Demelza welcomes report published on children waiting to leave hospital

The charity fed into the report, which was led by Children’s Commissioner for England, Dame Rachel de Souza.

It is the first time data has been collected on the number of children in hospital and the research found that within this generation of children, more than 1,000 spent over a year in hospital.

The report has found there are currently thousands of children spending long periods of time in hospital and they are facing delays in being discharged as they wait for the right support in the community, suitable housing or social care placements.

The report notes that many of these children have serious or life-limiting conditions and it found that access to palliative and end of life care is uneven, leaving some children and families without the support they need at critical times.

A key challenge highlighted is the availability of appropriate care packages with the specialist skills and competencies for families as well as the communication needs of children with complex needs. Not all hospital staff are trained to navigate this, which could lead to children not being able to influence their care or express themselves meaningfully.

Demelza, and many similar charities, have much of the skills, knowledge and capacity to try and meet some of this demand, including bridging some of the gaps with specially trained staff providing in-hospital support for the child, family and hospital staff. Demelza’s in-reach family liaison team also supports with funding applications and grants for families experiencing extended hospital stays.

One of the key recommendations from the report is that the Department for Health and Social Care must sustainably fund palliative and end of life care and ensure Integrated Care Boards (ICBs) are meeting their legal duties to arrange palliative care services.

Demelza has long campaigned for sustainable funding for the children’s hospice sector. The charity receives 84% of its funding from its fantastic communities and will always rely on that vital support, but the government has a statutory duty to fund access to palliative and end of life care.

Another recommendation in the report is that opt-out advocacy should be extended to ensure children who might be non-verbal or need support to communicate who are waiting to leave hospital are also appropriately advocated for.

Demelza’s Director of Clinical Services, Katie Stevens, said: “As a children’s hospice with more than 25 years’ experience, we are all too aware of the challenges families face when their children with serious or life-limiting conditions spend extended periods of time in hospital.

“As a charity, we have led the way on placing our nurses into hospitals to bridge the gap and ensure that parents and carers who are facing unimaginable stress and uncertain times are aware of the support that is available to them through their local children’s hospice.

“But we are operating in a fragmented system which is not joined up from a planning or commissioning perspective, making it difficult for Demelza to accept referrals due to a lack of longer-term planning around each child’s pathway.

“Sustainable funding remains critical. Without it, we will struggle to continue to provide this support and plan our services effectively.”