together
for the
49,000

Our Value and Impact 2016-2017

together for the49,000

Our Value and Impact
2016-2017

 

Together for Short Lives is a UK-wide charity that, together with our members, speaks out for all children and young people who are expected to have short lives. Together with everyone who provides care and support to these children and families, we are here to help them have as fulfilling lives as possible and the very best care at the end of life.

 

Foreword

Thank you for taking time to read Together for Short Lives’ Impact Report – it’s one of the ways we demonstrate the difference we have made with the money raised through our generous supporters. So, in part this is to say thank you for helping us make a difference to children and families.

Most importantly, though, this report is for the 49,000 children and young people with life-limiting conditions that we are here to speak up for. Improving their quality of life and end of life care is why we are here.

We don’t work alone. Much of our impact has been delivered in partnership with our members across the UK. We know that by working together we have the best chance of delivering our ambition of positive change for children and families.

 
Barbara

Barbara Gelb OBE

Chief Executive

Terry

Terry Moran CB

Chair

When life changes forever, where do you turn?

111 hours of support was given on our Together for Families Helpline

100%
reported the information they received was high quality

99%
would recommend it to a friend

887 people
are part of our family community. That's almost a third more than last year, and thousands of families are now part of our 42,000 strong social media voice

66 Families
were supported by our advocacy service in partnership with LawWorks this year

Almost 100,000 people
visited our website as the children's palliative care hub

almost 6,500
resources downloaded to help families get the best care

7,000 found support
in their area using our directory

42,000 got help
from our family pages

Getting the right support makes a world of difference

We distributed £720,000
to children's hospice services to help them provide lifeline care

£11 million

Once again we helped ensure £11 million in children's hospice grant funding in England from NHS England

We spoke to almost
300 politicians
about what children and families need most - that's 25% more than last year

Three pilot sites delivered a new
family support volunteering service

60 Volunteers
recruited to help families at home

62 families
matched with volunteers, and 48 of these families have already started to receive regular volunteering to make life easier

692 hours
of volunteering at home; that's the equivalent of 28 full days

Growing up shouldn't mean growing out of support

85 adult
hospices engaged in our Transition Taskforce - connecting children's and adult palliative care services

46 adult
services are now working with children's services to develop services for young people

£750,000
raised to fund projects that make a difference for young people over the next three years as part of our new Transition Awards Programme

Strengthening our collective voice for seriously ill children and their families

Our membership is now 1,125 strong - that's more than 28% up on last year

Over 100 Families
and young people in our reference groups

679
professionals attended 24 Together for Short Lives events over the year

We sent out 3,720 social media messages
72 messages a week

Changing perceptions

Children's hospice week
This year we told everyone it was time to put families first. The UK took notice

Our campaign was supported by
her royal highness, the Duchess of Cambridge

We reached 40 million people on twitter, more than doubling last year

We had stories published in the media with a circulation of almost 30 million

We were one of
24 charities
campaigning to break the silence on baby loss

We got the sector talking with our new blogs - sharing
49 exclusive stories

Being there

Being there
 

Through my eyes

Every family caring for a child with a life-limiting condition goes through many critical points throughout their journey together. From the second you get that life-changing news that your child is likely to die before you, family life changes forever…

Who do you turn to for help? How can you possibly care for your child around the clock? What if something goes wrong? And if your child lives into adulthood – what does support look like for a young adult and how do you get it? Why is your voice not being heard? And what do you do when the worst happens – who will be there for you?

 
0%

of families caring for a child with a life-limiting or life-threatening condition say they have felt isolated and alone since their child’s diagnosis.

Together for families helpline

  • We spent 111 hours talking to families and professionals.
  • 100% of families reported that the information they were given was high quality.
  • On average 99% of families would recommend the helpline to other families.
"The help is out there but it can feel like a minefield and trying to make it all work can be impossible. That’s why getting help to find the care we needed has made such a difference."

A whole world of support

  • Almost 100,000 people visited our website giving access to vital information and support.
  • Our family resources were downloaded over 1,700 times.
  • Our family community grew by almost a third to 887 members.
  • Thousands of family voices are now part of our 42,000 strong social media community.

Families together Facebook group

  • We responded to family calls to have a ‘safe place’ they can meet with other parents and carers by piloting this private group.
  • 94 family members.
  • 100% want to remain part of the group for the foreseeable future.
"I feel like I can only share my true thoughts and feelings with parents who have had a child with a similar condition. I’m part of a Facebook group and the people there lend an empathetic ear and a shoulder to cry on."

