Co-Researchers Published (again)!

Image of the Journal of Literary and Cultural Disability StudiesThis week we are really proud to announce the publication of an article in the Journal of Literary and Cultural Disability Studies written by two of our co-researchers, Sally Whitney and Katy Evans. Sally and Katy are part of our Co-Researcher Collective, a group of disabled young people co-leading Living Life to the Fullest.

Last September, we went to the Lancaster Disability Research Conference 2018 (#CeDR18) to host a workshop on our co-production approaches and methods in Living Life to the Fullest. Sally and Katy’s article details their experiences of attending the conference and their experiences as researchers in the project. Below we share a snippet from the article:

What Were the Aims of Attending the Conference?

Sally: My aim for the conference was to represent our project, Living Life to the Fullest, the best I could. I knew I could enthusiastically communicate my zest for the project. I also knew that the film we were showing—Living Life to the Fullest: The Co-Researcher Collective (2018)—stood for itself and that my fellow co-researchers on film were amply able to promote our project because we each believe in what we are doing.

Katy: Disability studies was always so much more than a degree to me. It was an opportunity to develop my identity as a disabled person and be proud of who I am. It was a welcome liberation after a childhood dominated by the medical model. Through disability studies, I began to accept all aspects of myself including my impairment, and that society’s reactions to it are not a personal attack on me. After graduating, I used my disability studies understanding in various jobs but missed being immersed in the research. I was also looking to develop my understanding around learning disability to enhance my current work at Changing Our Lives. In July I became a co-researcher in the LLttF project. It is really exciting to be working in collaboration with other disabled young people, each with a unique perspective and shared vision to shed light on subjects that often go unspoken about.

(Evans and Whitney 2019: 231-232)

You can access the article here. If for any reason you can’t access it, please email


Evans, K. and Whitney, S. (2019) Comment from the Field. Journal of Literary and Cultural Disability Studies, 13: 2, 231 – 236


Our thanks go to the Journal of Literary and Cultural Disability Studies, particularly Owen Barden, Liverpool Hope University for his support through the production process.

Co-creating a Research Toolkit

Greenacre School logoOn Tuesday 7th May, Living Life to the Fullest researcher Kirsty Liddiard visited Greenacre School, Barnsley, to begin planning the Living Life to the Fullest Co-Production Toolkit. Greenacre is a local school educating children and young people aged 3 – 19 with severe and complex needs. 

Living Life to the Fullest, and its Co-Researcher Collective of disabled young people, are collaborating with Greenacre School – specifically Harry Gordon, SEN Teacher, and six Greenacre students – to co-design and create a “research toolkit”.

The Co-Production Toolkit aims to record and disseminate with others our ways of working in co-production with disabled young people in the research process. In the last decade, ‘public bodies — from non-governmental organisations (NGOs) to national charitable organisations — have begun to produce their own guidance as to how to research with children and young people’ (Liddiard et al. 2018: 2). But we have been left wondering: where are the voices and expertise of disabled children and young people?

Our ‘preliminary read of such guidance reveals disability as present primarily only through concerns about safeguarding, accessibility and gatekeeping, and as that which demands extra time, resources, and planning on the part of the academic researcher (see Bailey and others, 2014). Seldom is there any explicit focus towards disability as a worthwhile life experience and valuable lived perspective from which to contribute — a positionality readily adopted in Living Life to the Fullest’ (Liddiard et al. 2018: 3).

Kirsty spent the day at Greenacre, meeting staff and students, and sitting in on some classes. In the afternoon, Harry and Kirsty met with the student collaborators and through exploring the invention of the fingerprint, (and finger printing each other!), we had conversations about the meanings of exploration and investigation. All of our student collaborators were excited and ready to jump aboard the project!

Through the Toolkit, we want to diversify our methods and practices of co-production to a broader demographic of young people: including young people with the labels of learning disability and autism, who are routinely omitted from research process. We want to take an online and offline approach – with downloadable resources such as short films, podcasts, animations and templates co-created by our co-researchers and student-collaborators. We also want to explore the possibilities of research as a learning practice for SEND pedagogy and politics. Ultimately, we want the Toolkit to be used by youth workers, teachers, social work practitioners, academics, researchers, charities… the list is endless!

As ever, we will keep you up-to-date as we go!

