Joint Committee On Human Rights Eighteenth Report


2  Treatment of older people in hospitals and care homes

    "The home always looked attractive with flowers and pictures in the foyer but this masked the quality of the care."[5]

9. The care of the elderly, frail and sick can be immensely demanding both physically and mentally. At the outset of our Report we pay tribute to the many private individuals and professional staff who do this with dedication, setting high challenges and standards for the rest of us. They deserve the full support of society as a whole, not least in ensuring that the necessary resources are available. Our Report is highly critical of where in institutional care things go wrong. We seek to point no fingers of blame. Our analysis and recommendations, although sometimes hard hitting, are made in the hope that they will help to strengthen best performance. As we explain, a recognition of the significance of human rights is a vital way of underpinning that performance. We emphasise that ensuring the dignity and self-respect of the vulnerable, which is central to the fulfilment of human rights, is a task for us all.

10. In this Chapter, we set out the evidence we received of the quality of treatment that older people receive in hospitals and residential care homes.

Scale of the problem

11. During the course of our inquiry, we received a considerable volume of evidence about the quality of treatment that older people receive in hospitals and residential care homes. We have heard examples of both good and bad practice. Witnesses stressed that some older people received an excellent service in hospitals and residential care. Comments included

And

    We do not see systematic problems across the whole of the NHS. In fact, what we see is a lot of very, very caring activity going on. There are patches of problems and when those come to light they really are a betrayal of values so that you do need the reserve for when that happens.[7]

And

    We will always in our society hear the bad news, the bad stories, the evidence of bad practice and often will not hear about some fantastic practice that takes place. There is far more good practice than there is bad.[8]

12. However, many witnesses, including the inspectorates, providers and organisations supporting older people, expressed concern about continuing poor treatment of older people in healthcare. Their principal concerns related to:

  • Malnutrition and dehydration (Articles 2, 3 and 8 ECHR)
  • Abuse[9] and rough treatment (Articles 3 and 8)
  • Lack of privacy in mixed sex wards (Article 8)
  • Lack of dignity especially for personal care needs (Article 8)
  • Insufficient attention paid to confidentiality (Article 8)
  • Neglect, carelessness and poor hygiene (Articles 3 and 8)
  • Inappropriate medication and use of physical restraint (Article 8)
  • Inadequate assessment of a person's needs (Articles 2, 3 and 8)
  • Too hasty discharge from hospital (Article 8)
  • Bullying, patronising, and infantilising attitudes towards older people (Articles 3 and 8)
  • Discriminatory treatment of patients and care home residents on grounds of age, disability and race (Article 14)
  • Communication difficulties, particularly for people with dementia or people who cannot speak English (Articles 8 and 14)
  • Fear among older people of making complaints (Article 8)
  • Eviction from care homes (Article 8).

13. Below we explore in more detail some of the recurring issues which emerged in our inquiry. Difficulties experienced by older people in making complaints are dealt with in Chapter 8. Many of the concerns are overlapping and inter-related. Whilst some of these issues may not appear, at first glance, to be obvious healthcare issues, all of the problems, in our view, seriously affect people's experiences of the overall care that they received in hospitals or care homes.

14. According to the Commission for Social Care Inspection (CSCI), since the introduction of the National Minimum Standards in 2002-03, the percentage of social care services meeting the standards for privacy and dignity has increased from 82% to 91%.[10] CSCI also reports that residential services for older people met 79% of the National Minimum Standards in 2006, compared with 59% in 2003.[11] Nevertheless, we note that this means that, more than three years after the standards were introduced, 21% of care homes are still failing to meet the minimum standards required of them.

15. The Department of Health, in its written evidence to our inquiry, does not explicitly acknowledge any of the problems identified by other witnesses, but instead focuses rather defensively on the financial investment made into the NHS and the many initiatives launched by government in relation to older people.[12] These include the Dignity in Care campaign[13] and, as recently announced by Ivan Lewis MP, the Minister for Care Services, a national action plan to tackle the issue of older people and nutrition which will be published in the summer.[14]

ELDER ABUSE

    "An 80 year old woman […] was seriously sexually assaulted by another resident in 2004. It was reported in the log book but no action taken [...] It was only reported to the resident's daughter in July 2005. She reported the matter to the police."[15]

16. According to Department of Health guidance, "Abuse is a violation of an individual's human and civil rights by any other person or persons".[16]

17. More particularly, elder abuse has been defined as, "A single or repeated act or lack of appropriate action occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person".[17]

18. According to Age Concern, 500,000 older people are subject to abuse at any one time in the UK, although not all of this abuse occurs in healthcare. Almost four-fifths of the abuse is perpetrated against people over the age of 70, and 16% affects people over 90.[18] Based on telephone calls to their helpline, Action on Elder Abuse identifies five categories of abuse: physical (19% of calls), psychological (34%), financial (20%), sexual (3%) and neglect (12%). It highlights the high number of allegations of multiple abuses (44% of callers report more than one type of abuse occurring simultaneously). The majority of abusers are related to their victim (46%).[19] The next highest category of abusers is paid workers (34%). Of the one third of abuse which is perpetrated by two or more people acting together, 62% is perpetrated by paid staff "that is, through abusive practices that are institutional and passed from one worker to another".[20] 23% of reports to the helpline concern care homes (where less than 5% of the older population live) and 5% concern hospital settings.[21]

