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Providing dignified care requires leadership

  • 7 Comments

My father, who has lived independently for many years - and, indeed, was walking 10 miles a week until recently - suddenly had a series of health issues and, within four months, had become a frail elderly man who was confused, wanting help, and fighting against what was happening to him.

It rapidly became clear that this previously very independent individual could no longer live at home and needed to be supported within a specialist dementia unit.

As an only child and my father’s next of kin, I have been alongside him from the moment he was admitted to hospital.

I have watched how older people have been cared for in two hospitals and a nursing home. My observations have led me to identify implications for leaders in ensuring the dignity of older people.

‘We are expecting older people to go through a major life change and seem to be forgetting that a major life change cannot be accommodated quickly’

There are some fantastic, caring people who will go the extra mile, regardless of how busy they are. Donna, Roger and Peter, who I came across in two hospitals, stood out - every time they dealt with my father, they showed real respect for him as an individual. They had amazing communication skills that recognised his needs and why he was becoming agitated and frustrated. At all times, they strove to maintain his dignity, even though he was not always aware of the undignified position he was putting himself in. They showed great understanding of older people and what is important to them from a dignity perspective.

My father, despite his memory loss, still remembers Roger who, for three days, gave him a bath and made sure he came out of the bathroom with dignity, dressed, shaven and looking cared for. He talks about Peter who helped him with all sorts of activities of daily living.

Donna, as a ward manager, was a great role model because not only did she run a well organised ward but also she spent time delivering care, showing great sensitivity and compassion. She focused those energies on my father and took time to understand where I was coming from and what a difficult situation it was to have a relative many miles away in hospital.

I cannot criticise the care my father received in either hospital. He was treated with dignity and respect, and had his food and medication on time (when he was prepared to take it). However, I can see it would be very easy for older or vulnerable people to be lost in big, busy wards.

It is very difficult to navigate through the system of discharge from hospital into a nursing home. Having worked in the health service for many years, I thought I understood how the system worked. There was plenty of information and lots of people willing to help - but how all the bits joined together was quite baffling and it took me weeks to get to grips with the different aspects of finding a care home, funding rules, what benefits are available, how to get a council tax rebate and how to sort out pensions. The list goes on and on.

I eventually worked my way through the system and now my colleagues ask me for advice about how it works. A simple route map for individuals who need to move from hospital into a care home is needed.

Taking these observations into consideration, I concluded that there are four implications for leadership.

First, we need to make sure ward routines allow sufficient time for older people to do what they have to do in a dignified way. We need to be aware of the vulnerable individuals in wards who need that little bit of extra time and can’t be rushed with their activities of daily living.

Second, we need to focus on discharge planning and understand the very complex pathways and routes from leaving a hospital to going back home or into a nursing home.

Third, we often talk about delayed transfers of care. Yet, when we think how quickly people’s lives change, we are expecting massive change for these older people in a very short period of time.

My own father went from being fully independent and self caring to needing to go into a specialist dementia unit within four months. He felt he was being moved very quickly through the system and wanted me to ask if he could have another two months in hospital before he went to a nursing home because he felt it was all too quick. He had already been in hospital longer than needed. I felt very guilty about having to say no and arrange a move into a suitable placement as quickly as possible.

We need to be mindful that we are expecting older people to go through a major life change and seem to be forgetting that a major life change cannot be accommodated quickly.

My fourth message is that we need to be very careful around language, particularly around delayed transfers of care, or about people with dementia. I am becoming increasingly sensitive to language because my father is somebody who has dementia, and was a delayed transfer of care. Words like “bed blockers” or “some loopy old man” are completely unacceptable.

I even wonder if the term “delayed transfer of care” is appropriate because we are talking about people, not widgets. We need to humanise our language around older people and consider how we refer to those whose discharge is delayed and who have conditions that are life changing.