A helping hand when you need it most

  • 66 families were supported by LawWorks – providing free advocacy support to families who are having problems accessing the health and care system.
"Hallelujah. I have just had a call from the NHS and they have started the process of setting up the personal health budget. They have received your letter. Thank you so much. Wow, we are powerless without the voice of a lawyer."

A Happy Home

Three-year-old Maya has a complex multi-system disorder. Maya is not mobile, cannot speak and is fed through a tube. Together with mum and dad, Raj and Anita, she was living in a cramped two-bedroomed flat with two other adults and one other child. The family was at breaking point with no knowledge of how to apply for alternative accommodation.

Our advocacy drop-in clinic matched Raj and Anita to a lawyer who was able to advise the family on the legal issues they were facing, including welfare benefits. Happily, the family was able to move to a house outside the city and now has regular visits from physiotherapists, nurses and other health care professionals.

"We were at a loss at what to do but Claire was able to give us a clear picture of our options. She was amazing for us."

Our ‘Voices for Families’ service is generously supported by The Goldsmiths’ Company Charity and The Masonic Charitable Foundation.

Supporting lifeline services

Supporting lifeline services
 

Many families have to fight to get the care and support they need whilst struggling to cope with the immense practical, financial and emotional pressures of caring for a child with a complex health condition. Cuts to funding and services put families in danger of missing out on vital help.

Together for Short Lives is playing a key role in ensuring that there are the right lifeline services available for children and families, today - and in the future. And shouting about them!

Our film was watched by over 34,000 people and 500 people shared our social media post about the campaign reaching over 95,000 people.

We got people talking with 300 different contributors on social media and 700 tweets.

Helping families get the respite they need

We helped secure a two-year commitment from NHS England for vital funding for children’s hospice services in England of £11 million each year.

"If we no longer had the hospice grant, this would have a large impact on the funding we would have and therefore the services we could provide. End of Life Care would still be our priority and we would aim not to reduce this part of the service. However, other services would probably need to be reduced in accordance with the funding."
 

We distributed £720,000 to support local children’s hospices services all over the UK.

That’s the equivalent of almost 30,000 hours of care that we were able to fund.

Growing up

Growing up
 

Advances in medical technology mean that the number of young people with life-limiting and life-threatening conditions is increasing, but a shocking number of young people are not getting the support and care they need. There is an urgent need for new initiatives to transform the experience of young people with life-limiting conditions as they move from children’s to adult services. And we’re taking the lead…

Helping services to deliver lasting change

Together for Short Lives has launched a ground-breaking new Transition Awards Programme to help address the cliff edge in care experienced by young adults in their transition from children’s to adult services.

We have secured £750,000 to drive innovation and bring about real change for transition over the next three years.

We are working to fund partnerships between different services and different organisations who can work together to support young people. Awards will be in the range of £40K-£150K for up to 30 months.

Collaborating for action

Our national Transition Taskforce has developed regional action groups (RAGs) to foster engagement at regional and local level with young people themselves and their families as well as a variety of different professionals from the children’s and the adult sector.

This year, we’ve gone one step further and developed 8 local action groups within these regions to pinpoint and address the needs of young people locally.

50% of RAGs are now led by adult hospice services – which shows a huge shift. Adult services are recognising the need for good transition and are actively involved in making it happen.

85 adult hospices are now involved in the Transition Taskforce – that’s 85 hospices across the UK with young people on their radar – actively working to ensure that services are ready and equipped to help young people achieve the very best in care and support.

On top of this, 46 adult hospices are working directly with children’s hospices to develop their services for young people.

Young People’s Voices

Young people are always at the centre of our work – whether that’s by speaking up as part of our Young Avengers Group, taking the lead in their region or helping us ensure our publications are meeting the needs of the people they are designed for.

"Since working with Together for Short Lives and being a Young Avenger (I still LOVE the name!), I feel that what I have been raising as concerns or issues are finally being heard. People were so enthusiastic to listen to my story and how I coped through transitions etc." Leah Booth

End of life and bereavement

End of life and bereavement
 

Giving families choice in end of life care and time to grieve

Knowing that your child will die young is heart-breaking. It’s too much for any parent to bear alone. Families need all the help and support they can get preparing for their child’s end of life care – and it’s vital that every family has time to grieve and is supported throughout their bereavement.

 

Giving bereaved families a voice

 
 

30%

We want to give bereaved families a voice with 30% of our Family Reference Group being bereaved parents.

