March 6, 2015
by True Colours Trust

Appointment of the UK’s first Lead Nurse in Neonatal Palliative Care

The Trustees of The True Colours Trust are delighted to announce the appointment of Alexandra  Mancini as the UK’s first regional Lead Nurse in Neonatal Palliative Care at the Chelsea and Westminster NHS Foundation Trust (the Project).  The Project is being co-funded by the Chelsea and Westminster NHS Foundation Trust (Chelsea and Westminster), CW+ (formerly the Chelsea and Westminster Health Charity) and The True Colours Trust.

The Project is the first of its kind.  It will provide strategic, inspirational and professional senior nursing leadership in the development and delivery of multi-disciplinary neonatal palliative care services, initially across the five London networks with a view to a national roll-out over the Project’s five years.  The Project is needed to ensure equity of care for babies and families across London, and in time across England.

The Project will facilitate expert and autonomous nursing care and the provision of support to neonates, families and unborn babies who require palliative and end of life care.  The Lead Nurse will work in collaboration with a multi-disciplinary team, both in the hospital and in the community, in order to achieve the highest standards of optimal care for this group of babies and families. This will involve teaching and supporting the early identification of eligible babies, and ensuring they are being cared for in the most appropriate environment.

The Project will run for five years from March 2015 to March 2020, after which time funding will be found from statutory sources.

The Lead Nurse will transform the provision of palliative care for neonates, families and unborn children in London, and beyond.  Chelsea and Westminster has been at the forefront of developments in neonatal palliative care in England, including publishing the country’s first evidence based guidelines for the management of palliative care on neonatal units in 2014; Alex Mancini has been integral to this work and we are delighted to announce her appointment to this new and exciting role.

Alex Mancini said:

‘I’m delighted to have been appointed to this exciting and innovative regional role, the first in the country.  I will be privileged to collaborate closely with paediatric palliative care and community services alongside neonatal staff, in ensuring babies and their families have access to consistently high quality palliative care , facilitating their choices and ensuring a seamless plan of care’

Sandi Hillery, Head of Care at Shooting Star House said:

‘Shooting Star Chase are delighted with the appointment of Alex Mancini as Pan-London Lead Nurse in Neonatal Palliative Care. She has been working very closely with Shooting Star Chase for many years promoting Neonatal Palliative care in the hospice setting. We highly value her insight and vision and look forward to working more closely with Alex and supporting her in this new role across London.’


November 28, 2013
by True Colours Trust

Congratulations Christine Lenehan and Professor Myra Bluebond-Langner

Trustees would like to congratulate Christine Lenehan OBE, Director of the Council for Disabled Children and adviser to the True Colours Trust on her award of Honorary Fellowship of the Royal College of Paediatrics and Child Health at their annual conference in Glasgow on 5 June 2013. Christine was awarded the Fellowship for her work advocating the rights of children, including disabled children, across the health system.

Trustees would also like to congratulate Professor Myra Bluebond-Langner, the True Colours Chair in Palliative Care for Children and Young People who also received an Honorary Fellowship of the Royal College of Paediatrics and Child Health at the same conference.

Please click here for further information on The Council for Disabled Children and please click here for further information on Professor Bluebond-Langner

November 28, 2013
by True Colours Trust

Congratulations Dr Zipporah Ali

Trustees would like to congratulate Dr Zipporah Ali, Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA) on her Honorary Doctorate awarded by Oxford Brookes University.

Oxford Brookes University’s Associate Dean Dr Rob Wondrak said that Dr Ali has made a significant contribution to the education and training of health care professionals from Kenya and neighbouring countries in Africa. “She is an extensive lobbyist for the development, advocacy and public awareness of palliative care in Kenya.”

Further information about the work that Dr Ali and KEHPCA do can be found here

November 28, 2013
by True Colours Trust

UNICEF and ICPCN report launch

We are pleased to announce the publication of a report by UNICEF and the International Children’s Palliative Care Network (ICPCN) which assesses the need for children’s palliative care in Kenya, South Africa and Zimbabwe.

More information on the report launch can be found by clicking here


The full report can be found clicking here


Please click here for further information on UNICEF

Please click here for further information on ICPCN

March 14, 2013
by True Colours Trust

Bliss launches £250,000 fund to improve family facilities in neonatal units

We are delighted to announce the True Colours Trust has provided support to Bliss for a new grants programme to improve family facilities in neonatal units throughout the UK.

The scheme, called the Bliss Baby Charter Grants Fund, will invite any neonatal unit that has completed the Bliss Baby Charter Audit to 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 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.

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

Details on Bliss can be found here

February 8, 2013
by True Colours Trust

Further funding agreed for the True Colours Chair in Palliative Care for Children and Young People

Biennial Review of the True Colours Chair in Palliative Care for Children and Young People

True Colours’ Decisions and Next Steps


The Trust commissioned Professor Sir Al Aynsley-Green (Sir Al) to undertake a Biennial Review of the True Colours Chair in Palliative Care for Children and Young People.  The Chair is based at the UCL Institute of Child Health/Great Ormond Street Hospital within the Louis Dundas Centre for Children’s Centre for Children’s Palliative Care.  The Review was a condition of the Trust’s original three year grant; its aim was to ascertain whether the Chair was making a significant impact on the sector to inform the Trustees’ decision for a two-year extension of funding.

