25th Annual Nursing and Midwifery Conference
“Beyond Rhetoric: nursing and midwifery knowledge and research for a new healthcare system”
Wednesday, 22 February 2006, In Royal College of Surgeons in Ireland
Opening Address “Wasting Time with People”
Alice Leahy, R.G.N. R.M. F.F.N.M. R.C.S.I. (Hon).
Director and Co-Founder Trust
I would like to thank the Faculty for inviting me to deliver the opening address at your 25th Annual Nursing and Midwifery Conference especially on a topic that is so apt at a time when many of us are asking fundamental questions such as: What is health care and indeed nursing all about? And how do we as nurses make a contribution to the debate and help create a healthcare service we should be proud to be part of and where the patient is central to our concerns?
I want to begin by attempting to address those questions because I believe nurses can be powerful advocates for change if we are prepared to speak out, especially in defense of the most vulnerable. In my own role in TRUST, which I co-founded over thirty years ago, one of the most important roles we play for the many people who are homeless we meet everyday is to act as advocates on their behalf as they have no one to speak up for them. In that sense they are the voiceless or the outsiders in our society. This is the reason for the title of my address – “wasting time with people” – because one of the most important things we make for those we see everyday is time, time to treat them as human beings. And time to treat people properly as people is the one thing that is increasingly difficult in the modern health service because time is always reduced to a quantitative or monetary value. In a health service, which is increasingly governed by performance indicators and benchmarks, based on these quantitative measures is it possible to preserve even the concept of a philosophy of caring, which means fundamentally treating people as people?
This means that the focus on patients is being lost even as more resources are being deployed because it becomes almost impossible to advocate for a philosophy of caring when the pressure is on to treat more and more people in a given time frame.
We need a human rights based approach in the sense that the most basic human right is the right to be treated as a human being and not a statistic, as the award winning South African Satirist Pieter Dirk-Uys said so eloquently.
And last year another African voice was quoted in an article in the BMJ (British Medical Journal) by Simon Challand, a Medical Adviser working in Uganda, referring to the advice an African Bishop had given him with a smile -” “Waste time with people”… You Europeans are always concerned about projects and budgets. The African does not worry about them -just waste time with people”..He gave me this advice in 1996 shortly before I came out to work in Uganda. Since then his words have kept coming back to me, and I reflect on their truth and wisdom and how difficult it has been for me, as someone with European values and attitudes, to apply them.” However, what those so far removed from the frontline in the Irish health service fail to understand is that you cannot help people without taking time to do so. Time is much more productive in the long-term because by helping people properly today they will not become a bigger burden on the system in future years and will be spared the misery of not getting the real help they need.
Nurses in the community have a very special opportunity to help people both to avoid becoming homeless and to help them back into society if they are able to recognise the problems that drive people out and force them to become outsiders in the first instance. Society imposes a stigma on those who become homeless in the same way that people who experience mental or psychiatric illness often endure. Slowly attitudes are changing but that sense of exclusion and isolation is a real problem and must be addressed. Nurses as frontline care workers in the community can make a difference be being vigilant and taking a stand when necessary to help those who are often in no position to speak up for themselves.
A good example of where a stand needs to be made now is in relation to the proposal to close the mental hospitals – a reform measure which everyone here I am sure warmly welcomes. However, no proper provision – and I emphasise the word proper – appears to have been made for housing those who are to be treated in the community when the strategy – “A Vision for Change” – was published a few days ago. Only after some of us protested loudly did the Minister respond with the proposal that when the Mental Hospitals are sold for development, each developer will have to give an undertaking that a certain amount of housing will be provided on each site for those affected. This was revealed exclusively on the front page of The Irish Times on Saturday the 11th of February but sources suggested that it would be several months before the tender documents appear and we know the full details of what is proposed.
Now we are all aware what happened regarding the proposal that a percentage of each new housing development had to be made available for social housing. Developers were allowed to buy their way out of that responsibility by making a contribution to the local authority. Will the same be allowed to happen in respect of people with mental and psychiatric problems?
Many of the people we meet who are homeless on the streets of Dublin have been patients in mental hospitals. They are living proof that the plan to close the mental hospitals and move services into the community over twenty years ago has not been a resounding success to date because inadequate services were provided in the community. Will we allow the same thing to happen again?
