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"Complaining is a Right - Not a Symptom. " (21.05.2004)

Address by Emily O'Reilly (Ombudsman) at Mental Health Ireland Annual Conference

Introduction

At the outset I would like to say how pleased I am to be speaking to you this evening.

This conference comes at a very important time in the history of the Irish health services in general, and the mental health services in particular. It is a time of great change. The public, generally, is becoming more demanding in all areas of the public health services. A momentum towards individual accountability is being fostered by Government and this is being driven by ever increasing media attention on the inter-action between the health services and individuals or classes of individuals.

The national health strategy Quality and Fairness - A Health System For You has considerable implications for my Office. The strategy confirms the Government's belief that my Office is the appropriate mechanism for dealing with complaints relating to the public health system as a whole, and also confirms the Government's intention to extend my remit to the public voluntary hospitals and other voluntary agencies in the health area. The strategy also provides for the development of a statutory framework for complaints designed to achieve greater clarity and uniformity of approach in dealing with complaints, structured local resolution processes as well as an opportunity for independent review. In this regard I have to say that I am very disappointed at the lack of progress in bringing forward this legislation to date. The strategy has also identified, as meriting particular attention, the perceived inability to question the actions or decisions taken by individual practitioners in regard to clinical matters.

By virtue of the provisions of the Ombudsman Act I am precluded from examining complaints which relate to the exercise of clinical judgement in the care or treatment of a patient. Whilst acknowledging the need for freedom in exercising clinical judgement, the Government has equally accepted the need for a stronger framework for questioning and investigating clinical decisions in particular circumstances. The strategy envisages, for example, that proposed legislation on the statutory registration of health professionals will contain machinery for the investigation of complaints against individual professionals.

I hope to bring to my position as Ombudsman - and particularly in the area of healthcare - not just my own professional experience of reporting the social, cultural and political life of this country for almost twenty years, but also my own life experience as a woman, as a mother of five young children, as the daughter of two now elderly parents and therefore as someone with regular,

personal contact with the health services right though from maternity provision, paediatric care, the dental services, cancer care, the care of the elderly and also, on rare occasions thankfully, acute emergency care. You will notice that I have not included the mental health services in this experience and, so far, I have been very fortunate in this regard given the extent to which Irish people suffer from mental illness. Dr Fiona Keogh, Research Psychologist, estimates that between 20% and 25% of the population (between one in five and one in four people) will be affected by a mental health problem. These problems affect individuals from all walks of life, men women and children, in urban and rural environments. One in four families has at least one member currently suffering from a mental or behavioural disorder. That amounts to over 700,000 people in Ireland, a truly staggering figure The costs on the individuals and their families can only be imagined, and not just in monetary terms.

While I was preparing for this presentation, two aspects in relation to mental illness struck me forcibly. The first was the issue of stigma. There are usually no outward signs that an individual may be suffering from a mental health problem. The stigma which still attaches to mental illness in Ireland is very pervasive and operates so as to keep mental health problems hidden. This has a widespread negative impact on the willingness of people to acknowledge mental health problems, with subsequent difficulties for early diagnosis and treatment. In effect it acts as a barrier to the utilisation of available services by people with mental illness or their families. Public attitude supporting this stigma flows from the lack of awareness and misconceptions about the nature of mental illness and there is obviously a great deal of work to be done in raising public awareness as to the nature and extent of the illness. The second issue is the increasing problem, some would say epidemic, of alcohol abuse. Such abuse is increasingly recognised as an escalating problem. Ireland now ranks second in Europe for per capita consumption of alcohol. The social and mental health consequences of alcohol misuse are well recognised, as is the contribution of alcohol consumption to high suicide rates in young men. I believe that the manner in which we deal with this problem will define us as a society for generations to come.

Mental Health And The Right To Complain.

The United Nations has published a set of principles for the protection of persons with mental illness and for the improvement of mental health. These principles relate to issues of fundamental freedoms and basic rights ( Principle 1 ) to the effect that all persons with a mental illness, or who are being treated as such persons, shall be treated with humanity and respect for the inherent dignity of the human person, and to complaints ( Principle 21 ) to the effect that every patient and former patient shall have the right to make a complaint through procedures as specified by domestic law.

