December 9, 2020
by True Colours Trust
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True Colours’ UK Small Grants – an update

We remain dedicated to supporting small, local organisations which work with disabled children, children with life-limiting conditions and their families.

We are delighted to announce that our UK Small Grant programme has now re-opened, following our Covid-19 response round in the summer. We have revised the criteria slightly, with the aim of making the application process clearer and more straightforward.

We are more aware than ever of the need for prompt decisions and commit to responding to applications as quickly as possible. Based on feedback we have received from grantees, we have revised our UK Small Grants programme to ensure that we provide applicants with a funding decision within six weeks of submission. Applications were previously reviewed quarterly, and we hope this change will make things easier for applicants.

We welcome feedback on the programme as we continue to strive to improve it.

Please review our revised criteria and application guidelines here.

August 20, 2020
by True Colours Trust
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Coronavirus – Our Response to the Current Crisis

As the world continues to adjust to the devastation of the coronavirus pandemic, we wanted to update you on True Colours’ response to the crisis so far.

Almost all the work supported by True Colours involves partner organisations which are directly involved in the Covid-19 response in some way. Many of our partners are delivering frontline care to children and families, others advocate to ensure that the voices of disabled children or those with palliative care needs are heard by those making decisions at the highest levels. In Africa, our partners are working in hard-to-reach communities providing palliative care.

The True Colours team has been humbled by the dedication of the organisations we fund to the children, families and patients they support and we are proud to be associated with them.

Given the direct involvement of these organisations in the Covid-19 response, the majority of our emergency funding of £1.47 million has focused on helping them to respond quickly to the crisis.

We have also revised the criteria for our next round of funding from the UK Small Grants programme to help small, local organisations adapt their services in light of Covid-19 so that they can continue or resume supporting families safely.

The exception to this has been funding of the Life Lines project.

We provided £500,000 to launch Life Lines, an initiative designed to connect families of seriously ill patients isolated on intensive care units with their loved ones. The project aimed to alleviate human suffering during the pandemic by providing tablets and establishing a system for virtual e-visiting which allows the families of seriously ill patients to see and speak to their loved ones via a tablet using a secure online platform. It also provides families with the opportunity to communicate directly with the clinical team, ask questions and better understand the care the patient is receiving. So far over 1,000 tablets have been delivered to intensive care units across the UK and thousands of calls have been made to families. We made this grant in partnership with the Gatsby Charitable Foundation, which also provided £500,000.

Click here to read about the other emergency grants that we have made in the UK and Africa.

April 14, 2020
by True Colours Trust
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Life Lines – Keeping Families Connected

True Colours Trust and the Gatsby Charitable Foundation have each made a grant of £500,000 to Life Lines.

Life Lines is a COVID-19 response. Its aim is to alleviate suffering during this national crisis by establishing a system for virtual e-visiting by family at the bedside of patients with COVID-19 in isolation, initially on Intensive Care Units.

The Trustees of True Colours and Gatsby are proud to be supporting this essential project initiated by a team comprising Louise Rose, Professor of Critical Care Nursing at King’s College London, Dr Joel Meyer, a critical care consultant at Guy’s and St Thomas’, and Michel Paquet of Aetonix who developed the software aTouchAway™.

Patients in intensive care with coronavirus are confined, sedated on a ventilator and critically ill. Their families cannot visit them because of infection control even if they are reaching end of life care. Life Lines allows relatives to see and speak to their loved ones via a tablet using the secure online platform. It also provides families with the opportunity to communicate directly with the clinical team, ask questions, and better understand the care the patient is receiving. Life Lines supports patients, families and clinicians at an unprecedented time of challenge.

More information on Life Lines can be found at:
www.kingshealthpartners.org/lifelines

Those wishing to make a donation can do so at:
www.kingshealthpartners.org/lifelines/donate

April 3, 2020
by True Colours Trust
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Coronavirus – reassurance for those we fund

We want to reassure organisations we fund that we will continue to support you through this uncertain time, and that our funding is flexible and intended to help you deal with challenges.

As part of this reassurance, the Sainsbury Family Charitable Trusts have signed the joint statement of support that is being co-ordinated by London Funders here.

We understand that it might be difficult for you to meet the outcomes of your grant when staff and volunteers will not be available, events or meetings may need to be cancelled, and services need to be provided in different ways. We’re interested to hear about this as part of your regular reporting, but you don’t have to take the time to tell us about it now unless a chat would be helpful.

Please let us know by phone or email if we could help by moving payment or reporting dates, flexing timeframes for delivery of outcomes, adapting activities, or anything else.

