Joint Committee On Human Rights Eighteenth Report


6  Health and social care inspectorates and NICE

163. The Commission for Healthcare Audit and Inspection (known as the Healthcare Commission) was established by the Health and Social Care (Community Health and Standards) Act 2003. It has the general function of encouraging improvement in the provision of health care by and for NHS bodies. The Commission is also the independent healthcare regulator for England and is responsible for assessing and reporting on the performance of NHS and independent healthcare organisations to ensure they are providing a high standard of care.

164. Established under the Care Standards Act 2000, what is now known as CSCI is the single inspectorate and regulator for social care in England. The Commission's primary function is to promote improvements in social care for the benefit of the people who use care services. It has a statutory duty to report on the performance of social care services, which it does annually.

165. Nearly 19,000 separate adult care homes (with 441,335 places) are regulated by CSCI (of which approximately 4,000 are nursing homes and 14,000 are care homes).[235]

166. The two commissions have a statutory duty to cooperate with each other and the other inspectorates. One example of this is Living Well in Later Life, the report of a joint review of progress on the National Service Framework for Older People by the Audit Commission, Healthcare Commission and CSCI, which was published in 2006. It found evidence of ageism across all services, from patronising and thoughtless treatment to the failure of some mainstream services to take seriously the needs and aspirations of older people. It noted that a failure to treat vulnerable older people with dignity is "an infringement of their human rights".[236]

167. The intention to merge the two commissions (together with the Mental Health Act Commission) was announced in the Chancellor's Budget statement in 2005.[237] In this section, we consider and compare the care standards under which they inspect service providers and their implementation of the HRA in the light of the forthcoming merger.

Health and social care standards

HEALTHCARE STANDARDS

168. Standards for all healthcare organisations providing NHS services are set out in the Standards for Better Health published by the Department of Health.[238] They are divided into "core" and "developmental" standards. Core standards need to be met at all times and healthcare organisations are expected to show progress towards meeting developmental standards. The Healthcare Commission is responsible for assessing performance against these standards.

169. Under their annual health check, NHS trusts must comply with 24 core standards. Some of these explicitly refer to human rights or human rights principles. For example healthcare organisations are required to:

—  Challenge discrimination, promote equality and respect human rights (C7e).

—  Have systems in place to ensure that staff treat patients, their relatives and carers with dignity and respect (C13a).

—  Have systems in place to ensure that patients' individual nutritional, personal, and clinical dietary requirements are met, including where necessary help with feeding and access to food 24 hours a day (C15b).

—  Provide healthcare services in environments that promote effective care and optimise health outcomes by being supportive of patient privacy and confidentiality (C20b).[239]

170. The accompanying material makes reference to the need for NHS trusts to comply with equality legislation and the HRA in meeting these standards. The Healthcare Commission reports that of the trusts which declared (under the self-assessment procedure) that they did not have assurance that they were "promoting respect for human rights" (C7e), the two most commonly cited reasons were:

—  Lack of information (at board level) to determine that human rights are respected across their services; and

—  Lack of training for staff on equality, diversity and human rights.[240]

171. We do not find this ignorance surprising since neither the Department of Health nor the Healthcare Commission has issued guidance to NHS trusts on what promoting human rights means in practice. The senior managers at the NHS trusts to whom we spoke during our visit to hospitals in North London confirmed this. We note that in the original consultation on the standards, the Healthcare Commission did include guidance on what these standards required but it was omitted when the standards were finally agreed.[241]

172. The Healthcare Commission conceded to us that what was needed was to get the "legislation to live"[242] and wisely observed that "the more the board can understand the implication of a piece of legislation absolutely on the front line, the more likely that piece of legislation is to be taken seriously by the board and therefore systems will be put in place."[243]

173. Although the requirements in the healthcare standards to "respect human rights" and treat patients with "dignity and respect" are welcome, they lack specificity and we recommend that the Healthcare Commission provides guidance to NHS trusts on what is required of them to meet these standards in practice.

