Regulation

Summary

People with dementia are often recipients of health and social care services and form a core group of service users. The quality of health and social care services can have a profound impact upon the lives of people with dementia and carers. People with dementia can be more vulnerable to poor treatment because of the symptoms of their dementia, which may mean they are less able to assert their rights or make a complaint. This makes the role of regulation particularly important in assuring high quality care for people with the condition.

There have been widespread failures across health and social care to deliver high quality dementia care. This must not be tolerated. Given the growing number of people with dementia and the high priority attached to making improvements in dementia care, urgent action is needed now. The regulatory system is a vital part of the whole systems approach that is needed to drive up the quality of care for people with dementia.

1. Background

Alzheimer's Society estimates that there are 800,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2021 and 1.7 million by 2050. People with dementia are a core group of users of health and social care services:

Two thirds of care home residents will have a form of dementia
Up to one quarter of hospital beds are occupied by people with dementia aged over 65 years at any one time.
Two thirds of people with dementia live in the community.
One third of people with dementia live in care homes

Despite dementia care being a core role of health and social care services, there are widespread failures by health and social care to deliver high quality care that meets the complex needs of people with dementia, as explained in our public position statement on formal care. For example:

Despite improvements in the performance of care homes against national minimum standards, there is continuing variation in performance depending on care home size (CQC, 2011)
Continuing evidence of a need for significant improvements in hospital ward environments, staff training and the overall approach to care delivery for patients with dementia (Royal College of Psychiatrists, 2011; Older People's Commissioner for Wales, 2011; Alzheimer's Society, 2009).
Home care commissioning practices that give more weight to cost than to an acceptable quality of care, and cases of chronic disregard for privacy and dignity, inadequate support for people to eat and drink, as well as examples of physical and financial abuse (EHRC, 2011)

Such widespread failures are unacceptable. The quality of health and social care services can have a profound impact on the lives of people with dementia and their carers. Both the continued failings to deliver good quality care and the increasing numbers of people living with dementia underline how effective regulation of quality of dementia care must be at the heart of the regulatory system.

2. Current regulation and regulators

A robust system of regulation is needed to ensure that service users are protected from poor treatment and abuse and harm, and are provided with care that is safe and promotes their dignity. Impairments in capacity caused by dementia can make people with dementia more vulnerable to poor treatment and less able to make a complaint when something does go wrong. It is vital that there is swift action to identify and act on these failures to ensure that poor quality care is eliminated.

In the UK, there are four main regulators of health and social care services:

In England, the Care Quality Commission (CQC) has regulated all health and care services since May 2009. Alzheimer's Society welcomes the commitment CQC has made to improving dementia care by joining the Dementia Action Alliance and creating an action plan on dementia.
In Northern Ireland, health and care services are regulated through the Regulation and Quality Improvement Agency (RQIA).
In Wales, health services are regulated through Healthcare Inspectorate Wales (HIW) and social care services regulated by Care and Social Services Inspectorate Wales (CSSIW).

Not all services are regulated in all instances, but typically care homes and hospitals fall under the scope of regulation. Many home care services are also regulated, but there are instances, for example when a person organises their own care, when services do not have to be regulated.

Alongside concerns about quality of services, several issues with regulators and the regulatory systems have been identified. The case of Winterbourne View identified severe failings in the regulation of care homes and a report by the Public Accounts Committee's report on CQC (March 2012) concluded that to date the CQC has been poorly led and governed and has failed to fulfil its role effectively. Shortcomings include a failure to act quickly on vital issues, such as information from whistleblowers, and a lack of consistency in the judgments made by individual inspectors and CQC's approach to taking enforcement action. Concerns around the financial stability of providers and the scope of regulation to assess this were highlighted by the collapse of the care home operator Southern Cross and the severe distress this caused many residents and their families. Furthermore, criticism has been levelled that regulators do not effectively police the commissioning of services, such as home care, where commissioning practices have a significant effect on the quality of care provided.