We are lucky to be able to work from home at SFCT so, despite the closure of our office, we should be able to get back to you as normal. However, please bear with us if there are slight delays; we will get back to you as fast as we possibly can.

October 29, 2018
by True Colours Trust
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Breathing Spaces – 12 grants have now been awarded

True Colours is delighted to announce 12 grants have been awarded under the Breathing Spaces programme to improve parent/carer rooms in hospitals across the UK.

Glasgow Children’s Hospital Charity has received a grant of £20,000 to improve and enhance the parent/carer room on the 3rd floor of the Royal Hospital for Children, Glasgow NHS Greater and Clyde.

Alder Hey Children’s Charity has received a grant of £20,000 to remodel and improve the parent/carer area connecting the Paediatric Intensive Care Unit (PICU) and High Dependency Unit (HDU) at Alder Hey Children’s Hospital.

The Grand Appeal, Bristol has received a grant of £20,000 to improve the parent/carer room on PICU at Bristol Children’s Hospital.

Birmingham Children’s Hospital Charity has received a grant of £20,000 to refurbish the parent/carer room on ward 5 of Birmingham Women’s and Children’s Hospital.

King’s College Hospital Charity has received a grant of £19,265 to improve the parent/carer room on the Toni & Guy Ward at King’s College Hospital.

Southampton Hospital Charity has received a grant of £20,000 to improve the parent/carer room on Ward G3 at Southampton General Hospital.

Royal Brompton & Harefield Hospitals Charity has received a grant of £20,000 to improve the parent/carer room in the Paediatric Intensive Care Unit at Royal Brompton Hospital.

Leeds Cares has received a grant of £20,000 to improve the parent/carer room on PICU at Leeds Children’s Hospital.

Manchester Foundation Trust Charity has received a grant of £20,000 to improve the parent/carer room on Ward 84 at the Royal Manchester Children’s Hospital.

Addenbrooke’s Charitable Trust has received a grant of £20,000 to improve the parent/carer room in the Paediatric Intensive Care Unit (PICU) at Addenbrooke’s Hospital.

Leicester Hospitals Charity received a grant of £19,730 to improve the parent/carer room on Level 4 at Leicester Royal Infirmary.

The Children’s Hospital Charity, Sheffield received a grant of £19,725 to improve the parent/carer room on Wards 1 & 2, and to improve the parent/carer room on Ward 5 at Sheffield Children’s Hospital

 

 

June 22, 2018
by True Colours Trust
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Making every seriously ill child count: UK-wide study to highlight the number of children with life-limiting or life-threatening conditions

  • The way children’s palliative care in the UK is planned and funded is a postcode lottery for children and families.
  • Too little is known about the number of babies, children and young people with life-limiting or life-threatening conditions across the UK, which makes it hard to plan and fund services.
  • A new study being undertaken by a team at the University of York, funded by the True Colours Trust, will highlight the number of children with life-limiting and life-threatening conditions in the UK.

A new research study will give an up to date estimate of the number of babies, children and young people with life-limiting and life-threatening conditions across the UK and will help to predict levels of need in the future. Together for Short Lives, the UK charity for children’s palliative care, secured funding for the research from the True Colours Trust following a consultation with the children’s palliative care sector which identified this as a pressing need. The study is led by Dr Lorna Fraser, Director of the Martin House Research Centre at the University of York.

Little is known about the current number of children living with life-limiting and life-threatening conditions and new information is needed about their age, condition, ethnicity and where they live. A lack of accurate data on this population makes it difficult to plan, fund and deliver the right care and support that meets the needs of every child and their family.

The most recent estimate, from 2010, showed that there were at least 49,000 babies, children and young people with life-limiting conditions UK-wide[1], but service providers suspect that this is an under-estimate for two key reasons. Firstly, advances in medicine mean that more babies are surviving complications at birth, and young people with complex conditions are living longer. And secondly, a recent research study by Dr Lorna Fraser on the prevalence of these children across Scotland, showed that there has been a continued increase in the number of children with life-limiting conditions up to 2015[2].

The new research study will:

  • Estimate the number of babies, children and young people in the UK with life-limiting and life-threatening conditions.
  • Develop a model to predict the future number of these children.
  • Provide the evidence base to help policy makers, commissioners and service providers accurately plan, fund and deliver palliative care to all children and families who need it.

Lizzie Chambers, Director of Development for Together for Short Lives said:

“Together for Short Lives has spearheaded this vital research. After listening  carefully to the views of all those in the children’s palliative care world, we are delighted to be working in partnership with the True Colours Trust and the team at the University of York to deliver this foundation piece of our five-year strategy.  This research is a fantastic opportunity to get the support and care for seriously ill children and their families right. Currently, too many are failed because commissioners and policy makers don’t understand the number and needs of these vulnerable children. This ground-breaking new study could give us the evidence to unlock vital statutory funding, so in the future no child or family is left behind.”