To learn more about Living Life to the Fullest, or if you have any questions, please email


Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (2018) ‘“I was excited by the idea of a project that focuses on those unasked questions”: Co-Producing Disability Research with Disabled Young People‘, Children and Society, 33: 2, 154-167


Youth, disability and employment

Quote screen: I think when you are disabled it's much more difficult to turn up and just do a week working in the office because you cant...

Participant Quote

In this brief blog post we want to share a short film made recently by the Living Life to the Fullest project.

It focuses on youth, disability and employment and draws upon the stories of disabled young people collected by our Co-Researcher Collective. In their interviews, co-researchers asked disabled young people how they felt about work and life, and what they wanted for their futures.

Please take a look at our film here and share on social media! Visit us on Twitter at @FullLivesESRC

If you have any questions about Living Life to the Fullest, please email

“I’m me, and that’s all that matters”: Co-creating poetry with disabled children and young people

Sipho Ndlovu

Sipho Ndlovu

On 21st and 22nd February 2019, Living Life to the Fullest researcher Kirsty Liddiard, from the School of Education and iHuman, University of Sheffield, collaborated with Georgina Barney from the Attenborough Arts Centre, Stacey Curzon from Rainbows Children’s Hospice and professional poet and artist Sipho Ndlovu, University of Sheffield, to host two poetry workshops with disabled children and young people. The workshops were part of the ESRC-funded Living Life to the Fullest project, co-led by Kirsty with Dan Goodley and Katherine Runswick-Cole (both of School of Education and iHuman) and the Co-Researcher Collective.

The Living Life to the Fullest project is a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs). With children and young people alongside as our co-researchers, the project is a space where disabled children and young people can tell new stories of disability – their own stories.

The first workshop was held at the Attenborough Arts Centre in Leicester, an arts centre that prides itself on being accessible and inclusive. The second was at Rainbows Children’s Hospice, which provides care and support for children and young people with life-limiting health conditions and disabilities, and their families. The aim of the workshops was to enable disabled children and young people to tell new stories of their experiences of disability through poetry and spoken word arts.

Sipho Ndopu, a spoken word artist and poet whose work explores disability, dyslexia and difference, led the workshops. Check out his brilliant work Re-Code by Man Made Youth here and For the City’s Young here. In the workshops, Sipho worked in inclusive ways to co-create poetry with disabled children and young people based on their own lived experiences. The workshops offered quality arts engagement with inclusivity at its core. Workshops acknowledged the ways in which mainstream arts activities and spaces can routinely exclude disabled children and young people, with the aim of building bridges between accessible arts and young people who aren’t always afforded opportunities to participate.

Following some fun warm up activities, young participants were invited to explore creative responses to questions such as: How do you see yourself? What do you like doing? What brings you joy? Colourful responses were offered through drawing, poetry, dancing, iPad play, and performing for others.

Rupert age 10

Rupert*, age 10

Rachel age 10

Rachel*, age 10

Sakiya age 9

Sakiya*, age 9

Below is a poem, written in one of the workshops, by Natasha age 9,

My eyes are blue.

I’m pretty.

I’ve got long blonde hair.

I’m kind and happy.

I like myself.

Half of me is German.

It’s blurry because my eyes move.

I’m interesting.

I look like Mummy.

I look a bit like Daddy.

E is for Eggs.

Natasha, 9

 Similarly, Alex, aged 13 wrote the following poem in response to the question, How do you see yourself?

I can be funny, kind and caring

I’m crazy at times but inside I love my friends and family.

I’m grumpy sometimes but I get over it.

I can also be annoying at times but then I’m happy later on.

Like I said, I love and appreciate every minute with friends.

Alex, 13

And Sam, aged 13, wrote about the importance of intimacies with friends and family:

Sometimes I’m happy, sometimes I’m sad

I can be lazy but I do my best.

I think of others before myself, as I love my friends dearly.


I’m not the best at everything, but that’s fine,

I don’t need to be loved by everyone because I’m happy with who I do have.

I’m limited to what I can do because of my disability, but I keep my head high…


… Because I’m me, and that’s all that matters.