19. Reporting on elder abuse in 2004, the House of Commons Health Committee found that abuse of older people was a hidden, and often ignored, problem in society, and was a violation of their human rights.[22] It concluded that, unlike child abuse, whose profile had been dramatically raised in the past few years, abuse of older people remained hidden. Witnesses to our inquiry agreed[23] and suggested that it was difficult to determine the scale of abuse due to under-reporting[24] and the lack of resources focused on the issue,[25] although some suggested that there was now greater awareness of elder abuse.[26]

20. In our view, elder abuse is a serious and severe human rights abuse which is perpetrated on vulnerable older people who often depend on their abusers to provide them with care. Not only is it a betrayal of trust, it would also, in certain circumstances, amount to a criminal offence.

NEGLECT OR CARELESSNESS
    "A lady of 89 had been in a care home for 18 months as a self-funder. She was taken to hospital with severe pressure sores and dehydration. The hospital criticised the quality of care she had been receiving and said that she should have been receiving nursing care. On discharge she returned to the care home and was placed in the nursing wing.

    When the lady's son asked staff in the residential section (where she had been living before) why she had been allowed to deteriorate prior to her admission to hospital, why the pressure sores and dehydration had been allowed to develop and why her needs had not been reassessed, they replied that it was not their job to do that and that the district nurse should have been informed and called upon to do it. They did not acknowledge that it should have been their responsibility (or at least the home's) to call her in if this was the case."[27]

21. Witnesses complained that older people in healthcare were sometimes neglected and that staff failed to show them appropriate and adequate care. Neglect is one aspect of elder abuse. By "carelessness", we mean treatment that is less severe than neglect, but which implies a lack of thought by staff about the effect of their actions on patients and residents. Examples of neglect or carelessness that we heard of included:

22. It is now a criminal offence for a person providing care to someone who lacks capacity to ill-treat or wilfully neglect them.[35] A similar offence, of longer standing, exists for anyone being treated for mental disorder in a hospital, mental nursing home, independent hospital or care home.[36]

DEHYDRATION AND MALNUTRITION

    "She grew very thin and it was obvious to visitors that, although she has always had an excellent appetite, she found great physical difficulty in feeding herself and using a cup. Visitors would have been only too willing to help her but they were discouraged from staying during meal times. She appeared to be slowly starving to death."[37]

    "A woman reported that her mother, Dorothy, who is 92 and suffers from dementia, was admitted to hospital but not given the help she needed to eat. On many occasions Dorothy's food was left untouched on her bedside table and taken away at the end of mealtimes by the catering staff. Her food also needed to be pureed but often this was not done."[38]

    "Often nurses firstly do not have the time to be able to do this type of work well, but I think we are also seeing no clear understanding of whose job it is. Typically, what a carer will report to us is 'I asked the nurse if she would be able to help my mother with eating her dinner' and she said, 'Ah, no, that is really the job of a care assistant, find a care assistant'."[39]

23. A number of witnesses expressed concern about malnutrition and dehydration of older people in healthcare.[40] In 2006, Age Concern reported that 60% of older people in hospital were at risk of malnourishment or of their situation getting worse during their hospital stay.[41] Hospital meals may be taken away before patients can eat them and insufficient help is given with eating and drinking. On occasion this can lead to preventable deaths.[42] The same year, the Healthcare Commission published a survey of 80,000 adult inpatients. Of those needing help to eat meals—a fifth of those surveyed—almost 40% said that they either never (18%) or only sometimes (21%) received help. On 7 March 2007, the Healthcare Commission announced that it would be investigating and reporting on dignity in the care of older people in hospitals. [43]

24. The Minister accepted that there was a problem of malnutrition in some healthcare settings but stated:

    We talk sometimes about the way that nutrition is organised in hospitals we end up with the Daily Mail saying thousands of people are being starved in this country. They are not, but are we satisfied with the way that nutrition and people's access to food is dealt with in hospitals and care homes? Often we are not.[44]

25. Some good practice exists. For example, some organisations use red trays to identify patients who have difficulty eating without assistance.[45] Others ensure that meal times are not interrupted. These practices help to preserve the dignity of older people and are examples of positive steps that organisations can take to ensure that the rights of older people to life and not to suffer ill-treatment are protected.

MEDICATION

    "[The caller's] mother suffers from mild dementia and in recent months had tended to wake at night. At the new home, the staff who sleep in overnight did not like being disturbed during the night because, the manager said, they had day jobs elsewhere to go to during the day. She (the manager) said she had to pay them extra each time they had to get up. The manager suggested that the daughter would have to cover these extra costs.

    The home thought that sleeping medication might solve the problem of her wakefulness and the GP prescribed this without seeing the lady or her daughter."[46]

26. A number of witnesses expressed concern about the inappropriate use of medication on older people, including the over or under-use of medication and the use of medication as a means of controlling patients and residents. Action on Elder Abuse cited the misuse of medication as one type of abuse which frequently comes to its attention.[47] This is a particular issue in care homes.

