Westminster Hall
Thursday 13 March 2008
[Ann Winterton in the Chair]
Older People’s Rights (Health Care)
[Relevant documents: Eighteenth Report from the Joint Committee on Human Rights Session 2006-07 HC 378 and the Government’s Response Session 2007-08 HC 72]
Motion made, and Question proposed, That the sitting be now adjourned.—[Siobhain McDonagh.]
2.30 pm
Mr. Andrew Dismore (Hendon) (Lab): As Chair of the Joint Committee on Human Rights, I am grateful to have the opportunity to introduce the debate on our report on older people in health care,.
It is sometimes argued—by politicians who should know better, and by the tabloid press—that human rights exist only to protect unpopular minority groups in society such as criminals, suspected terrorists and asylum seekers. Human rights, they proclaim, are nothing to do with ordinary people, but that argument is a travesty of the truth.
Human rights apply to us all. They are not just for those people on the fringes of society for whom public sympathy is low or non-existent. Vulnerable people in the mainstream are in real need of the protection of human rights law. For example, older people in hospitals and residential care homes, the subject of our report, need such protection.
There is a growing recognition among pensioners that human rights are vital to their well-being. That explains the enormous outcry over the consequences of the YL case, to which I shall refer later, as its outcome has deprived older people of protection in private and voluntary-sector care homes. My Committee’s work rightly embraces the universality of human rights by examining and reporting on popular and unpopular causes alike. To illustrate that universality of human rights, we could not have chosen a better example than the one that we are debating this afternoon.
The numbers of older people—inevitably the main users of the NHS—are growing. Some 80 per cent. of NHS resources and 80 per cent. of staff time are devoted to the over-65s. Two thirds of general and acute hospital beds are occupied by people aged 65 and over but, as the British Institute of Human Rights has made clear, the human rights of older people are particularly invisible in society. So we decided to bring the human rights of older people in health care into the political spotlight and, by illuminating the respect—or lack of it—for those rights, to make their cause visible to all. Victimisation or neglect of older people in health care raises any number of serious human rights issues.
We heard about, and saw, a lot of good practice, and our visit to Edgware hospital in my constituency is an example of that. In care homes, we met staff with low status and poor pay who were really committed to looking after the people in their charge. However, although 79 per cent. of care homes meet the minimum standards, that means that 21 per cent. do not.
Depressingly, but not surprisingly, we received an overwhelming volume of evidence about the problems that exist from staff working for the various inspectorates, service providers and non-governmental organisations. We were told about malnutrition and dehydration; abuse and rough treatment; lack of privacy in mixed sex wards; lack of dignity and respect for confidentiality; neglect, carelessness and poor hygiene; inappropriate medication and use of physical restraint; inadequate assessment of a person's needs; too hasty a discharge from hospital; bullying, patronising and infantilising attitudes towards older people; age discrimination; communication difficulties; fear of making complaints, and eviction from care homes. All those things are human rights issues that can infringe the European convention on human rights and the Human Rights Act 1998.
Abuse of the elderly can be psychological, physical, financial or sexual. According to Age Concern, half a million people in the UK suffer abuse. Some 23 per cent. of reports to Action on Elder Abuse’s helpline relate to abuse in care homes, and 5 per cent. to abuse in hospitals. In our view, elder abuse is a serious and severe human rights issue. It is perpetrated on vulnerable older people who often depend for their care on the very people who abuse them.
Elder abuse is not just a betrayal of trust—it can also amount to a criminal offence. We heard of an 80-year-old lady who was sexually assaulted, yet no action was taken. Criminality is downgraded by being classed as abuse. We also identified that as a problem in our recent report on the human rights of adults with learning disabilities. If a person is the victim of a serious crime, that crime should be treated as such and not trivialised because of the vulnerability of the victim.
I turn now to neglect and carelessness. The Committee heard examples of death arising from poor hygiene, and about problems with personal care, such as people being left in their own waste. We heard of one patient who asked for a urine bottle for one and a half hours, only for his relatives to be told, “It doesn’t matter if he wets the bed, we’ll change the sheets.” Where is the dignity there?
Patients were moved for non-clinical reasons, sometimes at night. Older people’s spectacles, false teeth or hearing aids were thoughtlessly left out of their reach by staff. Patients were left for hours in reception without food or drink as they waited to be taken home or to another hospital. At Edgware hospital, we met an old lady and her daughter-in-law. The old lady had been discharged there from Barnet hospital, in whose discharge lounge she had been left for most of the day—in her night clothes, with her belongings in her lap in a clear plastic bag but without refreshment.
Medical problems are not addressed until they become critical. We were told of an 89-year-old who was admitted to hospital from her care home with pressure sores and dehydration, because the care home said that it was “not our job” to deal with such matters.
