Care and compassion?

This report tells the stories of ten people over the age of 65, from all walks of life and from across England. In their letters to my Office, their families and friends described them variously as loving partners, parents and grandparents. Many of them were people with energy and vitality, active in their retirement and well known and liked within their communities. Some were creative, while others took pride in their appearance and in keeping fit. One enjoyed literature and crosswords and another was writing a book.

One woman told us how her father kept busy, despite recurring health problems: ‘My dad really enjoyed his work as a joiner. Even after he retired he still did that kind of work, usually for me and my siblings. We used to ask: “Dad can you do this, Dad can you do that?” and he always would’. Another relative described her aunt to us: ‘She was very adventurous and very widely travelled. She even took herself off, at the age of 81, to Disneyworld in Florida’.

These were individuals who put up with difficult circumstances and didn’t like to make a fuss. Like all of us, they wanted to be cared for properly and, at the end of their lives, to die peacefully and with dignity. What they have in common is their experience of suffering unnecessary pain, indignity and distress while in the care of the NHS. Poor care or badly managed medication contributed to their deteriorating health, as they were transformed from alert and able individuals to people who were dehydrated, malnourished or unable to communicate. As one relative told us: ‘Our dad was not treated as a capable man in ill health, but as someone whom staff could not have cared less whether he lived or died’.

These stories, the results of investigations concluded by my Office in 2009 and 2010, are not easy to read. They illuminate the gulf between the principles and values of the NHS Constitution and the felt reality of being an older person in the care of the NHS in England. The investigations reveal an attitude – both personal and institutional – which fails to recognise the humanity and individuality of the people concerned and to respond to them with sensitivity, compassion and professionalism. The reasonable expectation that an older person or their family may have of dignified, pain-free end of life care, in clean surroundings in hospital is not being fulfilled. Instead, these accounts present a picture of NHS provision that is failing to meet even the most basic standards of care.

These are not exceptional or isolated cases. Of nearly 9,000 properly made complaints to my Office about the NHS in the last year, 18 per cent were about the care of older people. We accepted 226 cases for investigation, more than twice as many as for all other age groups put together. In a further 51 cases we resolved complaints directly without the need for a full investigation. The issues highlighted in these stories — dignity, healthcare associated infection, nutrition, discharge from hospital and personal care — featured significantly more often in complaints about the care of older people.

These complaints come from a population of health service users that is ageing. There are now 1.7 million more people over the age of 65 than there were 25 years ago and the number of people aged 85 and over has doubled in the same period. By 2034, 23 per cent of the population is projected to be over 65. As life expectancy increases, so does the likelihood of more years spent in ill health, with women having on average 11 years and men 6.7 years of poor health. Nearly 700,000 people in the UK suffer from dementia, and the Alzheimer’s Society predicts that this figure will increase to 940,000 by 2021 and 1.7 million by 2051. The NHS will need to spend increasing amounts of time and resource caring for people with multiple and complex issues, disabilities and long‐term conditions and offering palliative care to people at the end of their lives.

The nature of the failings identified by my investigations suggests that extra resource alone will not help the NHS to fulfil its own standards of care. There are very many skilled staff within the NHS who provide a compassionate and considerate service to their patients. Yet the cases I see confirm that this is not universal. Instead, the actions of individual staff described here add up to an ignominious failure to look beyond a patient’s clinical condition and respond to the social and emotional needs of the individual and their family. The difficulties encountered by the service users and their relatives were not solely a result of illness, but arose from the dismissive attitude of staff, a disregard for process and procedure and an apparent indifference to deplorable standards of care.

Sadly, of the ten people featured, nine died during the events described here, or soon afterwards. The circumstances of their deaths have added to the distress of their families and friends, many of whom continue to live with anger and regret.

Such circumstances should never have arisen. There are many codes of conduct and clinical guidelines that detail the way the NHS and its staff should work. The essence of such standards is captured in the opening words of the NHS Constitution: ‘The NHS touches our lives at times of basic human need, when care and compassion are what matter most’. Adopted in England in 2009, the Constitution goes on to set out the expectations we are all entitled to have of the NHS. Its principles include a commitment to respect the human rights of those it serves; to provide high-quality care that is safe, effective and focused on patient experience, to reflect the needs and preferences of patients and their families and to involve and consult them about care and treatment. Users of NHS services should be treated with respect, dignity and compassion.

It is against these standards and my own Ombudsman’s Principles that I have judged the experiences presented here. I also expect the NHS to take account of the principles of human rights – fairness, respect, equality, dignity and autonomy – that are reflected in the NHS Constitution. Some of the events recounted in this report took place before the NHS Constitution came into effect, but this does not excuse a dismissive response to pain, distress or anxiety or a failure to take account of patients’ needs and choices.