27. Again, witnesses accepted that there was good practice in this area,[48] but that this was not universally implemented. Witnesses raised a particular issue of medication being inappropriately used to keep residents docile.[49] As the Alzheimer's Society's said:

    The response to aggression in dementia is often to prescribe powerful sedative neuroleptic drugs that can help to calm the person However, these treatments have very damaging side effects. Medications such Haliperidol, Risperidone and Olanzipine are being routinely prescribed to people with dementia in hospitals and care homes. A recent study found that 40% of people with dementia in care homes are being prescribed neuroleptic drugs.[50] Neuroleptics are not licensed for use in dementia care but have become a convenient staple as part of routine treatment, despite known evidence on the risks which such 'treatments' pose to quality of life and the increased risk of death.[51]

28. The concerns of witnesses accord with the findings of the Health Committee that medication was "in many cases, being used simply as a tool for the easier management of residents".[52] The National Service Framework for Older People requires that all people over 75 years should normally have their medicines reviewed at least annually and those taking four or more medicines should have a review every six months.[53] In 2006, Living Well in Later Life noted that "the management of medicines needs to be addressed, as many older people taking more than four medications are still not receiving a review every six months".[54] CSCI found that, in 2005-06, only 59% of care homes met the National Minimum Standard (Standard 9) for medication.[55] The Alzheimer's Society agreed that there is a very poor record of medication in care homes.[56]

LACK OF PRIVACY, DIGNITY AND CONFIDENTIALITY
    "I went to visit my husband on the first day and he is a very private person, he doesn't like anything to embarrass him and when I went in he was almost in tears which is not my husband. He said 'please, please go and get a bottle I am nearly wetting myself'. I rushed out I got a bottle and I said to him 'Well why didn't you just ring the nurse', in my innocence. 'I have for an hour and a half I've been asking for a bottle'. Well when I went out [and] told the nurse she said 'Oh don't worry we would have changed the sheets'. Now his dignity at that stage would have gone out of the window. There was no dignity." (Older person)[57]

    "[…] there are two reception desks side by side, two lines of patients having discussions about the nature of their medical condition. There cannot be confidentiality in that." (British Geriatrics Society)[58]

    "I don't know whether people get almost blasé about the fact that they are dealing with people in a vulnerable state all the time and they forget how that person may be feeling about it." (Physio assistant)[59]

    "I think that healthcare staff have become so required to focus on technology and targets that they have lost sight of the humanistic aspects of caring." (Royal College of Nursing)[60]

    "We have reached the stage where we value care far less than we value cure." (NHS Confederation)[61]

29. Witnesses told us of the lack of privacy, dignity and respect for confidentiality afforded to older people in hospitals and care homes. Examples included:

  • The continuing use of mixed sex wards.[62] Whilst some witnesses felt that there were advantages to mixed sex wards (such as companionship),[63] others noted the problems they raised for privacy, particularly when people were partially clothed or naked.[64]
  • Sensitive confidential medical advice being given to a patient on a ward, where other patients could overhear.[65]
  • Problems with personal care such as "neglect of proper hygiene care or continence care resulting in individuals left lying in their own urine or excrement",[66] people not being allowed to use the toilet in private[67] and care home residents being fed whilst on the commode.[68]
  • Healthcare staff having conversations between themselves, whilst attending to the intimate care needs of older people.[69]

30. Witnesses complained that some hospitals and care homes appeared to be planned around the staff rather than service users. For example "the elderly are not treated like individuals; they become just another part of the hospital or care home routine".[70] The rights of patients are affected by both clinical and non-clinical staff. We heard one example of an elderly woman who was being discharged from an acute to an intermediate care hospital who had to sit and wait for 5 hours in the non-medical discharge lounge without food or water.

31. In a public survey conducted by the Department of Health, respondents stated that one of the characteristics of ensuring that services provided for dignity in care was "respecting basic human rights, such as giving people privacy and encouraging independence".[71] The Minister told us that they were focussing on "the centrality of dignity and respect of older people in a variety of care settings, again both NHS and social care".[72] Recognising the right of older people to privacy, he noted that:

    Every individual has a different story, a different background, a different set of life experiences, a different set of fears maybe. None of us is the same, so the ability of the system or of staff to treat people in a very individualised or personalised way is something that is raised with us.[73]

32. The Healthcare Commission Core Standard C13(c) requires that providers of healthcare services "have systems in place to ensure that staff treat patient information confidentially, except where authorised by legislation to the contrary". However, Help the Aged commented that the duty to maintain confidentiality could pose risks for a patient or resident who did not have capacity:

    The issue of confidentiality is often misunderstood by health staff, particularly in relation to patients who lack the capacity to consent to disclosure of information, such as many dementia patients. As a result, the principle of confidentiality is applied in a very over-restrictive way (Articles 6 and 8) […] This is a practical problem for carers. We are concerned particularly with older carers, typically the spouse or partner of a person who has lost capacity. This can leave carers deprived of vital healthcare information, including information about effects of medication, which exposes both carer and cared for to unnecessary risks.[74]

HOSPITAL DISCHARGE

    "[…] the husband was in hospital, the wife had died, and the individual social worker was told that she had to get the son to go and visit a care home the following day, and he said he could not do that because he was attending his mother's funeral. The discharge went ahead on the day of this man's wife's funeral, which seems to me grotesque, grotesquely inhuman."[75]

33. Regulations made under the Community Care (Delayed Discharges etc) Act 2003 require social services to arrange a discharge placement within two working days of notification by the NHS Trust that an acute patient is clinically ready for discharge. If the patient cannot be discharged within this time, the local authority may be required to make payments to the NHS Trust.