3. What people with dementia should expect from the regulatory system

Alzheimer's Society believes there are a number of key principles which should be expected from regulation:

A regulatory system with sufficient resource and powers to drive up quality

The regulators will not be able to drive improvements in quality unless they have sufficient resources and powers to do so. Recent events have suggested that this is not the case: in 2010-11 CQC reduced the number of inspections they conducted by 70% so that they could divert resources to meet deadlines for registrations. This is unacceptable; inspection is a vital part of understanding the care provided to people with dementia and must be an integral part of any review system. Even in 2011/12 when CQC managed their resource so that they could meet their inspection targets, Alzheimer's Society continued to hear examples of poor quality care. It is clear that if the regulators are to focus on quality improvement across the health and social care sector, as opposed to enforcing actions against the worst providers, the regulators must have additional resources to enable them to deliver change.

A focus on continuous quality improvement

The need to support quality care must be the priority for health and social care regulators. Alzheimer's Society believes that a focus on adherence to essential or minimum standards does not do enough to promote high quality or personalised care. The growing number of people with dementia, the seriousness of the condition, the cost it imposes and the widespread poor standards of care mean that there is a need for the regulators to particularly focus on improving the quality of dementia care. The personalisation agenda promises transformation for those using social care services, but the experience of people with dementia continues to be mixed. Standards for care providers must be sufficiently robust that they promote and incentivise high quality dementia care, rather than minimum standards.

In response to the Prime Minister's Challenge on Dementia, ten leading care home and home care providers have created a Dementia Care and Support Compact setting out their commitment to deliver high-quality relationship-based care and support for people with dementia. Alzheimer's Society would encourage all care providers in England to sign up to their compact, and for similar sector-led commitments to improve the quality of dementia care in Wales and Northern Ireland.

Furthermore Alzheimer's Society believe that local authorities are in a key position to drive up standards through their commissioning practices. This is particularly important for home care services, where regulation and inspection may be less effective at monitoring compliance than it is for care homes.

EHRC (2011) have found that too often local authorities take a 'time and task' approach to commissioning, with a lack of focus on outcomes for users of services, or of promoting and protecting their human rights. This affects the quality of services that are commissioned. Similarly, the UKHCA Commissioning Survey (2012) found that three quarters of care providers said that over the previous 12 months the councils they work with had become more interested in securing a low price than a quality service. The current economic climate and the crisis in funding for social care means that commissioners may be more likely to make decisions based on price.

As there is no independent regulation of social care commissioning, the regulators can only take action on the services that result from poor commissioning practices, rather than on commissioning itself. The Society believes that given the central importance of commissioning, the regulators should oversee this function as a part of essential standards for registered services. Regulators should also promote commissioning for quality, including use of tools such as Alzheimer's Society's Contracting for quality guidelines for care homes.

Transparency

Public information about the quality of health and social care services is fundamental for people to make informed choices about their care and to have confidence in the care system. People with dementia and their carers often say they find it difficult to access such information. Regulators of health and care services have a key role to play in publishing information about the regulation and quality of services, including inspection reports. This information must be made easily accessible and available in a range of formats. This greater transparency would help to build public confidence in care services and the ability of the regulators in England, Wales and Northern Ireland, to ensure that services are of a high standard.

In particular, the public need more detailed information to enable them to make informed choices about care services, particularly care homes. At the current time there is a lack of indicators of excellence or good practice, other than compliance with minimum standards. This does not allow a service user to understand the differences between the quality of care provided by different services, and therefore does not support informed choice. The ratings system previously provided by CQC was useful in this respect, however it failed to provide an accurate assessment of the quality of care. For example, there have been cases publicised by the media where despite an excellent rating, mistreatment and abuse occurred. Alzheimer's Society believes that the regulators of care homes in England, Wales and Northern Ireland should consider new ways of providing public ratings for care homes. These must:

give a complete picture of the quality of a service, including the quality of dementia care, to enable people to make informed choices
be developed in partnership with residents and families
incorporate feedback from residents and families
be easy to understand
be publicised and made widely available

Regular inspection

Inspection is a vital part of understanding the care provided to people with dementia, particularly in a care home setting, and is a key way to see what life for service users in a care setting is like and understand the quality of dementia care being provided. It is vital that inspectors use techniques such as the SOFI observational process, so that the real-life experiences of people with dementia can be understood. The EHRC 2012 human rights review has highlighted that better inspection of all care settings is needed to ensure that people who use health and social care services are not subjected to inhuman or degrading treatment (Article 3 of the Human Rights Act). Alzheimer's Society believes that inspection must be an integral and frequent part of any review system. This must include unannounced inspections.

