Carers and the Health Service: Recognise, Listen and Respect
A Berry1, G Harper2, D Seddon2, C Robinson2, WY Cheung1
Universities of Bangor2 & Swansea1
National Carers’ Strategy aims to:
• Empower carers • improve support • be responsive to their needs. • Focuses on - respecting carers’ expertise & working with carers for benefit of care-recipient.
Carers as statistics
• Approximately 5.7 million carers in the UK 3.3K females, 2.4K males. • Carers UK estimate the value of the care they provide to be £57.4 billion p/a.
Methodology
• 10 Focus Groups
• chosen from 20 research sites across England
• 95 carers (18 male and 77 female)
Groups included carers for people with:
• mental health problems
• dementia
• Parkinson’s disease • terminal illnesses • parent carers for children with disabilities • learning disabilities
• 3 groups comprised BEM carers.
The 95 carers
• cared for a total of 101 people with a broad range of health and social care needs, many requiring very
high levels of support with daily living.
How
• Data elicited through asking open questions:
• „What are your experiences of being a carer?‟ • „What makes life easier?‟ • „How do you get a break?‟ • „What do you do when you get fed up?‟
• This enabled carers to contribute their views freely and to share or contribute different perspectives of experience.
Recording of focus group data
• Contemporaneous record made - comments were illustrated on a large wallpaper display. Individuals could thus see their views being recorded. • Verbal summary at end checked the accuracy of record & our understanding. • Summary was audio recorded & subsequently transcribed.
Recording of focus group data
Analysis
• Wallpaper displays, notes and audio summaries.
• Themes:
– How carers’ see health professionals. – What it is like to be a carer. – How carers feel we can best support them
Through carers’ eyes:
• “..they don‟t realise what you have to cope with; they don‟t understand..” • “There‟s no consideration for carers.”
What is it like…..?
• “It means a loss of hopes and aspirations for things you wanted in life.” • “It‟s very hard work; it‟s like a twenty four seven shift without a break or a prison sentence with no time off for good behaviour.” • “I‟m tired, so tired. I can‟t find words….” • “You become so involved in caring …..you lose your own identity…....”
The logistics
• “It‟s difficult to plan things any more.”
• “…live on schedules..”
• “...outings require military planning.” • “...he gets angry at the way he has changed. You not only have to cope with the loss of your own ambitions but their loss as well.” • It‟s lonely, ... can‟t talk anymore. I sit down and think who can I phone?”
Loss and gain
• “…you can become quite isolated, I‟ve lost my friends: they seem embarrassed…..” • and family: “…don‟t do poorly..”
• “Despite all the worries and problems, I wouldn‟t trade it for the world; I‟ve enjoyed caring for my daughter.”
• “There’s a lot of frustration, tension, worry and guilt”
Emotional tightrope
• “..tiredness leads to anger..”
• “I lash out, I can‟t cope with new things, especially good things because I‟m always waiting for the bad to follow.”
• “….what will happen….?” • “I want to care to the end but I‟m frightened… Will I be able to cope?” • “I don‟t want six more years of this.”
Relationships and roles
• “You lose the person you knew and loved and get somebody else.”
• “It changes your relationship, you are no longer a wife, you become a nurse.”
• “It causes family pressures…..constant tension through being pulled….”
Help?
• “With services, you have to get to a position of not being able to cope before they will help you; its sad there has to be a crisis.” • “..you can‟t get help early, before things go wrong.” • “The thing is we are all different and we need help to suit our different situations. Helping should be focused on individuals………..we want things that take account of what helps us survive.”
Health services
• “If you ask them they‟ll mostly try to be more helpful but they just don’t think how they can respond in a more organised and positive way to start with.” • “[they] don‟t direct you to the places that will help…… they’re not proactive in referring you to services.”
• “and the district nurse won’t visit.”
Perceived need
• “ Professionals don‟t think they are needed..”
– We don‟t appreciate the carers‟ position. We under value our potential contribution.
Fighting
• “….I had to fight with the health service and negotiate strongly in order to cope when they sent him home.”
• “People who complain about services get sidelined, even when they‟ve won.” • “they don‟t like people being assertive and standing up for themselves.” • “We….are seen as trouble makers..”
Carers would like:
• Practical advice and guidance about caring e.g. lifting, dealing with changes in behaviour, medication. • Background information on the condition, to facilitate understanding, inform decision making and anticipate future difficulties. • Proactive professionals who signpost to other services & who ask: “How are you?” “Are you managing?”