Addressing objective 3: to determine how transitional health care should
be organised, provided and commissioned
Aims
l To synthesise learning from the programme on what and how to commission.
l To learn about the most useful way to provide research-based evidence to inform commissioners,
through local and national meetings and visits.
Methods
Using results from WP 3.2 on commissioning, from WP 3.1 on DAH and from WPs 2.1 and 2.2 on features of services for transitional health care associated with better outcomes, we developed two brief documents setting out for commissioners the preliminary key research findings and implications of the programme. We wanted to learn from commissioners whether or not we were presenting material that they thought was relevant and useful, and in an appropriate manner. We presented these documents to the following groups and individuals, modifying their contents as we proceeded:
l an academic at a university in south-west England who had undertaken research into evidence-based
commissioning and what influences commissioners’ decision-making
l a children’s health commissioner (also general practitioner) in a CCG in north-east England
l chief executives of a CCG consortium in north-east England
l chief executives of a CCG consortium in south-east England
l the Clinical Leadership Committee for specialist services at NHS England
l three telephone interviews with members of the above Clinical Leadership Committee
l a commissioner of specialist services for mental health in north England
l a commissioner of specialist services for long-term conditions in adults in the Midlands.
Thus, we talked with seven commissioners individually and with three committees at which 21 commissioners were present.
During the consultation meetings, we presented the key findings about the outcomes and lessons from the programme, focusing on the commissioning pathway and guidance. We encouraged, through discussion with various stakeholders, critical reflection to ensure the relevance of the emergent findings, identify key lessons learned, and explore the implications of these lessons for developing a nationally consistent and comprehensive approach to commissioning for transition. The discussions were central to challenging, modifying and enhancing our guidance for commissioning for transitional health care for young people with long-term conditions.
We kept notes of the content of all the meetings.
Analysis
Below are summaries of our discussions based on the notes of the meetings. We used an iterative process, based on the advice and suggestions we received, to modify and revise the summary documents and the way we presented our proposals to commissioners.
Discussion with academic in south-west England
This person explained that commissioners are likely to be interested in our broader knowledge of transition, not just in the research findings. Commissioners regularly seek advice from colleagues and trusted experts. By showing that we are also keen to learn from them, we may come to be regarded as a trusted source of information.
We should avoid jargon and make sure our messages are demonstrably relevant to patients. We should aim to present three or four key messages that are clear, practical, evidence based and cost neutral or will save money. If we wish to draw the attention of commissioners to a particular problem, especially one that
they may not have been aware of, then we also need to propose a solution– preferably one that reduces
cost or at least does not cost more.
Discussions with Clinical Commissioning Groups
In general, CCG commissioners said that our proposed summary documents were useful, well written and articulated. Several commissioners were enthusiastic about our work and recognised the implications for their commissioning practice. We were advised to be explicit about how proposals from the research programme would yield improved outcomes.
All commissioners welcomed the concept of DAH, although many had not encountered it before. Commissioners asked us how they would know that providers were improving transition in their services, or at least that they were doing what they had been commissioned to do.
Discussions with commissioners for specialist services at NHS England, both at regional level and centrally
The research programme should focus on solutions.
Although the key implications of the programme could be implemented within existing service provision, with little or no extra cost, we were advised that senior managers and health-care providers tended to request extra funds whenever change was proposed; we should try to anticipate such arguments.
We were advised to set out the risks of‘not transitioning well’ as well as highlighting the potential
longer-term poor health outcomes.
The toolkit on DAH was considered an excellent idea. Although directed to NHS organisations (managers, teams and individual clinicians), it should also be educational for commissioners.
Those young people for whom there was no equivalent specialist tertiary adults’ service might be
transferred to the CCG for secondary care or to primary care. These pathways should be stated explicitly by commissioners through service specifications and contractual arrangements.
Some specifications for specialist adults’ and children’s services do include specific mention of transition.
However, commissioners may not then follow it through to hold trusts to account. There is a need for quality standards or indicators for transition.
There was general agreement that transition is currently considered to be the responsibility of children’s
commissioners and children’s health-care providers. To achieve change, this underlying premise needs to
be challenged so that arrangements for transition include adults’ service commissioners and providers.
All agreed the approach to improving transition should be owned at trust board level.
Synthesis
Almost all of the commissioners we visited thought that now was an opportune time to focus on transition,
in the context of the publication of the 2016 NICE guidance14and quality standard for transition.117
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Many commissioners stated that they had been aware of the need to address transition but had not been certain about how best to achieve this; having a relatively small number of specific evidence-based proposals from our research programme was timely and useful.