Sam, 13

These poems, and the many pieces of artwork created in the workshops, are powerful because disabled children and young people are rarely given space to express their thoughts, opinions and feelings, especially within the context of the arts. For us, the arts can generate a diversity of stories, countering the ‘single story’ of disability that routinely centres tragedy, particularly in the context of childhood. Thus, the arts can ‘voice another storyline’ of disability (Golden 1996: 330) – one of joy, self-esteem and creativity – centring the lives of young people with life-limiting and life-threatening impairments in this exclusion.

Moreover, in Living Life to the Fullest we consider disability arts as activism – creative storytelling with radical potential for disability rights and justice (Mingus 2010). As we found in our first Arts Retreat for young people living with life-limiting and life-threatening impairments, art making can provide a way to critically and sensitively re-imagine the future as vital, desirable and pleasurable. We’ve found through young people’s stories, that many of those living with life-limiting and life-threatening impairments are routinely denied opportunities to hope and dream ‘future’, despite the unremitting necessity to plan imposed upon them through the transition between child and adult care. The arts, when accessible and inclusive, can make space for this to happen.

Parents also came along to the workshops. At the Attenborough Arts Centre, parents commented how special the centre is as a key resource for the family – a place to come for family time “without being stared at”. Another parent said that she regularly brought her disabled child to the centre’s coffee shop because it was a rare space in which they were welcomed, relaxed, and included. These experiences emphasise just how difficult and hostile some public spaces can be for disabled children and their families – something our parent participants, who have been interviewed as part of Living Life to the Fullest, are readily emphasising in their own stories.

Excitingly, participants’ poems and artwork will now be featured in a national exhibition, Visible Liveable Lives, held at the end of the project in Sheffield City Centre. The exhibition will also be hosted online, coming soon!

To keep up with the Living Life to the Fullest project, please follow this blog! For any other questions, please email Kirsty:

* Participant names have been changed.


Golden, J. (1996) “Critical Imagination: Serious Play with Narrative and Gender.” Gender and Education, 8: 3, 323–336.



Thinking through Critical Disability Studies

We are pleased to say that we have had another article published that is based on our ESRC project, Living Life to the Fullest.

Provocations for Critical Disability Studies, published in the academic journal Disability and Society, has been co-authored by Living Life to the Fullest researchers Dan Goodley, Katherine Runswick-Cole and Kirsty Liddiard along with Rebecca Lawthom from Manchester Metropolitan University.

The article explains and questions some of the theoretical principles underpinning Living Life to the Fullest as a project rooted in Critical Disability Studies. The article is open access – meaning it is free for everyone to read – and can be accessed here.

Below, you can read our abstract, our accessible Points of Interest, and an Easy Read version we have produced.


This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Points of interest

  • This article introduces and discusses the field of Critical Disability Studies.
  • Critical Disability Studies thinking has developed in some controversial and complex ways over the years.
  • We review some of these developments and pose five questions that we think are urgently needed to be addressed by Critical Disability Studies researchers.
  • Our questions are: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability?

Easy Read

Please email for our Easy Read version in Microsoft Word of PDF.

Easy Read JPG of our article (a PDF is available)



Co-Researchers in the media

Sally's article in the Brighton Argus newspaperOn  March 1st 2019, Living Life to the Fullest co-researcher Sally Whitney was featured in the Brighton Argus. The article, entitled How my dog changed my life for the better (McAllister, 2019), told Sally’s story of her experience of being partnered with her assistance dog, Canine Partner, Ethan.

Sally said, “Ethan does more for me than just tasks, he is a constant comfort – his unconditional love and constant desire for cuddles is a treatment in itself.”

“The tasks that Ethan does can be done by my carers, but being able to achieve them on our own, between me and Ethan, brings a fabulous sense of freedom.”

We reported in a blog post last week about Living Life to the Fullest’s new project with Canine Partners, a registered charity that partners specially trained assistance dogs with disabled people. The impact project, being led by Sally on behalf of Living Life to the Fullest, will evidence and quantify the benefits of assistance dogs for disabled young people. Living Life to the Fullest will then share this with multiple audiences: disabled young people and their parents, carers, families and allies; policy makers; commissioners; local authorities; and health, education and social care professionals. We are also hoping to make a short animated film with the support of our Community Research Partner, Purple Patch Arts, to narrate and animate young people’s stories about why their assistance dogs are so important to them, their lives and their futures.

