Mistreatment at nursing home : Implement reward system for workers- Raymond A Fernando writes to the press

My letter  on the above matter is published in The New Paper today, Friday 17 June 2011, page 20.

It is shocking to read the report of mistreatment of the elderly woman in the Nightingale Nursing Home, “Nightmare at the Nightingale” (The New Paper on Friday, June 10).

To ill treat a defenceless elderly woman who suffered a stroke is inhumane and unacceptable. I am surprised that the abusers have got away with just being disciplined.

Do they not know that a woman's modesty should be protected at all cost, and that to slap a helpless old lady on the mouth can be very painful?

Was this the only time the senior citizen was abused or were there other instances?

Under the elder abuse laws, the perpetrators should be brought to court for physical, and possibly, verbal abuse.

Otherwise occurrences of such abuses will continue and some cases of ill treatment may even go undetected.

While managing persons with chronic illnesses and disabilities is not the easiest task, professional caregivers who are entrusted to care for the sick must practise patience and perseverance that can help to lift the human spirit and lead the afflicted ones to recovery.

In this respect, I propose that the Government implements an attractive reward system that recognises professional health-care workers in nursing homes who go the extra mile in caring for their charges, just as they do in public hospitals.

Caregivers should also be encouraged to visit their sick relatives frequently and to this end, it is necessary to ensure that all nursing homes are easily accessible to members of the public in terms of buses – be it from public transport companies or feeder bus services.

Caregiving, whether it comes from professional health-care workers or family members must be promoted as a noble job.

I therefore revisit an idea which I proposed a few times to the Government - give a caregiver's allowance that can help family members take on this task rather than place them in nursing homes, bearing in mind that looking after a person with disabilities or chronic illnesses requires supervision 24/7.

Unannounced visits at nursing homes and hospitals by officials from the Ministry of Health (MOH), coupled with six monthly feedback assessments from relatives on the service levels at these homes, that can be summarised by the home's administrators to MOH should also be put in place.

RAYMOND ANTHONY FERNANDO

Raymond's letter to The New Paper: "Extending primary care scheme the way to go"

My letter on the above subject is published in The New Paper today, Wednesday 8 June 2011, page 18.



Apart from housing, health-care costs is another grave concern for Singaporeans, especially the elderly, many of whom are struggling with chronic illnesses and have limited savings.

I am encouraged that Health Minister Gan Kim Yong has said that the Primary Care Partnership Scheme (PCPS) could be extended.

At the moment, subsidies for senior citizens start at the age of 65. One way to reward our seniors who have contributed to the economy is to allow the use of the subsidies from 62 instead.

Positive living

Such a move will cause less anxiety to these seniors, leading to more positive living and better health.

Extending the PCPS island-wide also makes sense as many senior citizens have difficulty getting about.

This way, low-income Singaporeans, including the elderly, who want to visit clinics will find it easy to see the general practitioner near their homes.

On a separate matter, could the authorities look into the bus stop at the Institute of Mental Health (IMH).

I hope the Transport Minister can advise the relevant bus company to re-route its present services to ply the institute's grounds so that visitors will find it more convenient to visit patients. It would be useful for the IMH staff as well.

RAYMOND ANTHONY FERNANDO

Government needs to provide respite care for caregivers and day care centres for the mentally ill

Introduction

Being a caregiver to a mentally ill person is very challenging and energy draining. However, when you are a caregiver who is not a formally trained, this can lead to unbelievable stress in your life, and it can rip apart families, marriages, parental relationships, as well as your own inner self. 

The task of a taking care of a loved one with schizophrenia or bipolar person is especially difficult and painful as these illnesses are unpredictable and requires round-the-clock supervision. It is like walking in a minefield - you never know when the bomb will explode. As the sole caregiver to my wife who has has suffered horrifically from schizophrenia since the age of 17, I know only too well how painful the journey is.

Respite care

Caregivers are at increased risk of depression and other health problems as a result of the stress of being a caregiver. It is therefore crucial for caregivers to take a break periodically. Having respite care can enable the caregiver to keep providing rather than burning out or becoming ill.

Some local governments in first world countries, like U.K. help pay for respite care for caregivers because they fully understand the burnout which the carers have to endure everyday of their lives.

Respite care is not a luxury. It is necessary for the well-being of the person in your care and for you.

In Singapore, the focus is on the patient and often the caregiver is forgotten.

The government should look into the welfare of caregivers who are prepared to walk the less travelled road.

The perfect sanctuary

Some months ago, I shared my experience as a caregiver to my wife to about 100 Catholics at the Catholic Church of St Ignatius in Kings Road. Before the talk, I was invited to rest at the garden near Kingsmead Hall. This is where retreats are held for Catholics who wish to experience a spiritual journey. The ambience was peaceful and serene. It is the perfect sanctuary for anyone who needs to find peace of mind and want to relax and get away from the hustle and bustle of the stressful urban lifestyle.

