Adrift in foreign land: Study highlights failings when older people transferred between health and social care services

September 20, 2012

A major study of the experiences of older people moving between health and care services published today highlights significant problems in the quality of the service they received. 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 , including people with as, acted as 'co-researchers' on the study, working in partnership with 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 and commissioners in the four   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 , 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 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 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
  • 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."

Explore further: Family first—caring within UK Bangladeshi and Pakistani communities

Related Stories

Family first—caring within UK Bangladeshi and Pakistani communities

June 18, 2012
Over the next 20 years the proportion of older people living within the Bangladeshi and Pakistani communities in the UK will increase significantly. Most expect that their immediate family, particularly female family members, ...

Under 16s make up less than one percent of NHS patient surveys

September 20, 2011
Children under 16 make up less than 1% of participants in national NHS patient surveys, finds research published online in the Archives of Disease in Childhood.

Dignity counts when caring for older people

February 3, 2012
Older people feel that their health problems pose a challenge to their sense of independence, dignity and identity and sometimes the health care they are given makes things worse.

Social isolation and low self-esteem linked to elder abuse, say case workers

May 1, 2012
Report: Social isolation and low self-esteem linked to elder abuse, say case workers

Recommended for you

Across Asia, liver cancer is linked to herbal remedies: study

October 18, 2017
Researchers have uncovered widespread evidence of a link between traditional Chinese herbal remedies and liver cancer across Asia, a study said Wednesday.

Eating better throughout adult years improves physical fitness in old age, suggests study

October 18, 2017
People who have a healthier diet throughout their adult lives are more likely to be stronger and fitter in older age than those who don't, according to a new study led by the University of Southampton.

Global calcium consumption appears low, especially in Asia

October 18, 2017
Daily calcium intake among adults appears to vary quite widely around the world in distinct regional patterns, according to a new systematic review of research data ahead of World Osteoporosis Day on Friday, Oct. 20.

New study: Nearly half of US medical care comes from emergency rooms

October 17, 2017
Nearly half of all US medical care is delivered by emergency departments, according to a new study by researchers at the University of Maryland School of Medicine (UMSOM). And in recent years, the percentage of care delivered ...

Experts devise plan to slash unnecessary medical testing

October 17, 2017
Researchers at top hospitals in the U.S. and Canada have developed an ambitious plan to eliminate unnecessary medical testing, with the goal of reducing medical bills while improving patient outcomes, safety and satisfaction.

No evidence that widely marketed technique to treat leaky bladder/prolapse works

October 16, 2017
There is no scientific evidence that a workout widely marketed to manage the symptoms of a leaky bladder and/or womb prolapse actually works, conclude experts in an editorial published online in the British Journal of Sports ...

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.