34. The Department of Health informed us that it is committed to reducing the number of people whose discharge from hospital is delayed. Figures provided by the Department show that between September 2001 and December 2006:

—  The number of people over the age of 75 delayed in hospital reduced from 5,673 to 1,651, a reduction of 71%

—  Total delays for the same period were reduced from 7,065 to 2,190, a reduction of 69%.[76]

35. In 2006, Professor Ian Philp, National Director for Older People's Services, in his report on progress in implementing the National Service Framework for Older People noted, amongst other things, that "delayed discharge from acute hospitals has been reduced by more than two­thirds".[77] According to the Department of Health's own statistics, about 16% of patients over 75 years of age are re-admitted to hospitals within 28 days of discharge compared with about 10% of patients aged 16-74.[78]

36. Although witnesses saw the merit in ensuring that patients did not stay longer in hospital than was necessary,[79] a number of witnesses expressed real concern about the operation of the Delayed Discharge Regulations, particularly regarding the short timescale permitted to arrange a placement, and the implications that this had for an individual's right to respect for his private and family life. Witnesses told us that the application of the current Regulations leads to older people:

  • Having no choice on discharge.[80]
  • Being put into placements that do not meet their needs.[81]
  • Having no chance to come to terms with a momentous life changing event (i.e. the possible move for the first time from independent living to residential care).[82]
  • Being discharged to care homes instead of receiving rehabilitation[83] or returning to their homes with community support.[84]
  • Being discharged to care that is miles away from friends and family.[85]
  • Being discharged without adequate care in place or when they are still unwell.[86]

In addition, we were told that Department of Health guidance that no one should be discharged from an acute hospital bed directly to a care home was "routinely ignored" by people applying delayed discharge criteria.[87]

37. The British Geriatrics Society stated "what we do as geriatricians is to try and thwart some of the attempts to discharge people prematurely"[88] and "I do not have the words for how stupid and how wrong such a policy is".[89] Similarly, the Royal College of Nursing said "it is clearly harmful to discharge someone who is not ready to be discharged and to discharge them before services have been put in place. That is something that concerns us a lot".[90] Help the Aged were concerned that the Regulations currently "have the balance wrong"[91] and create a situation that is "so abusive of individual rights".[92]

38. We were pleased to hear the Minister's assurance that "nobody should be discharged from hospital without appropriate arrangements being put in place for their care"[93] and his acknowledgement that the operation of the Regulations could have human rights implications. However, although Department of Health guidance sets out a number of principles which it suggests should be applied, including that discharge should be "planned for at the earliest opportunity across the primary, hospital and social care services",[94] we are concerned that, for a number of reasons, this is simply not happening in practice. We are also concerned that the premature or inappropriate discharge of older people could lead to their readmission shortly afterwards.

39. When we asked the Minister about this, he stated that "there are lots of reasons and causes for readmission, a lot of which are absolutely nothing to do with the 48 hour part of the guidance".[95] However, he added:

    On the question of the data that has come to light on the readmissions, I do not think we would want to be defensive about it, we would want to be frank about it, and we need to go away, reflect on it, do more work on it, and if we find that this is an unintended consequence of policy then we ought to do something to address it. Personally, I would regret it if we were to move away from a system where we took the pressure away, as was the case at one stage, and as a result of that people ended up languishing in inappropriate hospital beds for weeks, months and in some cases years. [96]

40. Some witnesses recommended that greater flexibility should be introduced into the Regulations to ensure that the rights of older people were respected when discharge was being considered. Suggestions for amending the Regulations included that the time period should be extended from two days to about a week[97] or a little longer.[98] One witness described the operation of the Regulations as leading to a "chaotic scramble"[99] to find appropriate care for an individual whether in intermediate care, in a care home or supported within their own home. From the evidence that we heard, we agree that this can sometimes be the case. We recommend the Government amend the Delayed Discharge Regulations to allow for flexibility in applying the time period so as to ensure that the Article 8 ECHR rights of older people are respected. We also recommend that the Government issue guidance for hospitals and local authorities on the application of the Regulations to ensure respect for the Article 8 rights of older people.