In Ireland, in the past, providers of mental health services may have considered complaints as irritants interfering with their normal work and/or as criticisms of their decisions against which they had to defend themselves. While there is greater emphasis nowadays on improving the quality of service, the standards of service provided for the users of the mental health services are set by the providers themselves and they also devise the systems and procedures for achieving these standards. The effectiveness of these procedures and the relevance of the standards set can, however, be judged or assessed properly only by reference to the very people, the users/patients for whom the service is provided. A good internal complaints system is essential in maintaining the confidence of such users and patients. A good system should be:

• Accessible
• Simple
• Speedy
• Fair and Independent
• Confidential and Impartial
• Effective and ...
• Flexible

Hurdles to making a complaint in relation to mental health

Notwithstanding the foregoing there is a perception by patients that complaining about mental health services might well prejudice treatment from other professionals in the health service. Difficulties also arise when patients have problems articulating their views or are themselves incapable of making decisions. Complaints concerning mental health services are often difficult and complex, consequently they require an extra degree of sensitivity and usually a greater input of staff time.

There are numerous hurdles for users of mental health services to lodge a complaint. It is very important that these factors are taken into account by the individuals dealing with complaints from users of the mental health services.

Perceived credibility of complainants

Complainants may not be believed for a number of reasons:

• their thought processes may be seen to be, or may actually be, disordered or otherwise impaired. Accounts of events provided by a complainants may be perceived as the product of an impairment rather than having a basis in reality. Complaints from people with mental illness are often not recognised or may be disregarded or dismissed as a symptom of illness.;
• they may have a history of making numerous complaints resulting in service providers paying inadequate attention to their complaints;
• they may be perceived as less credible than service providers leading to premature conclusions;
• their perceived motives for lodging a complaint may undermine appropriate complaint handling processes;

In my opinion there is no place in complaints management for premature and uninformed judgements on the credibility of complainants or the validity of the complaints.

Power imbalance

Users of general health services may not complain because it may strain the relationship with their health provider or they may fear adverse responses from their health provider. For users of mental health services this perceived barrier to lodging a complaint may be very much greater because:

• the long term relationships with services providers increases the development of dependencies;
• there is little or no choice of service providers involved in the persons care in the public sector;
• the control service providers exercise in certain environments, for example, hospitals and supported community accommodation;
• the ability of service providers to influence other peoples opinion of the complainant;
• the reliance on service providers to provide support and access to community services;
• the difficulty of some consumers to express themselves assertively;

Poor awareness of patient rights and standards of service

Users of the mental health services may not know what standard of service to expect, or have an understanding of their rights. In the absence of such information they may not know when they have grounds for making a complaint. They may not be aware of options for raising complaints, for example, how complaints are made, who to speak to about a concern or complaint and what options exist if they do not want to complain at the local level.

Fear of rejection

Individuals with a mental illness may fear their concerns will not be taken seriously because they do not fully understand medical terminology, the health system or treatments. Concern with their ability to communicate may also inhibit raising complaints or concerns. In some situations users of psychiatric health services may feel uncomfortable about being identified as the complainant. It is important that complaints lodged by community groups and advocates are accepted as valid and given due consideration.

Strategies to overcome these hurdles

Providers of mental health services and those providing service to people with a mental illness or psychiatric disability should consider the following strategies when dealing with complaints:

• the greater use of advocates to assist consumers to formulate and voice their complaints. For providers of mental health services and those generalist services dealing with users who have mental illnesses or psychiatric disabilities it is important that staff are aware of the particular difficulties facing those consumers when they wish to complain. The use of an advocate either from within the hospital or from an independent body should not be seen as an escalation of the complaint but rather as a means of facilitating local resolution. The availability of a trained advocate early in the complaints process can often ensure that the issues are clarified both for the consumer and the service provider. It may also allay the consumers potential fears about making a complaint and assist them to understand and contribute to the complaints process. However, advocacy services are not a substitute for a complaints procedure and should not be utilised to deflect potential complaints. I would like to see the development of the role of an independent patient advocate, facilitating the patient's movement through the process, matters concerning treatment, therapies, medications, social welfare benefits, family relationships and domestic concerns;
• specialist training of staff to foster a positive complaints management culture;
• appropriate supervision and support for staff and managers in implementing complaint management guidelines;
• guidelines should include provision for monitoring the implementation of complaint management guidelines;
• management support and leadership for the development of suitable policies, the provision of staff education and the monitoring of complaint management system;
• provide the users of mental health services with accessible information on the complaints system, how to lodge a complaint, how to access advocates and service standards. This information may need to be provided periodically depending on the nature of their illness or mental status.

Everyone in a health organisation, at all levels of staff, needs to be firmly committed to the right of consumers to complain, either directly or through a family member, guardian or other representative. Complaints should be approached as an opportunity rather than as a problem. The process by which complaints are investigated and resolved should be transparent and accessible to the public.

