I've been a nurse for nearly 50 years, many of them on the front line in the care of sick children. It's a proud, positive and much loved profession. But as I write today, children's palliative nursing is facing a crisis: the number of children with life-limiting conditions that need care and support is increasing but the number of nursing posts to provide that support is failing to keep apace.
Demand for children's nurses rising
There are over 50,000 children and young people in the UK with life-limiting and life-threatening conditions and the number is rising(1). Palliative care differs greatly between children's and adult palliative care. These children often have complex or rare conditions and they need to be cared for by health professionals with specialist skills and experience. Children and families rely on children's nurses to provide expert holistic care, pain and symptom management from the moment of diagnosis until the end of their life. Community children's nurses, in particular, make all the difference to the day to day lives of families looking after children with complex health needs, 24 hours a day, seven days a week.
Impact on service provision
Despite the increasing number of children and young people who need palliative care, there is a shortage of skilled professionals with the right experience and knowledge to care for them. This shortage threatens to undermine the development of children's palliative care across the UK and is already impacting on the amount of care provided to children and families. Nurse vacancy rate among voluntary sector organisations providing children's palliative care is currently 10%, which is higher than the overall NHS nurse vacancy rate.
Care for seriously ill children being hit hard
Two thirds of voluntary services surveyed by Together for Short Lives have told the charity that a shortage in nurses is resulting in a reduced offer of care to families. Beds are being closed; respite care is reduced; and continuity of care is being affected. This negative impact on services is increasing year on year - in 2014 43% of respondents said they reduced the service offered to families as a result of vacancies, in 2015 this had increased to 65%. If this worrying trend continues it will be even harder for children and families to be offered the right care and support in future years.
Why are we seeing these vacancies?
We know that some nursing staff may have their own anxieties about death and dying and these may be significantly more polarised if their patients are children. This may affect their career choices before they have had the opportunity to discover the positive aspects of working in the palliative care environment. Nurses may feel they will lose some clinical skills if they choose to move into children's palliative care. In reality this is not the case, indeed their skill set is enhanced by opportunities to spend time with the whole family often in their own setting to plan holistic care for their patients thereby fulfilling a strong patient advocate role. The sector has an additional recruitment challenge caused by the difference in terms and conditions between NHS and voluntary sector providers - the most commonly suggested reasons for nursing vacancies were: terms and conditions, including salary, shift systems and annual leave.
In addition to this over a quarter of nurses in the sector are over 50 years of age, which could mean greater shortages in the future as nurses retire.
Gaps in care mirrored in NHS
NHS children's nursing is also a critical part of the children's palliative sector with community teams often providing the bulk of the day-to-day support on offer to families. Worryingly, we are also seeing a shortage of nurses in the NHS with an overall current vacancy rate of 7%. In addition to this a Royal College of Nursing (RCN) survey (2015) showed that nearly a third of children's nurses said they don't have the resources to deliver adequate care in the home setting. While it is recommended that at least a minimum of 20 whole-time-equivalent Community Children's Nurses (CCNs) are required for an average-sized district with a child population of 50,000, only 17 CCNs were due to qualify in 2014/15 across the UK.
Also concerning are the RCN findings which show that 31% of children's nurses said they lacked the confidence to discuss end of life care options with children and their families. Children die in hospital, at home, in hospices - nurses work in all of these settings - all nurses need to be able to discuss options; it isn't only the remit of the specialist nurse who might not be there alongside the family when the conversation needs to happen.
Bridging the care gap
The children's palliative care sector urgently needs skilled nurses now. It also needs a plan to deal with the growing demand for nurses in the future.
- We need to build a strong and sustainable nursing workforce with the skills, knowledge and time to deliver care to children and young people who are expected to die young. Families need to know there are enough skilled nurses to care for their children today and in the future. People considering a career in nursing need to know that working in children's palliative care is highly rewarding and can have a hugely positive impact on families who are living through the most difficult of circumstances.
- We also need to give nurses the support they need to have difficult conversations with young people and families about planning for end of life care. And we need to change perceptions about childhood death and children's palliative care so nurses and care professionals are not afraid to work with children and young people who will die young.
You Can Be That Nurse
Realising these ambitions requires a concerted effort from a wide range of people and organisations, including children's palliative care providers, government, workforce planners and universities. This is why Together for Short Lives has launched the You Can Be That Nurse campaign with a new, inspiring film which tackles some of the taboos around children's palliative care. It highlights the variety of career opportunities this sector brings. The varied nature of their role and the opportunity to provide holistic care to the child and their family make this one of the most rewarding roles in nursing.
We need to work together to highlight these issues and make sure that children and families in the most challenging circumstances get the care and support they need today and in the future. These families simply don't' have time to wait for this to change.
1. The prevalence of children and young people with a life-limiting condition in England is both rising and higher than previously estimated. Fraser et al. (2012). "Rising National Prevalence of Life-Limiting Conditions in Children in England". Paediatrics, 129(4), pp. 923-929. Available from: http://pediatrics.aappublications.org/content/early/2012/03/07/peds.2011-2846
This trend is replicated in other part of the UK. In Scotland, prevalence was 75.0 per 10,000 in 2009/10, but rose to 95.7 per 10,000 by 2013/14. The absolute numbers rose from 12,039 to 15,404 in this period. Fraser et al. (2015). "Children in Scotland requiring Palliative Care: identifying numbers and needs" (The CHiSP Study). Available from: http://www.york.ac.uk/inst/spru/research/pdf/chisp.pdf