A number of witnesses raised concerns about malnutrition and dehydration. In 2006, the Healthcare Commission found that 20 per cent. of adult in-patients needed help with their meals, but that nearly 40 per cent. of those never, or only sometimes, received help. That led to uneaten meals being taken away from patients who needed help to eat them. In one case, that happened
because it was not clear whether it was the job of the nurse or the care assistant to help.
However, we heard examples of good practice too, such as the use of red trays for patients who need assistance. I recently heard about a volunteer scheme at the Royal Free hospital, where volunteers help with what can be a time intensive and difficult job.
The Committee was told about the inappropriate use of medication, especially in care homes. Neuroleptic sedatives were used to keep difficult patients with dementia quiet, even though those drugs are not licensed for that purpose. We heard about a general practitioner who, without first examining her, prescribed sleeping pills to a care home resident with mild dementia to prevent her from disturbing staff at night.
The lack of privacy, dignity and confidentiality is a serious problem that has a significant detrimental impact on older people in health care. A number of witnesses spoke about mixed-sex wards. Not all of them opposed the continued use of such wards, but everyone raised serious concerns about privacy. Witnesses complained about sensitive medical advice being given to a patient on the ward within earshot of other patients, and about staff having conversations among themselves while attending to patients’ intimate care needs—in other words, just talking over the people in their charge.
The delayed discharge regulations were mentioned by a number of witnesses. In principle, it is important to ensure that patients do not stay longer in hospital than necessary. However, 16 per cent. of over-75s are readmitted within 28 days, compared with only 10 per cent. of those aged 16 to 75, which prompts the question about whether decisions to discharge are made prematurely. In one case, the wife of a patient died: his son wanted to attend his mother’s funeral, but the hospital decided to discharge his father on the same day.
Moving into care can be a life-changing event for many old people. They may have lived in their own home, with or without social services support, up to their hospital admission. Changing from an independent environment to one of dependency can be unsettling and traumatic. We were told that, in practice, older people have little or no choice on discharge. They are put into placements that do not meet their needs, or where adequate care is not in place. They are sometimes discharged to care homes instead of their own home, where they would be able to live with appropriate support. Other elderly people are discharged into care, miles from friends or family.
We were told that the Department of Health guidance that says that no one should be discharged direct from an acute hospital bed to a care home was routinely ignored. We recommended that the delayed discharge regulations should be amended to allow for more flexibility in applying the time period within which patients must be discharged. We also called for guidance to be given to hospitals and local authorities to help them respect the rights of patients under article 8 of the European convention on human rights.
The Government set out their view of how the regulations could and should work to safeguard respect for patients’ rights. The Minister expressed surprise at the evidence that we received showing that the regulations were not
working well in practice. The Government need to do more to show that the delayed discharge regulations work as well in practice as the Department thinks that they work in theory. We have reported that, in practice, the regulations can compromise the human rights of older people in the ways that I have described.
The Government’s response so far has been complacent. I hope that the Minister will reassure us today by saying that he will look at how the regulations are working in practice and will reconsider issuing guidance to ensure that patients’ rights are respected when they are discharged.
So why do these problems happen? There is a real power imbalance: on one hand, we have frail, sick, elderly, vulnerable people and, on the other, a big and unresponsive bureaucracy. Both patients and providers have an extremely low awareness of a patient’s rights. It is not just a matter of providing a proper, professional service for the patient; it is also the patient’s enforceable human right to receive such a service.
Older people can be very stoical, and they are often reluctant to make a fuss and complain. They may say, “I am old, what can I expect? I am grateful for what they are doing.” Such expressions exemplify their approach to life. Low expectations are, in effect, internalised ageism. They are compounded by the fact that some of the most elderly people remember the time before the NHS was founded, when there was no affordable medical care.
Human rights are seen as a matter only for a health trust’s legal department. They are a regulatory burden: they require boxes to be ticked yet have nothing to do with the reform of service delivery. The failure to protect and respect the human rights of older people in health care is a deep-rooted cultural problem in the system.
We also received evidence of both direct and indirect discrimination on the grounds of age. Direct discrimination is less common than in the past, but it has not vanished. Age Concern gave us some examples, among them the fact that invitations to breast screening stop for women over 70. In addition, doctors are less likely to refer angina sufferers to see a specialist or to have tests if they are over 65.
The Committee heard about one GP being called too late to see a care home resident whose health had deteriorated suddenly. Earlier access to a GP would not have been denied to a younger, non-dependent person, as that person would be able to arrange an appointment at an earlier and personally convenient time.