Sally said, “Ethan has transformed my life so much. He’s shown me that I no longer need to reject the notion of my own disability. By accepting my illnesses and embracing my weaknesses, new realms of life have opened up. [Ethan] has bought so much happiness and so much colour to my life. I would have an incredibly hard time imagining my world without him.”


Strong young disabled women making waves in research

International Women's Day logoThis International Women’s Day (#IWD2019) we want to celebrate our co-researchers in our Co-Researcher Collective, all of whom are proud disabled young women.

International Women’s Day (March 8) is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity.

International Women’s Day (IWD) has occurred for well over a century, with the first IWD gathering in 1911 supported by over a million people in Austria, Denmark, Germany and Switzerland. Prior to this the Socialist Party of America, United Kingdom’s Suffragists and Suffragettes, and further groups campaigned for women’s equality.

The International Women’s Day 2019 campaign theme of #BalanceforBetter is a call-to-action for driving gender balance across the world.

As an ESRC-funded project, Living Life to the Fullest is really proud to be creating research opportunities for disabled young women. Disabled young people with life limiting and/or life threatening impairments are typically excluded from academic research, particularly in regards to its leadership (Liddiard et al. 2018). We are proud to say that The Co-Researcher Collective is radically impacting the way research is typically carried out. Collectively, co-researchers are co-leading the project, undertaking fieldwork (collecting data), collaborating in data analysis, and writing, sharing and promoting the research and its findings (Liddiard et al. 2018; Whitney et al. in press).

Co-Researcher Sally Whitney said, “Joining the co-researcher collective has benefitted me personally in addition to being a group doing fab quality research into the lives of young, disabled people. This is because it a group formed of amazing, strong, young disabled women who are making waves in and outside the spheres of disability studies and activism. They have challenged me to believe in myself more, value and trust my own experience and allowed me the space to grow in the field of research. Not only that but they are bold, powerful women who have taught me that I am far more capable than I realise and inspired me to push the limits of my own and society’s expectations.”

Co-Researcher Emma Vogelmann said, “Being in an all female research group has been an amazing experience. We work together so well, particularly as some of us have never met in person! We have become great friends who empower each other and support each other everyday. When I see an article about smashing the patriarchy or about an amazing disabled role model, I instantly want to share it with the co-researcher collective!” 

Keep up to date with our fab project by following our new Twitter account: @FullLivesESRC

Rethinking Care & Support: Listening to disabled young people

A picture of a woman in a wheelchair (Sally) with her assistance dog, Ethan.

Sally Whitney, Co-Researcher, Living Life to the Fullest

This week has been a big week for the Living Life to the Fullest project. We are very proud to announce a small impact project we are undertaking, led by our Co-Researcher Sally Whitney in collaboration with Canine Partners, a registered charity that partners specially trained assistance dogs with disabled people. 

For almost a year, our co-researchers have been collecting the stories of fellow disabled young people through multimedia interviewing, for example through Skype and Facebook.

Preliminary project findings have emphasised the benefits of assistance dogs for disabled young people living with life limiting and life threatening impairments (hereby LL/LTIs). Specifically, our focus in Living Life to the Fullest has developed from hearing young people’s stories about their relationships with their assistance animals, and the meaning this form of care and support has in their lives. For example, young people’s stories have emphasised (i) the positive emotional impacts of this form of support; (ii) the emergence of new intimacies between humans and animals; (iii) the ways in which assistance animals contribute to the building of positive identities and futures; and (iv) how they can transform the social lives and experiences of disabled young people with LL/LTIs.

“Around the university campus I had gone from being the girl in the wheelchair to being the girl with the amazing dog and that was a very liberating feeling”

– Living Life to the Fullest Participant

This is something we have written about before in Living Life to the Fullest. In 2018, co-researcher Lucy Watts MBE MUniv and Kirsty Liddiard co-authored a short article about human and animal intimacies, based on Lucy’s experience with her assistance dog, Molly – you can read this here.

“Making sure she’s ok is a reason for me to make sure I am ok – I look after myself better so that I can look after her as she deserves. People treat me differently too, they ask about the dog rather than asking why I’m in a wheelchair.”

