By Vic Rayner, Executive Director, National Care Forum
No one watching the recent Panorama programme on living with Dementia can have failed to have been moved by the intimate access that Chris Mason, his wife Jane and their family allowed, in order to demonstrate the changes to their lives brought on as a result of the progression of his early onset Dementia.
I was particularly struck by the impact on the relationship between Chris and Jane and how decisions around future care were seen very differently through their respective views. I find this interesting, because I have heard a lot in recent months about what needs to happen to get individuals to think about their care at an earlier juncture, and much less about engaging with whole families around this agenda.
There is undoubtedly a real challenge in the UK around how to ensure that people are adequately prepared for later life, including key decisions around pensions, housing and care. Whether this arises from self-denial, ‘peter pan’ syndrome, or ignorance of options, we seem almost universally ill prepared for changes in our own lives. However, as the Panorama programme so clearly emphasised, we are much better at evoking an understanding of changes in the health and well-being of others, and indeed how changes to one’s own health are impacting on others. So maybe this is where the debate on the future of social care needs to get going, involving whole families in a much bigger debate about how we collectively want to live our lives.
It is true that both resident and relative engagement is high on the agenda for organisations once someone enters a service, and it is an important indicator of quality. The National Care Forum established a quality framework over five years ago, which highlighted the importance of this activity. In reviewing the most recent report I couldn’t help noticing that many organisations did not rate their ability to engage with relatives as highly as their impressive achievements in engaging residents. Of course, some might say, this is where their focus should rightly sit, with the individual, however, more often than not, people come with strings attached. It is those strings that tie them to their memories, livelihoods and history. It is those strings that will lead providers of services to a better, more holistic, understanding of who someone is, providing a truly four dimensional perspective.
It is for this reason that I was really pleased to hear about a new pilot being carried out to help organisations benchmark the views of relatives on the quality of their services. Your Care Rating, who have been offering benchmarking of resident feedback for the last five years, have identified a need to harness and capture friends and relatives viewpoints. This interesting development provides an insight into how care is viewed through the varying lens of one family unit. Whilst there were some similarities in how provision was rated, there were also areas where relatives were expressing distinctly different views to that of residents. These included perceptions around whether or not there were appropriate levels of staffing and unmet expectations around having a say in the running of the home and as a consequence, how complaints and concerns were dealt with. Importantly, there were also notable factors that influenced the response, including those under 65 expressing higher expectations in relation to home comforts and those who visited more regularly wanting more from staff.
So what can we learn from this, as we move forward to ever more challenging times. For me, there are key benefits for organisations in thinking more strategically about how they engage with relatives and friends. The primary gain will be providing ever better, more personalised services to those living in or using services. The initial assessment process provides a vital snapshot, but the whole person takes time to appear, and close links with relatives will provide ongoing insight and perspective. In addition, they are an excellent critical friend. They want you to succeed in providing the best possible care for their loved one – and whilst what they want may not be possible each and every time – they give you the wonderful direct feedback on the direction of travel for services in the future.
Relationships are never easy, largely because they involve people like you and me – complicated, complex, challenging and fun. Friends and relatives can be excellent allies in supporting the establishment of meaningful relationships with those who are using services – and I encourage organisations to think now about what they need to do to put the ‘relation’ back in relationships.