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February / March 2013
KIDS National Inclusive Practice Network

1. KIDS NDD Update
1.1 Making it Personal update
1.2 Inclusion into Practice update
1.3 Training and eLearning update
1.4 Other news from KIDS

2. Featured Organisation – Include Me TOO

3. News updates - February / March 2013

3.1 Consultations
3.2 Campaigns and Projects
3.3 Disabled Children & Young People’s Rights and Inclusion
3.4 Play and Leisure
3.5 Early Years and Childcare
3.6 Training and Workforce Development

4. Useful Resources
4.1 Competitions and Award Nominations
4.2 Funding and Offers
4.3 Publications, Research and Briefings
4.4 Websites and Multimedia
4.5 Events

4. Useful Resources

4.1 Competitions and Award Nominations

KIDS logo design competition,
closes 15th April

The Department for Education has launched the Pupil Premium Awards 2013, nominations are open until 17th April, awards to be announced on
26th June

The Street Design Awards 2013 are now open for nominations, deadline for submissions is
26th April

4.2 Funding and Offers

The People’s Millions is now open for applications, closing on
13th May

The Family Fund have a travel insurance product for families struggling to get appropriate cover for their disabled or seriously ill child when going away on holiday. They have negotiated an insurance package which is reasonably priced for families. For more information visit:

Disability Grants website brings together a number of grants for disabled people. The ACT Foundation (ACT) provides grants to individuals and other charities, with the aim of enhancing the quality of life for people in need. Grants can be given for buildings, equipment and financial assistance. There is no maximum grant size.

The Garfield Weston Foundation has supported a wide range of organisations with grants of varying sizes. There are no formal deadlines for submitting applications and organisations should allow approximately four months for a final outcome.

True Colours Trust supports organisations and projects that support disabled children and their families on a daily basis. The Trust has a grants programme that provides grants of up to £10,000 to help smaller organisations develop and deliver programmes for children, their siblings and families.

Archer Trust supports UK charities for whom a grant of between £250 and £3,000 will make a big difference. It supports organisations which provide aid or support to a defined group of needy or deserving people, for instance disadvantaged or disabled people. It prefers to support organisations working in areas of high unemployment and deprivation.

4.3 Publications, Research and Briefings

4.3.1 Inclusion, Rights and Equality

The Council for Disabled Children, Spring 2013 digest is now available to

Every Disabled Child Matters briefing on the Children and Families Bill

Special Education Consortium has produced a number of briefings on the Children and Families Bill

Indicative drafts of the Special Educational Needs
Code of Practice and Regulations published

SEND pathfinder progress report,
March 2013

Office for Disability Issues resources ‘Fulfilling potential, working together to empower disabled people’

Department for Transport ‘Personal Independence Payment and eligibility for a
Blue Badge’

A template booklet on
Right from the Start Principles has been developed by Scope to support professional good practice in working with families of disabled children with complex support needs at the time of diagnosis and beyond

Ofsted, ‘Critical issues in the provision of youth work for
young disabled people’

The Children’s Commissioner for England ‘Child Rights Impact Assessment of the Children and Families Bill –
Summary for Children and Young people’

The Children’s Commissioner for England ‘
They go the extra mile - reducing inequality in school exclusions’

Contact a Family ‘
Falling through the net - illegal exclusions, the experiences of families with disabled children in England and Wales (2013)’

Contact a Family briefing ‘Understanding your child’s behaviour’

4.3.2 Communication & Participation

Family Footings is a source of free information and materials on person centred thinking. The website hosts a number of useful resources:
factsheets summaries of person centred thinking tools
“creative tips” infographics useful ideas for using different person centred thinking tools
templates to print off or save for future use
examples of how the templates have been completed by other families stories – parents sharing their experiences of using person centred thinking

Children’s Commissioner report ‘
We would like to make a change - children and young people’s participation in strategic health commissioning’

Department for Education statutory guidance on the
participation of young people

Whizz-Kidz report ‘Generation Inspired? A Paralympics legacy for young disabled people’

National Citizen Service ‘It all starts at Yes’

The Young Person’s Guide to the Children and Families Bill

Preparing for Adulthood have updated the resources section of their website

First government supported
‘sexting’ guidance issued for schools and youth groups

A wheelchair user’s guide to
picking a university

The Communication Trust ‘What Works’ database for speech, language and communication interventions

