In Sense, relationships between staff, volunteers, deafblind people and families have always been valued – have indeed been essential to the organisation’s work. But there is also a need for staff to be professional, to keep appropriate boundaries, and crucially, for the people we serve to be protected from harm. Sarah Butler explores an issue that is a challenge for many across the social care sector.

To find happiness we need close relationships with other people: this was the conclusion of the 2009 Sense annual lecture. Whilst the potential for happiness lies within us, our connections with other people are what give our lives meaning and value. We instinctively know this to be true, and scientists are beginning to prove it too.

Professor John Cacioppo’s new book 'Loneliness' shows the harm that prolonged loneliness can do to health – but also that social connection is a powerful healer. His experiments using brain imaging, analysis of blood pressure, immune response, stress hormones, behaviour and gene expression show that humans are physiologically and psychologically intertwined.

At the University of St Andrews, Maggie Ellis and Arlene Astell discovered that though people with advanced dementia may have lost speech and memory, they none the less retain the urge to communicate or interact, and become distressed and then passive when others withdraw attention. They conclude that interaction is a fundamental human need.

At this year’s International Attachment Conference in Barcelona, Dr James Coan described how  patients’ tolerance to pain is vastly increased when their hand is held by someone with whom they are in a close relationship – far more so than when their hand is held by a stranger, or when they are left alone (1). As Dr Felicity de Zulueta of the Maudsley Hospital in London commented: ‘Brains show clearly that we are not individuals – we are social creatures. We have to relate to survive.’

Scientists are making it clear that we need to relate to others – to survive, to be happy, to be healthy. No one at Sense will be surprised to hear this, though it’s always reassuring to know that our instincts are backed by solid research.

Given this agreement about the importance of connections between people, why are the relationships between staff and deafblind people something we still need to think about so carefully? Sense staff have been working closely with the people they support for over fifty years – and this is one of the most worthwhile, stimulating and distinctive areas of our work. But there are still many issues we still need to reflect upon, weigh up and sometimes confront.

Practitioners in all care contexts have a duty of care to protect the people they support – and themselves – by keeping their relationships completely professional. When things go wrong – at worst when someone is abused – an individual is badly hurt, and organisations and staff may lose their reputations and their jobs.

Sense itself takes the safety of the people it supports extremely seriously: staff are thoroughly trained, appraised and supervised, there is an adult protection policy and a Safeguarding Committee which monitors allegations and recommends new policy. In addition, all staff receive ongoing training and guidance in this area. “It is really important that Sense makes sure staff are clear about appropriate boundaries in their relationships with the people they support,” says Alison Bennett, Head of Staff Development. ”Our range of learning and development activities provide staff with the opportunity to explore this issue and share any concerns on an ongoing basis. This starts at induction and carries on through every stage of a worker’s employment.”

But should staff become friends with the people they support? The easy answer is no. Staff are there to provide support, which may be practical or emotional, but they do this for many people, and must remain at a certain distance in order to be sure that they do not favour some people over others, and that they always make decisions based on sound judgement rather than emotion. Their professional relationship cannot take the place of ordinary friendships for all the people they work with.

It would, however, be glib to say that to be professional, staff should remain emotionally detached from the people they support. After all, every relationship we have – no matter how formal – has some degree of emotional involvement. Providing support to people dealing with deafblindness cannot be done at arm’s length – staff need to understand what is going on in someone’s life to be able to provide the best support, and often need to get physically close in order to communicate and guide – this isn’t a job about form-filling, or simply providing red and white canes.

Helen Potter works with families at the Woodside Centre and asks “Is someone who cares not a friend?” She sees herself as a friend to the families she supports, but just as we all have different sorts of friends, so she is a practical sort of friend. She would never socialise with the families outside work, for example: “Getting too involved, emotionally and so on, would not be professional, but you have to get involved to do the job. I think that I walk with them. The last thing a family wants – especially after the death of their child – is for you to be too dispassionate – you weep with them and they’d be uncomfortable if you didn’t. I don’t go around weeping, or turn on the tears, but families see through people who aren’t on their wavelength – they want you to listen, to help them get more confident about the future, to give practical help with all the little things.

