The Human Rights of Older Persons in Healthcare

JCHR consultation

February 2007 

Summary of Main Concerns

In this evidence, we draw the Committee’s attention to our key concerns and recommendations relating to the human rights of older persons in healthcare in Northern Ireland.  We recommend the Committee give consideration to the following:

	assessment of capital and the contribution towards the cost of residential care payable by an older person (paras 2.2, 3.10 - 3.12);
	implementation of free personal care (para 2.3);
	development and monitoring of new standards by the RQIA to protect against elder abuse in residential care homes (para 3.4);
	implementation of independent advocacy services for older people with mental health problems (paras 3.6 - 3.7);
	development of capacity based legislation for Northern Ireland to bring it in line with the rest of the United Kingdom (para 3.9)
	the impact of top-up payments for residential care (para. 3.12);
	reform of the complaints process to resolve complaints more quickly and ensure complaints are used to monitor the unmet needs of older people in healthcare and as an improvement tool (paras 5.2, 5.5, 5.6, 6.4)
	the need for a a consolidated strategy to promote human rights in healthcare (paras. 5.3 – 5.4), incorporating  time-bound measurable targets for policies and action plans concerning the human rights of older people in healthcare;
	further training for healthcare staff on human rights principles (paras 6.1, 8.3, 8.4)
	targeting of financial resources to reduce existing health inequalities or other social-economic inequalities that impact on the health of older people in Northern Ireland (para 8.1)
	planning for service delivery to meet increased need in the future (para 8.2)

1.  Introduction: About Law Centre (NI)

1.1 Law Centre (NI) is a public interest law non-governmental organisation.  We work to promote social justice and provide specialist legal services to advice organisations and disadvantaged individuals through our advice line and our casework services from our two regional offices in Northern Ireland.  We provide a specialist legal service (advice, representation, training, information and policy comment) in five areas of law: community care, immigration, social security, mental health and employment to almost 500 member agencies.  Members include local Citizen Advice Bureaux, independent advice agencies, local solicitors, trade unions, social services, probation offices, constituency associations of local political parties, libraries and other civic organisations.   

1.2 Our community care legal representation service deals with personal and support services for a range of people including those who are elderly, ill, disabled, incapacitated and carers.  Our community care advice line operates from both our offices and our community care legal representation service provides training for Health and Social Services Trusts (Trusts).  We also facilitate the Community Care Practitioners’ Group which consists of Trust staff and voluntary sector organisations. It meets regularly to discuss all aspects of community care law and practice in Northern Ireland.  This submission has been informed by the work of our community care practitioners.   

1.3 We welcome the opportunity to provide evidence to the JCHR on the human rights of older persons in healthcare.  Below we set out some of the issues pertaining to Northern Ireland in the treatment of older persons in healthcare followed by responses to the particular questions raised by the Committee.  We illustrate our remarks with  examples from our casework. 

2.  The Northern Ireland Context

2.1 Over the period 1996 to 2036, it is estimated that the percentage of the population in Northern Ireland aged 65 or over will almost double from 13% to 24%.[1]  In 2003/04 there were 165 residential homes, 78 dual registered homes and 71 nursing homes in Northern Ireland, with bed occupancy rates of 89.7%, 91.5% and 90.6% respectively.[2]  Current figures confirm that there are 369 care homes in Northern Ireland providing personal and residential care for older people.[3]  Despite the growing number of residential care homes, Northern Ireland still lags some way behind the rest of Great Britain in the provision of residential care beds.  In 2002 there were almost 7,000 places in residential homes in Northern Ireland, representing 5.4 places per 1,000 adult population, compared with 8.9 in England, 8.0 in Wales and 5.6 in Scotland.[4]

2.2 In Northern Ireland, decisions about continuing health or social care needs are made on a case-by-case basis by clinicians and social care professionals.  Trusts are responsible for assessing and managing the care of people who require community care services.  Where a person is assessed as needing nursing home/residential accommodation and enters such care on a permanent basis, Trusts are required to assess the contribution the person placed can make to the cost of their care. It should be noted that unlike in England, in Northern Ireland, Trusts have no discretion on this matter and must follow the very precise guidance issued by the Department of Health, Social Services and Public Safety (DHSSPS) and charge people accordingly.[5]

2.3  In 2002, the Northern Ireland Assembly introduced free nursing care. The motion to also introduce free personal care was, however, defeated.  In December 2006, the Transitional Assembly again debated the introduction of free personal care in Northern Ireland.  The motion gained cross-party support and was passed by a unanimous vote.  We therefore expect early action on this matter following the anticipated establishment of a devolved Assembly in Northern Ireland on foot of the March 2007 elections.