Julie Burgess is chief executive officer for Heatherwood and Wexham Park Hospitals Foundation Trust

  • 7 Comments

Readers' comments (7)

  • George Kuchanny

    This is a subject that is not close to my primary focus of prevention of iatrogenic injury in an acute setting. In less dense terms making our Intensive Care Units safer. It does however, take on a health care subject that needs to be addressed. I have heard literally thousands of cases where elder care has been inappropriate and has simply produced an expensive (for the taxpayer) and humiliating slide (for the patient) into a dire state. The whole experience also does nothing at all for the carer. A no win costly situation. Thank you for examining this ever growing problem Julie. Humanitarian carers and robust 'patient first' management are just two pf the requirements needed for better outcomes. Dignity for patients and an improved experience for carers.

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  • So as CEO what are you going to do? Just writing about your experience will not do?
    In hospital management, meaning at the top you as a leader, are only worried about budget and bed management. Now you see that you need to get rid of all the layers of pen pushers and get more nurses and care aides to care for patients. I have read and reread your writing but I have not seen any mention of matrons who have revolutionized nursing care by becoming another layer of management and eating away the budget. Instead of preaching, practice the above and set an example. With a new government in power and a former nurse as junior minister I am sure you will find sympathetic ears.

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  • Sometimes elderly people are forced into care homes, when they do not want to go. It is possible for the elderly to remain in their homes and have a package of care that is suitable for their needs.

    This is something my elderly aunt (87) who has alzheimers has in place. She is insistant she does not want to go into a nursing home, she lives alone and has carers coming in 5 times a day. Of cource family also help out, taking her shopping and outings etc. The first choice does not necessarily have to be a nursing home.

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  • Unfortunately the pressure on acute beds in most Trusts just does not allow for this kind of care. Even without the constant push for discharges our hands are tied - we would love to provide the level of individualised attention but do not have the numbers of nurses or health care assistants. All the fancy talk of targets and such like will never change basic facts - there are not enough beds or nurses doing the hands on care. An awful lot of money is wasted pretending otherwise.

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  • recent experinces with family members in hopspital has highlighted both the good and bad aspects of elderly care for myself and my family, the good, the nursing care despite the nurses being overworked and having a very mixed caseload of patients, the time spent with my 86 yrs old father-in law, who unlike the julies father has a very quick and active mind, but has also a short history of being very independent to being fully dependent within a matter of weeks.

    the bad, in one word communication! 8 weeks in hopsital and only through conatcting Pals were the hopsital able to rearrange a dermotolgy appt ( booked for 6 weeks in advanced) while the expereinced sever puritis and was so ripping his skin to peices, despite asking for appropriate treatment to be told that he had to wait for the derm review. again today he is having futher invesigations into the bowel issues that brough him into the hopsital again only after conatcting Pals has this been arranged, although we were told by the consultant it was arranged 7 weeks ago ( no record of it being booked ). the issues go on and on but as i said its the nurses who have worked so hard getting on with his care whilst trying to be his advocate and support that have been the light in a very dark area of our experiences with local health care.

    Lesley Hough

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  • I too have watched my mother, who had dementia, going in and out of hospital, for urinary infections or a fall. I ask that their capability not be judged as they appear in hospital. My mother would be coping at home, or latterly in a care home, but once in hospital would go down hill badly. She would then be treated as if this was how she always was and left as a non responding demented old lady. Please listen to those who know them well.

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  • How long has Julie Burgess worked in healthcare management?
    She concluded that there are 4 implications for leadership, by observing the needs of and resources for a close relative.


    It is the responsibility of Chief Executive Officers to undestand how the system works without having to experience it personally as a carer. It is also their responsibility to establish a seamless service and make all patients' pathways as smooth as possible. The majority of patients do not have CEO in their family to advocate for them.

    If it took Julie weeks to figure out how to process this basic and important journey, how can the average person be expected to negotiate the disjointed mess created by our overpopulated management bureacracy?

    Apart from acting as a consultant for her colleagues (is this really part of the CEO role?), and telling us what we already know, what is she going to do about it?

    It is not my intention to be critical. Julie has highlighted one of the many issues that frontline staff encounter on a daily basis. Do we have to wait for senior managers to experience difficulties on a personal basis before they fully comprehend the implications?

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