 
"Having had such a positive experience of people supporting us to care for our baby at the end of his life, it felt so important to share what worked well in the hope that other families may experience something similar. It felt like such a constructive and positive thing to get involved in."Sarah, mum to Finlay
 

Securing an end of life choice commitment

We believe that all families should be able to choose how and where they receive their child’s end of life care - at home, in hospital or in a children’s hospice. We were delighted when the government included children in its response to a review of choice in end of life care as a result of our lobbying efforts.

 

Campaigning to end child burial fees

We’re part of the Funeral Poverty Alliance, and we’ve been pressing the UK’s governments to help provide more help to relieve families bereaved of a child with the costs of arranging a funeral. Following pressure from Carolyn Harris (Labour MP for Swansea East), the Welsh Government announced that it would abolish burial fees for children.


Towards statutory leave for every bereaved family

We supported Will Quince MP’s campaign to make sure that parents across the UK bereaved of a child can take a fortnight’s statutory leave following their death. As a result, the Conservatives committed to introducing this in their 2017 general election manifesto.

Speaking up

Speaking up
 

It is simply not fair that the most vulnerable families in our society, who often have the weakest voices, are not heard or understood by policy makers. Together for Short Lives has strived to get families heard over the last year on the issues that matter most.

 

The hidden issues

We’ve been calling on the UK Government to lift the baby benefit bar. This would mean that families of young children under the age of three with life-limiting and life-threatening conditions would be able to access the mobility component of the Disability Living Allowance (DLA).

Currently the benefit is only available to children aged three and over, effectively trapping some families of young, seriously ill babies and children at home or in hospital, unable to make even the simplest of journeys.

Emma Murphy is mum to two-year-old Stanley who has Tay Sachs. He has no muscle tone and cannot move or support his head:

 
"The people who make these decisions haven’t a clue what life is really like. To get this mobility element of the DLA, a child is supposed to be three years old. Stanley might not live until he is three years old. To be told he can’t get this help is not right."Emma Murphy
 

Lifeline respite for families

We published a funding survey and commissioning maps to show the reality of the state of children's palliative care funding and planning.

 

Making family voices count

Our response to the NICE guidance resulted in some important changes including: recognising the importance of managed clinical networks in delivering high quality co-ordinated children’s palliative care and involving neonatal teams in care planning for babies when there’s an antenatal diagnosis of a life-limiting condition.

 
Vicky Whyte, mum to Leah, shared her personal experiences to inform the NICE guidance:

"It really helps to know that part of ‘Leah’s legacy’ is helping to make things better for others. Leah was very much a ‘people person’ and it’s what she would have wanted."
 

Key connections

 

We formed the first-ever All Party Parliamentary Group for Children Who Need Palliative Care.

We made sure children and families were always on the agenda – responding to 26 consultations in the last year.

We talked to almost 300 MPs about how they could improve children’s palliative care.

Our voice was heard – Together for Short Lives was mentioned 8 times in parliamentary debates. That’s 166% up on last year.

Making it count

6,926 Miles Hiked by 103 Trekkers

£

1,243 Miles ran by 67 runners

£

20,166 Miles ridden by 63 riders

£

30,000 feet skydived by 33 divers

£

A huge thank you

To all our fantastic corporate supporters and the wonderful people who work for them. Thanks to their enthusiastic, creative and inspiring fundraising efforts, we were able to distribute over £745,000 to children’s hospices and voluntary providers of children’s palliative care across the UK. We have enjoyed the support of a wide range of hugely valued corporate partners over the last year, including Hobbycraft, Center Parcs, Hays, Clyde & Co and The Entertainer.

 

Spotlight

In June 2016 Together for Short Lives and Center Parcs began a two-year partnership to help families make the most of their time together.

Each of the five Center Parcs Villages are twinned with their local children’s hospice – staff have spent time getting to know their local service and understanding the lifeline support they offer to families in their community.

All this and more means that Center Parcs has raised over £200,000 for the National Fundraising Scheme, supporting children’s hospice services. That’s more than double the original target for our first year.