Discrimination

41. As we have already highlighted, older people in healthcare are especially vulnerable to ill-treatment because of their dependency on others for their basic needs. The question is whether they receive this poor treatment because of their age and if so in what situations. Some witnesses have suggested that age discrimination still exists in the provision of healthcare in both hospitals and residential care homes.[100] We have also heard evidence that some older people experience discrimination in addition to their age, due to their race[101] or disability. However, we note that it is incorrect to talk about older people as one homogeneous group. As one witness stated:

    This [susceptibility of older people to human rights abuses] is not actually a problem of age by itself because older people are very diverse. It is by no means all older people who are vulnerable to human rights abuses, but some groups are more vulnerable than others because of ill-health, disability or dementia.[102]

AGE DISCRIMINATION
    "[…] an older person in a care home who is expressing difficulty with breathing where the care home response is to ignore it or say, "She will be okay" or "he will be okay", and there is absolutely no access to a GP for three, four or five days and then the care home will present it as being a sudden deterioration. But it is not a sudden deterioration, it is a denial of access to a GP that would not happen if that was a younger person."[103]

42. The National Service Framework for Older People states that "NHS services will be provided, regardless of age, on the basis of clinical need alone".[104]

43. Witnesses tended to agree that explicit direct age discrimination has become less common since the introduction of the National Service Framework for Older People.[105] Living Well in Later Life put this improvement down to NHS trusts auditing their policies on access to services and social services reviewing their criteria for eligibility.[106] One example of improved practice is that access to cardiac procedures and hip and knee replacements have improved since the NSF was published.[107]

44. However, some witnesses told us that direct discrimination has not ceased altogether. We were alerted to a recent study[108] which found that almost half of a sample of 85 GPs, cardiologists and specialists in old age are influenced by age in deciding whether or not to carry out tests. Patients over 65 are less likely to be referred to a cardiologist, given an angiogram (artery scan) or given a heart stress test. Cardiologists are also less likely to recommend operations to open up blocked coronary arteries for older patients, and they are less likely to be prescribed statins to reduce cholesterol. They are, however, more likely to be offered a follow-up appointment and more likely to have existing drugs reviewed.

45. In Age Concern's recent report on age discrimination,[109] it concluded that age discrimination existed in healthcare. Examples cited included:[110]

  • Treatment for minor strokes is covertly rationed for people over 80 years of age.
  • Doctors are less likely to refer angina sufferers to see a specialist or to have tests if they are over 65.
  • National priorities for health and social care restrict targets for reducing heart disease, strokes and cancer to people under 75.
  • Invitations to breast screening stop for women over 70.
  • Older people tend to be excluded from drug trials.

46. In addition, particular concern was expressed by Age Concern and others about the poor provision of mental health services to older, compared with younger, people. We consider this issue in greater detail below.

47. What became clear to us from the evidence is that an older person's age is much less likely to be directly taken into account when decisions are taken about his or her healthcare than in the past. However, age discrimination in both hospitals and care homes is now more subtle and indirect. As one witness told us, "the majority of policies that directly discriminated on the basis of age have now been eradicated, although it has proved harder to challenge embedded ageist attitudes on the part of NHS staff".[111] This accords with the findings of the National Director for Older People's Services, who has said "although overt age discrimination is now uncommon in our care system, there are still deep-rooted negative attitudes and behaviours towards older people"[112] and "our existing services were not designed with older people's needs in mind".[113] The Royal College of Physicians of Edinburgh said that there is "'structural ageism' in the NHS […] which biases against the multiple pathology of older persons".[114] Given that, according to the NHS Confederation, "the NHS spends 80% of its resources and 80% of its time on people over the age of 65",[115] we find it surprising that this bias against services for older people continues to exist. Examples include:

  • Local authorities have lower budgets for their older people's teams than for teams dealing with younger people.[116]
  • There is a lower financial cut-off point for care packages for older people compared with equivalently disabled younger people.[117]
  • Decisions about whether to refer or treat are made on the basis of "deep seated, underlying attitudes and beliefs about older people".[118]

DISCRIMINATION AGAINST VULNERABLE GROUPS

48. The most vulnerable older people are particularly susceptible to poor treatment. Older people may face poor treatment not just because of their age, but also for other reasons such as disability or race. We consider two particular groups below.

People with mental health needs

49. According to the Alzheimer's Society, there are currently 700,000 people with dementia in the UK.[119] With an ageing population, these numbers are set to rise steeply in the future.[120] People with dementia are significant users of social and health care services. A recent report found that direct costs to the NHS and social care of dementia are currently at least £3.3 billion a year in England, although the overall economic burden is estimated at £14.3 billion.[121] One third of people with dementia live in care homes. Two thirds of care home residents have some form of dementia. Approximately one quarter of hospital beds are being used by people with dementia at any one time.[122]

50. The National Service Framework for Older People requires that "older people who have mental health problems [should] have access to integrated mental health services, provided by the NHS and councils to ensure effective diagnosis, treatment and support, for them and their carers".[123]

51. However, the National Service Framework for Mental Health[124] specifically excluded older people from its reach as it only focussed on adults of "working age". As reported in Living Well in Later Life:

    […] the organisational division between mental health services for adults of working age and older people has resulted in the development of an unfair system, as the range of services available differs for each of these groups […] Older people who have made the transition between these services when they reached 65 have said that there were noticeable differences in the quality and range of services available. [125]