Participants acknowledged that transition is currently considered the responsibility of children’s commissioners
and children’s health-care providers; they thought that this should change, and that commissioners and
providers of adults’ health care should be equally responsible.
There was also recognition of the need to achieve an integrated approach to working relationships within health and between health and social care commissioning to support shared responsibility for and ownership of transitional health care of young people. In the light of the recent publication of the NICE guidance on transition, commissioners acknowledged the potential impact of integrated commissioning for transitional health care.
There was a general, but not universal, view that it was easier to be prescriptive in service specifications if there was evidence to support it. However, this depends on what is meant by evidence. Those trained in public health were more likely to use research evidence, but other commissioners were more likely to use
local information and local experiences, with research evidence influencing only 20% of them.118It was,
however, acknowledged that the commissioning proposals from our research programme could support the development of evidence-based commissioning for transitional health care.
Strengths and limitations
This is, as far as we are aware, the first work to study commissioning for transition. We were able to identify some major issues for commissioning, and gain an understanding of the context in which commissioners work and the parameters they use to direct health-care provider organisations in commissioning transition.
As most commissioners we talked with agreed that transition was important and that now was an opportune time to introduce change, it would have been useful to meet with commissioners who were more sceptical about the importance of transition.
Our presentations to commissioners focused on a small number of implications for commissioners; these were refined as discussed above. This inevitably meant that we could not share the detail and complexities of all of the findings of the research programme.
We have published two papers on commissioning112,113and we are preparing a third.
Key findings
Box 2 shows the final version of the document, after all of its modifications, that we discussed with commissioners. It is also the final version of the document for commissioners that we presented at the
dissemination meeting at The King’s Fund in October 2017.
Inter-relationship with other parts of the programme
The summary of findings for commissioners in Box 2 includes proposals about DAH that were explored in WP 3.1 and about the PBFs that were explored in the longitudinal study WPs 2.1 and 2.2.
What we learned about the commissioning process in WPs 3.2 and 3.3 has directly informed our conclusions about how commissioning might be improved, and directly informed how best to present this evidence to those responsible for commissioning health care in different NHS settings.
This WP directly determined what we included and how we framed implications 1, 2 and 6 of the programme.
BOX 2 Early findings discussed with commissioners
Successful transition is a priority for all children with long-term conditions, not just the small group of young people with very complex needs who require integrated commissioning across CCGs, Health and Well-being Boards, education and social services to fund bespoke multiagency packages of care.
1. Our findings indicate that there is an important role for commissioners of adults’ services to commission transitional health care, in addition to commissioners of children’s services, with whom responsibility for transitional health care currently lies.
Commissioners and providers regarded transition as the responsibility of children’s services. This is inappropriate, given that transition extends to approximately the age of 24 years.
2.‘Developmentally appropriate health care’ is a crucial aspect of transitional health care. Our findings indicate the importance of health services being commissioned to ensure that providers deliver DAH across all health-care services, and that this will be facilitated by commitment from senior provider and commissioner leaders.
Developmentally appropriate health care is the subject of a toolkit we have developed in which DAH is defined, and that is a resource for education and training (www.northumbria.nhs.uk/?s=dahtoolkit).
One important element of DAH is that young people, in both adults’ and children’s services, need to be seen by themselves for at least some of the consultation. However, our research shows that the involvement of parents in a manner that suits both parties (and this will vary between different young person/parent dyads) leads to better outcomes, in terms of satisfaction with services, disease control, continuity of health care and maturation to adult roles. Currently, adults’ services often exclude parents from consultation on the grounds of confidentiality. This should not happen provided that a young person gives permission for a parent to be present for some of the consultation.
3. Where an adults’ service to which to transfer young people with a long-term condition is not commissioned, our findings indicate an important role for commissioners in setting out explicitly that the transfer arrangements will usually be to primary care, and require appropriate documentation and assistance to the young person to make their first appointment.
4. Our findings indicate the importance of commissioning to ensure that a young person and family meet the adult team before transfer.
Our research shows that meeting the adult team before transfer of health care predicts better adult outcomes. The joint appointment would involve the staff who will be caring for the young person in the adults’ service or primary care.
5. Our findings indicate an important role for commissioners in ensuring that health-care provider organisations establish a Transition Steering Committee with a trust-wide transition co-ordinator. Our research suggests that this enables an organisation to develop and deliver an organisation-wide approach. We found good practice led by enthusiasts rarely generalised to other specialties or adults’ services.
The text presented in this box is derived from 29 telephone conversations with commissioners (2013/14), three site visits to commissioning organisations (2015/16) and from with 28 NHS commissioners at meetings over the period 2016/17. These commissioners may not have been typical of NHS commissioners, as we have set out in limitations.
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