Lucy Sainsbury, Chair of the True Colours Trust said:

‘We are very aware that the future development and success of children’s palliative care services relies on accurate data about the number of children with palliative care needs.

The University of York’s new study is particularly exciting because it will not only estimate the current size of the population but will also predict the numbers of children who will require children’s palliative care in the future.  We are delighted to be able to work with Together for Short Lives and support the sector by funding this important piece of work. This study will improve the evidence base for children’s palliative care and, we hope, lead to improvements in services for children and their families both now and in the future.’

Dr Lorna Fraser, University of York added:

“This study provides an opportunity to both update our previous estimates on the numbers of children and young people with life-limiting and life-threatening conditions in the UK, but also to predict the number of children who will require services over the next 5-10 years.  These population-based data are vital for service planning and provision for these children and their families.”

The research study, funded by the True Colours Trust, will get underway in May 2018 and will publish its findings at the end of October 2019. Together for Short Lives is working closely with the research team at the University of York and the charity is chairing an Advisory Committee of key stakeholders to help steer the project and ensure that its findings will have maximum impact on the future development of children’s palliative care services across the UK.

ENDS

For media enquiries contact Myra Johnson, Director of Communications 07775336460 or 0117 989 7820

Click here to view the press release on the Together for Short Lives website

Notes to Editors

About True Colours Trust

The True Colours Trust is passionate about making a difference to the lives of disabled children and children who need palliative care and their families.  The Trust was established in 2001 and works in the UK and Africa.

True Colours has developed a framework of grant-making which enables it to effect change in the short, medium and long-term.  This is done through small grants to local initiatives; multi-year grants to build sustainable organisations and sectors; commissioning research to gather information and identify solutions to complex issues; and, making long-term investments towards advocacy and policy change. The Trust’s framework enables it to make positive change today, tomorrow and in the future.

About Dr Lorna Fraser, the Martin House Research Centre and University of York

Dr Lorna Fraser is a Senior Lecturer and the Director of the Martin House Research Centre at the University of York (www.york.ac.uk/mhrc ). The Martin House Research Centre is a partnership between Martin House Children’s Hospice, the University of York (Department of Health Sciences and the Social Policy Research Unit) and the University of Leeds. It is a multi-disciplinary centre for research on the care and support of children and young people with life limiting conditions or medical complexity, their families and the workforce that care for them. The Centre is holistic in its scope, recognising that the care and support needs of children and families span clinical/medical, social, psychological, parenting/caring, spiritual, financial and practical domains.

About Together for Short Lives

There are at least 49,000 children and young people are living in the UK with conditions that are life-limiting or life-threatening.

Hearing the news that your child has a life-limiting condition and is likely to die young is completely devastating. For tens of thousands of families in the UK this is the reality. These children have very complex and unpredictable conditions and often need round the clock care, seven days a week.

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.  We are here to help children and their families to access specialist children’s palliative care services when and where they need it. We provide information so families know where to go for support and have the help they need to make the right choices about their child’s care.

Together for Short Lives supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK.

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. We can’t change the diagnosis, but we can help children and families make the most of their time together.

[1] Fraser L, et al (2012). Life-limiting and Life-threatening Conditions in Children and Young People in the United Kingdom: Final Report for Together for Short Lives: Paediatric Epidemiology Unit, Leeds University.

[2] Fraser et al. (2015). Children in Scotland Requiring Palliative Care: identifying numbers and needs. Available to download from: http://bit.ly/1Krn2EU

 

Coffee cup on a table image

March 26, 2018
by True Colours Trust
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Breathing Spaces: the True Colours Fund for Parent/Carer Rooms in Hospitals

We are thrilled to announce the launch of our new Breathing Spaces Fund to improve parent/carer rooms in UK hospitals. The Fund has been developed in response to parents’ requests for better facilities in hospitals as they ‘make families’ experiences in hospital more bearable, help parents develop friendships, share their experiences and give them the space they deserve’.

Parents and carers play a vital role in their child’s care, a role which can often be overlooked. We hope that renovated parent/carer rooms will go some way to improving the support hospitals are able to offer parents and help create the ‘home from home’ environment they have told us they need.

The Fund has been informed by consultations with parents, clinicians and hospital charities. We are particularly grateful to all the hospitals and charities who have hosted our research visits and to Lisa Spinks, our parent advisor, whose advice and commitment to Breathing Spaces has been invaluable.