4.3.3 Play & Leisure

Play England, Business Plan Executive Summary 2012-2015

CPIS, Children’s Play Update,
February 2013

PlayToday issue 5 is now available to download

Issue 39 of
Play for Wales is now available to download

American Journal of Play, volume 5, winter 2013

Common Threads is launching the Journal of Playwork Practice

The last ever issue of
Playwords is now available, please contact Common Threads for the password

Children’s Play Advisory Service has a number of interesting articles to download

OPAL community environment report:
exploring nature together. Davies, L., and others

The essence of play: a practice companion for professionals working with children and young people. Howard, J., and McInnes, K. London: Routledge, 2013

Adventure and Anarchy, the wild world of the adventure playground

Wild Rumpus report on families and art in outdoor spaces

Kids in Museums Manifesto

Policy for Play blog considers an ethical framework for play

New animation from Love Outdoor Play

4.3.4 Policy & Ideas

The Chancellor of the Exchequer delivered his
annual Budget to Parliament on 20th March

New Department for Work and Pensions guidance for local authorities regarding the
‘Bedroom Tax’ and disabled children

Department for Education published the
Children and Families Bill

Compact Voice
Impact Report 2012

Changes to NHS care came into force on April 1st, this
Department of Health document explains some of those changes

Personal Health Budgets,
a guide for GPs

NHS Commissioning Board ‘Safeguarding vulnerable people in the NHS, Accountability and Assurance Framework’

Making it Work good practice database

The British Library has a massive digital archive on
Social Welfare

University of Bristol ‘Confidential Inquiry into premature deaths of people with learning disabilities’ (CIPOLD)

4.3.5 Early Years & Childcare

Department for Education revised statutory safeguarding guidance
‘Working together to safeguard children’

Daycare Trust / Family and Parenting Institute,
Childcare costs survey 2013

Four new
Early Support films are available to watch online

official statistics ‘Children’s centres inspections and outcomes’

Ofsted ‘Inspection of children’s centres, a report on the responses to the consultation’

Department for Education ‘The Early Education Pilot for two year old children; age five follow up’
research report March 2013

The British Heart Foundation has just published
‘Early Movers’ a new early years physical activity guide

Department for Work and Pensions paper ‘A survey of
childcare and work decisions among families with children’

Earlyarts UK,
National Consultation 2012 summary of key findings

4.4 Websites and Multimedia

Open Britain website for disabled visitors to and in the UK

Join the
Disability Action Alliance!

e-include is the e-journal of Inclusion Europe

Young people with autism premier their
animated film in London

The Department of Health
website moved to a new platform during March

The Department for Education is moving some of its resources to a new
online platform
4.5 Events

Best practice seminars, participation with young disabled people. London,
17th April

Flourish summit 2013, early childhood and the science of wellbeing. London,
27th-28th April

Free Department for Education events to support the revised statutory guidance ‘Working Together to Safeguard Children’. Sheffield and London, 2nd, 3rd & 9th May

Music to Young Ears, engaging deaf children with music. York, 8th May

Free Place2Be Commissioning events.
Leeds, 14th May. Bristol, 5th July

Spirit 2013 Play conference. Cardiff, 14th–15th May

Improving disability support in the workplace. London,
15th May

Autism and Asperger’s, strategies for success. Oxford,
18th May

Play in times of Austerity. University of Leicester,
22nd May

Changing Faces event for children starting secondary school. London,
8th June
Autism and relationships, puberty, sex and sexuality conference. Manchester, 11th June

Evolve 2013, the annual conference for the voluntary sector. London,
17th June

The Equality Act and protected characteristics in the workplace. London,
25th June

Men in Childcare, half day conference. London,
27th June

Love Parks week. Nationwide,
27 July – 4 August

Play Day 2013 will be on the
7th August

Just So, family arts festival. Cheshire,
16th-18th August

The Beauty of Play. Staffordshire,
6th-8th September

NCVO 19th Voluntary Sector and Volunteering Research Conference. Sheffield,
10th-11th September

Childcare Expo. Coventry, 27th-28th September

25th European Academy of Childhood Disability (EACD) conference. Newcastle-Gateshead,
9th-12th October

Disclaimer: Please note that inclusion of information in this eBulletin does not imply endorsement of products or services by KIDS.
KIDS black-on-yellow 2

Welcome to the (slightly late) March edition of the NIP Network bi-monthly eBulletin compiled by KIDS National Development Department (NDD). Please feel free to forward this eBulletin to friends and colleagues with an interest in inclusive play, leisure and childcare. To subscribe or to include information & events in the next issue, please email

1. KIDS NDD Update

1.1 Making it Personal update

KIDS is delighted to announce the launch of a new FREE eLearning package for parents of disabled children and young people to use.