– Living Life to the Fullest Participant

In collaboration with Canine Partners, then, in this small impact project we will evidence and quantify the benefits of assistance dogs for disabled young people with LL/LTIs. Nik Bakalov of the University of Sheffield will support this work. A key aim is to produce a quantitative analysis of the impact of an assistance dog on young people and communities. Living Life to the Fullest will share this with multiple audiences: disabled young people and their parents, carers, families and allies; policy makers; commissioners; local authorities; and health, education and social care professionals. We are also hoping to make a short animated film with the support of our Community Research Partner, Purple Patch Arts, to narrate and animate young people’s stories about why their assistance dogs are so important to them, their lives and their futures.

“Rover [assistance dog] is also great fun to have around and he keeps me motivated. He also makes me laugh a lot as he can be quite cheeky – he sometimes brings me the house phone or remote control even if I don’t need them just so he can get a treat.”

– Living Life to the Fullest Participant

We are really proud that this project is being led by Sally. Sally has lots of experience and is supported by her Canine Partner, Ethan.

Sally says, “Our research [Living Life to the Fullest] shows the power of a partnership between young disabled people and assistance dogs that goes far beyond the physical tasks they can do. We can’t wait to share the transformative effect of canine support in our upcoming film and quantitative analysis, that we hope will truly show how these amazing dogs change lives and empower and enable their humans to live even more fully.”

As always, we will keep you updated as this brilliant project progresses.

Sally Whitney and Kirsty Liddiard


Photographs courtesy of Woman’s Own (2018)

Death and dying: it’s biography not biology that matters most at the end

We Need to Talk about Death Poster

Image courtesy of the BBC

This week’s guest blog post is a review of the recent BBC Horizon documentary, We Need to Talk about Death, written by Living Life to the Fullest Co-Researcher, Sally Whitney. In the documentary, Dr Kevin Fong makes a personal journey through the moral questions about death that face not just the medical profession, but each and every one of us. Many of the themes discussed in the documentary relate to the stories of disabled children and young people living with conditions labelled as life-limiting and life-threatening, and those of their families, that we are gathering in our project, Living Life to the Fullest. You can watch We Need to Talk about Death here on BBC iPlayer.

The program touched on issues that were relevant not just to palliative care and the process of dying, but in fact seemed to me to be applicable to the whole of healthcare.

It portrayed a range of doctors and facilities (hospices and cancer centres) that clearly understood the importance of doctors taking a step back from their everyday, medical school-enforced method of treating patients. In normal practice doctors are happiest “actively doing things” to improve symptoms of pathology, “continuing treatment in a pursuit of a cure”, as this has been at the core of all their training. And this pursuit of ‘curing’ can have a negative effect on patients’ choice, with some feeling penalised for not choosing to go for the most aggressive treatment option. Some people don’t even feel they have the option – whatever the cost to them personally. One patient in the documentary commented, “you may feel duty bound to go ahead with the treatments”.

A consultant admitted; it’s “easy to slip into the conveyor belt of big treatments,‘but harder to have the conversation [about the facts of dying]. It’s easy to go to default [mode].”

Importantly, this programme highlighted the need for a change of focus. One of the palliative care doctors stated “a patient passing away isn’t a failure” and conceded that at the end of a person’s life they want to “spend (their) time doing the things that make [them] human, not things that make blood tests better”.

The comprehension that dying is a part of a person’s life, a life that holds journeys, histories and relationships, and is not just a biological event happening to a biological organism, is a breakthrough. It’s about recognising the patient as a multi-layered person, giving choice to that person and giving them back the control over their life and their body – ultimately, treating them as a whole. The doctors on the documentary described this shift and change of focus as a tool that “empowers the patient… [looking] at what’s important; the quality as well as the quantity of their lives. It’s about not letting disease control your life”. And that’s what seemed most striking, the need to give patients choice. Not just in the matter of their lives ending and how they want that to happen, but also for ALL patients under the authority of physicians. Choice and ownership of one’s own body and way of living is key. One patient stated, “it’s about what I want to do with my life not what others want me to do with my life”. Simply put, it’s a “change of focus to what’s going to make an individual’s life better, not just [bring about] change in a scan”.

The understanding that the dying process is not just a biological stage nor a failure on behalf of both patient and doctor to ‘overcome’ a disease was summarised by one of the hospice doctors when he said; “Dying isn’t about dying from a disease, it’s about dying from a life”. It was this emphasis on life that was the central theme of the documentary.

