Straight Talk
Julia Jones • Co-founder • John’s Campaign

Julia Jones, Founder of John’s Campaign takes a look at the importance of involving family in care settings and how this can be achieved.

When John’s Campaign announced it would be accepting ‘Carers Welcome’ pledges from the residential sector as well as from hospitals, Andrea Sutcliffe, the then Chief Inspector of Adult Social Care in England, was quick to express her support, saying, ‘Good homes don’t just concentrate on the person living in the home, but also on the people who matter to them. The best homes welcome family and friends, value their insights and treat their feedback as the gifts to inspire improvement that they are…we want to see an open and inclusive culture and a key aspect of that is for residents to be able to be surrounded by the people they love when they want to be.’ Professor Martin Green of Care England added, ‘There is really good evidence that people who maintain their relationships have much greater wellbeing, and better quality of life.’

Perhaps this is so obvious that it doesn’t need saying. Yet, if it’s true, we need to look harder at the inequalities between people who remain supported by a network of external relationships throughout their life in residential care and those whose friends or family say goodbye in the reception area and are not seen again until the funeral. It may be tempting to attribute these instances of abandonment to the individuals involved – we don’t know the inner history of other people’s past lives and relationships – but a more constructive approach might be to consider whether an institution can create its own culture of family involvement.

Look again at Andrea Sutcliffe’s language: the best homes ‘welcome’ and ‘value’ families and friends, treat their feedback as ‘gifts’, are ‘inspired’ by them. These words represent positive actions; things that can be done by managers and staff. But this isn’t just an exercise to keep the regulators happy, such homes are surely the places which we would choose for ourselves and our own families.

Hospitals which have adopted the principle of welcome and partnership with family carers have co-incidentally found a range of additional benefits in areas such as safeguarding, reduction in the use of anti-psychotic medications, improved nutrition and hydration and fewer complaints. These win-win outcomes could also apply in social care.

The primary focus of John’s Campaign has been on welcoming the families of people who are living with dementia. However, a recent presentation from Romaine Lawson of Apple House Care outlined how establishing a ‘family-friendly’ ethos and offering strategies for relationship support and development could be transformative in homes for younger adults with learning disabilities.

Participants of the presentation discussed the idea that a well-managed admission to residential care could help salvage close relationships that had been damaged by the stress of physical caring and the hurt of distressed behaviour. An admission which has successfully included families from the outset also offers a better chance that they will be positively involved at the end of the person’s life. There are many reasons why friends and family fail to visit – or become progressively more reluctant. It’s upsetting. They don’t feel needed. It’s boring.

Reflective conversations at admission time can be very helpful. Instead of telling family carers what activities your organisation provides, ask them what they and their relative like to do together. Listen to their answers, then discuss how they can manage this within the new environment. Don’t offer to take over anything they can continue for themselves. The family carer may be at crisis point, stressed and exhausted. They may simultaneously yearn for help and feel guilty accepting it. Discover what have become the intolerable aspects and reassure them that you will be taking responsibility for these. But do all you can to remind them of the areas in which they are expert and irreplaceable.

Most people like to feel useful. ‘What would you like to continue to do for your mother?’ is a good question. The answer may be ‘Nothing. You’re getting paid to look after her now.’ Or it could be helping with hair and nails, helping at lunchtime, being there for her at sun-downing time. You can do more than accept these offers; you can explain how these will contribute to her overall care. You can express your gratitude.

Family carers’ distress needs understanding and comfort; not just at the beginning and end of their relative’s time with you but throughout. Some hospitals have introduced carer-awareness training to develop staff members’ confidence and skill providing this. Some care homes offer access to targeted support such as intervention by Admiral Nurses. Peer support can be particularly effective and as your culture of welcome develops you may notice your family visitors begin sharing each other’s troubles. Then you can congratulate yourself.

Julia Jones is Co-founder of John’s Campaign and author of Honoured Guests, freely downloadable from the Care England or John’s Campaign websites. Email: julia@johnscampaign.org.uk Twitter: @JohnCampaign

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