Final evaluation report


You can read the report of Coventry University's work to evaluate our project here.

Joint commissioning case study


Luton Clinical Commissioning Group Children and Young People’s Palliative Care Strategy 2016 – 2019 has been developed collaboratively with a working group which comprised members from Luton Clinical Commissioning Group; Luton Borough Council, Luton & Dunstable University Hospital, Keech Hospice and a local children’s charity.

Personal budgets workshop: March 2016

 

Personal budgets workshopIn March 2016, Together for Short Lives held a one-day workshop to explore what we know so far about personal budgets for children and young people with life-shortening conditions - and how they are likely to be used in future.

Attended by commissioners and providers of children's palliative care, the session covered:

  • how to commission using personal budgets for children with life-shortening conditions.
  • how to better support families and prepare for personal budgets
  • the latest England-wide public policy framework for personal budgets
  • different approaches being taken to personal budgets by commissioners, children’s palliative care providers and families
  • the potential implications of personal budgets for commissioners, children’s palliative care providers and families - including opportunities and threats.

You can access our report from the workshop here, which sets out our findings and recommendations with regard to personal budgets.

Presentations from the session are available below:

Together for Short Lives introductory slides

NHS England: Steven Pruner, Personal Health Budgets Regional Lead

Leah Booth: My Personal Budget and Me

The children's palliative care providers' perspective

Masterclasses: Jointly commissioning palliative care for children and young people

 

Joint commissioning masterclassIn December 2015 and January 2016, we held two masterclasses to help both commissioners and providers learn about jointly commissioning palliative care services for children aged 0-25, including short breaks. The masterclass builds on the publication of Together for Short Lives’ joint commissioning resource for CCGs and local authorities

Both sessions brought commissioners and providers together to discuss and learn about successful joint commissioning and hear about cases in which joint commissioning has improved outcomes for children and young people. Following a series of presentations which you can download below, delegates were invited to consider the following questions for each stage of the joint commissioning cycle in their local areas:

  • What is working well in your local area in terms of jointly commissioning children’s palliative care?
  • What challenges are you facing in jointly commissioning children’s palliative care?
  • What will you do as a result of today, both individually and organisationally - and by when?
  • What else would you find useful?

Presentations from the session are available below:

Together for Short Lives' introductory slides - joint commissioning masterclass

Jointly commissioning palliative care for children and young people aged 0 - 25 including short breaks: a guide for local areas in England

Rachel Thompson: Parent Carer

Download our report of the masterclasses, which summarises our findings and recommendations, here.

Do you have any experiences or examples of joint commissioning which you would like to share? Why not share it on our joint commissioning LinkedIn group?

Events: Helping children who need palliative care to access education

 

SEND education event BirminghamIn September, Together for Short Lives held four regional events to improve access to education for children who need palliative care.

The events (held in Birmingham, London, Newcastle and Manchester) brought together education providers, commissioners, and health professionals to discuss best practice and the challenges in improving access to education for this group of children and young people. Speakers at each event included parent carers, education providers and children’s palliative care providers.

The lively sessions culminated in breakout discussions where groups considered four key questions:

  • What is working well in your local area?
  • What are the challenges?
  • What will you do differently after today?
  • What else would be helpful?

Click here to download a report of the findings from the discussion sessions.

Presentations from the events are available below:

Acorns Children's Hospice Trust: SEND challenges and successes

Doug Morris - Who delivers children's palliative care?

Richard House Children's Hospice and Orchard Hill Academy Trust - Partnership working

SENtral Consultants - Helping children who need palliative care to access education - Together for Short Lives' resource

Together for Short Lives - What is children's palliative care?

West Park Academy - An educational perspective

Jointly commissioning palliative care for children and young people 

 

Joint commissioning guide cover

Click here to download

Our new resource is designed to support clinical commissioning groups (CCGs) and local authorities in England to effectively commission palliative care for children and young people aged 0–25. Our resource also supports health and wellbeing boards to understand their role in the commissioning process.

It sets out the duties on each body and what they should do to jointly commission children’s palliative care services. It also provides a step-by-step, which follows the established joint commissioning cycle, including advice for CCGs, local authorities and health and wellbeing boards on what they must and should do to:

  • establish the right local partnerships
  • understand how many children and young people they need to commission services for - and plan for what they need
  • create economies of scale
  • plan a local journey for children and young people with life-limiting conditions
  • ensure that services are provided jointly
  • fund children’s palliative care services in the context of the development palliative care funding currency
  • review services.

Helping children who need palliative care to access education

 

interactive online resource for education providers in EnglandTo use this resource on a PC, please right click on the link below, save a copy onto your computer and open using your usual pdf reader.

We have published an interactive online resource for education providers in England. Free to download and use, our resource helps schools, further education and early years providers to answer the following questions:

  • What is children’s palliative care? Who needs it?
  • What do children with life-limiting conditions need to help them access an education? Does this vary according to different conditions, and how?
  • What should education providers do to meet these needs? What are they obliged to do? What should they do?

Our resource offers information relevant to:

  • Governors and trustees
  • Heads and senior managers
  • SENCOs
  • Classroom teachers
  • Teaching assistants
  • School nurses

Our resource aims to guide and inform providers of education for children and young people up to the
age of 25. It is not relevant for providers of higher education. 

