The researchers from the University of Birmingham’s Health Services Management Centre found that too often older people were excluded from decisions and carers in particular felt undervalued by statutory providers. This is despite patient and carer involvement being a central aim of current NHS reforms, championed by the phrase “Nothing about me, without me”.
Unique elements of the study:
- 22 older people, including people with dementia as, acted as ‘co-researchers’ on the study, working in partnership with academics on the design, conduct and analysis of the research
- The research explored the views and experiences of 4 different groups of older people, including older people with dementia and older people from minority ethnic backgrounds
- The research team and co-researchers have been working with service providers and commissioners in the four case study sites to implement the recommendations and improve local services.
Older people told researchers that they wanted to be seen as a human being with needs and feelings, not just as a problem to be solved. However, many people felt that they were not always treated with dignity and respect, which is regarded as the foundation for good care. The problems highlighted included:
- A lack of information about the services on offer
- Difficulties getting a clear diagnosis of dementia
- Patients not being kept informed about important developments in their care
- Very little advance notification and preparation for discharge from hospital
- Unreliable home and social care arrangements .
Despite these problems, the researchers also heard about services and professionals that provided personalised, compassionate and proactive care. One participant described herself as “proud and patriotic” after receiving a service designed to support patients and their families to make the transition from hospital back home.
The national study was carried out between November 2008 and October 2011 in four case study sites in England, allowing the research team to examine the experiences of four very different groups.
- Older people with dementia
- Older people from minority ethnic backgrounds
- Older people living in rural areas
- Older people living in a younger city
The study was funded by the National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) programme. The researchers took the unique approach of working with 22 older people, including a number with dementia as ‘co-researchers’. These co-researchers were involved in designing, carrying out and analysing the research alongside University academics. Academics and co-researchers interviewed a total of 75 older people about their recent experience of care transitions. Participants included both patients and carers.
The research revealed a range of issues common to all the groups that they regarded as crucial to good care:
Feeling orientated in a ‘foreign land’
The research showed that transitions are a common, and often a permanent, feature of older people’s lives. Participants’ experiences of transition were frequently accompanied by a sense of disorientation. While professionals could help to ease this sense of disorientation with clear communication and sharing of information, this didn’t always happen, leaving older people anxious about what was happening to them and what the future held.
Being recognised and valued as a person
Common to all of the groups of older people was a wish for services to recognise and value them as a person. The research showed that too often older people were not involved in decisions about their care, and older carers in particular felt undervalued and excluded by support services and health professionals.
Importance of family, friends and community
Family, friends and neighbours played a huge role in helping participants to live independently at home and participate in social activities, in so doing reducing the risk of loneliness and isolation that older people can experience. This was not always taken into account by those planning care.
Services not taking a planned and proactive approach
Transitions are unsettling experiences for older people because they create change and uncertainty. Aside from isolated examples, the research found little evidence of health and social care services taking a planned and proactive approach to the care and support of older people. Far more common were experiences of stumbling across services, having to seek them out, or even in some cases needing to ‘fight’ for them.
Jo Ellins who led the research explains: “Our findings demonstrate major shortcomings in services for older people in making the difficult transitions between health and social care. Whilst getting this right is not an easy thing to do, given the complexity of individuals’ needs one of the most striking findings was that even the smallest gestures by providers to connect with somebody as an human being – such as a smile or a hug – could make a significant difference to their sense of dignity and their experience overall.
One of the reasons we wanted to engage older people and their carers as co-researchers was to get honest and frank accounts of what those experiences are truly like.”
Joan talks about her experience of being admitted into hospital
“I was taken up to a ward, but nobody told me what was going on, what was happening and why I was there. I kept asking questions, but I got fobbed off with ‘Oh I’ll get the sisters to come and talk to you or mention it to the houseman when she comes round’. Which I did and again got fobbed off…things were plonked on my locker with a ‘take these’, I’d no idea what they were.”
Susan, a carer, talks about how she is treated by statutory services
“And woe betide you if you question anything because they’ll say ‘And who are you?’ ‘Well apart from next of kin or daughter or whatever, I’m actually the carer.’ ‘Professionally?’ they said to me one day. In other words ‘Are you on the £7.50 an hour or whatever they get paid?’ No, we’re the £53 a week brigade, that’s what we get paid! But we’re not qualified enough to question. That’s how it comes across with medical staff and yet we know more than the people in the agencies because we’ve lived with the illness.”
Philip shares his frustration that information giving so often just means sending out a leaflet
“People phone you up, and ‘Oh, let me send you another package’. And I say ‘Look, there’s only so many hours in a day that you can read all these bloody leaflets, all this paperwork on dementia and Alzheimer’s’. You know, you get heart and soul sick of it. That’s why I said to the girl the other day, ‘Look, just don’t send me any more packages.”
Alice illustrates a lack of dignity while on a hospital ward
“One night I wanted to wee and I was ringing for the commode and when I couldn’t get the commode, I had to pull a bath towel and fold it up and shove it between my legs so that it would absorb it and I thought I don’t feel good about this.”
Notes to Editors
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).
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