Culture

I am firmly of the belief that the foregoing strategies can flourish in organisation with a strong suture of dealing with complaints. Culture manifests what is important, valued and accepted in an organisation. It is not easily changed when it is deeply held, and not susceptible to change by a pronouncement, command or an emotionally laden description of a new vision. Most of us instinctively regard complaints as unpleasant and not something to be welcomed, because they are a very personal comment on performance. In the mental health context once the word complaint is used there is always the danger of a personal and usually negative reaction. There may be a sense of fear and hurt, concern about reputation, distress at the lack of understanding of action and motives, and vulnerability. Worry, surprise, annoyance, anger, disappointment, anxiety and distress are amongst the most common reactions cited by health professionals. Clearly, there may be a fear that complaints will have a significant and lasting impact on those to whom blame is attributed. The challenge to the professionals expertise may be construed as greater than the content of the particular complaint, resulting in an almost symbolic resistance to such challenge. Responses can, and do, exacerbate a complainant's sense of grievance by appearing defensive, using technical language, commenting on the failure of complainants' attempts to manage illness, casting doubt on the complainants' account by labelling them a 'bad patient' and arguing that dissatisfaction is a symptom of the illness being treated.

My experience to date as Ombudsman has been that complaint handling in the acute hospital setting is very much dependent on the goodwill and co-operation of medical staff. With certain exceptions I have rarely found that health professionals, particularly doctors and consultants, engage wholeheartedly with patients' complaints. In some cases complaints are seen as a consequence of irresponsible dissemination of information by the media. This, when allied to a reluctance by patients to complain, usually because they are very dependent on the system, makes for a very unsatisfactory situation. Complaint handling is invariably seen by medical staff as very much a matter for the administrators, even though the kernel of the complaint might well involve particular doctors or consultants. In addition, in the absence of the proposed statutory complaints framework, there are no procedures which oblige them to engage fully in the process. I am unable to comment, yet, in this regard in relation to the mental health services.

The other end of the cultural spectrum is one where the satisfactory resolution of complaints is seen as a very important objective and information generated by the complete process is valued. In this culture staff are adequately trained, and supported, with complaints investigated promptly and with authority.

The culture of healthcare organisations is set by the chief executive together with senior clinical and professional staff. It is essential that they view the handling of complaints and patient safety as an integral part of clinical governance and risk management. My understanding of clinical governance, is that it is about using information so as to manage processes in a way which will ensure the effectiveness and safety of clinical outcomes. Information may come from clinical audit, untoward incident reporting, risk management and complaints procedures. This can lead to the systemic identification, treatment and evaluation of risks, incidents and near misses with consequent learning from the lessons observed.

The culture must reflect the fact that they are accountable for their performance and that their management processes are increasingly open to scrutiny by the Government, the general public and, indeed, the media. This accountability and openness extends to how it handles complaints, and this, in turn, requires that staff are adequately trained to deal with complaints and supported in the event of a complaint being made against them. Ideally training in handling complaints should be a compulsory part of induction and continuing education. The acceptance of regular reporting on the complaint handling process would also feature prominently in this culture, not merely as a record of the number of complaints received without any adequate analysis or comment, but rather with a view to monitoring arrangements for complaint handling, considering trends in complaints and lessons which can be learned.

Some examples of the presence of such a culture

Local resolution

I should say at this point that we get only a handful of complaints from general hospitals and hardly any from the psychiatric hospitals - a fact in itself which underlines the worrying absence of a complaints culture in the health sector generally. My officials tell me that in the last five years, less than a dozen complaints have been received from the mental hospitals within our remit. I'm going to outline one such case, but the other examples are taken from abroad.

The complainant had a long history of acute psychiatric illness, had spent years in hospital and continued to attend as an out-patient. Following a period of illness she contacted the Department of Social Welfare about her Disability Benefit while she began part-time rehabilitative employment on a Community Employment Scheme. There then followed a series of bureaucratic actions, claims and counter claims, the net result of which was to leave her without her full entitlement of benefits and unable, because of the vulnerable position she was in to sort out a highly complex set of rules and regulations in relation to her entitlements.

When a complaint was made to my office, we are able to point to improper administrative actions on the part of the Department of Social Welfare and succeeded in having the full entitlements paid, plus an additional payment as compensation for the loss of purchasing power.

I am grateful to the Health Care Complaints Commission of New South Wales for the following examples of complaints handled within a good complaints culture.