The eLearning is intended as a simple walk through some of the information presented in the ‘Taking a Personal Approach: A Parents Guide to Personal Budgets’ handbook.
The guide was produced earlier this year for parents and carers about personal budgets and how government changes may affect you.
You can sign up to access the ‘Making it Personal’ eLearning package for free here:

The Parents Handbook is still freely available in long and short versions for ease of use.
You can download it from the KIDS website here

Work on the current ‘Making it Personal’ project ceased at the end of March 2013, however all of the resources are still available online to use.
For more information on this project, please visit

Keep an eye out for the next eBulletin (due in May) for information on how KIDS intends to continue this work around personal budgets as further policy developments take place.

1.2 Inclusion into Practice update

Work Taster Launch

KIDS are proud to announce the launch of the Work Taster Project. Funded by the Zochonis Trust, work tasters are an opportunity for young disabled people to try out being in a working environment. Contact to find out more.

Free Time Consortium
Since February 2012, KIDS have been offering a volunteering scheme for young people in play and leisure, part of the Free Time Consortium
As part of the scheme KIDS has been working with St Peters and Community Music to run a 10 week music project. On the 23rd February four of the young people took to the stage to perform in front of an audience for the very first time.
The group known as Merj sang six songs, five covers and one original. The covers were an eclectic mix of modern day songs and hits from the 60’s.
Due to the success of this project for the young people, St Peters were able to secure funding to continue the music project for a further ten weeks with the support of KIDS and volunteers.
To become involved in the project in Greater Manchester or for more information, please contact Tracy Ryan on 07584 702026 or email

Relationships and Sexuality Training
KIDS have just completed a pilot set of training in relationships and sexuality which we were commissioned by a local authority to deliver.
These discrete and complimentary training sessions were tailored for the 3 groups of participants: young disabled people, parents and youth workers.

Our work helping young disabled people learn about sex and relationships has also recently featured in The Guardian.

To find out more, contact or follow this link to our work

1.3 Training and eLearning update

KIDS eLearning Half Price Sale

KIDS’ eLearning suite has been updated, redesigned and is moving to a new more interactive platform.
The full suite of 47 modules will be transferred to the new platform in Spring 2013.

To celebrate we are having a flash half price sale!
• Buy the complete package of 47 modules for £4,750 – that’s HALF PRICE!
• Buy any five modules from a list of 15 already on our new platform for £562 – that’s also HALF PRICE!
• Buy any ten modules from a list of 15 already on our new platform for £775 – again that’s HALF PRICE!

Terms and conditions apply. All prices exclude VAT.

For more information or the flyer, please contact our sales team on 020 7520 0405 or email us at

You can also find out more information by visiting

1.4 Other news from KIDS

KIDS logo design competition

KIDS, Action for Children and Barnardo’s are joining forces to create a new website for disabled children called ‘’
The site which will be launched in June 2013 will make it easier for families of disabled children and young people to book short breaks.
This will give families more control over the short break, when and where it occurs and who is going to provide it.

We are inviting all disabled children (and their siblings) who currently use our services to use their artistic talents to think big and design the logo for our new site.
We ask you to think creatively around the theme of ‘Choice’ and what this means for you.

One lucky artist will see their artwork appear on the new homepage and will win a new 16GB WiFi iPad with Retina Display worth £399, plus £50 iTunes voucher.