Personal budgets workshop: November 2014

 

This was our second workshop on personal budgets, held a year on from our original event which aimed to help voluntary and community sector (VCS) providers of children's palliative care prepare for their introduction. Our 2014 event set out:

  • How the personal budgets agenda has moved on since 2013.
  • NHS England’s vision and strategy for personal budgets for children with long-term health conditions.
  • How local areas are engaging with the VCS to implement personal budgets.
  • How brokerage is working.
  • How parent carers of children with life-limiting conditions are using personal budgets.
  • The steps that VCS organsiations have been taking - or are planning.

We also sought views from VCS providers of children's palliative care on how Together for Short Lives can support them as personal budgets are more widely used. 

Read the report of our event here.

You can read the PowerPoint presentation slides from the day here:

Together for Short Lives personal budgets workshop presentations

NHS England: understanding personal budgets

Personal budgets: a parent's perspective

Click here to access an example of an anonymised support plan developed to provide the basis for a personal health budget for a child.

Our event included a presentation from a parent carer, who spoke about her family’s experience of getting a personal health budget for their daughter. The parent's story is included as a case study on page 44 of the Department for Education-funded resource. 

Regional network events: June & July 2014

 

SEND regional network event in Cambridge, 8 July 2014We have held six regional events which aimed to link professionals involved in caring for children with life-limiting and life-threatening conditions with commissioners and providers across health, social care and education services. The events aimed to improve understanding of children and young people who need palliative care and how to support them in planning and services. Delegates heard different perspectives on integrated care - and some ideas for achieving it - from parents of children with life-limiting conditions and SEND pathfinders. Click here to read our report of delegates' feedback from the events. You can access the PowerPoint presentation slides given at the events below:


A parent’s experience and perspective on integration - Doug Morris

A parent’s experience and perspective on integration - Rachel Tyler

Integration in practice - Nottinghamshire SEND Pathfinder

Integration in practice - Bromley SEND pathfinder

An introduction to children's palliative care

Together for Short Lives SEND project and Transition Taskforce

We also presented a short video about Nottinghamshire's Education, Health and Care (EHC) Plan pathway.

Personal budget briefings

 

SEND engagement resource

We have published a series of briefings prepared by the charity In Control to help voluntary sector providers of children’s palliative care in England - including children’s hospices - get ready for the introduction of personal budgets.

From September 2014, children and young people with Education, Health and Care (EHC) plans will have a right to a personal budget. Where they want them, families will be able to use their personal budget - comprised of money allocated to them by the NHS and local authorities - to pay for many of the education, health and care services which their child needs.

  1. Briefing one provides an introduction to personal budgets and describes how they have worked already in other settings, such as adult social care
  2. Briefing two describes how personal budgets will work for families of children with life-threatening and life-limiting conditions
  3. Briefing three advises children’s palliative care services on the action they need to take to prepare for personal budgets being implemented.

All three briefings include real-life case studies and links to other resources and best practice examples.

Local engagement resource 


SEND engagement resource To use this resource on a PC, please right click on the link below, save a copy onto your computer and open using your usual pdf reader.

We have produced a SEND local engagement resource for voluntary sector providers of children’s palliative care in England. This aims to help services identify and engage the people and organisations in their local health, care and education sectors who can be influential in bringing about more integrated assessments and services for children and young people with life-threatening and life-limiting conditions. They include commissioners, providers and other system leaders. Our resource includes:

  • stakeholders maps
  • advice on how to contact individuals and organisations
  • suggested content for introductory emails and letters
  • key messages about children’s palliative care and life-threatening and life-limiting conditions in children.

Engaging the pathfinders

One of the key objectives of our project is to ensure that children and young people with life-limiting and life-threatening conditions are included in the pathfinder testing. In order to facilitate this, we made contact with all the pathfinders to offer them opportunities to meet with local voluntary sector providers of children’s palliative care and a representative of Together for Short Lives. The purpose of these meetings was to share information, forge relationships and explore ways of working together in future. You can read a report of our work to engage the SEND pathfinders here.

Project briefings - sign up here

SEND newsletter June 2013

SEND newsletter August 2013

SEND newsletter October 2013

SEND newsletter December 2013

SEND newsletter February 2014

SEND newsletter April 2014

SEND newsletter July 2014

SEND newsletter September 2014

SEND newsletter December 2014

SEND newsletter March 2015

SEND newsletter April 2015

SEND newsletter August 2015

SEND newsletter November 2015

SEND newsletter March 2016

Personal budgets workshop

The report of our personal budgets workshop held on 7 November 2013.

A strengths, weaknesses, opportunities and threats analysis (SWOT) of personal budgets in children's palliative care.

Dot Gillespie presentation

Gail Bedding and Laura Sercombe presentation

Personal budgets workshop presentations

Network event: 6 February 2014

The SEND reforms and Together for Short Lives' project

What happens when parents are given the news that their child has a life limiting condition: Doug Morris

Integration - a pathfinder perspective: the Nottinghamshire Pathfinder Project Team

Integration - a provider perspective: St Oswalds Hospice

Developing a personal budgets resource for children s palliative care services: In Control

Supporting schools to better understand and support children who need palliative care

Other useful resources from Together for Short Lives

 

Click here to download our Core Care Pathway for Children with Life-limiting and Life-threatening Conditions.

Click here to find out more about our Transition Taskforce which is working to bring about smoother and better planned transitions for young people moving from children's to adult's palliative care.