Dying in hospital and the Liverpool Care Pathway

There has been a great deal of press interest recently in the Liverpool Care Pathway for the dying patient (LCP). It has been described in more colourful language, which I will return to later, but I should start out by explaining what it is – and just as importantly what it isn’t.

The LCP was developed in the late 1990s by a hospital in Liverpool and a local Marie Curie hospice. The aim was to bring high-quality hospice care for cancer patients to hospital settings. Later, this was expanded to non-cancer patients and has been adopted by a large number of hospitals throughout the NHS and other countries.

Why was (and is) this necessary? Modern hospice care emerged in the 1960s out of a desire to improve the experience of dying for terminally-ill patients. Hospitals are traditionally very good at delivering curative care, but do less well at caring for people whose greatest need is to be as pain-free and as comfortable as possible, and to have the reassurance that their families are supported to prepare and come to terms with a loved-one passing away.

The reality today is that the majority of people are in hospital when they die.  Though the circumstances may vary – for example they may have been recently admitted as an emergency, or they were being treated for an illness that they may not recover from – past reports have shown that poor experiences can be very similar.

Continue reading “Dying in hospital and the Liverpool Care Pathway”

Action event on improving dignity in care for older people

Today Age UK along with the NHS Confederation and LGA is hosting an action event on improving dignity in care for older people.   The day will give practitioners, commissioners and service representatives from across the health and social care sector a chance to get further involved in ensuring the delivery of dignified care.

The action event is following on from the Commission on improving dignity in care for older people in hospitals and care homes – the final report can be viewed here.

Discussions today will help us to ensure that the long-term action plan we are developing with our partners at the NHS Confederation and the Local Government Association is informed by those commissioning, providing or receiving care.  This plan will focus on working with our members and partners across health and social care to support delivery of the Commission’s recommendations.

The event will include a keynote speech from Sally Brearley, Chair of the Nursing and Care Quality Forum in the Department of Health. There will also be an overview of the Commission’s recommendations on improving dignity for older people in hospitals and care homes, this will provide opportunities to comment on how the Commissioners believe these now can be implemented. Continue reading “Action event on improving dignity in care for older people”

Guest Blog: Using online reviews to choose care homes

This guest blog was contributed by Lisa Trigg, Research Officer at LSE Health and Social Care, at the London School of Economics and Political Science.

Last year, an Office of Fair Trading report highlighted the lack of information support for older people looking for care homes, and the recent Delivering Dignity report draws attention to the opportunity to help them with providing resident feedback on the internet. Last week’s White Paper, “Caring for our future: reforming care and support”, also included an announcement that the Department of Health will work with organisations to develop comparison websites for social care.

The Social Care Institute for Excellence (SCIE) recently identified over 30 websites dedicated to various listings and information on social care providers. Many of them provide links to the Care Quality Commission’s inspection reports, and some new sites, for example Good Care Guide, enable service users and their carers to post feedback on care homes. This function will also be available on SCIE’s own site Find Me Good Care, which launches later this summer. In addition, the Government recently awarded £160,000 to Patient Opinion, a publisher of online patient reviews on health care, to include reviews on social care providers.

TripAdvisor was set up in 2000 and contains over 60 million reviews on travel-related services such as hotels and restaurants. The idea of searching for feedback on the quality of products and services is increasingly common in service and goods industries. A website where people seeking care could go and access a range of opinions on care providers seems like a strikingly obvious service to provide.

However, Patient Opinion recently encountered a number of challenges when they introduced a pilot with two care home providers. A major problem arose due to the difficulty of protecting the anonymity of users. Care homes have far fewer residents than hotels have guests, so it could be easy for staff to figure out who posted negative reviews of a care home.

It is important for the identity of a frail, vulnerable resident of a care home to be protected to avoid the risk of poor care or even abuse. This also applies to care home staff. Hoteliers and restaurant owners have been subject to a range of personal accusations on TripAdvisor, ranging from racism to alleged assault and theft.

Patient Opinion also highlights the difficulties of motivating people to post reviews. Ratings websites like TripAdvisor are based on generating the ‘wisdom of crowds’. For care homes, this would mean that if enough people posted reviews, the average review would eventually give an accurate reflection of what the care home is really like.

However, many residents may not be able to post their own feedback, whether this is because of a lack of access or a lack of experience with using the internet, or because of the high proportion of residents who are living with dementia. For relatives and carers meanwhile, there is the concern about the knock-on effects if they post a poor review.

From a more practical perspective, residents are likely to live in residential care for many months or even years. For hotels and restaurants, customers will stay for as little as one night or one meal. This means there are enough customers experiencing the service to generate significantly more reviews. Even then, the number of reviews can be in stark contrast to the number of users. One study worked out that for the most popular Harry Potter book, only one in 1,300 purchasers posted a review on Amazon.

Despite all this, it’s important to recognise that people will increasingly look to the internet for information on care home quality. What people really want is to be able to find out what it’s really like to live in a particular care home.