"This is a record-breaking amount we have raised for a charity partnership in one year. I am so proud of everyone involved."Martin Dalby, Center Parcs CEO

Thank you to each and every one of our supporters:

  • A D Power Will Trust
  • Autoglass
  • Bayer plc
  • Bouygues UK
  • CAF Grant Fund
  • Center Parcs
  • Christadelphian Samaritan Fund
  • Clyde & Co
  • CSS Investments
  • Edith Murphy Foundation
  • Frankie & Benny’s
  • Gareth Neame
  • Hall and Woodhouse
  • Hays
  • Hobbycraft
  • Interserve
  • James Tudor Foundation
  • Jimmy Knapp Cancer Fund
  • John Ellerman Foundation
  • Leaders
  • Lynn Foundation
  • Mike & Cat Marshall
  • Miss Teen Great Britain
  • Mode Print Solutions
  • Phoenix Trading
  • Read for Good
  • Riley Consulting
  • Ritchie Charity Trust
  • Scouloudi Foundation
  • Scumrun
  • Simon Cowell
  • Simply Health
  • Simpson Travel
  • Syco Entertainment
  • Sylvia Aitken’s Charitable Trust
  • Thales
  • The Austin & Hope Pilkington Trust
  • The Brian Mitchell Charitable Settlement
  • The Childwick Trust
  • The Entertainer
  • The Ernest Ingham Charitable Trust
  • The Goldsmiths’ Company Charity
  • The Gurney Charitable Trust
  • The Insolvency Service
  • The Joyce Kathleen Stirrup Trust
  • The Masonic Charitable Foundation
  • The Michael & Anna Wix Charitable Trust
  • The Royal Foundation of The Duke and Duchess of Cambridge and Prince Harry
  • The Thomas J. Horne Memorial Trust
  • The Thousandth Man – Richard Burns Charitable Trust
  • The Worshipful Company of Needlemakers
  • The True Colours Trust
  • Tilney
  • Wilko
  • William Allen Young Charitable Trust
 

We are Together for Short Lives

We cannot achieve great change for children, young people and families in isolation. By working in partnership across the children’s palliative care sector with our members, patrons, stakeholders and supporters, together with the voices of children, young people and families at the heart of all we do, we can achieve so much more as a strong and powerful movement.

 

We now have 1,125 members from all over the UK and beyond – that’s a growth of 28%

Our family reference group has grown from 75 to 103 members, and we have 15 young avengers

Our family community has grown by nearly 30% to 887 families, adding to the thousands of families that make up our social media following on Facebook and Twitter

Our members

Last year we had 878 members; this year membership has grown to 1,125. That’s a growth of 28%.

Voluntary sector organisation members

  • A Child of Mine
  • Acorns Children’s Hospice
  • Alexander Devine Children’s Hospice Service
  • Andy’s at St Andrew’s Hospice
  • Batten Disease Family Association
  • Bluebell Wood Children’s Hospice
  • Breathe On UK
  • Brian House Children’s Hospice
  • Butterfly Children’s Hospices
  • Butterfly Project (Barnardo’s Family Support Service)
  • Butterwick House Children’s Hospice
  • Camp Simcha
  • Centre of Children’s Nurse Education (Crumlin)
  • Charlie House
  • Chestnut Tree House
  • Child Bereavement UK
  • Children’s Hospice South West
  • CHAS - Children’s Hospices Across Scotland
  • Chin Up
  • Claire House Children’s Hospice
  • Contact a Family
  • Demelza Hospice Care for Children
  • Derian House Children’s Hospice
  • Digital Legacy Association
  • Donna’s Dream House
  • Down’s Heart Group
  • Dreams Come True Charity
  • East Anglia’s Children’s Hospices
  • Ellenor
  • Faculty of Health and Social Sciences (Bournemouth University)
  • Family Nursing & Home Care
  • Forget Me Not Children’s Hospice
  • Francis House Children’s Hospice
  • Friends and Families of Special Children Ltd
  • Gully’s Place Trust Fund
  • Haven House Children’s Hospice
  • Havens Hospices
  • Helen & Douglas House
  • Hollybank Trust
  • Hope House Children’s Hospices
  • Hospice Isle of Man - Rebecca House
  • Jessie May
  • Jigsaw, Cumbria’s Children’s Hospice
  • Julia’s House
  • Keech Hospice Care
  • Kids Cancer Charity
  • LauraLynn, Ireland’s Children’s Hospice
  • Lifelites
  • Martin House Children’s Hospice
  • MLD Support Association UK
  • Naomi House & Jacksplace
  • National Association for Palliative Care Educators
  • Newlife the Charity for Disabled Children
  • Niemann – Pick UK
  • Noah’s Ark Children’s Hospice
  • Northern Ireland Children’s Hospice
  • Rainbow Trust Children’s Charity
  • Rainbows Hospice for Children and Young People
  • React
  • Rennie Grove Hospice Care
  • Reuben’s Retreat
  • Richard House Children’s Hospice
  • RNIB Pears Centre for Specialist Learning
  • Round Table Children’s Wish
  • Save Babies Through Screening Foundation UK
  • Sebastian’s Action Trust
  • Shooting Star Chase
  • SOFT UK
  • Spinal Muscular Atrophy Support UK
  • St Oswald’s Hospice
  • Sue Ryder Care Centre (The University of Nottingham)
  • SWAN UK
  • The Children’s Trust
  • The Cure & Action for Tay-Sachs (CATS) Foundation
  • The Donna Louise Children’s Hospice
  • The Harvey Hext Trust – A Siblings Wish
  • The James Hopkins Trust
  • The J’s Hospice
  • The Muscle Help Foundation
  • Thomas’s Fund
  • T ˆy Hafan
  • Zoë’s Place Baby Hospice