The Singapore Government could send a team over to this Church to study how it can build a similar sanctuary for caregivers who desperately need respite. Such a home away from home, with no religious teachings, can also be rented out at affordable prices for those with special needs who are unable to bear with excessive noise from upgrading works that are carried out periodically in HDB estates.

If we want caregiving to become a noble job, we need to build the infrastructure that is vital in making life easier for our marginalised communities.

Daycare centres

Try as hard as I can, I am unable to find a suitable day care centre for my wife during periods when there is excessive noise. I read with interests that the MCYS is planning to beef up the number of childcare teachers in child care centres and also to expand the number of such learning centres across the island. Yet, nobody feels it necessary to provide affordable daycare centres for recovered psychiatric patients who have also contributed much to the economy during the periods when they were gainfully employed.

Nursing homes and daycare centres need not have an environment that looks depressing and gloomy. It can be “tailored” to the retreat centre at the Church of St Ignatius (mentioned above) that will help to lift the dampened spirit and a troubled mind. Surely NTUC who looks into the welfare of workers could explore the construction of such daycare centres in the heartlands as there are many who are struggling with the stresses of life in all parts of Singapore.

There is far too much emphasis on the younger generation and so little support for our seniors that leave us feeling that we are a “forgotten lot”.

The government has assured all Singaporeans that it will listen to feedback, but it is futile to give feedback when these do not translate to concrete action.

Sincerely,

Raymond Anthony Fernando

P.S: You can write some of my stories at these links:
http://openbeast.bibliz.com/archives/28

and here:
http://openbeast.bibliz.com/archives/774

Design in Progress Exhibition - 8- 10 July @Orchard Central Level 1 Atrium

A group of SIM graduates students will shed new light on "design". They will be looking at real world issues, broadly categorised as health, environmental and social issues. With design thinking, the central thrust of the exhibit is the no...tion of design being the catalyst of change - exploring how design can be used as a means of bettering the society we live in.

The health exhibit, entitled "The Delicate Mind", deals with the Schizophrenia, the top two prevalent mental illness in Singapore. We aim to increase awareness and educate the public on this mental condition but creating environments that simulates the experiences of one coping with Schizophrenia. It concludes a final takeaway message that people coping the illness are actually just like us, just that we need learn to understand and not stare.

The environment exhibit, entitled "The Green Folks", aims at demonstrating how a green living can be easily achieved at home or at the office. It highlights the importance of how one should really just do their little bit to care for the environment by practicing sustainable living.

Finally, the social exhibit, entitled "The Inner Self", touches on the sensitive topic of inferiority complex. The exhibit aims at drawing awareness to the common social and psychological problem and using creative means to better the situation.

This is a very meaningful exhibition and it would  be useful to attend this event as the grads put in a lot of effort.
Event details:
Design in Progress

8-10 July 2011
Orchard Central Level 1 Atrium

Raymond's letter to The New Paper: Look into the welfare of caregivers

My letter on the above matter is published today, Wed 25 May 2011, page 20 in The New Paper.



It is encouraging to note that the People's Action Party's (PAP) has promised change not just in its communication and style but also in its policies.

With the Prime Minister's assurance that every segment of the society will be taken care of, I urge him and his new team to look into the needs of those with special needs, including the mentally ill and their caregivers, the elderly lonely and autistic children and their families.

I am encouraged that Madam Halimah Yacob has been posted to the Ministry Of Community Development, Youth and Sports to serve as its Minister of State.

Understands

She cares for the mentally ill and their caregivers, and understands how difficult it is to care for someone suffering from a mental illness.

People with mental illness and their caregivers face huge challenges in their lives: stigma, lack of financial and social support, employment, housing difficulties, crisis intervention and high rate of relapses.

Yet, the support structure for these marginalised citizens is weak in Singapore.

If caregiving is to be raised to a higher level, the Government should look into the welfare of caregivers who are willing to travel the long and arduous journey.

RAYMOND ANTHONY FERNANDO

Time to re-look the bridge to mental health and provide better support for caregivers

23rd May 2011

Major- General Chan Chun Sing

Ag Minister – MCYS

Madam Halimah Yacob

MOS- MCYS

Mr Gan Kim Yong

Health Minister

Dr Amy Khor

MOS- Health Ministry

cc: Mr Heng Chee How- Senior MOS(PMO's Office)

Dear Ministers & Ministers of States,

I refer to the above matter.

I am encouraged that Major-General Chan Chun Sing is keen to help needy families (CNA report- Sunday 22nd May 2011). Undoubtedly one group that needs much help and support are the mentally ill and their caregivers who have been neglected for decades. They definitely fall into the needy families category. The parting message from former MM Lee Kuan Yew and Emeritus Senior Minister Goh Chok Tong was that “we must not forget the older generation”.