Nurses have a unique opportunity to make a difference on this issue as they are going to be redeployed from the mental hospitals into community care teams. In other words, in these front line caring roles it will be very apparent if the housing needs of psychiatric patients are being properly met before, during and after the mental hospitals are sold off. However, an additional safeguard is necessary. Independent advocates should be appointed to look after the interests of patients during the transition to ensure that they do secure their right to appropriate accommodation and to prevent the closure of the mental hospitals leading some to become homeless as happened in the past.
In the meantime we must be vigilant. We have not seen the small print yet, as I have pointed out, as the tender outlines for the sale of the hospitals will not be published for some months. Furthermore, the interim accommodation needs also need to be considered in the light of past experience. All of which are even more important considering that even the government’s recent ‘Review of the Implementation of Homeless Strategies’ criticised the failure to address the distinctive accommodation needs of people with mental and psychiatric problems. In other words, we already have an acknowledged problem of meeting the housing needs in this area and only after some questions did the Department come up with the idea of insisting that special accommodation must be made available by developers. One practical way to ensure that the patients involved will not be forgotten is to also insist that they should be consulted about the design of these developments as well.
The belated announcement of the transfer of responsibility for housing the patients affected to developers reveals seriously flawed thinking from the beginning. The accommodation needs in the community of those with psychiatric illnesses should have been the first priority of the recently published strategy and not simply dismissed as being the responsibility of the local authorities at a time when there are already 40,000 on the waiting list for housing.
Nurses can help ensure the plan to close the mental hospitals and their replacement by a successful programme of community care is successful but only if adequate accommodation is made available for former patients in the community. Nurses and doctors can also play a major role in reassuring communities that maybe fearful about the location of services in their areas by becoming directly involved in those communities as advocates for those patients under their care.
My first contact with the Royal College of Surgeons in Ireland was as a young student nurse attending lectures here and later in the early seventies becoming involved in the Nursing Research Interest Group. My contacts continue through the ongoing support TRUST receives from the College, including facilities which were made available recently for a very important seminar we hosted on the roots of homelessness, many of which can be traced to the failure to take time to treat people as people when they seek help. This is the point when those who ultimately become homeless first become outsiders. This in essence is the challenge for the nursing profession; how can we ensure that in our work that those who maybe outsiders in society find a welcome when they seek help in the health service?
Trust, which is in existence since 1975, was set up following clinics held by a group of doctors working voluntarily with me in hostels and night shelters and people sleeping rough.
In 1974, I carried out research based on a questionnaire and clinics held in night shelters with a group of doctors working in a voluntary capacity. Based on this work, and the generosity of the late Ann Rush, TRUST – a private charitable trust – was set up in 1975. The organisations’ aims are:
“to serve homeless people in need by promoting human services which would meet their immediate and long-term needs and by these means to encourage their development and give their lives a dignity which is their birthright.” …from the Deeds of TRUST.
The service set up subsequently, the first of its type, was a model for services here and overseas. We are sandwiched between St. Patrick’s Cathedral and Christchurch Cathedral in Dublin in the Liberties area of Dublin, 5 minutes from here. We work in the basement of the Iveagh Hostel and are grateful to the Iveagh Trust who only charges us a nominal rent.
The philosophy of TRUST is based on two central principles:
The recognition of every individual’s right to be treated as an autonomous and unique human being.
The need to restore the dignity of individuals whom society has labelled deviant and undesirable.
Daily we meet over 50 men and women who sleep rough and deal with people as they present themselves to us – all outsiders in a city of plenty. Many come from outside the city and many from outside the jurisdiction, now increasing numbers from the EU Accession States. Some people we meet we have grown older with, meeting them first in the early 70’s – and of course we meet new people every day. Our services include the provision of shower / bathing facilities, a change of clothes – as part of an holistic health service, information on their rights and entitlements, meeting people on the level they are at, to address their more complex needs. The people we meet are perceived by the wider society as being different and difficult. They suffer from the effects of isolation, neglect and health problems, exacerbated by lifestyle. Accessing mainstream services – particularly basic accommodation is a major problem. We meet increasing numbers of people who were ‘re-settled’ in totally unsuitable accommodation, and then find themselves homeless again.