2.4 Also of relevance to the rights of older people in healthcare in Northern Ireland is the recent Review of Public Administration (RPA), which was launched by the Northern Ireland Executive in June 2002 and concluded in March 2006.  It was a comprehensive examination of the arrangements for the administration and delivery of public services in Northern Ireland, covering over 150 bodies, including the 26 district councils, the Health and Social Services Boards and Trusts, the five Education and Library Boards and about 100 other public bodies.  The RPA has lead to major organisational change within Health and Personal Social Services (HPSS) and the number of public bodies in relation to health will be reduced from 47 to 18 over the next few years.  The full impact of the RPA is yet to be seen but it will undoubtedly alter the way services are provided to older people.  We will continue to monitor its impact and implementation to ensure the human rights of older people are not unduly affected.

2.5  In terms of promoting human rights, including the rights of older people in healthcare, Northern Ireland is distinct from Great Britain in two ways.  Firstly, unlike the rest of the United Kingdom, Section 75 of the Northern Ireland Act 1998 imposes positive duties on public authorities, including Trusts, to promote equality of opportunity and good relations on a range of grounds including age. 

2.6 Further, the Northern Ireland Human Rights Commission (NIHRC) (at present, the only statutory human rights agency in the United Kingdom) has a statutory duty to promote human rights in Northern Ireland.  Sepcifically, it may provide advice on laws, policy and practice; investigate and assist in cases;  conduct educational activities; and, conduct research in relation to the rights of older people in Northern Ireland. 

2.7  Discussions are underway in Northern Ireland regarding the development of a Northern Ireland Bill of Rights, which would further enhance the rights of older people in healthcare.  The positive role that may be played in a post-conflict society by the process of negotiating and framing a bill of rights is now well-recognised.  We recommend that the Committee express its support for the enactment of a strong and inclusive Bill of Rights for Northern Ireland. 

Specific Questions

3.  What are the main challenges to the human rights of older persons receiving treatment in hospital and residential care homes?  Do the same problems arise in both settings?

3.1  From our advice and casework experience, the main challenges relating to the human rights of older persons receiving treatment in hospital and residential care homes concern issues that may engage Articles 3, 5, 6 and 8 of the European Convention on Human Rights.  Whilst we are aware that similar problems arise in both hospital and residential care settings, much of our experience relates to issues in residential care homes. 

3.2  We provide case study examples on each of these challenges below.  The names of interested parties have been altered in order to protect the privacy of those concerned.  Some of our examples refer to potential human rights abuses of older people receiving healthcare in their own homes.  We have included these examples as Trusts in Northern Ireland are still accountable for the provision of healthcare to older people in their homes through the funding of care packages and because a high degree of healthcare for older people in Northern Ireland is provided in the home.[6]  

Quality of care: Article 3 – the right to be free from torture, inhuman or degrading treatment

3.3 Recent statistics from Help the Aged in Northern Ireland found that 23 per cent of elder abuse occurs in institutional settings such as residential care homes.[7]   

3.4 In Northern Ireland the Regulation and Quality Improvement Authority (RQIA) has overall responsibility for monitoring and inspecting the availability and quality of health and social care services in Northern Ireland and encouraging improvements in the quality of those services.  The RQIA was only established in 2005 and its impact and influence in the healthcare sector is still being determined.   It is recognised that the standard of care in residential care homes is a major issue for older people in Northern Ireland and new standards are being developed which are due for publication in early 2007.[8] 

We recommend the development and monitoring of new standards by the RQIA to protect against elder abuse in residential care homes.

