improve delegates' knowledge of Together for Short Lives and our SEND project ... identify actions to better integrate a
Together for Short Lives special educational needs and disability (SEND) project Regional network events, June and July 2014 Report of our findings from the events As part of our two-year Department for Education funded project to engage children’s palliative care in the SEND reforms in England, Together for Short Lives hosted six regional events in June and July 2014. The events - held in Exeter, Manchester, Newcastle, Birmingham, Cambridge and London - sought to:
improve delegates’ understanding of children’s palliative care and the unique needs of children with life-limiting conditions
improve delegates’ knowledge of Together for Short Lives and our SEND project
reflect on what improves integration
identify actions to better integrate assessments, plans and services for children with life-limiting conditions
help delegates to meet and network with colleagues from other local areas.
Delegates included commissioners and providers from health and social care; children’s palliative care providers; and representatives of schools and colleges. All the presentations from the six events are now available on our SEND online hub at: http://bit.ly/1coSuCV. What our delegates told us We asked our delegates to answer three questions about their work to join-up assessments, planning and services for children with life-limiting and life-threatening conditions in their local areas. A summary of the key themes emerging from their responses is set out below. Please note that this is not an exhaustive list of all the comments made during the events. What is working well? Structures
joint commissioning panels involving EHC agencies, communicating well, using accessible language and focussing on outcomes
a single point to refer to for all EHC services
multi-disciplinary team (MDT) or ‘team around the child’ meetings to manage the caseload of children who need palliative care - involving children’s hospices; education providers; nursing teams; allied health professionals (speech and language therapists, occupational therapists and physiotherapists); and families
a project manager to oversee the SEND system locally
support from senior-level individuals, who have a strategic vision for integrated children’s services through the SEND system
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Funding and commissioning
a commissioned local children’s palliative care strategy
high needs resource funding
joint funding packages with continuing care providers which are helping children to access education
Practice
discharge planning meetings before a child leaves hospital
using an early support approach
key working
joint visits and joint reviews involving education, health and care (EHC)
involving families and MDTs in producing local offers and EHC plans
person centred planning - with good training and resources available to support this
sharing good practice
What challenges are you experiencing in implementing integrated working? Structures
it is difficult to recruit for specialist positions - transition workers, for example
identifying appropriate key workers
identifying the right people to attend joint commissioning meetings
individuals not having capacity to take part in MDT meetings
IT systems not set up for joint working
poorly engaged adult services
Funding and commissioning
funding services
managing separate EHC budgets - and arguments about where funding should come from
local areas unable to fulfil families’ expectations because services lack capacity and/or have long waiting lists
uncertainty about the role of clinical commissioning groups Page 2 of 4
Practice
capacity among existing key workers
a wide range of understanding of the SEND reforms - including a lack of awareness among some
an overly-protective attitude among some individuals towards their own service or profession
the lack of a shared SEND vocabulary among EHC services - some terms mean different things to different services
language which is inaccessible for young people and families
a lack of a proactive approach to safeguarding issues among professionals
Other
geography - it is challenging to join up assessments, planning, commissioning and services in local areas which cover a large geographical area and/or are predominantly rural
How can the system improve? Structures
EHC agencies should work with each other to create one EHC panel for each local area; this should facilitate a multi-agency assessment process; agencies participate in these meetings and make sure that people in positions to make decisions attend them
local SEND leaders should have a good knowledge of the services which are available locally - and resource levels
space should be provided for multi-agency meetings
Funding and commissioning
voluntary sector organisations should be clear that the services they provide incur costs and need funding
EHC agencies should network each other to make each aware how important palliative care is for children with life-limiting and life-threatening conditions
local areas should be clear about the outcomes they want to achieve
agencies should pool budgets and break down funding barriers
Practice Agencies should:
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develop wikis for the children or young people, with strong input from professionals involved in providing their care and support
make sure workforces are well trained and informed about the SEND reforms and person centred planning
make use of available technology, such as Patients Know Best (PKB)
help to bring about a shared understanding of terminology among different EHC agencies
make sure that children who are waiting for assessments and funding are properly supported
communicate clearly and regularly with families and involve them in making decisions
develop compatible IT systems between different services
share good practice with other individuals and organisations within the local area
Other
have clear local qualifying criteria for EHC plans; make EHC agencies aware of these and the local offer, so that they can support children and families who are not eligible for a plan
For more information Please contact James Cooper, Public Affairs and Policy Manager at Together for Short Lives by email (
[email protected]) or telephone (01179 897 863 or 0741 522 7731) or visit www.togetherforshortlives.org.uk
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