Fiona reflects that integration continues to have huge potential for Scotland's unpaid carers, but "there remains much work to be done".
When work began over ten years ago to encourage more formalised joint working between health and social care, there was much hope that this would benefit carers. However, progress was patchy and when legislation to formally integrate health and social care was mooted, the national carer organisations were fully behind this.
Audit Scotland has already reported on some of the main challenges to be overcome if the integration of health and social care is to, in reality, transform the ways that health and social care services are delivered and we know that a further audit is planned for 2018, which we await with interest. The first audit was clear of the need to shift resources, including the workforce, towards more preventative and community-based models of care that are affordable and sustainable. They noted that “some progress is being made in developing new models of care but… this has yet to translate to widespread change.”
Although we are still in the early days of this significant and transformational change, it is clear that progress remains inconsistent across partnerships and that carers often find themselves, and the person they care for, caught between two different systems; often unintentionally working in conflict with one another. We know that integrated support can help solve some of these issues but evidence from carers continues to say that the intention has not yet become a reality. We also know that partnerships are at different stages of progress and, that there are many examples of positive holistic initiatives locally, most recently in pre-implementation pilots for the Carers (Scotland) Act 2016, but there remains much work to be done.
Whilst we want to be clear – as we have been all along – that dealing with delayed discharge is not, nor should it be, the only driving force for integration, it is one element of a system where integration can provide a more holistic response. However, to illustrate some of the issues with progress (an issue consistently raised by carers) an example of when problems occur (and where better integration can help) is that of hospital discharge.
Carers Scotland’s annual State of Caring research (this link will take you away from our website) has consistently found that carers were not routinely involved in hospital discharge. Most recently in 2017, a quarter of carers were not informed about a planned discharge and similar proportions were only involved at the last minute. Half of those surveyed said social care services were not in place and 15% that not only was discharge too early but it resulted in the person being readmitted to hospital, with resulting higher costs incurred.
We continue to see the consistent pressure on one part of the system (the NHS) to discharge without a clear understanding of the costs in another part (social care) and most importantly to the health and wellbeing of carers.
We hope that the new Carers Act, with duties to ensure that carers are informed and involved in discharge, will begin to make inroads on this and similar issues. We know that in most cases integrated partnerships will lead on planning and progressing implementation. This gives the opportunity to identify the ways in which integrated services, including services from the third sector and wider employability and further education services can help build the environment that supports both carers and the person they care for.
Whilst we know that health and social care face significant financial challenges in responding to increased demand, expected increases in older people will create a greater demand for unpaid care. It is vital that in seeking to address these challenges, integrated partnerships do not lose sight of delivering the national health and wellbeing outcomes for carers: to reduce the negative impacts of caring and maintain and improve their own health and wellbeing.
Returning to State of Caring, 64% of carers said their physical health had worsened and 74% said they have suffered mental ill health as a result of their caring role. We also know that a significant proportion (41%) said they have put off their own health treatment as a result of caring. This ranges from going to their own GP and hospital appointments right through to putting off planned surgery.
Partnership strategies should outline how they intend to support carers through the Carers Act but also should be able to identify opportunities to deliver health enhancing support for carers, recognising that delivering replacement care to enable carers to take part in activities that improve their health, to attend to their own health needs and to have regular breaks will help deliver on health and wellbeing outcomes. However, it is important that partnerships are able to measure the impact of these activities, beyond identifying where carers have had an adult carers support plan or “feel supported”.
In delivering improved integrated support for carers, we continue to believe that the involvement of carers’ representatives on Integration Joint Boards (IJBs) can make a big difference in understanding and developing the right models of support. In some areas engagement is more meaningful and they are well supported, but they are not yet equal partners across Scotland.
The Carers Collaborative facilitated by the Coalition of Carers in Scotland have worked with carer representatives on IJBs to develop a best practice remit and expenses policy. Some of the main issues they have included are: offering payment for involvement, particularly where carers are out of pocket by having to take time off work, but as a minimum ensure that all carer reps are paid expenses and offering replacement care; providing opportunities for carer reps to have items added to the agenda; ensuring that papers are disseminated early so that carers have time to consult with local carers; involving carer reps in all decisions including decisions about tendering and commissioning; and offering induction and ongoing training involving all members of the board.
In conclusion, the national carer organisations believe that integration continues to have huge potential, in using resources better by designing services with the people who use them to deliver holistic, seamless support for carers and those they care for within their own communities. But there remains much work to be done. We look forward with interest to developments and to supporting carers to be at the heart of this work.
Carers Scotland can be found on Twitter at @CarersScotland (this link will take you away from our website).
Fiona’s Opinion is part of the ALLIANCE’s ‘We Need To Talk About Integration’ anthology which is available at the link below.