52. A number of witnesses criticised the poor provision for the mental health of older people, for example:[126]

  • Older people do not have access to the range of specialist mental health services, such as talking treatments, available to younger adults despite having the same, and often greater, need.[127] This inevitably restricts their choice of treatment options.[128]
  • Younger people receive higher levels of community services than older people. Older people are moved into residential care even though "a small amount of additional support at home could help someone to maintain their independence in the community for far longer".[129]
  • Some care homes will refuse to take older people with dementia, even though the majority of people living in care homes have a form of dementia.[130]
  • Mental health services are not tailored to the needs of older people.[131]
  • Staff have insufficient training on the specific needs of people with dementia or other mental health problems.[132]

53. A recent report on dementia concluded that:

    People with dementia have not benefited from the developments in mental health services seen for working age adults […] Overall […] services are not currently delivering value for money to taxpayers or people with dementia and their families […] The rapid ageing of the population means costs will rise and services are likely to become increasingly inconsistent and unsustainable without redesign.[133]

54. As Mind said:

    Despite the high prevalence of mental health problems in older people, too often services fail to provide for this group […] Mind is concerned that as the population gets older, the service people receive for mental distress in older age will get worse unless discrimination in the system is tackled now.[134]

Black and minority ethnic older people

55. Surveys show that black and ethnic-minority people are high users of healthcare services for conditions that may or may not be present in old age such as heart disease,[135] stroke[136] and diabetes.[137] In addition, it is suggested that black and ethnic minority people, and African Caribbean people in particular, fare worse under the mental health system than other people.[138]

56. Several witnesses told us that black and ethnic minority older people may be especially vulnerable to poor treatment.[139] As Mind put it:

    Many services have a poor record on engaging with older people from black and minority ethnic (BME) communities. The way that mental health services are organised and delivered creates cultural norms and practices different to those of older BME communities, many of whom spent their formative years outside of Britain. Barriers may include language issues, knowledge of what is available, and attitudes and practices of service providers. A lack of translated information about mental health issues and services often results in isolation for individuals and the delivery of inappropriate care or no care at all […] Furthermore, older people from different communities may share similar experiences of racism and ageism, but the circumstances of (for example) Chinese, African-Caribbean or Asian older people may require very different approaches.[140]

57. As we note below, older people face particular barriers in making their voices heard and raising complaints. This is even more acute for people who are not able to communicate with the authorities because they do not speak English or understand to whom to turn. Witnesses told us that language barriers for older people in accessing healthcare are of real concern. As Race on the Agenda said, "it is unrealistic to imagine that people who have reached a certain level of maturity can learn a new language".[141]

Root causes

58. The Healthcare Commission highlights a number of common themes in the treatment of older people in healthcare which resonate with the evidence of other witnesses, including "deeply rooted ageist attitudes […] Standards of nursing care that fall below expected levels […] A focus on high profile targets […] Shortcomings in leadership, management, accountability and governance […] A poor and institutionalised environment."[142]

59. In our view, these are symptomatic of wider and more general issues of concern for the protection and respect for the human rights of older people. These include, at a very basic level, a lack of sufficient "protection from harm",[143] privacy, dignity, respect, confidentiality, independence and autonomy (or as the British Geriatrics Society put it, a "lack of encouragement to older people to make their wishes and desires known to the staff looking after them"[144]). We consider that the power imbalance between service providers and service users and the strong evidence that we have received of historic and embedded ageism within healthcare for older people are important factors in the failure to respect and protect the human rights of older people. These problems require more than simply action at the local level, but an entire culture change in the way that healthcare services for older people are run, as well as strong leadership from the top. The Human Rights Act has an important role to play in moving the culture to one where the needs of the individual older person are at the heart of healthcare services. We discuss this more fully in the next Chapter.

60. We have heard some valuable and useful suggestions on how the deeply unsatisfactory situation we have outlined can be improved, including a new statutory duty on public services to promote age equality (similar to the race, disability and gender duties).[145] Age Concern recommend that an age equality duty would be beneficial as:

    It would have a very powerful influence in transforming public services and achieving a culture change […] users would end up getting far more voice and choice in relation to the services that they needed and involvement in decisions as to how these services were planned […] not only would all existing policies and services be assessed for their impact on age—they would be age proofed—but also all new policies and initiatives would be assessed for the impact they made on age as well.[146]

61. We note that the Minister for Work and Pensions, Barbara Follett MP said the following during the recent Commons debate on age equality:

    A positive duty could be particularly effective in ensuring that public service providers take the needs of people of all ages into account when planning and commissioning services and providing staff training. That could play quite a part in the cultural shift that we need to bring in.[147]

62. Help the Aged[148] and others also recommend that the existing prohibition on age discrimination in the workplace be extended to the provision of goods, facilities and services.[149] The Discrimination Law Review Green Paper on the need for a single equalities Actstates "we are considering whether legislation to prohibit negative age discrimination beyond the workplace would help to ensure that people are always treated with respect in our society, whatever their age." [150]

63. We will consider these proposals for law reform in due course. In the interim, we consider, based on the evidence that we have received, the case in favour of these two legislative changes to be made.