The opportunity then is to harness resources and technology to manage the information process. For example, how can we capture larger amounts of feedback from residents, relatives and employees? And then how do we combine this with the views of organisations such as the CQC, local authorities or Age UK and present it to the public in a careful and sensitive way? Or alternatively, how can we use technology to put people in touch with each other when what they really need is to talk to someone like themselves who has experience of the home?

The focus needs to be on identifying the support and information people really need, and then developing creative ways of providing it.

Watch a video blog about the challenges of delivering care in care homes 

Read our latest social care reform briefing 

Guest Blog: Dignity in Care – so have we any solutions?

This guest blog was contributed by Brendan McCormack, Professor of Nursing Research from the University of Ulster, Northern Ireland and a trustee of Age UK.  

The Commission on Dignity in Care is well into its programme of work.  As the Chair of the ‘Academic Reference Group’ I had the pleasure of being in attendance for one of the ‘oral evidence’ sessions, which had a primary focus on evidence-based tools and processes that would help ensure dignity in care.

I take away some impressions that are largely positive but which also raise some challenges to the way forward.  The evidence presented highlights reasons why we need to be focusing on dignity (even if many of us regret that we are still needing to do this given the developments that have happened over many years of service improvement work).   Some reflections from me on the evidence are presented here.

Firstly, throughout the day, a number of new models that are influencing the way care cultures in hospital and LTC facilities are developing and being transformed, locate themselves within models of relationships.  The most significant of these is that of ‘relationship-centred care’ which is sometimes presented as an advancement of person-centred care.  Some of the problems with this claim relate to the way in which person-centred care is defined, particularly when the dominant discourse of person-centred care as being about individual choice, autonomy and rights.  At the level of values and principles, relationships are only 1 key component of personhood and person-centredness.  However they are not the only part and thus relationships have to be placed alongside other characteristics of personhood, such as – space, place, aspects of ‘self’, existential time and issues associated with human rights and dignity.  However, irrespective of these conceptual issues and challenges, we can never deny the importance of relationships in all of our lives. 

The second issue relates to the importance of interdependent relationships.  The idea of seeing care relationships as interdependent is hugely important and reinforces my own position (adapted from the philosopher Margaret Meade), i.e. ‘that I as a nurse can learn as much from a patient/resident as a patient/resident can learn from me’.  The idea of interdependence raises significant and important considerations about multiprofessional working that seemed to come in and out of conversations today.  We all accept that the only way that the cultures of care settings can change is through a concerted multiprofessional effort.  Thus the challenges associated with enshrining dignity in all our work is not just a nursing issue.  It is my view that the Royal Colleges, National Associations and Unions can take a significant and lead role in ensuring that all professionals see this as a priority.

Thirdly I believe we need to stop saying that we ‘can’t measure dignity’ – because we can.  But to do so requires creativity and embracing of evaluation methodologies that are not the common parlance of health service managers nor indeed the majority of health service researchers.  A pluralistic approach to measurement and evaluation is needed – approaches that integrate staff and service user voice with survey data as well as observations of practice.  Additionally, we need to be more open to proxy measures of dignity and embrace them as key indicators of a complex phenomenon. 

Finally, I believe the evidence presented made it strikingly clear that one cannot think about having dignified care for patients/residents if staff feel demoralised, put upon, not valued and disenfranchised.  The need to develop ‘nudges’ to changes practice that are locally developed, owned by practitioners and embedded into the everydayness of practice is paramount.  The holders of a workplace culture are the staff set within a macro culture of regulation, policy and economics and so we ignore the need to develop effective workplace cultures at our peril.

So yes, I believe we do have solutions that are informed by international evidence, are locally grown and are shown to be effective.  What we need now are levers for change that ensure that executive leaders cannot ignore these solutions whilst they are lured by quick-wins and short-termism.

Find out more about the Dignity in Care Commission

Read the Terms of Reference for the Commission




Time to find a cure for this old age-old problem

When the Care Quality Commission reported this week that a lack of “kindness and compassion” is leading to the inadequate treatment of the elderly in half of all hospitals, it was shocking – but not surprising. For years, older people have been forced to endure undignified and complacent care in the NHS.

Last year, we at Age UK produced a report called Still Hungry to be Heard, which highlighted the continuing problems with malnutrition, and prompted the CQC to carry out these latest inspections. Earlier this year, the Parliamentary and Health Service Ombudsman found – while describing more appalling cases of neglect – that more than twice as many complaints about the treatment of the elderly warranted closer investigation when compared with other age groups. In our social care system, it is acceptable for an older person to be put to bed while children’s TV is still on the air, because it is the only time when a carer is available for the necessary 15 minutes. This does not reflect a society in which older people are treated with respect or dignity, but one in which they are kept at the fringes of the community.

When it comes to the health service, how is it that an organisation with a £100 billion budget is failing to provide basic standards of care? Part of the answer lies with how the NHS is organised. Over the past decade, a huge amount of extra money has been poured into the health service, much of it tied to the drive to get waiting lists down to a maximum of 18 weeks. Reaching that target was a significant achievement – but in the process, hospitals were encouraged to move people through the system as quickly as possible. The result is that patients came to be seen as conditions or procedures to be processed, rather than people.