A patient in a psychiatric hospital complained to a nurse that she had received incorrect medication. The nurse informed the nursing Unit Manager of the complaint. He clarified the concerns with the patient and raised the matter with the nurse who gave the medication to the patient. It was found that the correct medication had been given according to the medication sheet. It was noted, however, that the medication had only commenced that day and the patient was not aware of the change of medication. The prescribing doctor was advised of the situation and acknowledged that he did not explain to the patient that she would no longer be taking her usual medication because of the side affects.

The doctor and Unit Manager provided information to the patient who was satisfied with the explanation. The Unit Manager recorded the nature and outcome of the complaint for reporting to the Director of Nursing Services and for discussion at the next Unit staff meeting.

The assistance of an advocate

A patient of a district hospital psychiatric unit complained to staff that he was spending too much time in seclusion. He was not satisfied with the information provided by staff. He obtained the assistance of an advocate who spent time with the patient to clarify his concerns and discuss possible ways to deal with them.

The Nursing Unit Manager was asked to make a list of dates and times the patient was in seclusion. When the patient saw the list he wasn't convinced the information it contained was accurate. The consumer consultant arranged access to his medical records with the Unit Manager and treating doctor. The records showed a larger number of occasions of seclusion than were noted on the list supplied earlier by the Unit Manager.

The treating doctor and Unit Manager agreed to review the circumstances for which seclusion was considered appropriate and to meet the following week with the patient and consumer consultant. The patient was satisfied with the outcome.

Resolving an anonymous complaint

An anonymous complaint was received in a psychiatric hospital. The writer alleged that he was prevented from taking vitamin D supplements by hospital staff and reported that he had been taking the supplements for over 6 months and was found to be helpful.

The complaint was brought to the attention of the medical director who referred the matter to the hospital's drug committee for review and report. The report from the drug committee noted that vitamin D in large doses may be detrimental. The medical director agreed to raise the issue with medical staff and emphasise the need to explain decisions and to consider reducing the dose of vitamins if considered detrimental, rather than withdrawing them from the patient.

By contrast I would like to outline a couple of examples where it is very obvious that such a culture did not exist within the health providing organisations involved. These examples come form a submission by the National Schizophrenia Fellowship on the reform of the NHS complaints procedure:

Bob was thirty two and had been diagnosed with Schizo Affective Disorder. When he relapsed he could not be admitted to his usual psychiatric unit because no bed was available. While being transported to a different hospital he escaped from the ambulance and had to be retaken by ambulance staff. Shortly after being admitted he escaped form the ward and had to be restrained in the hospital grounds. He was subsequently left alone in a room and soon afterwards was found to have hanged himself. His parents complained about poor communication, inadequate risk assessment and insufficient observation. They wanted an explanation for their sons death , an apology and some assurance that the relevant procedures would be improved. It took five years before the complaints procedure was completed and an apology given.

Caroline was diagnosed with Obsessive Compulsive Disorder and spent a lengthy period n a secure unit. She claimed to have been assaulted by a nurse and that her clothing was damaged in the process. It tool two years for the complaints procedure to arrive at the position top produce a denial that the assault took place.

I have to say that, in my opinion, the delays in both of those, are examples of maladministration on a completely unacceptable level.

The Immediate Future

Some issues are of immediate concern to me among them being the proposed disability legislation, the National Standards for Disability Services and my relationship with the new Mental Health Commission and the Inspectorate of Mental Health Services

Disability Bill

I know that many of you are keenly awaiting the publication of the revised legislation on the rights of the disabled. I understand that it is envisaged that my Office will have some role in relation to the investigation of complaints and the provision of redress under the legislation. I have expressed the view that the legislation should reflect the need for adequate complaints procedures which should be devised and published by the public bodies which will have responsibilities for the implementation of the provisions of the legislation.

National Standards for Disability Services

The National Disability Authority and the Department of Health and Children are currently preparing national standards which will apply to disability services for children and adults with a autism, intellectual disability physical and /or sensory disability, funded by the Department and provided by statutory and non statutory agencies. I have suggest that they consider a standard to the effect that such agencies accept that good complaint handling is an integral part of the care delivered to service users and, to this end, have a robust and effective complaint handling process in place, which is subject to audit under a monitoring process. This in my opinion would assist greatly in the development of a rights based approach to complaints for users of the services delivered by those agencies.