Liz Duncan, Sense’s Head of Practice for people with acquired deafblindness says: “Relationship building is central to what we do. It’s the only way we make progress because of the unique barriers that deafblindness puts up – a deafblind man is denied significant pieces of information about us because they don’t see us, don’t hear us. We have to put that information in and tell them something that gives them confidence.Without giving some information they know a lot less about me than would a hearing sighted person. To get the ball rolling you have to give something of yourself”.

She continues: “Because of this, there is a risk that the boundaries between the personal and the professional can get blurred.” However this is approached, and as we saw with Meg and Jo, the balance of power is a tricky aspect of all professional caring relationships. In an ordinary relationship it is usually fairly evenly balanced, but when someone is paid to provide support, the relationship may become unbalanced. An imbalance can arise for various reasons. For example, people come to Sense because they are in need of support - but the professional they work with will never ask for support in return. There is an imbalance inherent in the relationship.

The different parties also have varying levels of information and knowledge. Staff need to have information about the person they are supporting. The nature of this information depends on the context in which support is being provided, of course: a person with complex problems living in a home will be supported by staff who know an enormous amount about every aspect of their life. An older deafblind person living in their own home, on the other hand, shares only the information she wants to: but none the less she will know a good deal less about the personal life of the person supporting her than they do about her.

This is perhaps one of the features that defines relationships as professional rather than based on friendship: one person has to disclose information in order to receive support, whereas the other chooses how much to disclose based entirely on their own preference, and how much they feel they need to reveal in order to gain trust.

There may also be a difference of understanding. The ability to understand a situation, including the nature of a relationship with a member of staff, depends on a person’s experience, cognitive ability and the emotional state they are in. This may affect anyone being supported by Sense – not just people with learning difficulties. For example an outreach worker visiting a deafblind person in their own home needs to recognise that, while the deafblind person may have no cognitive impairment, their emotional state may make them vulnerable and less able to judge a situation.

Working closely with people who often desperately need support, whose lives may be in turmoil, or who have extremely difficult decisions to make, is very demanding.

Chris Fuggle (who mostly supports people in Sense homes) believes that, as individuals, most of us have a range of different relationships. Our interactions, beliefs and expectations can vary regularly depending on our own changing feelings and those of our acquaintances, as well as our mutual history.

Fundamentally though, we can and do make choices about what form of support we seek from others. We can have very different relationships with those people we categorise as `friends’: one friend might be a particularly good `listener’, a second an excellent `problem solver’ and a third `really funny’ etc. Similarly we may perceive some individuals as having authority over us (a police woman), being there to cater to our wishes (a waiter) or being people with whom we can discuss our most private thoughts (a counsellor). Different people fulfil different needs.

Throughout our lives most of us interact with each friend on an assumed `equal footing’ (either we or they can choose to further develop or break away from the friendship at any time). But we must remember that in the past many deafblind people have not always been given the chance to choose who they spend time with.

“In my professional experience,” says Chris, it is very rare for congenitally deafblind people to show any form of dislike for particular staff – this in itself is indicative of an imbalance in previous relationships and a lack of `equal footing’. Could losing the opportunity to choose new friends, keep old ones or discard others adversely affect someone’s understanding of (or interest in) what `friendship’ truly is?”

However, Chris does feel that recent changes in social policy, especially the introduction of the Mental Capacity Act - may be starting to positively address this discrepancy, and that Sense is indeed active in taking these issues forward. “We must remember that staff can often have difficult decisions to make“ he says. “They aim to advocate without interfering or making assumptions, promote considered risk taking without compromising their duty of care, and empower without overwhelming.”

The development of relationship choices is vital, even though these may not suit everyone’s previous way of thinking. For example, we always need to remember that “we spend time in someone’s home they don’t live in our workplace”.

The relationships within Sense are the bread and butter of what we do. They give it the ability to deliver meaningful help to individuals who live in extremely difficult situations.  Long may the debate continue!

