Commissioning a People Powered NHS – feedback to guidance on individual and collective involvement duties
Response to draft guidance
Contact:
Bernd Sass, Strategic Partnership Manager, Disability Rights UK
Bernd.Sass@disabilityrightsuk.org , mobile 07906 521536
We are grateful for the opportunity to respond again to this latest draft for guidance on the involvement duties set out in the Health and Social Care Act 2012. See previous response which we still consider relevant http://disabilityrightsuk.org/department-health-24-october-2012-no-decision-about-us-without-us-–-patients-and-public-partners ).
We welcome the decision to issue comprehensive guidance across individual and collective duties which may help as that distinction may be blurred in practice. This latest version of the guidance is strong and clear on the background (eg Mid Staffordshire), mission and vision and on some principles and measures outlining ‘why’ involvement is necessary. However, with the case studies very much reduced in substance (and shifted to Annex E) an opportunity has been missed to convince clinical commissioning groups (CCGs) of engaging and investing in genuine co-production throughout and as an integral part of the commissioning cycle. We know from some CCGs who think that it will count as involvement to deliver the ‘Friends & Family Test’ and provide a narrative as the CCG’s response to any expressed concerns. However, such cosmetic improvements to traditional PPI functions will only lead the public to demand far more costly statutory guarantees such as minimum staffing levels on all wards as a result from Mid Staffordshire.
Demonstrating the business case
Thus, the guidance lacks a clearly illustrated public sector business case (contained in some of the previous case studies) and a comprehensive manual on how to go about embedding individual and collective involvement throughout. Such a manual (taking the form of exemplary change pathways or maps) would help commissioners, other public services and community initiatives such as user-led and voluntary community social enterprise organisations (VCSE) to approach involvement hands-on and for mutual benefit.
After all, CCGS do not and cannot operate any longer in isolation. Better health outcomes and productivity gains (eg through reduction of unnecessary A&E attendances and harmful clinical procedures) can both evolve from stronger patient participation and public partnerships. Patients, friends and families can be safeguards against false incentives under Payment by Results as they generally opt for the least invasive treatments as long as they are supported to make informed choices, eg through a ‘right to peer support’ established throughout the NHS.
As a previous draft of the guidance pointed out, “people (can be) inclined to be more radical in their thinking about options than managers and professionals”. In fact, the introduction of personal health budgets into the NHS can scale up such healthy influences in the NHS. Personal budget holders can potentially (especially with others through pooling resources) micro-commission care, treatment and complementary support in a range of care areas beyond NHS Continuing Care. Associated costs would then be completely transparent. These individual choices on personal budgets could be incorporated (once tried and tested) into the services made available to everyone in NHS-managed care. This latter by-product may over time address some of the concerns that the current guidance does not sufficiently respond to health inequalities and community development, especially in disadvantaged areas. Place-shaping can be very effective in this respect as we have outlined in a resource on engagement practices of former LINks http://www.linkstogoodpractice.org.uk/project-reports/engagement
On the back of such (anticipated) achievements in partnership-working, transparency and productivity gains, a new consensus on things like ‘minimum staffing levels’ can be reached and also financed. This is the case that the guidance can and must make.
Empowering and increasing people’s capacity to act as change agents
The underlying partnership approach requires people not only to have voice but power and to exercise that as well – as contained in the NHS Mandate. The current version of the guidance mentions the need for staff training to manage the cultural shift but we think there should be parallel investment in training for patients and the public as co-change agents, experts by experience and peer supporters / navigators, etc. . Ultimately, the NHS would hugely benefit from a support infrastructure that is more akin to that in social care where such capacity building, individual support planning and representation are commissioned out to independent (user-led) organisations. This would remove the gradient between staff and patients and create an organic platform for a genuine shift from enabling voice to genuine sharing of power.
We would like to illustrate this shift with an example of a programme which we also recommend for inclusion in the case studies as a model for both individual and collective involvement in the NHS – full report here http://disabilityrightsuk.org/policy-campaigns/health-and-social-care-reforms/user-driven-commissioning-building-%E2%80%98lived-experience.
As part of our role as a Strategic Partner to the DH (together with Shaping Our Lives), we have identified and then facilitated from March 2011 six local partnerships between commissioners and innovative user-led projects. From the outset, people were seen and encouraged to pursue their own pathways – thus, commissioners could not (approach providers) and come up with ready-made pathways but instead co-produced these pathways with and on the basis of people’s wants, needs, assets and insights. We have started this forum in a range of local meetings followed by a roundtable, exploring jointly and making sense of expressions such as ‘nothing about us without us’. This has set free the impact of lived experience on positive outcomes in health, independent living and quality of life (alongside integration and productivity gains).
Taking stock of what we were all engaged in already, some kind of formula quickly emerged, our three stepping stones: in some local areas people were supported to pool their personal budgets so that they could pursue shared interests often for the first time in their lives. Some projects did not want to stop there but use the insights gained in the process to directly inform de- and re-commissioning, eg through the ‘Working Together For Change’ approach. Finally, there were projects which were more keen to develop peer support as a way of shaping the market by direct delivery. A number of organisations were established that are user-led (ULOs) as ‘hybrid’ mutuals, i.e. co-led with staff. They all focus on providing peer support across people’s whole life domains so people are supported in questions of social care, employment, health or welfare by someone who has travelled a similar path in the past.
Turning to the immediate lessons learned by the programme, it became clear that there was a need for open, transparent conversations about budgets. Commissioners acknowledged that ULOs needed to be supported to enter the market place in an independent capacity so that full benefits could be reaped for all. ULOs realised that it was part of their pioneering role to focus on and build up the evidence base.
Since then, a range of pooling projects have begun to shift economies of scale towards the feasibility of their shared choices, quality has been put on a more equal footing with price in negotiations of service level agreements, peer support has become a defined element to assess, specify and co-deliver improved access and discharge pathways in mental health for example, and a new ULO has even been kick started by a charity provider consortium – quite an achievement if one thinks of the distinct cultures, timescales and objectives service users and commissioners (eg rights-based approach versus short-term efficiency targets) commonly operate. We now hope to align our learning with approaches such as experience-led commissioning, test parity between medical and non-medical aspects of NHS care and pilot payment profiles or at least incentives that are linked to Patient-Reported Outcome Measures (PROMs) in the shift from voice to power.
Together with Shaping Our Lives and CHANGE, Disability Rights UK is a strategic partner to the Department of Health, NHS England and Public Health England.
Disability Rights UK is a national pan-disability organisation, led, run and controlled by disabled people, with disabled people making up at least three-quarters of its board members. We work to create a society where everyone with lived experience of disability or health conditions can participate equally as full citizens. We provide expert advice, training and expertise on how to improve services, employee wellbeing and productivity as well as training services for professional advice workers disabilityrightsuk.org .
Shaping Our Lives National User Network’s vision is of a society which is equal and fair where all people have the same opportunities, choices, rights and responsibilities – a society where people have choice and control over the way they live and the support services they use. Shaping Our Lives aims to improve the quality of care and support people receive by:
- Supporting the development of local user involvement so better outcomes are achieved for service users.
- Giving a shared voice to user controlled organisations.
- Enabling service user involvement at a national and local level.
- Working across all user groups in an equal and accessible manner.
- Enabling groups to link to other user controlled groups.
CHANGE was set up in 1993. CHANGE is a leading national user led Disabled People’s organisation working for choices, rights and the full inclusion of people with learning disabilities. At CHANGE, people with learning disabilities volunteer and are employed on equal salaries alongside non learning disabled colleagues to: produce accessible easy read information; deliver training to health and social care professionals; and co run projects www.changepeople.org.uk .