Relationship with Mental Health Commission and Inspectorate of Mental Health Services

The primary function of the Mental Health Commission is to promote and foster high standards and good practices in the delivery of mental health services and to ensure that the interests of detained persons are protected. the primary function of the Inspector of Mental Health Services is to visit and inspect all approved centres at least once a year. Regulations will be made specifying the standards to be maintained in all approved centres and these will be enforced by the Inspector. It is clear that these functions include many areas which may be to subject of complaint. In order to achieve clarity in this area, and to ensure that users of the services are facilitated in making complaints if that is what they which to do, I intend to meet with both bodies in order to agree a memorandum of understanding in relation to these issues. In this way we can facilitate the removal of some of the hurdles to which I referred earlier. I am aware that an immediate priority for the Commission is the commencement of Part 2 of the Mental Health Act 2001, which deals with involuntary admission of persons to approved centres. This will provide the legal framework for the protection of the rights of these individuals. I know that preparatory work leading to the appointment of Mental Health Tribunals and the drawing up of codes of practice and other necessary protocols in relation to involuntary admissions is underway in anticipation of its commencement later this year and I would like to add my voice in promoting the commencement of this part of the legislation as an urgent priority.

Freedom Of Information

Some of you may be aware that I hold the office of Information Commissioner in addition to the office of Ombudsman. In this capacity I am of the opinion that there is considerable potential in the Freedom of Information to assist (a) those with mental health problems and their families or carers and (b) representative groups or lobbying groups active in the mental health area.

In relation to those with mental health problems and their families or carers, FOI gives such people a right to see their own personal records (educational, medical, psychiatric, psychological, social work etc.). This right should facilitate that those individuals, and/or their families or carers, in engaging in constructive dialogue with service providers and professionals from an informed position, based on having seen all the relevant records. This point is highly relevant to the establishment of equilibrium in the balance of power as between the professionals and the service bodies, on the one hand, and the patients/clients and/or their families or carers on the other hand.

I would certainly hope that the existence of FOI has affected the attitude and approach of the professionals and the service agencies. Given that records are now likely to be releasable under FOI, there is now a greater impetus towards the need to be able to explain their actions (or inactions). Generally, FOI can be said to have created a much keener sense of accountability among the professionals and the service agencies.

The advent of FOI should also be of advantage to representative and/or lobbying groups in the mental health area. The Act applies to the Departments of Finance, Health, Justice etc. as well as to the health boards and to all of the voluntary (religious) agencies involved in providing services in the mental health area. This means that the records of these bodies - finance, planning, buildings, staffing etc. - are potentially available under the FOI Act. Unfortunately, we have no hard information as to the extent to which representative or lobbying groups are actually exploiting the FOI Act. My impression is that such groups are not making much use of FOI - or if they are, we are not seeing this activity at the appeal stage.

Caution

The FOI Act does not give an automatic right of access to one's own records nor does FOI give an absolute right of access to parents or guardians seeking the personal records of people unable to act for themselves.

In relation to accessing one's own personal records, the three commonest grounds for refusing records are :

1. Section 28(3) - where release might be prejudicial to the requester's "physical or mental health, well-being or emotional condition" - though in such cases the records must be offered to an appropriate health professional nominated by the requester.
2. Section 28(5B) - where the records include joint personal information with another person and there are not grounds within the Act for releasing the joint personal information.
3. Section 26 - where the records contain information obtained in confidence from a third party (e.g. where a family member gives "collateral" history in relation to a psychiatric patient).

You may be aware of the controversy that arose earlier this year with the introduction of fees under the FOI legislation. I am not certain as yet if the operation of such "up front" fees for FOI requests and appeals is having a "dampening" effect on FOI usage in the case of representative or lobbying groups. this is a matter to which I will give considerable attention to as the year unfolds.

Conclusion

Plato's own theory of knowledge is found in the Republic, his major political work which is concerned with the question of justice, which virtue characterises society as a whole. This is to give lucid expression in his discussion of the image of the divided line and the myth of the cave. This image is of individuals chained deep within the recesses of a cave. Bound so that vision is restricted, they cannot see one another. The only thing visible is the wall of the cave upon which appear shadows cast by models or statues of animals and objects that are passed before a brightly burning fire. Breaking free, one of the individuals escapes from the cave into the light of day. With the aid of the sun, that person sees for the first time the real world and returns to the cave with the message that the only things they have seen heretofore are shadows and appearances and that the real world awaits them if they are willing to struggle free of their bonds. The shadowy environment of the cave symbolises for Plato the physical world of appearances. Escape into the sun-filled setting outside the cave symbolises the transition to the real world, the world of full and perfect being.

I wholeheartedly acknowledge and commend your work and efforts in taking the issues and problems of mental health out of the shadows and into the real world, and I look forward to working with you along this journey in the future

Thank you for your kind attention

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