Detention of older people in residential homes or hospitals: Article 5 – the right to liberty

3.5 The right to liberty is most relevant in relation to the inappropriate detention of older people in residential homes or hospitals.

The right to liberty links to issues of capacity and consent which are explored further at points 3.8-3.9.

Right to an independent advocate: Article 6 – the right to a fair trial

3.6 Interconnected with the right to liberty is the right to a fair trial, which in much of our work translates as the right to an independent advocate.  The lack of sufficient advocacy services in Northern Ireland and the fact that unlike in England, legal aid for mental health patients in Northern Ireland is means-tested greatly affects the access to justice for older people with mental health problems.  

3.7  The Bamford Review of Mental Health and Learning Disability (Northern Ireland) (Bamford Review) recommended a right to advocacy for persons detained[9] and specifically that independent, specialist advocacy services should be available for older people with mental health problems.[10]  The provision of an advocate will increase a person’s ability to participate in their care and treatment and will enhance their access to justice.  Legislating for the right to an advocate will go some way to increase the awareness and acceptance of the important role of advocates, which will greatly benefit many older people with mental health problems.

We recommend the implementation of independent advocacy services for older people with mental health problems.

Article 8 – the right to respect for private and family life

3.8  The issue of consent in healthcare can be controversial.  If a person is genuinely unable to consent, the healthcare provider must still consider whether the action taken is minimal in its interference and serves a legitimate and defined purpose such as the protection of health.  In Northern Ireland, guidance has been issued dealing with the obtaining of consent, which states that ‘it is a general legal and ethical principle that valid consent must be obtained before….providing personal care’.[11]   

3.9 There is no specific capacity legislation in Northern Ireland.  Considerable work in this area, however, has been undertaken as part of the Bamford Review and the Office of Law Reform (NI) has placed reform of the law in relation to mental incapacity and decision making on its agenda.  The Bamford Review Proposals for the reform of mental health law in Northern Ireland are expected in February 2007.

We recommend the development of capacity legislation for Northern Ireland to bring it in line with the rest of the United Kingdom.

Charging for care

3.10    As referred to at point 2.3 older people in Northern Ireland do not have the right to free personal care and as a result often face discrimination in regards to the cost of healthcare and how their capital worth is assessed.  We are concerned by the interpretation of the DHSSPS guidance relating to the assessment of a person’s capital when an older person is placed in residential care.   One of the major issues in the assessment of capital is the calculation of the interest held by a person in a jointly owned property.  Trusts are not clear in the interpretation of the guidance and as a result, we have concerns that incorrect valuations of property are occurring which can have a significant impact on the healthcare services and benefits available without charge to the older person concerned.  

3.11 Another consequence of the means tested charging system is that people who are in receipt of financial assistance from social services in Northern Ireland are required to contribute the majority of their benefit payments to the cost of their residential care.  This system deprives many older people in residential care of financial independence often leaving them with only a small weekly allowance to cover personal expenditure.

3.12  Payment levels set by Trusts i.e. maximum payments towards the weekly cost of nursing home and residential care, leaves limited choice open to an older person (or family) in choosing a care home unless the difference between the limit set by the Trust and weekly charge is met by a third party (usually a family member).  In the absence of a top up we have anecdotal evidence of the personal expense element of social security being used to bridge the gap, leaving an older person without an income. 

We recommend that the Committee suggest that the DHSPSS investigate this issue. 

3.13    Further, in relation to Article 8 rights, for older people who may wish to be transferred to residential care close to family, we are aware that it does not appear possible under current guidance for English authorities to pay for residential care in Northern Ireland and vice versa. 

We recommend that the Committee seeks clarification from the DHSPSS as to the current guidance and practice on this issue.

4.  Are there discriminatory restrictions of the rights of older persons to access healthcare without adequate justification, for example in relation to criteria used for sharing or rationing of finite healthcare resources?

4.1  41 per cent of older people in Northern Ireland feel that they are treated differently from people in the general population because of their age and of those, 76 per cent feel that, because of their age, they are treated worse that the general population.[12]  Research by the Northern Ireland Human Right Commission in 2001 found that it is difficult to provide evidence of such discrimination on grounds of age happening on a systematic basis but that the fear exists for older people in Northern Ireland.  According to the Commission, ‘the extent of discrimination tends to be hidden because of an absence of research especially in relation to the health care system.’[13]

5.  What barriers face older persons, and their families, seeking to voice their concerns about possible abuse, neglect or discrimination in healthcare?

5.1  Despite the considerable work of the NIHRC and the Equality Commission for Northern Ireland on Section 75, there remains a lack of public information regarding human rights and their application to healthcare in Northern Ireland.  This lack of information is a considerable barrier both to the realisation of human rights for older people in healthcare and to the ability of older people to voice concerns about possible breaches of human rights. 

5.2 The NIHRC has found that there appears to be a lack of consistency in the recording of unmet needs in the provision of healthcare services to older people and therefore a lack of knowledge on the part of the Government as to the real level of need.  This issue needs to be addressed by Trusts. [14]

We recommend that proper complaints and reporting procedures are put in place to monitor the unmet needs of older people in healthcare.

5.3 While considerable advances have been made within the health sector to target inequality, this is a continuous process and there is still some way to go.  The sheer number of strategies and frameworks which refer to human rights, confirm the increased recognition given to a rights based approach to healthcare in Northern Ireland.

We recommend that a consolidated document on human rights in healthcare is produced which draws together key priorities with appropriate reference to other strategies.  

5.4 Although these documents may refer to human rights they often fail to deliver on measurable means of implementing human rights on a day to day basis for the people of Northern Ireland.   To ensure quantifiable success any strategy to promote or protect human rights should include definitive time-scales with measurable targets.  It is important that a human rights strategy generates public confidence and that clear processes for ongoing monitoring and an annual review of its outcomes are put in place. 

We recommend that policies and action plans concerning the human rights of older people in healthcare contain definitive time-scales with measurable targets.

5.5 The healthcare complaints system in Northern Ireland is outdated and inadequate and forms a major barrier for older people and their families seeking to voice their concerns about the healthcare system.  We welcome moves by the DHSSPS to reform the complaints system for HPSS. 

We recommend that reforms should aim to simplify the complaints process, help to resolve complaints more quickly and that DHSPSS ensure that complaints are used as an improvement tool with a feedback loop across all the major healthcare providers. 

5.6 If older people or their family members/interested parties are dissatisfied with the provision of healthcare services and feel that their human rights have been breached there is a lack of remedies available to them.  The main legal remedy in Northern Ireland is to seek a judicial review of the decision made by the Trust.  The cost of judical review proceedings, however, precludes many older people from seeking legal redress of the issue.  

We recommend that this issue is addressed as part of the review of the complaint process and that consideration is given to the resourcing of an independent body or panel to facilitate complaints of this nature or the creation of an independent health Ombudsman.

6.  Could older persons receiving treatment in hospital, or in residential care, be better informed about human rights principles?  If so, how could better information and involvement be achieved?

6.1 As per our comments above, older people receiving treatment in hospital or residential care need to be more informed about human rights principles.  This could be achieved through training staff on human rights principles, which will in turn create a more rights based approach to healthcare.  Research commissioned by the NIHRC concluded that there is a consensus in Northern Ireland that human rights education training is important.  Very few organizations, however, assess or accredit their training and there are few materials available for organizations to use in human rights training.[15] 

We recommend further training for healthcare staff on human rights principles.

6.2 Healthcare providers should include information regarding human rights principles in marketing material, reports to owners and/or governing bodies.  Public healthcare providers have further obligations to meet best practice guidance as laid down by the DHSSPS in a variety of documents including the recent Strategy and Action Plan to Promote Equality, Good Relations and Human Rights. 

6.3 Consideration should also be given to the UN Principles for Older Persons which provide a useful benchmark for measuring progress for older people in all aspects of their lives and they should be taken into account in policy-making and legislative development or reform. 

6.4 As referred to at paragraph 5.5 new proposals have been made for the handling and consideration of complaints in the HPSS in Northern Ireland and consultation on these proposals is underway.

We recommend that further information regarding breaches of human rights is included within any reform of the complaints system and a clear means of redress is made available to those victims of rights abuses.  

7.  What examples are there of healthcare professionals or other workers, or advocates for older persons, using human rights principles to secure the dignity of older persons undergoing treatment for physical or mental illness?

7.1 Alongside our own policy and casework considerable work continues to be done in Northern Ireland by other agencies to promote and protect the human rights of older people in healthcare. 

7.2 Rights in Community Care (RICC) is an umbrella group of organisations in Northern Ireland, including UNISON, Age Concern, Help the Aged, Alzheimer’s Society, Carers NI, Disability Action and Law Centre (NI), which campaigns for rights and entitlements for older people (and others) in community care.  It has supported campaigns and court cases against the closure of homes for the elderly and lobbied on issues such as free personal care and carers rights.  RICC uses a rights based approach to its campaigning and policy work. 

7.3 Age Concern Northern Ireland, Help the Aged, Alzheimer's Society, Carers NI, and the Women’s Aid all sit on the Strategic Elder Abuse Alliance in Northern Ireland, which aims to work towards the eradication of elder abuse.  The Alliance is well versed in the language of rights as a means of promoting and protecting the interests of older people in Northern Ireland. 

7.4 Help the Aged also launched a Help Stop Elder Abuse campaign in Northern Ireland in January 2006.  The Northern Ireland campaign runs alongside the main UK campaign to eradicate elder abuse.     As part of this campaign a video was produced to highlight some of the stories of abuse in Northern Ireland.  This video has been distributed to various organisations for use as an awareness raising device and training tool for staff.[16] 

8.  What are the main practical, management and resource considerations facing those working in healthcare settings, including residential homes, when seeking to protect the human rights of older persons in their care?

8.1  Limited healthcare resources, a lack of funding and worker recruitment and retention problems are often used as justification for restrictions on the protection or advancement of the human rights of older people in healthcare. 

We recommend the targeting of financial resources to reduce existing health inequalities or other socio-economic inequalities that impact on the health of older people in Northern Ireland. 

8.2  Practical consideration must be given to planning for the future needs of the growing population of older people in Northern Ireland.  Without sufficient planning now, the ability to protect the human rights of older people in the future will be limited.   One example of this growing need is that the population of people aged 65 -99 with dementia is set to double by 2031. This will have a major impact on planners and commissioners involved in health and social care provision.[17]

We recommend planning for service delivery to meet increased need in the future.

8.3 Much of the responsibility lies with Trusts and other health and social services agencies to ensure that human rights are used as the guiding framework for decision-making and for securing support for human rights initiatives.  Considerable training will need to be available to Trusts governing boards and staff regarding the relevance and importance of human rights as legal obligations.  Consideration needs to be given to the allocation of resources for this purpose and training should be informed and/or delivered by service users.

8.4 Training on human rights also needs to target staff who have direct responsibility for the healthcare of older people.  Many people’s experiences of health and social services are influenced to a high degree by the staff they meet.  Therefore, the need to promote an equality and human rights culture across the healthcare sector by training staff is of the utmost importance.  Staff need to be made aware of their human rights legal obligations.  Individual care providers may need to ensure that they have effective staff training regarding the treatment of older people to protect against any degrading or inhuman treatment. 

9.  Do NICE and the Healthcare Commission take sufficient account of the human rights of older persons in their work?

9.1 NICE and the Healthcare Commission have no jurisdiction in Northern Ireland.  However, although Northern Ireland is not bound by recommendations made by NICE, it does take them into consideration.

10.    Conclusion

10.1 We support a rights-based approach to health and social services in Northern Ireland.  Under a rights-based approach to health, human rights should be used as a framework for health development and the human rights implications of any health policy, programme or legislation should be assessed and addressed prior to implementation. 

10.3    Law Centre (NI) welcomes the opportunity to provide evidence to the Committee.  We trust you will find our comments helpful.  If there is any further way in which we could contribute to this process we would welcome the opportunity to do so.