NATIONAL MINIMUM STANDARDS FOR CARE HOMES FOR OLDER PEOPLE

174. The National Minimum Standards for care homes for older people were set by the Department of Health in 2002 (two years before the equivalent standards for health).[244] There are a total of 38 standards covering choice of home, health and personal care, daily life and social activities, complaints and protection, environment, staffing and management and administration.

175. Unlike the core standards for health, the standards for care homes do not explicitly mention "human rights", although they do require that services be provided in accordance with the human rights values of dignity and respect. For example, the introduction to the National Minimum Standards states "the principles on which the home's philosophy of care is based must be ones which ensure that are residents are treated with respect, that their dignity is preserved at all times, and that their right to privacy is always observed."[245]

176. The outcome set for Standard 10 is that "service users feel that they are treated with respect and their right to privacy is upheld".[246]

177. As we have observed elsewhere, it is not sufficient just to refer to dignity and respect. What these principles mean, and the fact that they are now underpinned by legal requirements set out in a UK statute, needs to be made clear too. We hope that the revised standards will do that. CSCI told the Committee:

    The national minimum standards for care homes are currently under review […] the drafts that we have seen are much more explicit in each standard about human rights specifically, and we have seconded somebody into the Department of Health to help with the review of those standards.[247]

178. In order to avoid the unfortunate impression that the human rights of people in care homes are less important and less enforceable than the human rights of patients in hospitals, we recommend that, following the current review, the human rights of residents be more explicitly spelt out in the care home standards.

179. Because of the court decision which we noted in the previous Chapter that private care homes are not public authorities under the Human Rights Act, we recommend, as an interim measure before legislation is passed, that the care standards regulations be amended to require, as the health standards do, that care homes respect residents' human rights in accordance with the Human Rights Act.

180. We also recommend that when the health and social care inspectorates are merged, that the standards applicable to quality of care and other issues engaging the human rights of users of services should be the same for both NHS trusts and care homes. The unified standards should expressly require compliance with human rights standards by hospitals and care homes and state that patients and care home residents have the legal right to respect for and protection of their human rights. The newly established inspectorate should provide guidance to providers of services on the implications of such requirements.

Using a human rights framework

181. The Healthcare Commission and CSCI are influential in providing leadership, guidance and scrutiny of the public services under their jurisdiction. It is not only the health and care standards that are important, but also what the commissions say and do. In our opinion, they play an important role in the implementation of the Human Rights Act. Some NGOs were critical of the low priority given to human rights by the inspectorates in their work. The BIHR commented that "low visible commitment to human rights amongst healthcare providers in both the public and voluntary sectors is compounded by low emphasis placed on human rights by the inspectorates tasked with improving health and social care practice."[248]

182. In their evidence, the Healthcare Commission ambitiously stated:

    The Healthcare Commission believes that the Act has the potential to become a cohesive framework for improving the care older people - and other vulnerable groups - receive in hospitals and other settings and that the adoption of a human rights based approach would drive significant improvements in care and in the relationship older people have with service providers.[249]

183. We agree with this sentiment but are disappointed to learn that:

    The Healthcare Commission would not claim that, at present, the Human Rights Act is explicitly used as the principal frame of reference for its regulatory work with healthcare organisations. It is one of a large number of sets of regulations and national standards which the Commission is expected to take account of in its work.[250]

184. In our opinion, the Healthcare Commission should not view the Human Rights Act as "one of a large number of sets of regulations" to which it is subject. Instead it should regard the framework created by the Act as over-arching and fundamental to all its work. We recommend that the Healthcare Commission ensures that the HRA is explicitly used in its regulatory work. We also recommend that the forthcoming merged inspectorate for health, social care and mental health adopt a human rights framework for all its work.