The Review’s terms of reference were based upon the Chair’s original job description.  Sir Al completed the review in September 2012.

In summary, Sir Al’s review praised the Chair’s work to date, stating that Professor Bluebond-Langner ‘has built on her reputation for the quality of her research, with clear evidence for productivity, impact and, above all, benefit to children and their families.’

True Colours Next Steps

On the basis of the review, the Trustees have now approved further funding of £500,000 over two years for the True Colours Chair. They have also approved a supplementary grant towards the Unit’s running costs in 2012/13, 2013/14 and 2014/15.

It was clear from Sir Al’s report that there had been some confusion over the length of True Colours’ funding expectation.  The Trustees would therefore like to confirm their original expectation to ensure the Chair is funded for a total of ten years, subject to progress and satisfactory reviews at appropriate points.

Sir Al’s report also made a strong recommendation for the Unit to have a Strategic Plan and the Trustees have asked the Chair to write one.  There will be a single strategy for the Chair and the academic Unit which will express the Unit’s vision and outline what will be achieved, and how, over the next three to five years with the available resources.  It will include key measurable targets.

The Chair will be assisted in this process by Professor Sir Alan Craft; he was the Chair of the original Steering Committee which established the post.

The Strategic Plan will be based upon the four objectives agreed by the Chair and Unit’s founding bodies.  In summary these are:

I.             Developing an evidence base & delivering research relating to children’s palliative care

II.            Development & delivery of training and education in children’s palliative care

III.           Raising the profile of children’s palliative care

IV.          Working with international partners to strengthen the global voice for children’s palliative care

The draft Strategic Plan will be presented to key stakeholders at a meeting in February and the whole exercise will be complete by the end of the first quarter 2013, which will lay a firm foundation for the work going forwards.

December 19, 2012
by True Colours Trust

New report to facilitate the integration of palliative care into the public health system in Africa

New report to facilitate the integration of palliative care into the public health system in Africa

We asked The Evidence Centre to undertake a qualitative evaluation of the two flagship programmes we funded through the Waterloo Coalition to integrate palliative care into public hospitals in Kenya and Malawi.  The programmes were led by the Kenya Hospice and Palliative Care Association and the Palliative Care Support Trust in Malawi.

The Evidence Centre found that the programmes suggest the following ten top tips for regional programmes wanting to set up similar services:

❶  Approach the senior decision makers in local areas and at government level to help them understand what palliative care is and that patients can be helped.

❷  Ask managers to set aside resources for palliative care, including enough money to purchase pain relief medications regularly and maybe a motorbike or bicycle for outreach visits. This can improve staff morale, as well as reducing patient suffering.

❸  Approach traditional leaders and other community stakeholders so they are aware of the programme and can pledge support publicly. Local leaders can refer others and can encourage healthcare professionals and managers to prioritise palliative care.

❹  Include a pharmacist on the team helping to set up palliative care. The pharmacist can work with central medicines supply organisations to improve access to pain relief medications because professionals may become disillusioned if medicines are not available. The pharmacist can also run training about prescribing opioids.

❺  Allocate a hospital room that is large enough to be used as a palliative care clinic so palliative care is visible and so a specific palliative care team can be formed.

❻  Make sure that at least one or two people have palliative care as their whole job role, so they do not have to juggle doing other things.

❼  Train as many people as possible, from all cadres of health professionals. Training could be run once each year to provide a refresher and to account for staff turnover. It is important to select people carefully to take part in training. These people need empathy and compassion and have to be able to use what they learn in practice.

❽  Offer clinical placements as an integral part of training, rather than an add on, so professionals can see how palliative care works in practice – and include follow up support to keep professionals and managers motivated, such as regular telephone calls or mentoring visits.

❾  Run short awareness-raising orientation sessions so staff on hospital wards learn about the palliative care clinic and know how to make referrals.

❿  Set up simple ways to monitor progress. Keep evaluation easy and quick, and share successes regularly.

More detailed recommendations for those wishing to develop palliative care in individual hospitals or on a regional or national scale are listed on pages 29 and 30 of the full report, Developing Palliative Care: key lessons from programmes in Kenya and Malawi.  The Evidence Centre also produced a standalone checklist for those wishing to integrate palliative care into individual hospitals or into the public health system through a broader programme entitled, Developing Palliative Care- checklist.

 The reports are available to download below or in the report section of our website.

Developing palliative care – key lessons from programmes in Kenya and Malawi

Developing palliative care – checklist for integrating palliative care


New Christmas single featuring the Kaos Signing Choir for Deaf & Hearing Children

December 3, 2012 by True Colours Trust | 0 comments

We are delighted to see the launch of the new Christmas single, ‘True Colors’ by the British Paraorchestra featuring the voices of Team GB Paralympic athletes and the Kaos Signing Choir for Deaf & Hearing Children.

The single will be available to download from iTunes  on Monday 3 December 2012 – the UN International Day of Persons with Disabilities.

The True Colours Trust is proud to support Kaos with funding towards its core costs as well as contributing towards this initiative; it was a happy coincidence that the Paraorchestra chose this particular song!

Links to Kaos and the Paraorchestra are below: