A DIFFERENT WAY OF THINKING ABOUT MENTAL HEALTH
Kathleen Lynch TD, Minister of State at Dept of Health
I don’t think I am underestimating the situation when I say that to be mentally ill in Ireland in the 19th century was extremely challenging. I recently read that in testimony given to a committee in the House of Commons about the Irish in 1817, it was stated that, “When a strong man or woman gets the complaint i.e. madness, the only way they have to manage is by making a hole in the floor of the cabin, not high enough for the person to stand up in, with a crib over it to prevent his getting up. This hole is about five feet deep, and they give this wretched being his food there, and there he generally dies.”
It is fair to say that if we are judging by those standards of care, or indeed lack of care, then things have significantly improved.
The topic we have been invited to speak on here is ‘Mental Health in Ireland: A story of neglect and now hope’. I intend to speak about conditions in the past because it is important that we do not forget where this journey began. I will also mention briefly changes in more recent years, not just in terms of bricks and mortar, but to key mental health legislation. Finally, I would like to leave you with some thoughts for the future relating to changes in approach in the field of psychiatry and mental health service delivery with a particular emphasis on the notion of recovery in mental health which I believe can leave us all feeling more hopeful about the shape of things to come.
Up to the nineteenth century there really was little in the way of care for those classified as mentally ill or destitute in Ireland. In fairness, a major shift took place in the 1800s when a system of large district asylums located around the country began to emerge allowing for the development of a custodial system of institutional care for the mentally ill and intellectually disabled on a large scale. Though well-intentioned, the establishment of institutional settings soon led to overcrowding with significant consequences for residents, particularly if individual asylums were under-resourced at the time.
By 1850 or thereabouts, there were some 3,200 individuals in asylums across the country. In a little over 60 years, this figure had increased to almost 17,000 with the population of asylums peaking in 1963 at 20,000.
Whatever about their initial years, it was not long before conditions in these large grey stone buildings with little or no heating or ventilation became distressing for some, and simply traumatic for others. Epidemics were common and individuals were often restrained with manacles while also being subjected to bizarre experiments.
A recent publication on ‘Asylums, Mental Health Care and the Irish’ mentions a popular treatment in my home town of Cork called the circulating chair. Apparently, this technique originally came from Scotland and involved a patient being placed in a chair which was then rotated at high speed, maybe 60 times a minute, to generate as the book says “a sufficiency of alarm to ensure obedience”.
One of the reasons for overcrowding in asylums was a change in the law whereby it became a lot easier to commit somebody to an asylum as a criminal lunatic, even if they had not committed a crime. This change made it far easier to get people into asylums but, as we all know, getting out was always far more complicated. Families who nowadays often act as advocates for their loved ones, very often were the ones shouting loudest to ensure their people remained confined and got the treatment the families thought they needed. This was not a healthy situation that developed as it regularly removed any imperative for the system to treat people with a view to assisting their return to their communities.
Let’s not forget also that the asylums were big contributors to the local economy in their day and, even for this interest alone, locals saw a real need to keep their doors open, often long after they had served any useful purpose. In many towns, the asylum, single-handedly, dominated the local economy. For example, in 1951 Ballinasloe had a population of 6,000 of whom over one third were patients in the asylum.
There can be an understandable tendency to equate the numbers of residents in institutional settings at any one time with the levels of mental illness in the general population and in turn to believe that our levels of mental illness were greater than in other countries. There can be little doubt, however, that the sudden availability of hundreds of asylum beds in the nineteenth century led to increased rates of presentation by mentally ill individuals – prior to their presentation, these people were not counted in official estimates of the number of the mentally ill.
Just because we effectively treated no one with mental illness prior to 1800, had up to 20,000 in asylums in the 1960s and now have less than 3,000 in long term care, it should not be inferred that people were more likely to suffer from mental illness in the 1960s. I know the Beatles and the Rolling Stones were associated with a high level of hysteria in the 60s, but that’s a very different matter.
The fact is that Ireland has the same proportion of people suffering from mental health problems as other countries, despite misconceptions. All of the large-scale studies of mental illness indicate that for core mental illnesses – schizophrenia, manic depression – rates are very steady across many countries. Ireland does not have a higher incidence of mental illness than other populations, and we never had.
Given the less than ideal conditions for in-patients at the time, there was a warm welcome for the introduction of the Mental Treatment Act in 1945 which introduced new admission procedures in addition to a range of measures designed to improve practices and standards in mental health care in Ireland. One of the aims of the Act was to stem, and if possible reduce, the ever-rising tide of admissions. However, this was to prove a more complex and challenging task that would occupy many great minds in the years that followed.
While the 1945 Act improved standards, it wasn’t until the introduction of the 2001 Mental Health Act that we saw real and substantial reform in how we dealt with those individuals who it was deemed required detention in mental health facilities. The Act removed indefinite detention orders while bringing in new involuntary admission procedures, independent reviews of detention, free legal representation, independent psychiatric opinions and establishment of the Mental Health Commission to oversee standards of care and protect patients’ interests. These were very significant changes and this Act has served us and mental health patients well over the years.