185. Similarly, we very much welcome what CSCI said about the organisation's approach:

The human rights legislation […] underpins a great deal of the values which we certainly hold and the people who we inspect on behalf of hold as well. From an inspectorate's point of view, it means that we are able to raise the profile of the issues which are in the articles of the legislation […] this adds extra impetus and extra weight […] We think that [it] empowers service users […] gives them effective feedback, and to have it in a human rights context is even more powerful."[251]

186. CSCI has, however, missed opportunities to reinforce these important points. The recently published annual report on the state of social care makes only one reference to human rights in the whole report (in relation to the human rights of carers). [252]

187. In their submission, CSCI said, "we have […] adopted a human rights approach to our work."[253] The Residents & Relatives Association, however, were of the view that "inspectors have not, it appears, been trained in adopting this [human rights] approach."[254]

188. Gaps in implementation of a human rights approach throughout both organisations' work remain, although we believe both bodies are genuinely committed to such an approach. In our view, lessons can be learned from the more systematic approach pioneered by the Mental Health Act Commission (MHAC). We are aware of the recent publication on implementing human rights by the MHAC in partnership with the Department of Health and what was then the Department for Constitutional Affairs. MHAC state that their purpose was to "[…] incorporate a human rights framework fully in the work of the MHAC, so that it becomes a recognised part of regular activity across the organisation."[255]

189. The MHAC publication contains accessible and practical information on the steps that it took to complete the project and it identifies what people working within the commission learned from it. We are encouraged by the fact that the MHAC is to be merged with the Healthcare Commission and CSCI and urge that the highest common denominator should prevail. We recommend that the forthcoming merged inspectorate for health, social care and mental health adopts a human rights framework with the intention that the framework informs all of the inspectorate's work and so makes it more effective in fulfilling its statutory duties.

190. We are impressed by the Audit Commission's 2003 report on compliance with the HRA across a range of public bodies including the health services. In our opinion, there would be value in a similar exercise being undertaken again. We recommend that the newly established health and social care inspectorate surveys providers of health and social care services and reports on their levels of understanding of and compliance with the Human Rights Act within three years of the new commission starting operations.

National Institute for Health and Clinical Excellence (NICE)

191. NICE is responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health. It produces guidance in three areas of health, one of which is clinical practice, described as the appropriate treatment and care of people with specific diseases and conditions within the NHS.

192. In their evidence, NICE note that they have taken advice from their lawyers, and that their procedures are human rights compliant, paying particular attention to equalities. They also state that human rights allegations (through NICE's appeals process) are "not common" and "it is less common still for the appeal panel to agree that the [human rights allegations] should be upheld, but the mechanism is in place to detect and respond to any infringement of the HRA".[256] Although these statements may be accurate, they do not, in our view, reflect a complete understanding of the responsibilities of a public authority under the Human Rights Act.

193. In particular, we are not convinced that NICE are fully taking human rights into account in their decision-making. For example, the Social Value Judgements Guidelines,[257] which describe how NICE incorporates social value judgements into the development of its guidance and the principles that should be applied when developing individual items of guidance, make no mention of human rights. Age Concern told the Committee:

    There is not any evidence that NICE takes human rights into consideration at all in the work we have seen […] and the directions that set NICE's work, and also in the frameworks that they have developed. There does not seem to be any recognition there that human rights are part of their responsibility or any demonstration of how they might have been applied in their work. Certainly, when they did their work about social value judgements […] that would have been an ideal place in which to raise the issue of human rights and how they might be used and developed in NICE's work, but it was completely absent from that work.[258]

194. In their consultation on draft guidance on dementia, NICE refers to the ECHR and some of the related Articles in general terms, for example "Article 2 asserts that everyone has the right to life".[259] There is, however, no reference to NICE's responsibility to consider these rights as part of their duty as a public authority under the Human Rights Act.

DISCRIMINATION ON GROUNDS OF AGE

195. The National Service Framework for Older People requires that "NHS services will be provided, regardless of age, on the basis of clinical need alone."[260] Although this requirement governs the provision of all NHS services, NICE's function is to make what are usually difficult decisions about the availability of treatment in a context of competing needs and finite resources. Quality Adjusted Life Years (QALYs) were developed by health economists to measure preference for treatment and for the last eight years have informed NICE decisions. They include two basic components: quality and quantity of life. Several witnesses[261] were concerned that the use of this measurement was inherently disadvantageous and discriminatory for older people. For example, Philip Hurst of Age Concern told us that QALYs:

    […] appear to us to be age discriminatory in the sense that by definition older people will have fewer years to live and therefore the cost of each life year is inevitably higher. In the way that NICE works, that would work against older people.

