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Anne-Marie Glasby – Senior Development Officer, Changing Our Lives

Whilst scrolling through Twitter some time ago I came across the following:

Saddest thing today was realising that the wonderful man who runs the fishery knew and understood more about Beth and how she gets anxious than the vast majority of staff in the horrific ATUs.

He’s given her a pool to herself so she doesn’t become anxious around others… He spoke of how he recognised how seeing Beth in the beautiful surroundings, just doing her own thing and loving life makes her happy and relaxed.  Beth’s been to his fishery about 15 times and he knows so much about her… (@JeremyH09406697 18/06/2020)

It got me thinking: how well do staff know the people they support?  Obviously there are as many answers to this as there are staff, but let’s ignore for now (whilst celebrating) all the fantastic staff who truly know and understand the people they support.  As one manager once said to me, of a woman she supported “I think she would have been something in fashion, a buyer or a designer – she’s got such an eye for colour and style”.  This woman did not use words to communicate, had had numerous labels attached to her throughout her life and was supported by a service that would definitely be described as being for people who are “extremely complex” and yet this was such a striking insight into what the woman was like and what made her tick.

Let’s concentrate instead on those who, when you ask about the person they support, tell you “he’s really difficult” or “really challenging” or (a personal favourite) “so complex”.  Or those who have worked with someone for 25 years, but when you ask what the person likes, all they can give you is “music”, “food” and “going for a walk”.  Any follow up questions as to the type of music are either met with “anything” or “the radio” (neither of which are names of bands, although admittedly my music knowledge isn’t bang up to date!)  Further questions about the walk, such as “does he like it when you push the wheelchair fast or when it’s windy, or cold and crispy?”, are met with a blank stare or a raised eyebrow that suggest “why on earth are you asking that?  We don’t go out if it’s wet/cold/windy (and as if people with learning disabilities are allergic to weather!)”

In our experience these staff have often worked with people for many years.  Their managers will tell us “they know X so well – they’ve worked with them for years!”  During practice development sessions with these staff we ask them to describe their best friend or a family member.  Then we ask them to describe someone they work with.  The difference is so stark.  They find it hard to see beyond someone’s support needs or their most basic likes and dislikes.   Why is it they know so little about someone… or do they?  I suspect the answer to this again depends on the staff member, but also on how we go about trying to get the information.

A couple of years ago I was doing some planning work with someone who was supported by a staff team like this – let’s call him Eaton.  The staff only appeared to be able to answer questions about Eaton in the most basic way, despite working with him for close to twenty years.  After a particularly frustrating morning, I asked if Eaton had any photographs.  A member of staff disappeared and came back with a jumbled pile of different sizes of photographs.  They had been taken at various events at the hospital over the last couple of decades and stored on a shelf in his wardrobe.  As I looked through them with Eaton and his staff, the staff started to reminisce.  They told stories about the parties and events.  At first these were confined to stories about what was captured in the photographs but as the afternoon progressed, so too did the stories and slowly Eaton emerged – not Eaton who liked generic “music”, “food” and/or “walks”, but Eaton who was always last on the dance floor, who was never happier than when dancing with a good-looking woman, Eaton who  liked to play jokes on staff and had a slapstick sense of humour, Eaton who cared so much about his friend that he refused to go to a party when his friend was ill and had to stay in.

The American writer Patrick Rothfuss said “it’s like everyone tells a story about themselves inside their own head.  Always.  All the time.  That story makes you what you are.  We build ourselves out of that story”.  Whilst I absolutely believe that staff should be curious about the people they work with, try to really connect with them and truly understand what makes them tick, I also think that – as outsiders coming in, trying to learn about people and gather information – we would sometimes do better to leave our questions at the door and instead, listen to people’s stories.  Yes, staff should know the people they support better – but sometimes they might know more than we realise, but we don’t engage with them in a way which allows this to come out.