More than one person

One reason that staff can feel under pressure is that they feel that they are the only person providing a deafblind person with a close relationship. This isn’t healthy for either person, and isn’t sustainable.
Both Sense Scotland and Sense have established friendship groups, enabling young deafblind people to maintain and develop friendships beyond Sense. They have been so popular that Paul Hart at Sense Scotland says that they will be at the heart of the organisation’s work in future.

Story

Jo and Megan

Jo Stimson’s relationship with Megan Mann at Sense shows how essential close relationships are in much of Sense’s work. Jo has been losing her sight and hearing since she was three years old. In her fifties she also developed polymyalgia, and this is what made her seek help with her hearing and sight problem. She says “It was Meg’s professional attitude and her caring and honest manner that made me feel very safe with her.” Jo and Meg discuss the nature of their relationship below:

Meg: I remember the day I arrived on your doorstep and the first impressions I had of you. You seemed very nervous meeting me but at the same time I felt that although you were in quite a desperate situation, you were also determined to remain in control of what was happening to you. I remember talking to you about the possibilities of what might happen, the opportunities to expand your modes of communication and I was struck by the determination you showed for overcoming some of your difficulties. I left that morning thinking that you were someone that I could quite happily work with.

Jo: I don't think I will ever forget that day, Meg! You had on a bright blue top and black trousers and you gave your name so clearly, I was able to hear it. I was so unsure about what would happen during our visit, I didn't want or need anyone to take control of my life. I needed someone I could talk to, someone who would take the weight of what was happening to me, and to help me come to terms with it properly.

Meg: It’s really good to know that you didn't feel that the control was being taken off you. I think that the balance of power in a relationship like this is really difficult to monitor. I come to a person like you knowing that I have the understanding, the skills, the knowledge, etc, and I am mindful that most people I meet only come to my attention when they have reached a point when they can no longer cope. In that setting I am in a strong position and I could quite easily abuse that situation. How do you feel about having to rely on someone else to guide you out of what was an emotionally vulnerable situation?

Jo: I was, in the beginning, very unsure of you, and of what would happen, as I had never asked for help of that kind before. It took a while for me to feel comfortable with it. You had a very professional attitude to what you were doing and you were never condescending or patronising, which helped greatly in building the trust we needed before you could help me. Once that was in place I instinctively knew that you were the right person to help me turn my life around. I never felt any uncertainty about your role in my life after that.

Meg: It's interesting that you mentioned my 'professional' approach and that it gave you the confidence to trust. I am aware that at one time the mention of professional approach was like a red rag to a bull. What has changed your view of it? Do you agree that the relationship needs to be kept on a professional basis? Do you see room for friendship in a relationship like this? Would that work for everyone? How do we maintain that balance? Do you see me as a friend or as a professional?

Jo: I'm so pleased you remember that, Meg - the word 'professional' used to seem very out of place when we got to know each other better. After all I was talking about myself in a way which I was never able to do before. You made me realise that what I wanted to do and to happen was important and it was very difficult for me to keep it fixed that you were here because of the work you do. Although the professional boundaries were always in place it was after a while for me like having a visit from a friend, someone I could talk to and someone who offered continuity and as I've said before, continuity builds confidence! I now see you in both roles but I know that when we do anything together the fine line between work and friendship will always have to be in place.

Jo and Meg’s conversation provides a very good example of how the relationship between a member of staff and a deafblind person can be positive and trusting but with clarity from both people that the nature of the relationship is professional rather being one of friendship.

Reading

Coan JA , Schaefer HS and Davidson RJ (2006) Lending a hand: social regulation of the neural response to threat, Psychological Science.

Astell A J and Ellis M P (2006), The social function of imitation in severe dementia, Infant and Child Development, 15, 311-319.

Capioppo J and Patrick W (2009), Loneliness: Human nature and the need for social connection, WW Norton and Co.

Mind (2009), Abuse by health and social care workers, www.mind.org.uk, accessed October 2009.

Steve Kiekopf (2007), Protect and thrive, Talking Sense, Spring 2007, Sense.

Witness (2009), What is professional abuse?, Safe Boundaries, accessed November 2009.

© SJ Butler 2009