While this approach may be acceptable when dealing with someone who has a single, simple disease or injury, it is hardly appropriate for a frail, elderly person with multiple long-term conditions. The knock-on effect is that an older person using a hospital bed can be seen as a “wasted admission”, surplus to the hospital’s “real” work.

The fact that such older people are all too often ignored or patronised not only points to a failure in attitude, but also calls into question the ability of health professionals to assess their needs appropriately. It may also explain why so-called geriatric wards often receive less resources than others – even though the term is now a misnomer, since most wards are likely to contain a large proportion, if not a majority, of older people. After all, the elderly are now the largest users of NHS services, making up two thirds of the total. And that proportion is increasing: the number of stays in hospital by people over 75 has grown by 66 per cent since 1999/2000, more than twice as fast as for those aged between 15 and 59.

Despite this, the prejudice within the health service can be deep-rooted. You don’t have to look far to find examples of doctors and nurses, just emerged from training, who seem surprised to find themselves having to look after older people. Surveys of trainee doctors have shown that they hold geriatric care in poor regard: many actively avoid it, with the best and brightest preferring to move into more “glamorous” areas, such as A&E.

The cloud that hangs over this whole issue is the continuing negative attitude towards older people in society as a whole. If they are not valued outside hospital, how can we realistically expect them to be valued inside it? How many headlines have we read recently that complain about the “tsunami” of an ageing society, rather than celebrating the fact that people are living longer?

When it comes to the NHS, the health service is going through a period of massive change. Will these reforms improve the care of older people? In reaching an answer, the Government must undertake a full and comprehensive review of how the NHS can meet their needs.

Certainly, much more needs to be done to focus the minds of hospital managers. For example, we have been calling for mandatory publication of malnutrition rates, so that people can discover where the problems are occurring, rather than waiting for the Care Quality Commission to make an inspection. This isn’t a silver bullet, but it will certainly move the issue up the agenda at hospital board meetings.

The NHS must also work with patients and the public when deciding where to deliver services, and to find out where problems are occurring. Well before charities or quangos got involved, older people knew precisely which hospitals were delivering poor care to their friends and neighbours – but they didn’t know what to do with the information. The NHS must do more to seek out such feedback and make changes. And where care continues to be poor, there must beconsequences: it shouldn’t take a Mid-Staffordshire-type inquiry to drag incompetence out of the shadows.

Finally, the NHS must do more to support its staff. If doctors and nurses are under too much pressure, it is the patients who suffer.

Worryingly, the health service has the highest level of work-related sickness in the country, with many nurses being put in a position in which they cannot deliver the care they want to.

The NHS is there for everyone – but this week’s report shows yet again that it continues to perform poorly for older people. It is time to move beyond diagnosing the problem, and start looking at how to solve it.

Find out more about our Hungry to be Heard campaign


Age UK launches Dignity in Care Partnership

Looking back over the years, there has been no shortage of reports, inquiries and commissions examining instances where older people have failed to receive proper dignity of care. The Health Ombudsman report earlier this year, for example, provided a catalogue of appalling examples of  patients who had their basic needs neglected, becoming malnourished and dehydrated, being left in pain, or receiving inadequate assistance with toileting and personal care.  This report made the severity and scale of the problem we are facing crystal clear.

But what has, we believe, been missing up to now is an indepth look at how we as a sector make the changes to ensure that no older person in future needs to endure degrading or undignified care. The  new Dignity in Care Partnership, launching today at Age UK’s Improving Essential Care in Hospital event is about moving on to the next stage and working out what we need to do as a sector to make progress on this problem at a grassroots level.  This initiative brings together the NHS Confederation, Local Government Group and Age UK to work in close collaboration with professionals and healthcare leaders to improve dignity in care.

We know policy at a national level, such as the National Service Framework and guidance from the Royal Colleges, has clearly focused on meeting aspirations of older people, improving the care provided and generally moving things in the right direction.  Yet this guidance is not always consistently transferred into practice on the ground and we need to know why.

To do this, we must ask some difficult questions and shine a light into awkward corners of this thorny issue. What are the root cases of the failure to provide appropriate levels of care to older people? We also need to hear what, as the largest group of users of the health service, are the aspirations of older people and their families in terms of care provided.

The Dignity in Care Partnership is starting out by establishing a commission to examine some of these issues. However, we are clear that this is just a first step. After answers we need action.

I cannot pretend this will be an easy process: we need an honest, warts and all approach if this process is to be effective.  But it isn’t about pointing the finger at the health and care sector, health professionals or individuals. Instead, to deliver real and lasting improvements,  it is vitally important that everyone comes together to discuss how to address practical problems, tackle barriers and change the way we view caring for older people. Patients, professionals and providers must reach a consensus on the underpinning causes of poor care and ‘own’ responsibility for improving their experiences at every level. We also need to establish what really works by identifying good practice examples across the health and social care system.

Everyone can play their part: we are calling for written evidence via the NHS Confederation website and will also be carrying out a series of oral hearings to collectively develop a series of recommendations to be published in a report in Spring 2012.  Another report it may be, but I believe it has the capacity to start the journey towards making dignity in care a reality for every older person.