Given the number of people with dementia who are accessing health and social care services across a range of settings, it is vital that inspectors and assessors carrying out inspections have an understanding of dementia and other key issues such as the Mental Capacity Act. Training in these areas must be a priority for all inspectors and assessors and such training should involve people with dementia and their families themselves.

Alzheimer's Society believes that statutory lay monitoring of care settings has the potential to support the work of the regulator and drive up standards of care, in particular in care homes. This could build on existing models for public involvement in health and social care, such as Healthwatch or Community Health Councils. While there are specific challenges to conducting lay monitoring in health and social care, the model could draw on learning from other models, such as the Independent Monitoring Board system used in prisons. Such a model will require statutory powers if it is to function effectively. There needs to be an open debate about the best way forward, and piloting of models to develop evidence about what might work best in practice. However it is clear that lay monitoring holds great potential to provide ongoing scrutiny of care quality and facilitate quicker reporting of failings.

Effective and robust enforcement

When prescribed standards are not met, there must also be rapid responses to prevent harm and to ensure public faith in the regulatory system. By the time that inspectors have detected problems poor practice may have already become established, so it is vital that there is quick action to address this, and minimise the harm to recipients of care services and give support to services to make improvements. Early intervention, through the use of penalty notices and suspension of registration, can be effective in avoiding crisis situations, such as emergency admissions to hospital or into long term care. The regulators must have the capacity and resources to intervene earlier and to report to the public on enforcement actions, as this is integral to building faith in the regulatory system.

Involvement in regulation

People who use services are the experts in how well a service addresses their needs and their feedback must be at the heart of any assessment or inspection of services. Regulation should be based on the outcomes which most matter to people with dementia. This should include consideration of how services support their independence, quality of life and opportunities for social interaction, as well as assessment as to whether good quality dementia care is practiced. The former regulator of social care services in England, CSCI, found that even services that had been assessed as performing well may still not be provided good quality dementia care.

In addition, regulators must empower and encourage service users to feed back information about quality of services and should do so in an inclusive way through a variety of media, either directly to the regulators or via independent bodies, such as Healthwatch.

Services that are financially viable, particularly care homes

The failure of Southern Cross has highlighted that there are no formal mechanisms for dealing with the failure of a large service provider (NAO, 2011). When a provider fails there can be a big impact on service users, as well as their families, particularly in the case of residential care. People with dementia may find any changes hard to adjust to, particularly if their dementia is advanced and they have to move from one care home to another. In areas where there is a shortage of alternative providers who can easily and at similar cost provide the same quality of care, sudden failures can leave people with no access to the care they need. Alzheimer's Society agrees with the NAO's recommendation that there must be further arrangements at both a national and local level to protect users from provider failures. This could include a role for regulatory bodies in monitoring the financial viability of service providers. Consideration should be given to the feasibility of extending Monitor's duties to include registered social care providers.

4. Alzheimer's Society campaigns for:

A regulatory system that incentivises good quality care and acknowledges that dementia care is a primary role of the health and social care sector
Inspection to be an integral part of the regulatory system, including unannounced inspections
Involvement of people with dementia and carers in the regulators work, including in inspections, in models of lay inspection and in shaping the work of the regulators
Strong action by the regulators when there are failures to meet service standards and risks to service users including use of enforcement powers with a particular focus on early intervention in care homes
Information that is easily accessible in a range of formats to give people an adequate way of judging care quality