The people we meet everyday present with a wide range of medical problems including bodies that are ravaged by disease and violence and suffering with: pressure sores from sleeping out in all weathers, sometimes sleeping in urine soaked clothes for weeks; infected and untreated minor skin conditions and major skin problems (e.g. leg ulcers and trench foot), and 3 cases of gangrene in the last two years; as well as lice infected heads and scabies. In addition we often meet people who are suffering from malnutrition and all of the medical conditions common to the general public but exacerbated by their living conditions. And feelings of despair and inadequacy.
People coping with very serious addiction problems, including drugs, alcohol and gambling.
Pushed from service to service, often unable to get relief for minds at breaking point and the only solution usually offered is a brown envelope of medication and some even unable to read the directions.
Some trying to create a sense of normality after years locked away in institutions and others just relocated from one institution to another.
Many who have attempted suicide, and many we have known have died on the streets.
We meet some people who are so cut off from everything around them that they at times appear to be beyond reach. Others who daily challenge and inspire us.
We attempt as best we can to meet people as they are, listen and do what we can as fellow human beings – it’s not easy. Sometimes the only hearing the people we meet ever get is when they are being researched – which is why we have grave reservations about the quality and quantity of research taking place today.
We feel some agencies involved with people who are homeless may not respect their rights to the confidential use and storage of information. Some people who are homeless feel pressurised to take part in research into homelessness in case they may lose their hostel bed or their entitlements. We only become involved in research, when we believe the research design is sound, ethical and likely to provide useful information.
This is of course fundamentally about human rights in the sense of respecting people as people and refusing to see them as mere statistics to be measured and researched like inanimate objects. We have been concerned for sometime about the way in which the people we meet everyday are forced to trade the most personal information for help – for example a hostel bed. Often the questioning is done by people with little or no training so that it can be damaging for people already reduced to sleeping on the streets precisely because they cannot cope with the rigours imposed by society, the form filling and other demands the rest of us take for granted. But the benchmarks and performance indicators cannot be seen to be achieved unless the information is harvested. Who benefits from this?
Our frontline service providing care to the most disadvantaged people in Dublin has given us some unique insights into the way in which the health, social and homeless services operate in Ireland. We all need to look at the serious issues confronting the services today, namely the failure of the current management philosophy to nurture and advance a culture and a philosophy of caring.
For most people their only experience of how time and human contact is undervalued in the health service is the way many GPs and nurses are forced to meet very heavy demands with less and less time spent with each patient. However, that management philosophy imposed on people who are homeless on the street and vulnerable people, many with serious addictive and mental health problems means they are reduced to being constantly referred on and on in a painful and ironically very uneconomic cycle from the point of view of the state.
Joe is a dapper man from the inner city. He is in his mid-50s with an acute sense of injustice. Listening to him telling his life story one is struck by the power and brutality of psychiatry and the narrow definition of health care, his hard working life and the pain he experiences after his youth spent boxing and playing soccer. Life at times drains from him, the pain of living etched on his face, his distrust of professionals and his efforts not to respond to children who call him “mad” and throw stones at his window. His brutal honesty in ensuring bills are paid, his love of his dogs and all nature mask his extreme isolation and loneliness, even the local pub no longer the safe friendly place to sit and chat.
Like many men of his generation, housekeeping is not his forte. He called to Trust a few years ago. He had accommodation, but having a house is not the same as having a home.
My nurse colleague, Geraldine McAuliffe, attended a case conference called to look at “a case management plan” – incidentally a definition of case conference I remember is “An excuse to do nothing”, was re-enforced after the events that followed. DCC gave him a flat to allow for redecoration of his house. His dogs were placed in care with an assurance that they would not be put down. Weekly he borrowed €5.00 from Trust to visit them and had a shower and change of clothes beforehand. The local psychiatric hospital allowed him to stay overnight until his flat was ready – many would say inappropriate use of a hospital bed – but the staff knew him and were kind to him.
Now 3-4 years on where are we? Nothing has changed for Joe . He continued to get an ESB bill for a previous occupier, who died many years ago. Numerous calls and no action. Each bill added to his pain and frustration. A gas bill and telephone bill were received regularly for a non-existent service. His rent was deducted from his U.B. but when his entitlement changed his rent was not deducted and he was not informed. A demand notice added to his misery. His arthritis got worse and not trusting doctors or nurses he refused to take medication and his medical card was as useful as a lotto ticket.
This Christmas (2005) we decided in Trust something had to be done. Geraldine (nurse) and Patrick visited his flat with him. It is not possible to fully describe the stench and the squalor of a small flat with the only heat coming from the 4 rings of an electric cooker, occupied by one man and his dogs. Complete cleaning of the flat was organised. New furniture installed. All donated by friends of Trust. All bills sorted out which entailed hours of phone calls, repeating messages often to answering machines. A G.P. Maurice Gueret, who is one of our Trustees, met Joe and both got on well. Maurice had won his trust and even escorted Joe with his dogs to a vet to have the dogs’ toenails cut. The vet had reassured us previously that Joe loved and cared for his animals, which was obvious to all of us. He would go without food himself to ensure they were fed. Joe had refused to take all medication in the past but because he trusted Maurice it allowed him to administer a monthly anti-inflammatory injection.
Joe is now a new man. The ESB installed a new meter (pay as you go). He pays his TV and rent weekly. He now takes medication, first taking 2 Panadol with a glass of milk. If Maurice doesn’t call he asks us to ring him. He continues to stop us in our tracks and remind us how little we all know about the deficiencies in our services. Joe is not going to change. His quality of life is a little better but in these days of ticking boxes and moving people on, opportunities to see someone blossom is getting rarer leaving us much poorer. Time spent with Joe was and is immeasurable and none of us in Trust would call it wasted. No reports could describe the time, energy and above all commitment involved. Joe continues to challenge and indeed inspire us and to pose the question why is it seemingly so difficulty to understand that caring for people involves much more than theory and nurses should be to the fore in highlighting this fact.
“We know the price of everything and the value of nothing” as Oscar Wilde said, and a comment that appears to have some relevance to the way in which our social services are run today.
“Tracking People” has become a much abused word and is currently seen as best practice. Tracking people through the system smacks of Big Brother as more and more vulnerable people are forced to trade personal information to get a very basic service. Of course research is essential to plan services. “If we are to push for fundamental change in the whole area of homelessness, then a certain amount of constructive research is necessary. We feel strongly however that it must be pursued with the greatest caution. It is clear to us that the ‘research industry’ uses that section of our society, which is the most vulnerable and the least able to battle for its rights as its’ source of material. We must never forget that we are working with human beings, who for the most part have been battered by our society and who for so long have been pushed about as just another number in a cold inhuman bureaucracy”.
This last quote is from Leahy and Magee – Report on Broad Medical Services for Single Homeless People in the City of Dublin – March 7th 1976 – 30 years later, in a new millennium – and what has changed?
Recently we got an early morning call from another agency to bath a woman before she could be referred on to “a multidisciplinary team”. The same agency when contacted to know if a man known to us was there, as he had allegedly taken another man’s coat containing his dentures, told us they couldn’t tell us as it was confidential. However, the following day they ‘phoned back for detailed information on him for their files. Which prompts the question what are they using this information for? Maybe Andrew Lang summed up the reason over a hundred years ago when he said: “He uses statistics as a drunken man uses a lamppost – for support rather than illumination”.
Until those in positions of power and influence are prepared to sit with people in their misery and poverty, feel their pain, smell the smell of human misery and waste, feel the trembling body and listen to the cries of frustration rather than looking at statistics in neat boxes with grandiose titles nothing will change. If they cannot do it they should listen to those who can and do everyday or the poor and sick will continue to suffer pain and those of us working with them are left with the feeling we are only adding to their misery through our silence.
Changing health policy without changing social policy does not make sense, ticking a box isn’t sufficient to explain the living conditions of many we come in contact with. It is too easy to discuss people coming from outside the jurisdiction of this State looking at maps – do we ever get to know how people live near us?