Isolation; depression; shame; guilt; loneliness. Mental illness can bring about these emotions. Stigmatisation can cause discrimination in the workplace, unnecessary violence and inappropriate hospitalisation. Sufferers will lose self-esteem, self-worth and even hope altogether. In extreme cases, the effects of social stigma can lead to suicide.

Russian-born American writer Elie Wiesel, the 1986 Nobel Peace Prize Laureate, once said: “The opposite of love is not hate; it’s indifference.” Many people in society, even educated ones, are still indifferent to the mentally ill. A large number of people choose to remain indifferent because of fear. Their fear and lack of understanding of mental illness often leave the afflicted shunned and discriminated against. This fear, when left unchecked, will continue to obstruct moves toward a more compassionate society, in which we care more humanely for the mentally ill within our community.

At this juncture, permit me to give you a little background as to why I am making a call to all of you to provide this marginalised community with the support that we so desperately and urgently need since some of you are new on the jobs.

I am a caregiver to my wife, Doris Lau who was stricken with schizophrenia and depression at the tender age of 17, and my journey in caring for her all by myself for 37 years has been extremely difficult and exhausting, mainly because the support mechanism for citizens like us are non-existent. I have suffered burnout countless times! She has a total of 6 chronic illnesses and is seeing 7 doctors.

During our 37 years of marriage, my wife has suffered 12 nervous breakdowns. Her recent relapse last month has once again seen me suffer all alone. The Institute of Mental Health(IMH) of which I am a volunteer has a vision to be the leading mental health care provider in Asia by 2012. But how can this be realised when the support mechanism for caregivers like us is clearly lacking?



Many a time when my wife suffers a relapse of her mental illness, I am left to bear the enormous pain, hardships and suffering all alone. I have not chosen to place my wife in a nursing home or in IMH, but will continue to care and love her to my last dying breath. What is clearly lacking here in Singapore is love for another human being who, by no choice of their own, are made to suffer horrifically from the ravages of schizophrenia.

During the SARS period, I was denied access to see my wife for 30 days when she suffered a relapse of her mental illness. Yet emotional support is vital to the recovery of mental patients. Any psychiatrist in the world will testify that 50% of their recovery comes from strong emotional support. For one solid month, I suffered all alone.  It was only my Christian  faith in Jesus that helped pull me through this most difficult period.

My wife has to take 44 tablets a day - half of which is for her psychiatric condition. Medication  compliance alone is a big headache. If you disbelieve me, take a look at the list of medications provided for in the attached document. Her drugs are so complex that during the period when my wife underwent knee surgery in a restructured hospital a few years ago, the nurse almost gave her the wrong dosage of her psychiatric drugs. Fortunately, I noticed the mistake and decided that I should counter-check all the medications that she was taking 3 times a day.

This resulted in my having to make 2 trips a day for a week to counter-check the medications that was given by the nurses. I was exhausted and collapsed when I reached home on the 3rd day. Lack of sleep, deep set worries caused me to suffer burnout. Any wrong dosage - either overdose or underdose will see a relapse of her mental illness because my wife's mind is very fragile. She can so easily snap. Once that happens, my wife's full recovery will take as long as a year. My wife will have to go for another knee surgery in a few months time. Will the same mistake occur? I really don't know, but I will not take any chances.

One of the cruellest aspects of the disease (schizophrenia) is that the sufferers so easily alienate those closest to them before anyone knows that they are ill. It effectively robs them of the love and support that are vital in dealing with the devastation wrought by mental illness. Relationships are torn apart, home and families are lost, and anticipated futures evaporate. Respect is eroded and a person is often left with nothing and no one — and at a point in their lives when they are the least capable of helping themselves.

If they are fortunate, there will be at least one person who doesn't give up, one person who does not retreat in the face of a mind in chaos. But trusting that person is another matter. When delusions and hallucinations implicate their loved ones in sinister conspiracies, the mentally ill feel alone in the most fundamental of ways.

Singapore has done well in meeting the basic needs of its citizens such as a good education system, health and housing needs, and a safe and clean environment. However, there is still an urgent and dire need to facilitate the inclusion of marginalised communities that include the mentally ill, the disabled and the lonely elderly who do not have the same sense of belonging in a society that is bent on economic excellence.

Our health care system needs improvement. If you read the postings on my blog , and it includes a plea to our Prime Minister, you will find that I am not exaggerating when I say this.

Many people , even doctors do not fully understand the difficulties we face everyday in our lives. An example is noise pollution. Excessive noise , such as lift upgrading and other types of renovation will also adversely affect my wife. People with mental illness cannot take excessive noise pollution. Everytime there is noise pollution, I have to search high and low for alternative accomodation, because no day care centre in Singapore will take in people suffering from mental illness. Must we be like gypsies or nomads running from place to place when there is little or no consideration for the sick?