The closing date for entries is 15th April

Early Support update
As part of the Early Support Consortium, KIDS has contributed to the redevelopment of the Early Support resources.
The Early Support information resources describe, discuss and explore either a specific impairment or more general information that parent carers and young people have told us they would find useful to know.
The resources were produced in response to requests from families, professional agencies and voluntary organisations for a better standard of information about particular conditions or disabilities and more general and reliable background knowledge resources.
The existing Early Support resources have been revised, updated and adapted for use with older children and disabled young people. They are available FREE to download. To find out more and download the resources, please visit the Early Support website

Case studies update
KIDS has been collecting and disseminating case studies to illustrate inclusive practice and procedures in our highly successful publications and briefings for many years. These are still available to purchase or to download
KIDS has also produced an online resource of case studies, demonstrating practical examples of inclusive practice. 
The case studies showcase diverse examples of inclusive practice in play and leisure settings and demonstrate that each disabled child and family will live in a unique community with access to different services and how these services have responded to meet the requirements of disabled children and young people.
We have just received and added another case study to the resource: Community Arts Network is a not for profit community interest company running a range of activities including inclusive after school clubs and Arts Play Holiday clubs, a youth club and short breaks scheme and training for adults.

If you know of any good practice examples and would like to share them, please contact
2. Featured Organisation –
Include Me TOO

IncludeMeToo Include Me TOO champions the rights and entitlements, and promotes social justice and equality for all disabled children and young people.

Their aim is to increase involvement, participation and representation of black and minority ethnic (BME) disabled children and their families and other marginalised communities locally and nationally on decisions which impact on their lives.
This is achieved by developing and supporting cultural awareness and holistic and appropriate services / support through partnership working with disabled children and families and a range of other stakeholders.

Include Me TOO have produced a report regarding BME parents and carers representation and participation on parent carer forums.
48 of 150 parent forums participated and several community outreach workshops were facilitated in various regions directly with BME parents and carers regarding representation and participation; including their current views regarding their involvement in influencing local decisions and planning of services.

The report highlights BME parents and carer’s participation needs a coordinated approach, specialised assistance and resources. 40 out of 48 parent forums highlighted they need assistance and support in this area. This report is part of IM2’s ‘Time for REAL Action’ research and work programme.
The report further highlights greater collaboration with the BME voluntary and community sector is required and an investment towards BME parent and carer participation to ensure all parents/carers voices have a chance to be heard to influence and shape current and future services for their children.
For a copy of the report please email and the report will be forwarded to you.

Include Me TOO can support and strengthen BME parent carer involvement and provide advice and support to parent carer forums, children and young people services including partnership boards and committees.
Contact us if you wish to receive a copy of the report or discuss the support and services Include Me TOO provide.

Include Me TOO contacts: Email:
Tel: 01902 711604 / 01902 399888 Web:

3. News updates – February / March

3.1 Consultations

Contributing to consultations is often the only way we can make an impact that is measured by the government.
Please take the time to look at what is currently up for consultation and how it may impact on your work.
This is even more important with the Government decision to curtail minimum timeframes for consultation periods.

Department for Education consultation on reform of the National Curriculum in England, closes 16th April

Department for Work and Pensions consultation on on people and households claiming Universal Credit, Personal Independence Payment and other benefits: Plans for 2013-2017, closes 24th April

Department for Education consultation on criteria for Early Years educator qualifications (level 3), closes 22nd April

Department of Health, consultation on topics for new NICE quality standards and guidance to improve the quality of social care, closes 26th April

Department for Education consultation on proposed changes to the role of the local authority in early education and childcare, closes 6th May

Department for Business, Innovation and Skills consultation on shared parental leave, closes 21st May

3.2 Campaigns and Projects

Mencap’s ‘Breaking Point’ campaign for short breaks for families with disabled children

Unite has launched a survey on cuts to play services in the past year, if you are involved in playwork take part here

Every Disabled Child Matters is asking parents of disabled children to tell their stories to improve the Children and Families Bill

4Children has launched the Fair4Families campaign to support families through tough times

Scope ‘Keep us close’ campaign

Every Disabled Child Matters campaign asking the government to review benefits cuts to disabled children

Fair Play for Children petition on Residential Street Parking and Children’s Play

Every Child In Need petition to keep minimum standards for vulnerable and disabled children

Back Britain’s Charities this campaign calls on the public, businesses and the Government to stand together and lend their backing to Britain's charities so that they continue their vital work in communities across Britain.

The National Deaf Children’s Society has made a film to promote the Stolen Futures campaign and petition against cuts to services for deaf children. By April 2013 a third of England’s councils will have made cuts to support for deaf children, including funding for Teachers of the Deaf, specialist teaching assistants and speech and language therapists.
Sign the petition to save services for deaf children, closes 22nd May

Carers UK survey ‘The State of Caring 2013’

3.3 Disabled Children & Young People’s Rights and Inclusion

The Children and Families Bill received its second reading on the 25th February and will be scrutinised in depth again on 16th April. Families with disabled children should pay close attention to the outcome.