We must be acutely aware of the social determinants of health and be prepared to discuss them and stop intimidating those who speak out and forcing them to remain silent and conform. Mary Robinson, former President of our country, said in 2001 “Each time you speak out with a critical voice you pay a price”. Today speaking out means exclusion, no promotion and a lonely existence – a situation that a philosophy of caring would simply prohibit and make impossible. Nurses must be at the forefront as advocates for the most vulnerable and in helping to reverse the present situation and a very practical step would be to seek the implementation of strong whistle blower protection for everyone in frontline caring roles in the health, social and homeless services – something we have advocated in TRUST for years. Legislation let it be emphasised that would help prevent the scandals we have witnessed in the nursing home sector.
An interesting observation worth reflection from “Not Just a Bed for the Night”, which I co-authored with Anne Dempsey (1995), published by Marino Books and delivered by Judith Chavasse, Director the Department of Nursing, University College, Dublin:
“Nurses are the only professional group trained exclusively within the health service. Most student nurses enter straight from school into a hierarchical training system. To survive, they rapidly learn to conform. Hospital research in the 1980s found that student nurses’ experiences encouraged adaptation to the system, an adaptation seldom reflected on and usually internalised by the end of training.
Most nurses are women. It has been argued that, out of mistaken loyalty, women often support structures and practices which are oppressive to others. Alternatively, the internalisation may have been refined to the extent that nurses have ceased to see injustice and have identified with the oppressive system. Anyone who demonstrates against this may provoke a storm of protest, as happened when research showed that some patients are treated differently if they are unpopular with nurses.
Rebels, whether patients or staff, have a hard time in hospitals. Many nurses who maintain a rebellious streak leave the hospital system and exercise their caring role to great effect in a different environment”.
Of course nursing has changed. There are more men now in nursing but we have met young men and women who left nursing because of bullying.
Just one month ago reading An Bord Altranais advertisement featured in an Education Special Report on Irish Times I was left wondering how easy it is perhaps to present a very rosy picture. “Do you like to be at the very centre of things? Are you interested and involved in life around you? Do you care about what happens in your community? Do you notice the great changes that are taking place in Irish society? Do you sometimes desire to improve the quality of life – your own and that of others?
This at a time when our health service appears at times to be floundering around us and many nurses appeared to be demoralised with rampant MRSA, patients on trollies and spin to deny same the order of the day
“Were Florence Nightingale to walk the wards tonight in any of Ireland’s modern day hospitals, she would be astonished at the high levels of responsibility and extensive skill-sets of the nursing and midwifery teams”. (Irish Times 2006).
I suggest it may be difficult to find a nurse.
The following quote from Sunday Independent 30th January 2005 by Theodore Dalrymple, a GP in England:
“Doctors are now a deeply disgruntled and disillusioned lot; when I started out, their first talk when they met in the corridor or the coffee room was of patients and their illnesses, but now it is of the evils of management, government directives, bureaucratic takes imposed upon them and so forth.” I think many of us could agree.
“I had the privilege of spending one week with Alice Leahy and her team in ”Trust”: that experience has taught me that the work is not only with ‘the outsider’, it is also with ‘the invisible’ and is invisible. After a week … Dublin becomes a very different and much more uncomfortable city. Familiar shops, offices, streets and parks become a place to
sleep and torrential August rains are more than a nuisance. After a week in ”Trust” Dublin is awash with familiar faces, however, the people behind these faces know that they have achieved invisibility: a reality that is summed up in the words of one woman in her 50s, in response to my flippant “see you around” -she answered “but you won’t know us out there – we are very different people out there.”
Una Lynch, Lecturer (Public Health), Queen’s University Belfast (2004)
(The young woman referred to died during the year, one of many to die on the streets unnoticed).
Many nurses now see themselves as technicians and we have been very slow to articulate what nursing care really is and it is obvious that this needs to be done. We need to confront the challenge in formally articulating a philosophy of caring in all of the health, social and homeless services for the 21st Century.
How much time do you spend writing reports compared to the amount of time spent delivering care to patients? When was the last time at local level you got a chance to analyse what is happening around you?
Many nurse managers have been distanced from patients and colleagues. They have to because of the amount of bureaucracy required – but how much of this is necessary? Does it in any way reflect the needs of patients and staff?
