Helen & Douglas House commissioned Picker to consult key stakeholders to help shape services going forward. The overall aim of the project was to explore the needs of service users, families and staff to inform the design of services provided by Helen & Douglas House. The key questions explored were:
Interviews were carried out with patients and their families, and an online survey was used to consult with staff and wider stakeholders.
When parents were asked what mattered most to them about their overall experience of Helen & Douglas House, four key themes emerged throughout the data; Children’s experiences, staffing and resources, attitude and demeanour of staff, clinical confidence and reliability in the service.
Desired improvements included:
When asked what they believe to be the priority area for investment, the majority of staff and stakeholders suggested:
Staff and stakeholders acknowledged difficulties in recruiting staff and would like to see more recruitment to enable their services to be extended. They’d also like additional resources such as a liaison nurse shared with Oxford University Hospitals and increased planning to support children with tracheostomies or who need ventilation.
When asked whether Helen & Douglas House would be able to meet their future needs, respondents mentioned three key areas of concern: transition care for teenagers entering adult services, emergency care in the case of progressive symptoms, and specialist equipment.
Helen & Douglas House sits within the city of Oxford and as such has challenges with space. Much of the charm and peacefulness of the hospice is down to the fact that they sit within the grounds of a convent. They are limited in terms of their external and internal space, so any improvements have to be done without any increase in ground/floor space.
Helen & Douglas House already needs to raise £3.6 million each year to care for children at the hospice. The additional support and services suggested would place a higher financial burden on the charity.
Parents touched upon the fact that children with a life-limiting condition are living for longer due to advances in medical care, therefore highlighting the importance of forward-thinking when designing services.
In response to the suggestions and challenges faced Helen & Douglas House has:
As more budget becomes available, Helen & Douglas House plans to:
One of the key features of Helen & Douglas House is their ability to care for children with complex clinical needs; providing respite for the parents/carers and allowing families to have breaks.
You know they’ve dealt with so many poorly children, but they do know tricks that ordinary doctors don’t know, so that’s been brilliant…Parent
I was at the point where I just wanted support, I was like, I felt relieved when I got there. It was somebody else’s sort of helping me, it wasn’t all on my shoulders and my husband… I just felt supported you know, I could lay out in the garden and just get my thoughts together for being such a traumatic time, you know it felt like peaceful.Parent
So, going there literally it’s all taken away from me and I am just mum and for the other kids as well.Parent
The planned changes that will be carried out as a result of the survey will enable more families to benefit from the support of Helen & Douglas House. The increased flexibility of drop off will allow families to take breaks with their other children, make more use of the facilities when at the House and most importantly, achieve the respite and family time they need.
Working with Picker on this research has ensured that we develop our services and facilities in the most appropriate way for our visiting families. We’ve been able to prioritise some quick wins and put longer-term plans in place to ensure the more expensive suggestions can be funded. We’re excited to see the difference the changes make to the lives of our families.Andrea Lambert, Director of Clinical Services
items marked with * are required