Statutory sector team members

  • Centre for Paediatric Spiritual Care (Birmingham Children’s Hospital NHS Foundation Trust)
  • Children and Families Division (Birmingham Community Healthcare NHS Trust)
  • Children’s Community Nursing Team (Central London Community Healthcare NHS Trust)
  • Community Children’s Nursing Services (NHS Lothian)
  • Community Children’s Nursing Team (South Warwickshire NHS Foundation Trust)
  • Community Children’s Nursing Team for Children with Life-Limiting Conditions (NHS Ayrshire & Arran)
  • Diana Children’s Nursing Service (Betsi Cadwaladr University Health Board)
  • Essex Palliative Integrated Care Children’s Respite Service Heywood, Middleton and Rochdale Children’s Community Nursing Team (Pennine Care Foundation Trust)
  • Paediatric Macmillan Team (Central Manchester University Hospitals NHS Foundation Trust)
  • Salford Diana Children’s Community Nursing Service (Salford Royal NHS Foundation Trust)
  • Small Heath Medical Practice
  • Southbank Child Development Centre (NHS Greater Glasgow and Clyde)
  • The Louis Dundas Centre, Paediatric Oncology Outreach & Palliative Care Team (Great Ormond Street Hospital for Children NHS Foundation Trust)
  • The Royal Marsden Education and Conference Centre

Our Patrons and ambassadors

  • Professor Sir Alan Craft – President
  • Dr Ann Goldman – Vice President
  • Simon Cowell
  • Holly Willoughby
  • Rosa Monckton MBE
  • Professor Dame Elizabeth Fradd DBE, DL
  • Rebecca Front
  • John Overton
  • Alex Corbisiero

Our CEO and Trustees

  • Barbara Gelb OBE – CEO for Together for Short Lives
  • Terry Moran CB (Chair) – Chair of Hull and East Yorkshire Hospitals NHS Trust
  • Heather Wood (Vice Chair) – former Chief Executive, Rainbow Trust Children’s Charity
  • Rosalind Britton (Treasurer) – former Finance Director, St Barnabas Hospices
  • Edward Belgeonne – Founder and Chief Executive for a number of businesses in the mobile technology industry
  • David Butcher – Chairman of Acorns Children’s Hospice
  • Dr Hilary Cass OBE – Consultant in Paediatric Disability
  • James Ellam – Chief Executive, St Oswald’s Hospice (resigned 16 May 2017)
  • Anna Gill OBE – Parent, member of the Child Health Alliance and Health Education England’s Patient Advisory Forum
  • Dr Richard Hain – Consultant and Lead Clinician, Wales Network in Paediatric Palliative Care
  • Tina McCrossan – former Director of Children and Young People’s Services, Northern Ireland Children’s Hospice (resigned 6 September 2016)
  • Maria McGill – Chief Executive, Children’s Hospices Across Scotland (CHAS)
  • Doug Morris – Parent, South West Regional Representative for the National Network of Parent Carer Forums
  • Nuala O’Kane – Director, Shropshire Community NHS Trust and former Chief Executive, Donna Louise Children’s Hospice
  • Chris Roys – Chief Executive, The Jessie May Trust
  • Richard Strawson - Parent, Volunteer and Local Authority Senior Manager
  • David Widdas MBE – Consultant Nurse for Children with Complex Care Needs, South Warwickshire Foundation Trust and Coventry and Warwickshire Partnership Trust
 
"Campaigning with Together for Short Lives means we can change things for families in the future – a fitting legacy for our late son – priceless."Sacha Langton-Gilks
 
 

Find out more at www.togetherforshortlives.org.uk

Together for Short Lives
T: 0117 989 7820
Together for Families Helpline: 0808 8088 100

Registered charity in England and Wales (1144022) and Scotland (SC044139) and is a company limited by guarantee (7783702)