Commissioning children’s palliative care in England: 2017 edition | Together for Short Lives
This report summarises responses to a Freedom of Information request sent to every CCG and upper-tier local authority in England, asking how they plan care and support for children who need palliative care and their families, and which services they commission for them.
The report found that:
Children’s palliative care commissioning in England is patchy and inconsistent
The government’s end of life care choice commitment is not being fulfilled in almost half of local areas in England
Most CCGs have not implemented the new clinical guidance for children who need palliative care
Even though many seriously ill children need care 24 hours a day, seven days a week, commissioners are failing to plan and fund this support
Many local authorities are failing to commission short breaks for children who need palliative care, despite being legally obliged to do so
There is a postcode lottery of bereavement care across England for parents whose child has died
CCGs and local authorities are failing to fund voluntary sector children’s palliative care organisations – including children’s hospices
Too many areas still do not commission age and developmentally appropriate services for young people with life-limiting and life-threatening conditions
Despite significant challenges across England, there are still some examples of commissioners reporting a broad range of children’s palliative care commissioning.
The report proposes a number of recommendations in response to these findings.
Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study | BMC Geriatrics | published online 5th October 2017
A study from the University of Cambridge in the UK found that elderly people were four times more likely to die comfortably if their last days were spent at home or in a “care home”—defined to be either a residential care home or a nursing home—than if they were in a hospital.
Jane Fleming, a senior research associate at Cambridge, and colleagues, reported in BMC Geriatrics about their retrospective analysis of data from 180 deceased participants, ages 79-107 years. Relatives and caregivers were asked about the patients’ comfort level. The researchers learned only 10% of all participants died without pain or symptoms of distress.
This report draws on research findings which explored the challenges to palliative care for homeless people in London. It explores homeless peoples’ views and experiences of palliative care and aims to understand how they believe support could be improved. It includes a series of case studies and recommendations.
Key discussion points
The needs of homeless people are not well understood or considered by health and care services. Where services do exist, they are often fragmented and work in relative isolation.
These issues are exacerbated by a lack of training and support for frontline staff.
Identifying homeless people who may be dying is difficult. Involving homeless people in decisions about their treatment and care means striking the right balance between supporting them and respecting their individual choices.
Actively linking health care, social care, housing and voluntary services may improve the care options available.
Working together will help continuity of care – this needs a collaborative effort across services.
There must be a strategic, equality-led approach at a local level, delivering personalised care. We share examples of excellent primary care and specialist community services.
Hospices and primary care organisations in particular can play a key role in championing an equality-led approach.
A new domain has been added to the end of Life Care profiles. These profiles can be used to explore local trends in this data, make comparisons with neighbours or regions and download maps and area profiles.
The state of hospice services in England 2014 to 2017 presents findings from the Care Quality Commission’s programme of inspections.
The CQC inspected hospice services in England between October 2014 and January 2017.
The results found that Hospice care across England has the highest percentage of health and social care services that are rated outstanding (25%), and a further 70% are rated good.
The inspections found that hospice leaders and frontline staff displayed a strong commitment to providing truly person-centred, compassionate care and support to people using their services, and their loved ones. They also developed strong relationships with other services in the area.
However, the report makes the case that there is more to be done to make sure that everyone, regardless of their background or circumstances, can access high-quality end of life care. Hospice services rated as outstanding were striving to overcome such inequalities and share their expertise to drive better care in other services.
Age UK and the malnutrition taskforce have published a booklet and accompanying animation designed to help people have positive conversations about death with the people they care about.
Lets talk about death: How to have difficult conversations
Lesley Carter, Programme Head of Malnutrition Taskforce and Head of Health Influencing at Age UK said: ‘We know that having the confidence to start a conversation about dying and death is very hard, we struggle to find the right time, the right words and we are terrified of upsetting the other person and ourselves.
‘We have written this bright well-illustrated book and film that can be used to explore this issue with children, adults and professionals. We’ve explained why it is important to talk about dying and death, given ideas of how you could start a conversation, what you may want to say. Obviously, we are all different, you will find your own words. We hope that these resources will give you the confidence to give it a go.’
Objective: Few studies have utilised observation to investigate retained awareness when individuals with severe dementia interact with family members. Seeking evidence of retained awareness in those with severe dementia, interactive family visits in care homes were observed and analysed.
Method: Five family groups (14 individuals) completed 10/15-minute video recorded family interactions. Speech and non-speech interactions were analysed using Thematic Analysis.
Results: One superordinate theme: Distinctive family bonds; overarched two subthemes, in-step and out-of-step describing positive and negative familial interactions. In-step interactions revealed family groups reciprocating social support, having fun together, and willing to go on the ride together. Out-of-step interactions characterised social frustration, non-reciprocity, and sidelining of members with dementia. Although awareness fluctuated, complex awareness was observed in the speech/non-speech expressions of those with dementia. In response, visitors appeared to treat those expressions and behaviours as understandable. Observed outcomes were out-of-step when visitors sought to retain the familiar and in-step when visitors sought to optimise all communication possibilities.
Conclusion: Video recorded family interactions and analysis revealed: (a) awareness was retained in the participants with severe dementia beyond assessed levels; and (b) Relational Social Engagement (RSE) occurred within family groups despite positive or negative interactions. Implications are discussed.