64. We are convinced that the existing legislation does not sufficiently protect and promote the rights of older people in healthcare. We recommend that there should be a positive duty on providers of health and residential care to promote equality for older people. We also recommend that the current prohibition on age discrimination in the workplace be extended to the provision of goods, facilities and services, so as to encompass (amongst other activities) the provision of healthcare.

65. The new Commission for Equality and Human Rights (CEHR), which opens its doors in October 2007, has a significant role to play in ensuring that older people's rights are promoted and protected.[151] The CEHR has a duty to "monitor the effectiveness of the equality and human rights enactments"[152] and to publish periodic reports.[153] We therefore recommend that the CEHR monitors the implementation of human rights and equality legislation in healthcare for older people and reports on this in its State of the Nation report.

66. In the next Chapter, we consider how the application of human rights principles could make a difference in practice to the problems we have identified above.


5   Ev 194, para 2. Back

6   Q 211. Back

7   Q 140. Back

8   Q 285. Back

9   See definitions of "elder abuse" at paragraphs 16 and 17. Back

10   Commission for Social Care Inspection, State of Social Care Report 2005/06 (December 2006), p 140. Back

11   Ibid, p X. Back

12   Ev 105-122. Back

13   Launched 14 November 2006. Back

14   Launched 13 February 2007. Back

15   Ev 194, para 3. Back

16   Department of Health, No Secrets - Guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse, March 2000, para 2.5. Back

17  Action on Elder Abuse, Hidden Voices: Older People's Experience of Abuse (September 2004), p 2. Back

18   Age Concern, Rights for Real, May 2006, p 35. Back

19   Hidden Voices, op cit, pp 2-5. Back

20   Hidden Voices, op cit, p 3. Back

21   Hidden Voices, op cit, pp 4-5. Back

22   Health Committee, Elder Abuse, Second Report of Session 2003-04, paras 13 and 107. Back

23   Ev 155. Back

24   Q 7. Back

25   Qs 4-7. Back

26   Q 213. Back

27   Ev 195, para 6. Back

28   Ev 144, para 2.3. Back

29   Ev 144, para 2.3; Ev 160, para 1.2. Back

30   Ev 195, para 7. Back

31   Ev 104, para 1(e). Back

32   Ev 98; Ev 143, para 2.2. Back

33   Ev 92; Ev 153. Back

34   Committee visit. Back

35   Section 44 Mental Capacity Act 2005. Back

36   Section 127 Mental Health Act 1983 as amended by the Care Standards Act 2002, section 116, Sch 4, para 9. Back

37   Ev 104, para 1(c). Back

38   Age Concern, Age of equality? Outlawing age discrimination beyond the workplace (2007), p 23. Back

39   Q 214. Back

40   Ev 85, para 1(i); Ev 122-123. Back

41   Age Concern England, Hungry to be Heard: the scandal of malnourished older people in hospital (2006) referred to in Ev 130. Back

42   Ev 163, para 1.25 , Ev 144, para 2.3. Back

43   Healthcare Commission press release, 7 March 2007. Back

44   Q 379. Back

45   Ev 163, para 2.6. Back

46   Ev 195, para 8. Back

47   Ev 222. Back

48   Q 219. Back

49   Ev 195, para 8; Ev 173, para 16. Back

50   Margallo-Lana, M et al, (2001) Management of behavioural and psychiatric symptoms amongst dementia sufferers living in care environment. International Journal of Geriatric Psychiatry. Back

51   Ev 214, paras 22-23. Back

52   Health Committee, Elder Abuse, Second Report of Session 2003-04, para 65. Back

53   This milestone was set in April 2002. Back

54   Living Well in Later Life, p 9. Back

55   State of Social Care 2005-6, op citBack

56   Q 219. Back

57   Ev 97. Back

58   Q 291. Back

59   Ev 97. Back

60   Q 285. Back

61   Q 336. Back

62   Ev 123. Back

63   Ev 90. Back

64   Ev 160, para 1.5. Back

65   Q 287. Back

66   Ev 160, para 1.2. Back

67   British Geriatrics Society, Behind closed doors - Using the toilet in privateBack

68   Ev 160, para 1.5. Back

69   Ev 160, para 1.5. Back

70   Ev 140. Back

71   Department of Health, Dignity in Care public survey - Report of the Survey, October 2006, p 5. Back

72   Q 373. Back

73   Q 379. Back

74   Ev 162, para 1.20-1.21. S v Plymouth City Council [2002] EWCA Civ 388 - Article 8 ECHR (right to respect for private life) includes a procedural requirement to be involved in decision making processes, including on behalf of a family member who lacks capacity (para 40). Back

