- Increased engagement, participation and activation of people in their health and care isa core principle of current health policy
- People with long-term conditions are involved in the care of their condition 24 hours a day but they may experience barriers to being engaged or active in healthcare systems
- Nurses are in an ideal position to promote greater active involvement in healthcare for people with long-term conditions
This is the last of this series of three articles
looking at personalised care for people with long-term conditions, including practical and straightforward ways that it can be implemented in everyday practice.
The first two articles1,2 gave an overview of personalised care planning and explored the personalised consultation, respectively. This final article gives you more insight into how to effectively engage and involve people with long-term conditions in their health and care.
This series has previously suggested that living with a long-term condition is a 24/7 role for the person who has it, a situation described recently as ‘like having a second job’.3 They have also discussed that today’s healthcare services need to evolve from systems that focus on simply curing illness, to ones that support people to look after themselves more effectively. Current health policy supports greater participation and self-care in health.4,5 Although it will take time for policies to be fully implemented, practitioners providing healthcare services to those with long-term conditions can make an immediate difference to their participation through everyday practice and in consultations.
Causes of lack of engagement and involvement
Most people with long-term conditions need at least an annual review and some need more regular check ups and assessment. Attending for these appointments requires organisation, memory and, perhaps particularly, motivation from the person. This is especially true when there is the possibility of hearing bad news or the risk of being told off, judged or criticised. The latter are among the main reasons people give for non-attendance.6
In addition, more traditional systems of care, designed for acute situations, tend to make people passive and medical staff powerful, which is in sharp contrast with the need to promote self-care and daily decision making. A recent Health Select Committee report7 put it like this: “We have been struck by the mismatch between the needs of 15 million service users with one or more long-term conditions, and the design of the health and care system set up principally to treat and cure episodes of ill health.”
These issues perhaps give us an insight as to why peoples’ engagement, involvement and participation in healthcare can be lower than expected. With some insight into why, we will now proceed to look in more detail at the issues and what we can practically do to improve the situation.
‘Patient’ or ‘person’?
“I feel just like an HbA1c on legs” complained one young woman with Type 1 diabetes about her clinic visit. Another said “They might as well call out ‘next pancreas please’.” Someone with the need for regular blood tests said “they give me a number when I arrive and call me in by that number. I feel inhuman.”
These examples show the opposite of what is needed, which is calling someone by their name, treating them as a whole person and focusing on who they are and not simply their medical test results or their condition. This can go a long way towards personalising encounters and encouraging people to persist in returning to future appointments. Trying to use the word ‘person’ instead of ‘patient’ can be an important first step towards a more welcoming approach and is consistent with the Chief Nursing Officer’s recent campaign for more compassionate responses.8
Many people leave consultations or even education sessions about their long-term condition no better informed or knowledgeable than when they entered. “I heard a lot about diabetes, but no-one answered my questions” said one man about his education session.
For someone to actively engage in - or even attend - consultations, we need to answer questions that arise from the person’s experience, solve their ‘real world’ problems, and talk about options and referrals that will make it more possible to meet the demands of their daily life with their long-term condition. In other words, as quoted in many policy documents, “talk with me, not at me”. No-one can enact a plan that is based on someone else’s view of what needs to be done. For example, appointments with agencies which the person has not been involved in choosing, will simply not be kept or will not be worthwhile.
Involvement in decision-making and managing expectations
As we discussed in the previous article in this series, trying to persuade people to do something that you think is good for them is often a sure-fire way of putting them off coming to see you again. Another motivation-dampener is when a person does not have control over events. For example, in diabetes care, people are often referred to structured education programmes as a matter of course, and even more so recently, since the quality and outcomes framework (QOF) now rewards such referrals.9 However, attendance at structured education sessions is extremely low. This is partly because the invitation following the referral comes out of the blue and may also be at an inconvenient time or place. The same is true of unexpected appointments for blood tests, investigations or referrals for other long-term conditions.
Sometimes the opposite occurs, where people do not receive the referrals, tests or investigations they wish for. This situation can sometimes arise through well-intentioned health professionals drawing automatically on their experience of similar others (perhaps others with the same condition, demographic or age) and second-guessing what the present individual might wish (eg. ‘they won’t want to travel to that education session’ or ‘they will be worried if I give them all their test results’). In reality, the only way of knowing what is acceptable to someone or how they will react, is to ask them.
So you can see that it is essential that people are involved in all the decisions that are made in relation to what is, after all, their body, their results and their attendance. People will be most active towards decisions they have made themselves, not those of others, so seeking and deliberating a person’s own ideas about what needs to happen will boost their engagement in the process.
Non-judgmental and uncritical approach
Like most things human, long-term conditions are affected by everything in everyday life, including stress and the weather. People’s best efforts to take care of themselves are sometimes thwarted by unexpected events and demands from work, family or friends. Medicines and treatments sometimes seem to them to be ineffective or have side effects that make them unpalatable or antisocial, so people don’t want to take them all the time.
There is also much more complexity to taking care of yourself with a long-term condition than it seems on paper – self testing, diaries, the need for extra equipment to be carted everywhere, not to mention regularly having to apply or reapply for benefits, driving licences or special insurance policies. And these actions are in addition to the ‘everyday’ lifestyle needs of healthy eating, physical activity or moderating alcohol intake. Managing this complexity takes time and energy that is not always 100% present due to other demands.
However, appointments and consultations about the condition often centre on what has not been achieved or taken up, the mismanagement of situations or some other form of ‘failure’. It’s rare that success is celebrated, in and of itself, or a dispassionate discussion about what went wrong is held. ‘Woulds’ ‘oughts’ and ‘shoulds’ are very much a feature of many encounters, and yet are rarely helpful in activating or engaging people. It may be more effective to ‘over celebrate and under criticise’ as one expert once put it. Better still, starting simply with the person’s view of how they are doing and working with them on the issues they raise and the questions they wish to have answered answer – as in the personalised care planning approach that we discussed earlier10 – is likely to be much more effective.
Canvas opinion and ask for feedback
As mentioned earlier, it is impossible to predict people’s preferences, nor how they will respond to their experience of a consultation or educational event. Hence, proactively gathering views and feedback from people using your services is essential for a ‘reality check’. You can do this in many quick ways, for example a simple (two or three item) questionnaire for people attending, an online survey or a concerned enquiry by telephone to ask people the reasons why they were not able to attend.
Making these enquiries a routine part of your service creates an expectation among people that they will be asked, makes it more likely they will respond and gives you valuable information to make changes where they are necessary. Collaborating in developing your services with the people who use them, is the only way you will really be able to truly personalise them and encourage involvement.
This article has described the current health policy on engaging, activating and involving people with long term conditions in their own health and care and given ways you can put this into practice to overcome barriers to their involvement in everyday services
The more personally meaningful and relevant the systems and processes of care are, the more people will be engaged in them and motivated to participate. Wishing you success!
1. Walker R. Care Planning for Long Term Conditions: part one. Nursing in Practice 2014;78:86-90.
2. Walker, R. Care Planning for Long Term Conditions: part two. Nursing in Practice 2014;79:84-7.
4. NHS England. Transforming participation in health and care. London. 2013.
5. Department of Health. A mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015. London: Department of Health; 2012.
6. Aloha AJ, Groop P-H. Barriers to self-management of diabetes. Diabet Med 2013;30:413-20.
8. NHS Commissioning Board. Compassion in Practice. London: NHS England; 2012.
10. Walker R, Rodgers J. Implementing Personalised Care Planning for Long Term conditions. 2011. SD publications.
RN BSc (Hons) MA (Ed) Director of Successful Diabetes
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