The notion of dying being a process of completing life gave a poignant and positive interpretation of death. Dying becomes a period where a person uses their energy to complete life.

More than that, the documentary highlighted some of the same themes we have drawn from our project, Living Life to the Fullest. That, regardless of the length of life or the timescale one has before it ends, each life can be lived to the full, fully completed and that every moment of that life is important no matter how long it is. In regards to the young people living with LL/LTIs that have participated in our project, it is clear that every moment up to the point of death is important, valued and lived fully. The provision of palliative care and hospices for patients allows this ‘fullness’ of living and allows them to “live the best life they can”.

However, what was clear was that this isn’t something that can be achieved without a lot of effort and energy. The programme spoke of “frank, in depth” conversations about death that are difficult to have. However, once had, “almost everyone feels better for having them”. This ability to discuss dying leads to a number of positive outcomes for an individual; it helps them to “prepare, enables them to grieve and may lead to an acceptance of something that is inevitable for all of us”. Most importantly, it returns the power to have both choice and control to the patient. They have the right to reclaim the narrative of their lives back from doctors and live their chosen, full lives to the very end.

The power of choice (not just in terms of treatment options) was strongly illustrated by the discussion about the dying process only being able to happen once the patient has permitted it. It can only happen successfully when a person “understands what is happening, engages with it” and has taken steps to allow it to happen. These steps may involve the resolution of relationships, completion of tasks, planning and decisions about the meaning a person attaches to the life they’ve lived. If we consider dying to be the concluding chapter to the story of a life then we can more clearly understand it as needing to be a greatly considered, significant stage of a person’s journey that needs to be completed. As one of the palliative care consultants stated about death “it’s about the biography, not the biology”.

Perhaps the whole of medicine can learn something from the palliative care approach? A life is only as valuable as a person attributes meaning to it. Therefore, clinicians need to consider what course of action adds the greatest value to their patient’s life, whether that life is only halfway through its journey or whether it’s coming to the end. Whatever that action may be, it is clear that it needs to be something that allows each individual to live their life to the fullest, regardless of time left.

Sally Whitney, Living Life to the Fullest Co-Researcher




Parliamentary debate on support for children with life-limiting & life-threatening conditions

Palace of Westminister, LondonToday (Tuesday 29 January), MPs will participate in a crucial debate on support for children with life-limiting and life-threatening conditions across England.

Why is this happening?

Late last year the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care published a report on the extent to which the government’s end of life care commitment is being met for babies, children and young people who live with life-limiting and life-threatening conditions.

The government’s ‘Our Commitment to You for End of Life Care’ sets out what ministers expect commissioners to attain for babies, children and young people with life-limiting and life-threatening conditions, including:

  • Respite care, delivered in a children’s hospice setting, by community palliative care services, or ‘hospice at home’ services.
  • Good collaboration between different clinical and non-clinical services across a variety of different settings.
  • Support around bereavement, both before and after a child dies.
  • Prioritisation of children’s palliative care in commissioners’ strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.

(Together for Short Lives, 2019)

The APPG is a ‘cross-party group of MPs and peers which seeks to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions’ (Together for Short Lives, 2019), and the secretariat is the Living Life to the Fullest Project’s critical friend, Together for Short Lives.

What is the problem?

The inquiry behind the APPG’s report concluded that, despite the government’s commitment, children and families’ access to quality palliative care is erratic and depends largely on where they live in England. This is unjust and equates to a serious health inequality for disabled babies, children and young people with LL/LTIs and their families.

Through narrative and arts-informed methods, the Living Life to the Fullest project – based at the University of Sheffield – is hearing the stories of disabled children and young people and their families across the UK. Many of these stories – particularly those of parents – have reported that critical forms of care and support are being denied to their children, making life harder for families. Other parents have told of a serious lack of bereavement support after their child has died.

What will happen next?

Importantly, the APPG has demarcated a series of clear recommendations for government ministers and officials, working with partners, in order to make attempts to overcome the barriers that are endangering the end of life care commitment.

According to Together for Short Lives (2019), ‘this debate, secured by Jim Shannon MP, Vice-Chair of the APPG, is a crucial opportunity for MPs to call upon the minister to take these actions and set out what steps the government is taking to respond to the APPG’s recommendations’.

We will update you on the outcomes of today’s debate next week. You can access and download the APPG’s inquiry report here.