When an NHS user complains to my Office, having failed to resolve their complaint locally, we first seek to establish what should have happened and then to investigate what did take place. We consider whether the shortcomings between what should have happened and what did happen amount to maladministration or service failure. In each of the accounts included here, a complaint was first made to the NHS body or trust concerned. Not only did those who complained to me experience the anguish of the situations described, but throughout the NHS complaints process their concerns were not satisfactorily addressed.

The first priority for anyone with illness is high‐quality effective medical treatment, available quickly when needed. The outcome should be a return to health or as near as possible. If illness is terminal, the priority should be palliative care, with adequate relief of both pain and anxiety. This is not always easy or straightforward. Often, older people have multiple and complex needs that require an understanding of the interaction between a variety of different medical conditions to ensure that one is not addressed in ignorance or at the neglect of others. A person’s physical illness may be compounded by a difficulty with communication or by dementia. Inattention to the suffering of older people is characteristic of the stories in this report. Inadequate medication or pain relief that is administered late or not at all, leaves patients needlessly distressed and vulnerable.

Alongside medical treatment, effort should be put into establishing a relationship with the individual that ensures their needs will be heard and responded to. Where older people are not able to take part in decisions about their care and treatment, families or carers must be involved. Above all, care for older people should be shaped not just by their illness, but by the wider context of their lives and relationships. Instead, our investigations reveal a bewildering disregard of the needs and wishes of patients and their families. One family, whose story is recounted here, suffered very great distress when the gravity of their loved one’s condition was not communicated to them properly or appropriately, and his life support was later turned off against their express wishes.

The theme of poor communication and thoughtless action extends to discharge arrangements, which can be shambolic and ill-prepared, with older people being moved without their family’s knowledge or consent. Clothing and other possessions are often mislaid along the way. One 82‐year‐old woman recalled how, on being discharged from hospital after minor surgery, she was frightened and unsure of how to get home. She asked the nurse to phone her daughter. ‘He told me this was not his job’, she said.

It is incomprehensible that the Ombudsman needs to hold the NHS to account for the most fundamental aspects of care: clean and comfortable surroundings, assistance with eating if needed, drinking water available and the ability to call someone who will respond. Yet as the accounts in this report show, these most basic of human needs are too often neglected, particularly when the individual concerned is confused, or finds it difficult to communicate.

Half the people featured in this report did not consume adequate food or water during their time in hospital. I continue to receive complaints in which, almost incidentally, I hear of food removed uneaten and drinks or call bells placed out of reach. Arrangements such as protected meal times, intended to ensure a focus on nutrition and that nurses have time to support those who need assistance with eating, have been distorted. Carers or members of the family who might wish to help the patient eat and drink are not permitted to do so, and help with eating is not forthcoming from nursing staff.

Older people are left in soiled or dirty clothes and are not washed or bathed. One woman told us that her aunt was taken on a long journey to a care home by ambulance. She arrived strapped to a stretcher and soaked with urine, dressed in unfamiliar clothing held up by paper clips, accompanied by bags of dirty laundry, much of which was not her own. Underlying such acts of carelessness and neglect is a casual indifference to the dignity and welfare of older patients. That this should happen anywhere must cause concern; that it should take place in a setting intended to deliver care is indefensible.

As Health Service Ombudsman, I have sought to remedy the injustice experienced by the people whose complaints are set out in this report. There is no adequate redress for the distress or anguish at the death of a loved one, but my recommendations to trusts often require them to apologise and prepare action plans addressing the failings that have been identified. My intervention can also lead to financial remedy where appropriate. But financial resource alone will not ensure such circumstances are not repeated. An impetus towards real and urgent change, including listening to older people, taking account of feedback from families and learning from mistakes is needed. I have yet to see convincing evidence of a widespread shift in attitude towards older people across the NHS that will turn the commitments in the NHS Constitution into tangible reality.

I am grateful to all the people who have given permission for their stories, and those of their loved ones, to be told here. These often harrowing accounts should cause every member of NHS staff who reads this report to pause and ask themselves if any of their patients could suffer in the same way. I know from my caseload that in many cases the answer must be ‘yes’. The NHS must close the gap between the promise of care and compassion outlined in its Constitution and the injustice that many older people experience. Every member of staff, no matter what their job, has a role to play in making the commitments of the Constitution a felt reality for patients. For the sake of all the people featured here, and for all of us who need NHS care now and may do so in the future, I hope that this will be their legacy.