impairment, raise awareness and educate society.

I also present a show on RNIB Connect Radio on mental health and wellbeing.

So, as you can tell…I’m a busy woman!

Naomi: Gosh, you certainly are! I don’t know where you found the time to contribute! You are happy you did though?

Holly: Of course. Having the chance to contribute to the book has been fantastic, it’s something that I’ll never forget. As a bit of a bookworm, it has been really interesting to see the other side of the bookish world, from the creation and publishing side of things.

Being an author of a chapter in a book is definitely a ‘pinch-myself’ moment!

Naomi: I’m very glad to hear that!


Holly Tuke and Naomi Dale, December 2021

Holly Tuke is an award-winning disability blogger and writer. They are co-host of the Happy Hour on RNIB Connect Radio and a Social Media Officer.

holly@lifeofablindgirl.com

Life of a Blind Girl

Naomi Dale is a Consultant Clinical psychologist and Paediatric Neuropsychologist (Neurodisability) at Great Ormond Street Hospital for Children, London UK and Professor in Paediatric Neurodisability (with specialist interest in Vision Neurodisability) at UCL Great Ormond Street Institute of Child Health London.

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An Interview with Mijna Hadders-Algra: 9 months post publication of Early Detection and Early Intervention in Developmental Motor Disorders

An Interview with Mijna Hadders-Algra: 9 months post publication of Early Detection and Early Intervention in Developmental Motor Disorders

Nine months on from publication, Early Detection and Early Intervention in Developmental Motor Disorders editor Mijna Hadders-Algra reflects on the key themes and insight from their book.

Early Detection and Early Intervention in Developmental Motor Disorders published in March 2021.

Mijna Hadders-Algra pictured above holding her book Early Detection and Early Intervention in Developmental Motor Disorders

What are the core themes of the book?

The core themes of the book are – as the book’s title indicates – early detection of and early intervention in developmental motor disorders. The book focuses on the first 1,000 days of life. It covers the prenatal period and the first two postnatal years when the brain undergoes rapid and dynamic developmental changes. Recently, there has been a stronger emphasis on identifying infants that will go on to have developmental disorders as early as possible, so that the proper guidance of infant and family can be started. In clinical practice, this can be difficult. The book aims to teach practitioners about the tools assisting early detection, the strategies associated with better outcomes, and the potential opportunities and challenges imposed by the developing brain.

How is the book structured?

The book has seven parts. Part I sets the scene. Part II addresses the young brain’s neurodevelopmental mechanisms, as the brain’s dynamic developmental changes have major consequences for early detection and early intervention. The developmental changes impose challenges on early detection and its neuroplasticity offers excellent opportunities for early intervention. In order to understand the principles of early detection and early intervention, parts III and IV first discuss typical and atypical motor development, respectively. Also sensory, language, cognitive, and socio-emotional development are addressed, as development in the various domains is highly interrelated. Part V deals with early detection; it systematically discusses the most common and valid methods. Part VI describes early intervention; it pays specific attention to the family and to environmental adaptations.

Why did you write the book / why is it needed now?

During my teaching on early detection and early intervention I realized that a book that overviewed early detection and early intervention was lacking. Presumably this lack was due to the limited knowledge in the field in last century. But recently knowledge increased rapidly. It was clear: it was time for this book, that covers the whole range from developmental neuroscience to the participation of child and family in daily life.

“But recently knowledge increased rapidly. It was clear: it was time for this book”

Mijna Hadders-Algra

Who will benefit most from reading the book?

All health professionals involved in the care of infants may profit. This pertains to professionals working in the care of high risk infants, both in the hospital and in outpatient clinics, and to those working in primary care settings. This means that the book is intended for (neuro)paediatricians, child neurologists, neonatologists, paediatric rehabilitation doctors, paediatric physiotherapists, occupational therapists, speech-language therapists, nurses working in the care of infants, educationalists, and researchers.

What was the main highlight or experience you had whilst writing this book?

During the writing of the book, I once again realized how much I had learned from the families that allowed me to do embedded research. The families had an infant with a major lesion of the brain that resulted in the diagnosis of CP. They allowed me to be present in their home during major parts of many days during their child’s development. Observation of the daily care giving practices and the conversations with the family members about the many aspects associated with raising a child with a developmental motor disorder, including grief, joy and the many hassles and time consuming daily practicalities, formed the basis of this book.


Mijna Hadders-Algra December 2021

Mijna Hadders-Algra is professor of Developmental Neurology.  Her research focuses on 1) early detection of developmental disabilities, 2) early intervention, 3) significance of minor neurological dysfunction (MND) in children with DCD, learning- and behavioural disorders, 4) pathophysiology of motor impairment in children with cerebral palsy or DCD.