    Chairman: Can that be justified in any circumstances?

    Mr Hurst: If you do use QALYs at all, you have to use a range of other measures to balance out against those but QALYs seemed to rule in terms of the NICE decision-making."[262]

196. NICE, however, in their evidence state that "[…] in practice, we have found that estimates of the cost per QALY can be advantageous to older people […] Older people would only be potentially disadvantaged by QALYs in the event of a hugely expensive, curative procedure whose benefits were lifelong."[263] During oral evidence, the chief executive of NICE told us quite categorically "I have no experience of QALYs acting in a way that disadvantages older people."[264]

197. The controversy about the effect of the use of QALYs has now reached the court room. During 2006 NICE made a decision that drugs for use by people with Alzheimer's disease were not cost-effective for those in the 'mild' stages of the disease, changing its previously published guidance. This decision has been judicially reviewed on the application of the drug company Eisai, the licence holder of donezepil, the drug affected by this decision. Their application is backed by Pfizer, who manufacture the drug, and the Alzheimer's Society. The case falls within both Houses' sub judice resolutions and therefore the merits of it cannot be explored by this Committee.

198. Regardless of the court case, we would be reluctant in any event to comment on whether the use of QALYs does or does not adversely discriminate against older people and whether in the latter case such discrimination can be objectively justified. This is because it is a complex issue and we did not take sufficient evidence on the subject. In any event, each case needs to be looked at on its own merits. The point that we think needs to be made, however, is that NICE, as a public authority under the Human Rights Act, needs to refer explicitly to relevant Articles of the ECHR such as Article 2 (right to life) and Article 14 (freedom from discrimination) in the context of its decision-making and its legal duties. We recommend that the National Institute for Health and Clinical Excellence demonstrates in all relevant publications that, in its decisions on clinical practice, it has expressly taken into account the Convention rights of any patients who may be affected, as required by the Human Rights Act.

199. We consider, in the next Chapter, the extent to which staff have a role to play in ensuring the promotion and protection of the human rights of older people in their care.


235   Ev 177. Back

236   Healthcare Commission, Commission for Social Care Inspection and the Audit Commission, Living Well in Later Life, 2006, p 7. Back

237   Chancellor of the Exchequer, Budget Statement, 16 March 2005. Back

238   Department of Health, Standards for Better Health, 2004, updated 2006. Back

239   IbidBack

240   Ev 150. Back

241   Reported in Butler, F., Improving Public Services: Using a Human Rights Approach, IPPR, 2005. Back

242   Q 101. Back

243   Q 102. Back

244   Department of Health, Care Homes for Older People - National Minimum Standards, 2002, 3rd edition 2003. Back

245   Ibid, p 6. Back

246   Ibid, p 11. Back

247   Q 159. Back

248   Ev 171, para 8. Back

249   Ev 146, para 3.2. Back

250   Ev 146, para 3. Back

251   Q 164. Back

252   State of Social Care 2005-06, op citBack

253   Ev 176. Back

254   Ev 193, para 5. Back

255   Mental Health Act Commission, Making it Real: A Human Rights Case Study, 2007. Leaflet on Making it Real, p 2. Back

256   Ev 205, para 2.4. Back

257   NICE, Social Value Judgements: Principles for the Development of NICE Guidance, December 2005. Back

258   Q 48 [Mr Hurst]. Back

259   NICE, Supporting People with Dementia and their Carers, Consultation, May 2006. Back

260   Department of Health, 2001. Back

261   Royal College of Physicians in Edinburgh; Royal College of Nursing; Help the Aged; Age Concern. Back

262   Qs 51 and 52. Back

263   Ev 207-8, paras 4.7- 4.8. Back

264   Q 184. Back


 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2007
Prepared 14 August 2007