Do we ever get the time now to wonder how those we care for feel about meeting us? Caring for people does require us to speak out if we feel people are being denied care, are not being treated with dignity or worse still being excluded from society or our world. We also need to care for each other because if we allow those who speak out to become outsiders nothing will change.
I reflect often on the words of Pastor Martin Niemoellen in 1945 – “First they came for the Communists, but I was not a Communist so I did not speak out. Then they came for the Socialists and Trade Unionists. I was neither so I did not speak out. Then they came for the Jews, but I was not a Jew so I did not speak out and when they came for me there was no one left to speak for me”.
A Christmas morning a few years ago I happened to catch Eurovision Mass from Circus Pinter Top in Paris. Apart from the charm and artistry of Parisians I was struck by a few quotes from the Pastor: “Encounters with people move us” and I am sure our isolation in offices at times does something to us too and he further said “It is the blind application of the law which makes us inhuman”. I suggest much of what is presented we accept blindly and perhaps knowing the cost of speaking out. It is often not rooted in reality and it is debatable if humanity benefits as a result – only debate and reflection can answer this.
I strongly believe nurses, doctors and frontline care workers must have confidence to defend the most vulnerable and society must support them in that role and that we must resist being treated as invisible because we work with society’s invisible people. Health care surely is not about curing the disease but about caring for the person.
Some years ago I met here in RCSI Phil Barker, former Professor of Psychiatric Nursing, who runs workshops on the premise that “Knowledge can only be gained through experience”. I once wrote to him for permission to use a quote and he replied: “Alice, people don’t remember what you say or what you do. They will remember how you made them feel”.
Annex to Paper Delivered by ALICE LEAHY
TRUST Education Programme
All our education initiatives are aimed at affecting change through awareness. All projects are on the theme of “The Outsider”:
One day Training Day on “The Homeless Experience”:
This programme aims to raise awareness on the issue of homelessness and to help focus individuals and organisations on their responses and possible interventions.
The programme is aimed at individuals and organisations who want to deepen their understanding of the issues relating to homelessness. Many who come in contact with people who are homeless may have concerns that need to be explored and understood, and this programme provides a forum for this process.
A video documentary “A Fragile City” made by Esperanza Productions on Trust:
Was shown on RTE and distributed to all schools as part of our educational projects.
National Essay Competition for Transition Year Students:
Trust National Essay Competition on the theme “Outsider” which was co-sponsored by Dept. of Justice Equality and Law Reform and The Irish Times with prizes presented by the Dublin Rotary Club which ran over the last Transition Year. We had a major response and it was so encouraging to read the essays from young people. Information on this competition and prize-winning essays can be seen on our web site www.trust-ireland.ie.
National Art Competition for all second level students:
Our book “With Trust in Place”:
This had 40 contributors including Judge Michael Moriarty, Christy Moore and Tony Gill, a man who was homeless and died last year, published at the end of 2003 by Townhouse, now available from Trust.
A Seminar in RCSI in October 2004:
Entitled “Is the management philosophy of benchmarks and performance indicators incompatible with a philosophy of caring?”
“Building Trust in the Community”:
The DVD features two documentaries, the latest – Building Trust in the Community – produced specially for this initiative; and, A Fragile City produced six years ago about our work in TRUST, and was broadcast on RTE 1 Television and generated quite a reaction in terms of feedback at the time. However, the really interesting thing is how little has changed for the outsider in between the making of these two films.
Building Trust in the Community features interviews with people who have unique perspectives and insights on Irish society and into the work of TRUST such as Vincent, a man who is homeless; Rev. Olive Donohoe, Church of Ireland Rector in Mountmellick; John Lonergan, Governor of Mountjoy Prison; and Gerard Byrne, better known as Malachy in the RTE television soap Fair City. TRUST’s Alice Leahy and Geraldine McAuliffe also participate.
The aim of the documentary is to raise the issues and questions that must be addressed. However, there are no easy answers. Everyone in their own way needs to consider where they stand and what kind of community they want. The power to change things is in our hands and this short film poses the questions in a way that may helps us to at least think about the issues involved.
Building Trust in the Community was also made by award winning documentary filmmakers Anne Daly and Ronan Tynan of Esperanza Productions who also produced A Fragile City.
Check our website “https://aliceleahytrust.ie”