In 2020 Derian House children’s hospice employed DJS Research to find out whether their services met local needs, as part of their work developing a new organisational strategy. The researchers interviewed 100 families and contacted 19 Clinical Commissioning Groups (CCGs), including making Freedom of Information requests.
Outcomes
Results from families showed some areas of key need:
respite care
hydrotherapy
the holiday lodge
emotional support
wellbeing services.
The hospice was able to improve and adapt services accordingly.
Results from the Clinical Commissioning Groups (CCGs) showed that the approach to palliative and end of life care (PEOLC) was patchy across the region. The Freedom of Information requests found that many CCGs did not have a strategy for children’s PEOLC. However many welcomed the opportunity to discuss this with the hospice and some used the results of the research to inform their strategy development.
CCGs were asked for a list of services they would like Derian House to provide. The hospice already had some of these services, which highlighted the need to raise awareness. Lots of the commissioners said they wanted more support for transition from child to adult care, and Derian House was able to work in partnership with adult hospices to improve transition services in response.
As a result of this work, the hospice has been able to build strong relationships with commissioners across the region. Commissioners are much more supportive of the hospice, which is now seen as a key provider. There has also been an increase in statutory funding.
Facilitators, challenges and advice
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Key facilitators
The hospice created an infographic, clearly showing where the gaps in provision are across the region. This helped them to demonstrate their case to commissioners and make recommendations about what commissioners needed to do.
Using an independent company to carry out the research was helpful, as it broke down barriers for stakeholders (there was no concern about bias).
Challenges
Engaging with partners across the system takes staff time and capacity. The hospice divided tasks up among the senior leadership team so that nobody was overloaded.
Sometimes commissioners asked the hospice to deliver a service that was outside their remit. The hospice declined anything that did not meet its charitable objectives, whilst making it clear that it wants to work alongside the NHS.
On other occasions, there has not been funding to fill a particular gap. The hospice has been able to think creatively around this, for example by working with other local partners to fill a need.
Tips and advice
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Hospices need to be relevant to the needs of their local community and the NHS. Use knowledge and evidence to show what those needs are and suggest solutions. Take time to understand the commissioners’ points of view and bring them into discussions. Be open to new ways of working.
Remember that a key need for the NHS is cost effectiveness - you need to show commissioners that you understand this.
It’s important to establish your identity and brand - you can be an independent charity and work alongside the NHS. Focus on working together to meet people’s needs. Highlight what you can do (rather than what you can’t).
Put your head above the parapet and shout out about the amazing work you do!
Future development
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Derian House is currently working with a third party organisation to carry out research into the wellbeing needs of children with life-limiting conditions. This will inform the development of wellbeing services.
The hospice is looking at ways to find out the needs of people from diverse communities.