Dr. Evan Harris (Oxford, West and Abingdon) (LD): I endorse the concerns that the hon. Gentleman has expressed about the second two cases. I think that he will remember that we made a recommendation about breast screening age. When one is dealing with a screening procedure for a defined population, it can be legitimate to identify those people for whom routine calls for screening will not be cost effective. The people I am talking about are the ones who are still able to opt into the screening for themselves, in a cost-effective way. I know that the hon. Gentleman understands that there is an important distinction to be made between the first of the examples that he gave and the other two, which are not acceptable.
Mr. Dismore: I hear what the hon. Gentleman says, and I think that that came out in the evidence.
Returning to the point, more subtle forms of discrimination are still endemic. The NHS’s national director for older people’s services told us that there are still
“deep-rooted, negative attitudes and behaviour towards older people”
in the NHS. Examples include making decisions on whether to refer or to treat people on the basis of those
“deep-seated underlying attitudes and beliefs about older people.”
For example, elderly people are less likely to be offered “talking therapy” for mental health problems. Financial arrangements can also discriminate against older people. We were told that local authorities frequently have lower budgets for their teams dealing with older people than for those dealing with younger people.
We are not convinced that the existing legislation does enough to protect and promote the rights of older people in health care. In addition to our recommendations relating to the Human Rights Act 1998, which I will come on to shortly, we made two recommendations to address that problem. We called for a positive duty to be placed on the providers of health and residential care to promote equality for older people. We also recommended that the current prohibition on age discrimination in the workplace should be extended to the provision of goods, facilities and services so that it would include health care, among other things. The Government told us that they would consider the suggestion in the context of the review of discrimination law. Perhaps the Minister can tell us what his view is, and also say what progress is being made.
What do human rights offer beyond what should be good practice, common sense, and good old fashioned manners? That was considered by one of the Lords on our Committee when we started looking at the issue. The NHS is good at curing, but what about caring in the wider sense of the word? Human rights are based on dignity, respect, equality and fairness. We can all agree that those concepts are particularly relevant to vulnerable groups, such as older people in health care. The Human Rights Act is best seen as a tool that can and should be used in law, policy and practice to ensure that those social justice goals are achieved. It is a lever to help drive up improvements in service. It is not merely that there a duty on the NHS and its staff to provide services properly; the patient has an enforceable right to receive such services, too. The Human Rights Act can help put patients, and not finance systems or staff, at the heart of the NHS.
The organisation Action on Elder Abuse told us:
“Debates in both the health and social care sector have ignored the Human Rights Act and have instead been focused upon costs, rather than quality of care provision. We are addressing a ‘mass production’ approach toward older people, rather than a ‘quality approach’”.
By giving legal force to concepts such as dignity, respect, equality and fairness, the Human Rights Act empowers patients and carers to demand better quality treatment. Patients in vulnerable circumstances can be powerless in the face of unresponsive systems. The Act also empowers individual members of staff and their teams to improve the ways in which they work. The Royal College of Nursing told us that human rights
“legitimise speaking out when things are not right.”
The human rights legislation gives nurses and care workers ammunition to pressurise management to change bad practice or improve resources because the rights of their patients are being infringed. Of course, good quality patient-focused treatment is to be found in parts of the NHS, but best practice is not universal throughout the service. The Human Rights Act provides a framework to encourage best practice in health care and, because it has the force of law, it also acts as a backstop to ensure that a positive approach to respecting the human rights of patients becomes the norm.
We have all seen the signs that say, “Our staff are entitled to be treated with dignity and respect,” or “We will prosecute those who assault or abuse our staff.” Where are the ones that say, “You, the patient and the relatives, are entitled to dignity and respect. We will take action against those who assault or abuse you”? I have yet to see them myself.
In practice, it is important to look at how the Human Rights Act can work. The British Institute of Human Rights, with the Department of Health and five NHS trusts, has completed a pilot programme to demonstrate how a human rights approach can be mainstreamed in the NHS. For example, upholding human rights is one of the strategic objectives of the Mersey Care NHS Trust, which is participating in the pilot, and there is board-level leadership on the issue. We were told:
“People have traditionally had things done to them rather than being actively involved. Now that service users and carers are involved...they say it makes a difference for them, they feel valued, they have interesting things to do.”
Users and carers also say that involvement makes a difference to staff attitudes, clinical practice and the kinds of services that are provided.
The pilot programme provides welcome evidence of the kind of institutional respect for human rights for which we have long been calling. It integrates not just the elderly, but other vulnerable people, such as adults with learning disabilities and those at risk of discrimination on the grounds of race and gender. However, such practice is the exception rather than the rule. In 2003, the Audit Commission found that 60 per cent. of health bodies had not yet adopted a strategy for human rights from the Human Rights Act. We have seen no evidence that the position has improved. Will my hon. Friend the Minister bring us up to date on the BIHR pilot? When does he expect to evaluate its impact? We would certainly like to see the human rights approach piloted by that project implemented across the health care sector. We hope that the Minister supports that, and will explain how it is going to be developed.
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