Considering the lives of the people we support

Thank you to Hannah Crawford (@slthannah) for producing our first ever 'Viewpoints' feature:

I started to think about what I was going to write soon after the New Year and more recently having been at the UK Swallow Research Group in this month I've been thinking about how important it is to consider the lives of the people we support.

Holidays, and in particular Christmas, are often challenging times for patients and their loved ones alike. It is very easy to forget about what the time will be like for them, when we leave the office for our own annual celebrations.

Two cases in particular made me think about this (all names used are pseudonyms):

Case number one is Matthew who is 43. He lives in a staffed house with four friends, but visits his parents regularly. He has moderate learning disabilities and is able to use some limited single words to communicate. He has lived with dysphagia for many years but as he has got older the impact of his dysphagia has become more significant.

In September, after several hospitalisations with pneumonia, he had a PEG fitted in what was decided to be his best interests. Matthew was poorly with sepsis after his PEG placement and took several weeks to recover. Once he had recovered I visited him while he was at home with his parents and started a discussion about a tasters programme.

As soon as his Mum realised that I was talking about Matthew having things to eat, her face lit up and she said "oh thank goodness for that". I was surprised because we had discussed tasters as part of the PEG discussion, but now I wonder if she had not been able to take this information in when Matthew was very poorly.

When I explained to her that we would start Matthew on a programme of foods that he liked, for pleasure, she was delighted and confided in me that "Christmas was back on". She explained that once Matthew had had his PEG fitted they had decided that they wouldn't be having a Christmas dinner because they believed he couldn't participate in it.

Case number two are Mum, Charlotte and her son, Jack. Jack has profound and multiple disabilities and I worked with them both as part of my research.

Charlotte described how difficult Christmas day is for her. She talked about how Jack enjoys many things about Christmas and the run up to it. He can enjoy the music and the smells and is able to sense the atmosphere and excitement that develops in the weeks before Christmas. But Christmas day is very difficult.

Because the focus of the day is Christmas dinner, and Jack can't eat the dinner other than a small amount which is pureed, Charlotte does not enjoy the day. She describes the day as 'heartbreaking'. She gives him a small amount at lunchtime, but her own sadness often means she does not feel able to eat and enjoy the meal. She told me that often she ends up just eating cold turkey and chips at the end of the day.

We spend a lot of time with our patients and we try to observe them in the range of environments they eat in, and eating as wide a range of foods as is appropriate. However, festive meal times which are often exclusively a time for family and friends to eat together and celebrate, we often don't have access to.

When I think about festive meal times it is clear that they are a time where the medical framework that often rules our patients lives, collides with the social world in which they live, and it is seems never more apparent how at odds they may be.

Matthew's case made me realise that while we might not be there to observe meals such as Christmas dinner, to do so would seem the ultimate intrusion of the medical world, we need to consider how our recommendations may impact on the social worlds of our patients and their families.

We need to ask about the impact of our recommendations on their social worlds. We need to talk to them about what is important in their lives and think about how we can ensure that we support them flexibly so that they can enjoy life, balancing physical eating and drinking skills with health and quality of life.

In short, we need to use our evidence based clinical skills and experience to work with our patients and their families to come to the right set of person-centred recommendations for them.

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