The trustees of LifeNoW have come to the conclusion that the Charity should close and the remaining funds transfer to Derian House Children’s Hospice charity.
We have reached this conclusion following an assessment of the positive changes in transitions work in the country leading us to the view that our objectives have been largely fulfilled. The way the NHS and hospices are now taking up the work; how mainstream funding is developing and that trust funding is declining for our model of approach adds to the rationale for closure. The timing of retirements of current trustees is another factor leading us to say now is the time to draw the charity to a closing point.
Back in 2009 LifeNoW was founded by George and Joan Thomas with the aim of establishing a ‘young adults’ hospice’ to meet the needs of young adults with life-limiting conditions in the North West and North Wales, to ‘bridge the gap’ between already established Children’s and the more traditional Adult hospices and modelled on Douglas House in Oxfordshire. The charities objectives being:
‘1. The relief of sickness by providing or assisting in care and palliative respite services for people aged 19 – 40 in the north west of England who have end-of-life, or life-threatening conditions in particular but not exclusively by the provision of a hospice and support for these people.
2. To advance education in life-threatening or life-ending conditions for the public benefit in particular but not exclusively by sponsoring and supporting research into the subject and supporting the dissemination of the useful results of such research for the public benefit.’
Whilst progressing the LifeNoW objectives, the Trustees became aware of two significant factors that could potentially affect the direction that the charity was heading, namely:
- the closure of Douglas House Hospice for Young Adults
and - the establishment of ‘hospice at home’.
In response to these developments, the Trustees decided and agreed to focus on ‘assisting in care and palliative respite services’ and ‘to advance education’ across this sector resulting in the establishment of a working relationship with Derian House Children’s Hospice. This relationship commenced in 2018/19 leading to LifeNoW funding the role of a ‘Transition Support Worker’ to provide support to young adults and their families as they faced leaving children’s services; the Trustees and Derian House believe this to be one of the early adopters of this activity. Since this initial role began, and to reflect an increasing workload, a second position was agreed focusing more on transition nursing support needs, and LifeNoW has continued to fund both these roles up to the present time. Note: the first role [non nursing] is currently vacant due to staff resignation.
This transitional support model has proved to be very successful among the families who have received benefit from it and has also been shared, in conjunction with Derian House, more widely through contact with other hospices across the North West, North Wales, Greater Manchester, Cheshire and West Yorkshire and now appears to be gaining momentum nationally, e.g.:
- NHS Great Ormond Street Hospital – Healthcare Transition
- Hospice UK – Transition from Children’s Services into Adulthood
- Together for Short Lives – Stepping Up, Transition Pathway
- Sue Ryder – Young People Transitioning to Adult Hospice Care
- National Council for Palliative Care, Transition
- Manchester University NHS Foundation Trust [see extract below:]
Our aims for Transition of Care
To provide safe, effective, developmentally appropriate transition process and transfer (handover) from children’s services to adult services for all young people with long term conditions requiring on-going care.
To ensure young people and or carers experience a transition process that equips them with the required knowledge and skills to manage in adult services.
[Transition of Care for Young People Strategy – Manchester University NHS Foundation Trust (mft.nhs.uk)]
LifeNoW’s role in supporting transition from children’s services to adult services is now becoming a national mainstream responsibility which is attracting funding from the NHS and other charitable trusts e.g. 2023 Children in Need highlighted how they are also directly funding roles similar to our own funding model with Derian House.
In recognition of the above, the Trustees believe LifeNoW’s objectives have been largely realised; we have progressed as far as we are able to take them and therefore need to step back and leave it to individual hospices, both children’s and adult, to work within national frameworks, guidance and funding streams to continue with the transition pathway.
The Trustees are profoundly grateful for the tremendous support provided by supporters over the last 13 years. Your attendance at LifeNoW events brought much needed encouragement; your giving has enabled the appointment of support workers and a nurse at Derian House; and your prayers have made all of this possible. You have enabled the charity to meet its objectives and above all you’ve brought hope to young people and their families. Lyndsay, the LifeNoW Nurse, continues that work at Derian House. The effects of all we have done continue. Let us pray for all young people and their families and for each other that we may all, ‘choose life, loving the Lord our God, obeying his voice and cleaving to him’ (Deuteronomy 30:19&20 RSV).
Discussions have taken place with Derian House regarding the future of LifeNoW and its support to the current transition roles. The Trustees believe that the charities objectives are now best served through Derian House, so the decision has been taken to conclude LifeNoW as a separate entity, in accordance with the Charity Commission guidelines, and to transfer its resources to them and in doing so, satisfy our contractual commitments; all transferred funds will be ring-fenced for transition support activities. The target for this is 31st March 2024.
God bless and thank you for helping LifeNoW ‘bridge the gap’ for young adults with life-limiting conditions as they embark on the transition from Children’s to Adult Services.
The Trustees, LifeNoW
January 2024
If you have any questions or comments, please email: info@lifenow.org.uk and we will do our best to answer you.