Children and young adults with Special Educational Needs to benefit from new legal health duties which are set to strengthen SEND reforms
The government has also issued a pledge to provide better health services for disabled children

Research released earlier this month by the VIPER project presents new evidence to show that disabled young people are being denied the right to participate in how local services, such as education, health and leisure are being developed and delivered. VIPER is a three-year project, to research young disabled people’s participation in decisions about services.
A group of 16 young disabled people work as co-researchers in partnership with the Council for Disabled Children (CDC), the Alliance for Inclusive Education, the Children’s Society and the National Children’s Bureau (NCB) Research Centre.
VIPER findings show that:
• Many disabled young people are still being excluded from participation and decision making opportunities
• Disabled young people’s participation is not fully embedded in strategic, service level or individual decision making
• Basic access needs to support disabled young people’s participation are not being met
• There is a lack of feedback and understanding of the impact of disabled young people’s participation.
VIPER has produced a policy report calling for the government to act on these findings and support young disabled people’s participation in decision making.

The Department for Education’s Young People’s Advisory Group, now formally known as EPIC, have been working to advise the government on the SEND reforms in the Children and Families Bill. EPIC (Equality, Participation, Influence, Change), are 16 disabled young people from across England selected from over 150 applications to give feedback and advice on how the reforms will affect disabled young people.
CDC has been working with the Department for Education to support these young people to have their say on the reform proposals.
EPIC also recently launched their website which has information about what they have done so far, and, importantly, how other disabled young people and organisations can get involved and have their say on the SEND reforms. They have developed an open Facebook group for other young people to come and share their views.
EPIC is keen that their work represents the voice of as many disabled young people as possible.
You can visit the website or Facebook to have your say.

CDC and NCB have submitted a joint response to a consultation on proposed changes to the NHS Constitution, the document that brings together what public, patients and staff can expect from the NHS.
The response makes a number of specific recommendations about how the proposed changes to the NHS Constitution can be amended to make them applicable to all children, young people and their families.

Attitude is Everything improves Deaf and disabled people's access to live music by working in partnership with audiences, artists and the music industry to implement a Charter of Best Practice across the UK.
Attitude is Everything wants to find out how things are at music events for disabled teenagers. If this is you, then their friendly team would love to hear from you!
To join their team of mystery shoppers, please first get your parent or guardian’s permission, then either register online, or email to request the forms and more information.

The Family Fund will continue to support families with disabled children for a further two years.

Disabled children and young people are still being illegally excluded from schools.

Councillor apologises and resigns for ‘put disabled children down’ comment.

The Paralympic legacy, what young disabled people want.

Councils cut back on short breaks for disabled children

Jo Whiley ‘why carers need a break’

Children with autism more likely to be bullied shows survey

3.4 Play and Leisure

The United Nations Committee on the Rights of the Child has adopted a General Comment that clarifies for governments worldwide the meaning and importance of Article 31 of the Convention on the Right of the Child.
A General Comment is an official statement that elaborates on the meaning of an aspect of the UNCRC that requires further interpretation or emphasis.
The General Comment will define all elements of Article 31 and explain their importance in the growth and development of children and their impact on children’s overall wellbeing.
Article 31 ensures that ‘State Parties recognise the right of the child to rest and leisure, to engage in play and recreational activities … and to participate freely in cultural life and the arts.’
The General Comment will provide guidance to the governments of the 192 countries (States Parties) that are signatories.
The objectives of the General Comment are:
a) To enhance understanding of the importance of Article 31 for children’s well-being and development, and for the realisation of other rights in the Convention.
b) To provide interpretation to States parties with regard to the provisions, and consequent obligations, associated with Article 31.
c) To provide guidance on the legislative, judicial, administrative, social and educational measures necessary to ensure its implementation for all children without discrimination and on the basis of equality of opportunity.
The International Play Association (IPA) has taken a lead role in the development of the General Comment.
The full document and a summary will be available in the next few weeks.