75   Q 23. Back

76   Ev 113, para 75. Back

77   Ev 108, para 17. Back

78   Ev 116-121. Back

79   Ev 161, para 1.11; Qs 23 & 281 [Dr Dalley]. Back

80   Ev 160, para 1.9; Q 27. Back

81   Q 227. Back

82   Q 23. Back

83   Ev 101; Ev 126, para 2.7; Ev 141. Back

84   Ev 214, para 19. Back

85   Q 227. Back

86   Ev 174, para 17. Back

87   Q 27 [Mr Hurst]. Back

88   Q 287. Back

89   Q 311. Back

90   Q 281. Back

91   Q 23. Back

92   Q 25. Back

93   Q 446. Back

94   Department of Health, Discharge from hospital: pathway, process and practice, January 2003, p 3. Back

95   Q 448. Back

96   Q 460. Back

97   Q 23. Back

98   Q 230. Back

99   Ev 214, para 19. Back

100   Ev 125, para 2.3. Back

101   Ev 197, para 13. Back

102   Q 11. Back

103   Q 244 [Mr FitzGerald]. Back

104   Standard One, 27 March 2001. Back

105   Ev 215, para 27; Q 44 [Mr Hurst]. Back

106   CSCI, Audit Commission and the Healthcare Commission, Living Well in Later Life, March 2006, pp 6-7. See also Ev 108, para 16. Back

107   Ibid, Living Well in Later Life, p 7. Back

108   Harries, C., Forrest, D., Harvey, N., McClelland, A. and Bowling, A., Which doctors are influenced by a patient's age? A multi-method study of angina treatment in general practice, cardiology and gerontology, Quality and Safety in Healthcare 2007;16:23-27. See also Young, J., Ageism in services for transient ischaemic attack and stroke, British Medical Journal, 9 September 2006; 333; 508-9: "whenever a clinical stone is turned over, ageism is revealed". Back

109   Age Concern, Age of Equality? Outlawing age discrimination beyond the workplace, May 2007. Back

110   Ibid, May 2007, p 22. Back

111   Ev 128, para 4.1. Back

112   Department of Health, A New Ambition for Old Age, 19 April 2006, p 2. Back

113   Department of Health, A Recipe for Care - Not a Single Ingredient, 2007, p 1. Back

114   Ev 153. Back

115   Q 336. Back

116   Q 58. Back

117   Q 58. Back

118   Q 46. Back

119   Ev 212, para 3. Back

120   National Audit Office, Session 2006-2007, Improving services and support for people with dementia, HC 604, p 6. Back

121   This figure includes both formal and informal costs (i.e. carers' time). National Audit Office, Session 2006-2007, Improving services and support for people with dementia, HC 604, 4 July 2007, p 4. The Alzheimer's Society estimate that the total economic burden in the UK is £17 billion, which includes £6 billion of care provided by families (Ev 212, para 3). Back

122   Ev 212, paras. 4-5. Back

123   Standard 7. Back

124   Department of Health, September 1999. Back

125   Living Well in Later Life, p 7. Back

126   Q 44 [Mr Hurst]; Ev 212, para 6; Ev 134, para 1. Back

127   Ev 100; Ev 163, para 2.7. Back

128   Ev 135, paras. 1.2-1.3. Back

129   Ev 215, para 28. Back

130   Ev 214, para 20. Back

131   Ev 135, para 1.2. Back

132   Ev 217, para 41. Back

133   Improving services and support for people with dementia, op cit, paras. 34-36. Back

134   Ev 135, paras. 1.2-1.3. Back

135   South Asian people are 50% more likely to die prematurely from coronary heart disease than the general population. Delivering the National Service Framework for Coronary Heart Disease, NHS, 2004. Back

136   Amongst African-Caribbean and South Asian men the prevalence of stroke was between about 40% and 70% higher than that of the general population respectively after adjusting for age. National Statistics, Health Survey for England 2003Back

137   Men and women of Pakistani and Bangladeshi origin are more than 6 times as likely as the general population to have diabetes, and Indian men and women are almost 3 times as likely. Rates of diabetes among Black Caribbeans were also significantly higher than in the general population. The Health of Minority Ethnic Groups, Health Survey for England, 1999, National Statistics. Back

138   African-Caribbean people are much less likely to be referred by their GP to mental health services but twice as likely to be referred by the police and the courts. Healthcare Commission, 2005, Count me in - results of a national census of inpatients in mental health hospitals and facilities in England and Wales, London. Black and ethnic minority groups are more likely to be misunderstood and misdiagnosed, have more ECT (electro-convulsive therapy) rather than 'talking treatments', are more likely to stay in hospital longer and less likely to have their psychological needs addressed. Mind, The Mental Health of the African Caribbean Community in BritainBack

139   Ev 197, para 13; Ev 101. Back

140   Ev 138, para 5.6. Back

141   Ev 198, para 14. Back

142   Ev 144, para 2.6. Back

143   Q 281. Back

144   Q 280. Back

145   Race Relations (Amendment) Act 2000; Disability Discrimination Act 2005 and Equality Act 2006. Back

146   Q 61. Back

147   10 July 2007, Column 412WH. Back

148   Q 62. Back

149   Ev 163, para 2.8. Back

150   Discrimination Law Review - A Framework for Fairness, op cit, para 9.4. Back

151   Here we agree with the Health Committee, Second Report of Session 2003-04, Elder Abuse, HC 111-1, para 13. Back

152   Equality Act 2006, Section 11(1). Back

153   Equality Act 2006, Section 12(4)(a). Back


 
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