Breathing Spaces is now open for applications and will close in March 2020. Further information, including comprehensive Guidelines and the Application Form can be found at http://www.truecolourstrust.org.uk/children-and-young-people-uk/breathing-spaces-fund-for-parent-carer-rooms-in-hospitals.

February 22, 2017
by True Colours Trust
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Numbers of children with complex needs has more than doubled since 2014

A report out today is the first analysis in 10 years of the numbers of children and young people with complex needs or life-limiting conditions and estimates that numbers have increased dramatically by over 50% since 2004, from 49,300 to 73,000 children and young people.

The underlying reasons for the increase in numbers include increased life expectancy for babies born with complex disabilities and congenital conditions such as cystic fibrosis.

Together with the Council for Disabled Children,  we commissioned this piece of research to paint a definitive picture of the type of data that is available to understand what this data tells us about the population and whether it shows us anything useful in terms of developments and/or changes in the population. It has identified clear gaps in current data collection and allows action plans to be developed with key stakeholders to drive forward improvements.

Data on these children is extremely scarce, so the report uses school census data on special educational needs, and other data, to shed light on trends. It finds that the numbers of children with complex forms of autism have more than doubled since 2004, to 57,615.

Worryingly the swell in numbers may actually be greater, since many children with the most complex needs are educated in the Independent Special School Sector and Department for Education does not require those schools to return detailed data on these pupils.

The report, written by Anne Pinney, suggests that while the numbers of these children are growing, the services they rely may not have kept pace. The proportion of children with a disability supported by children’s services is steadily falling, and now stands at 0.4% of all 0 to17-year-olds, suggesting that qualifying for local authority help may be increasingly difficult for disabled children and their families. Similarly, 41,500 children and young people with a learning disability or autism are currently on waiting lists to see a mental health specialist.

Dame Christine Lenehan, Director of the Council for Disabled Children said:

‘You’d think that because these disabled children are known to health services, social services and education teams, we’d have a good idea of the numbers involved. That simply isn’t the case. The national data on disabled children is not fit for purpose: it has gaps, anomalies and inconsistencies, and raises the question how can we plan to meet the needs of these children and their families, when we don’t know what those needs are?’

The report’s recommendations were drawn up with support from a panel of experts and call for urgent action by the NHS, Department of Health and Department for Education to improve how data about disabled children with complex needs is collected and shared.

Click here to download the report

April 13, 2015
by True Colours Trust
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360 Giving

The True Colours Trust is proud to be part of 360 Giving – a partnership that encourages and supports UK grant makers and philanthropists to publish their grant information online in an accessible way.   The new system means information about the Trust’s grant making is publicly available days after the decision has been made, rather than months later in the Trust’s annual report.

360 Giving should be of benefit to funders and charity fund-raisers alike.  It aims to facilitate collaboration between funders as it will allow them to see at a glance which charities other funders are supporting. It will also simplify the research that charity fund-raisers need to do to target their applications effectively. The grant information is published in ‘open’ format which means that computers can read and combine/compare data across many different sources to reveal new information.

360 Giving was originally founded by The Indigo Trust, another of the Sainsbury Family Charitable Trusts, as a way to contribute to the funding debate and is now being run with founding partners Nesta and the Nominet Trust. Nesta currently provides the main point of contact for the project.

The True Colours Trustees hope that 360 Giving will be a useful resource of both grant makers and operational charities, particularly in under-funded areas like palliative care. Further information on 360 Giving can be found here www.threesixtygiving.com

April 13, 2015
by True Colours Trust
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Further funding support for the Bliss Baby Charter Grants Fund

We are delighted to announce the True Colours Trust has agreed to further support the Bliss Baby Charter Grants Fund with a grant of £200,000 over two years from October 2014 to September 2016.

The scheme, launched by Bliss in March 2013, provides grants to help improve family-friendly facilities in neonatal units throughout the UK.

Units that have completed the Bliss Baby Charter Audit can apply for a small grant (up to £1,000) or large grant (up to £10,000) to help improve facilities for parents and families of premature and sick babies. The Bliss Baby Charter Audit is used by hospitals to look at key aspects of a unit’s support for the whole family to help staff make family-centred care a reality.

The grants allow hospitals to purchase small items such as lockers, comfortable chairs and privacy screens, as well as support the refurbishment of parent bedrooms, the creation of parent kitchens, and the opening of quiet rooms for sensitive discussions, which would often fall outside usual NHS budgets.

Further details of the Bliss Baby Charter Grants Fund can be found here Details on Bliss can be found here.

Details on Bliss can be found here.