Some good news for play organisations!
Play England secures extra funding from the Social Action Fund for the Free Time Consortium
A consortium of play organisations have also received Department of Health money to support street play

The Free Time Consortium has made a huge impact in recruiting new volunteers to support children’s play as part of the 'Get Involved in Play' programme funded by the Social Action Fund.
For further information about the activities of the Free Time Consortium, visit

Join Play England and make a difference, supporter membership is FREE!

Bristol’s drive towards inclusive play for disabled children

Adur and Worthing councils pilot temporary play streets scheme throughout 2013

Milton Keynes Play Association celebrates its 40th Anniversary this year

Union vows to keep fighting play centre closures

Play in peril, help map the cuts to play provision in the UK and build a national picture

Inside the Royal London Hospital play space

Modern British Childhood is an exhibition at the V&A Museum of Childhood (Bethnal Green), running until 14th April.

3.5 Early Years and Childcare

The Department for Education and The Early Intervention Foundation Consortium have signed a contract which will see the creation of an independent Early Intervention Foundation

The Department for Education has released revised statutory safeguarding guidance

Government to review child protection thresholds

Half of councils to hold back childcare cash

Early education pilot raises questions over standards

Government promises to create better childcare system for parents whilst nursery ratio plans are criticised by government advisor

Childcare changes will cut play and inhibit learning say carers as childcare leaders criticise ratios consultation

Childcare costs rose by £5 a week in 2012 shows survey

The Daycare Trust and Families and Parenting Institute have merged

Web safety lessons urged for five year olds
3.6 Training and Workforce Development

Teachers and SEN support staff can now apply to the National Scholarship Fund.
Teachers can bid for up to £3500. SEN staff can bid for up to £2000. The application window, which opens for three weeks from 8th April, will offer funding to teachers in the four priority subjects of English, mathematics, science and SEN.

The Teaching Agency has merged with the National College for School Leadership to form a new agency on 1st April 2013.
The new agency, called the National College for Teaching and Leadership will focus on promoting high quality teaching and leadership.

The Cabinet Office is offering commercial skills masterclasses to help VCS organisations to win government contracts. Nationwide until March 2014

New 24+ advanced learning loans are being made available to help fund further education for older learners

SkillsActive has launched a new online Skills Health Check, a free service which enables you to identify key areas for development in your organisation.
Go online to take your Skills Health Check

The Cabinet Office is offering two year apprenticeships to 18-21 year olds, applications open in April for start in September.

Surrey County Council has set up a Workforce Development fund to support playwork, early education and childcare practitioners in Surrey, deadline for applications is 14th May

In partnership with the Royal College of Paediatrics and Child Health, The Council for Disabled Children has developed a series of online resources for professionals on how to develop Emergency Healthcare Plans (EHP).
An Emergency Healthcare Plan is a brief document containing the key information about a child’s condition.
In the event of an emergency situation, having an Emergency Healthcare Plan can make communication easier and ensure that a child receives the right treatment.
The resources include:
• Two e-learning modules covering what an EHP is, how to draw one up and the core principles involved in developing one.
• A series of role plays to help professionals discuss EHP with families
• Links to externally developed tools including example EHPs and guidance.
View the Emergency Healthcare Plan resources at:

The Council for Disabled Children has also supported the development of a learning disability module for the ‘Spotting the Sick Child’ website to help doctors work with children who have special educational needs.
The module is a resource for health professionals designed to enable them to better diagnose sickness in children with learning disabilities.
View the Spotting the Sick Child learning disability module here

The Charities Evaluation Service are offering free online training introducing the PQASSO Quality Mark

Ambassadors for Careers with Children and Young People.
Skills for Care & Development has announced a new initiative being launched to support recruitment across early years, children’s and young people’s services, helping employers get the right people into the right posts and retain them.
The fundamental aim of the service is to improve public awareness of work in early years and children’s services as a rewarding, valuable and long term career.
The Ambassadors will be people who have first-hand experience of working in the sector and can bring passion, experience and inspiration to support others to consider working in early years, children’s and young people’s services as a positive career choice. The project has received co-investment from the UK Commission for Employment and Skills through the Employer Investment Fund. The organisation is now looking for any employers or potential Ambassadors who like the sound of this initiative or might like to pilot the scheme.
Please contact to register your interest.

Together for Short Lives has launched a new set of End of Life Care resources aimed at supporting professionals working in children’s palliative care with practicalities and considerations once it has been recognised that a child is coming to the end of their life

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