Of course, like any legislation, it requires to be reviewed in light of changing circumstances and ideas about how best to treat those individuals with mental health problems. We now have an Expert Group reviewing the Act informed by ‘A Vision for Change’, our national mental health policy, and the ‘UN Convention on the Rights of People with Disabilities’ both of which were published since the 2001 Act was enacted. The review is being carried out in consultation with service users and other stakeholders. The group is expected to produce its report by the end of the year and I look forward to that report being the basis of a new more modern and enlightened mental health legislation in the years ahead.
I have given you so far elements of a history lesson. The early part of that history of mental health care is not one any of us can be proud of, but equally it should not be forgotten. The late journalist, Mary Raftery, brought our attention very graphically to this history in her haunting documentary ‘Behind the Walls’. Watching that programme highlights far more eloquently than I ever could the inadequacies of our care of and treatment for mental health patients in times past.
In the remaining time available to me, I could speak to you about the additional €70m we are putting into community-based services in an effort to further reduce the numbers of individuals receiving in-patient care. This is an important investment and one that is seeking to modernise our model of care. I could also speak about the scourge of suicide which unfortunately rarely seems to be too far from the headlines. Both topics are ones that I regularly speak about in the Dáil and both feature in practically all speeches that I give around the country. To be honest, suicide in particular is a subject which could easily occupy the attention of a full summer school in itself.
On this occasion, however, I want speak further about the shifting emphasis we are increasingly seeing on the notion of personal recovery for individuals with mental health problems. Some wish to portray a battle on the field of psychiatry between what is regarded as the medical model of care and the emerging concept of personal recovery. This is not a winner takes all situation. On the one hand, if personal recovery is truly personal, then surely the medical model has a potential part to play for some individuals while on the other hand the medical model needs to continually move away from the notion of paternalism to ensure that the best evidence-based practise is considered but only in conjunction with the patient’s views, not to replace them. In the real world, the medical model is not divorced from the recovery approach, but we do need to work harder on getting the balance between the two right for each individual being treated.
So what do we mean when we use the term ‘recovery’? Well, as yet, there is not a succinct or universally accepted definition of recovery. In day to day terminology, we equate recovery with cure and often with a return to how things were before. However, given the tendency for some to have life-long struggles with their mental health, few of these individuals, by this definition can achieve recovery.
Recovery can sometimes be distinguished between ‘complete clinical recovery’, with total absence of symptoms, and ‘social recovery’, which means the ability to live a more or less independent life even if symptoms remain. It is the latter approach which interests me with the notion of moving towards self-definition of recovery by individuals rather than one imposed on them. What we want to see more of is a sense of personal recovery which includes how to live and how to live well in the context of long-term mental health conditions.
Adopting a recovery approach is not without its challenges. These challenges include reconsidering some fundamental concepts such as what it means to be a service delivery organisation, a professional, a person who uses services or a family member and how we judge effective treatments and supports. Despite recovery featuring prominently in ‘A Vision for Change’, published in 2006, we are still at an early stage in developing a recovery orientation.
Recovery should be seen as a natural process and as a way of growing with or despite continuing disability. There is a recognition that the problems and suffering associated with severe mental health problems are complex but that, with a recovery approach, it is possible to live well despite any limitations caused by disability or illness.
The recovery approach places a unique emphasis on the value of each person and their understanding of their illness. Common themes in recovery include the pursuit of health and wellness; a shift from pathology and morbidity to health and strengths; enhancing hope and belief in positive change; more mentoring and less supervisory supports; improving social inclusion capabilities and allowing risk-taking to replace an overcautious and very paternalistic risk assessment. While collaboration and partnership are essential, service users tell me they also want to see self-directed care given every chance. This, they believe, can lead to greater choice and control for people who use services.
People in recovery speak clearly about the value of negotiation and collaboration concerning treatment decisions with the evidence of an individual’s own personal experience given priority over general beliefs of what should work. In this context, as I have already said, treatment remains one out of many tools that can support recovery.
Those involved in treating individuals with mental illness acknowledge that managing long-term conditions is complicated, but equally more and more service users are asking their mental health professionals to acknowledge that the monopoly of wisdom is not entirely with the professionals in these circumstances, but also with service users – not just confident in their own abilities to recognise what works for them in a crisis situation but adamant that their voice must be heard where treatment is being decided for them. How such decisions are made may be as important as the decision itself.
If people with mental illness are to realise their full potential, recovery must play a part.
If we as a society take seriously the principle of equal citizenship, recovery must play a part.
And if recovery must play a part, then all of us involved, at whatever level, in the formulation and delivery of mental health services must be part of that paradigm shift.
I would not like to leave you thinking that, while mental health facilities have greatly improved over time and while I recognise that changing the way we approach mental health care is vital, the issue of funding or structures is less relevant. That, of course, is not the case. That’s where the €70m investment in our community services comes in, along with the new governance structures in the HSE which sees for the first time a Director of Mental Health appointed. Funding, governance and future changes to mental health legislation are all vital to improving services and underpin the delivery by mental health professionals to each and every service user in this country.
But equally, the vision espoused in ‘A Vision for Change’ is about being inclusive, radical and forward thinking. It is about a different way of thinking about mental health, a different sensibility towards mental illness. It is about embracing real change and this is more than about money alone. There is no room anymore for an out of date, narrow and limited understanding of mental health. Without embracing this modern and enlightened vision we will have more of the same and that is simply not good enough.