Bear in mind that I do support upgrading programmes, but shouldn't the HDB show more compassion and allow us to rent an affordable flat during such periods?

Everyday for me is a relentless pursuit to find the means/places that can provide a safe haven for my beloved Doris.

I have sat on the MCYS focus groups for 3 years, contributing ideas and useful suggestions. I have given up this role as a volunteer because I was unappreciated. If you read my advocacy book- “A Choice, A Voice, A cause-: One man's advocacy on social issues”, you will find very useful suggestions on how we can improve the lives of all Singaporeans. Heng Chee How has purchased 5 copies. He will bear testimony to this. I am willing to re-volunteer my services to MCYS if the government is keen to listen and accept bold and new ideas.

Despite the enormous obstacles and adversities I have faced, and will continue to face, I will continue to care and love my wife, taking a leaf from my Christian marriage vows which says, “I will love my wife in sickness and in health, for better or worse, so help me God...” for Doris is a beautiful human being, who like anyone of us, needs love, understanding and compassion.

In closing, I have taken time and effort to write to you, ministers so I hope that I will be able to secure a reply or at least an acknowledgement that my feedback is receiving attention. Often Singaporeans get upset when government agencies or even office holders do not make the effort to respond to genuine feedback. It can create the impression that the government does not care.

This 2nd “cry for help” goes onto my blog.

I am copying this letter to Mr Heng Chee How because he is one man that really cares and he has always rallied around us during moments when I needed assistance. God Bless you, Heng Chee How! Our marginalised communities need more leaders like you.

Thank you for your time and I look forward to a reply. You may now visit my website and blogs to understand and empathise with our dire straits. I am not just speaking for myself, but for the thousands out there who are suffering in silence. I want to believe that the government cares.

Sincerely,

Raymond Anthony Fernando

Website (RAY OF HOPE) : www.rayofhope.per.sg/

Blog (RAY OF LIGHT): http://rayhope8.blogspot.com/

She has schizophrenia and depression ….and I love her

I met Doris on Good Friday 1974. She was 20 years old, a young, sincere and caring woman. But three years before, she became stricken with schizophrenia.

Schizophrenia is perhaps the most distressing of all mental disorders. It is a complex illness that affects about 1 out of every 100 people during their lifetime. People with this disorder suffer from difficulties in their thought processes, which in turn lead to hallucinations, delusions, disordered thinking and unusual speech or behaviour. Its effects are confusing and often shocking to both families and friends.

Despite knowing this, I decided to take Doris as my lifelong partner. We got married in November 1974, after she turned 21. I was 23 years old then.

Many people have asked me why I willingly married Doris despite knowing of her mental illness. My answer is a simple one: “If schizophrenia is a part of the life of the woman I love, then it must surely be a part of mine too. I do not necessarily like what the illness does to her, but it is her person that I love. And that has, and will always be, the guiding, motivating force of my life.”

Since I married Doris 37 years ago, I have gone through an extremely difficult and lonely journey in seeking to provide the necessary care and help for my wife. Even our own relatives have distanced themselves from us because they refuse to share in caregiving duties. Furthermore, the social stigma that plagues those who suffer from mental illnesses make it even harder for us to seek help from society.

Let’s face it – when you or your loved one is stricken with mental illness, you are all alone in this world.

Despite the many successes Singapore have achieved, the numerous ‘number one’ accolades – the best airport, the best port facilities and so on, our country and civil society comes up dramatically short when it comes to the mental health care system.

Finding employment is one area where people who suffer from mental illness experience huge difficulties. Many patients are unable to find work; most job application forms require job seekers to declare if he/she she has mental illness, thus placing sufferers of mental illness at a clear disadvantage.

But finding employment is an important part of the recovery process, and helps patients lead a better quality of life. When recovered patients find work, it gives them a sense of worthiness and allows them to be self-reliant. They could take up jobs that are not highly pressured, such as clerical or data entry work. Jobs in the food and beverage industry, cleaning and security could also be offered to these recovered patients.

Yet the requirement for patients to state their history of mental illness would almost certainly prevent them from securing a job.

The usefulness and necessity of this declaration needs to be looked into. Its removal perhaps would go a long way to help people who have suffered from mental illness find meaningful employment. If the public sector takes the lead and removes this clause, I have every confidence that the private sector will follow suit.

Financial problems are also very common to patients and their families. While charitable foundations raise funds on a national level for various illnesses, such as kidney failure, mental illnesses do not receive similar attention and support. I myself have made several appeals for money to be raised for the mentally ill, but my pleas have gone unheard.

Yet this is a group that is in dire need of financial assistance. Patients themselves, as I’ve already mentioned, would not be able to hold down a job. But those who look after them are also heavily burdened; caring for a loved one suffering from mental illness requires dedicated care round-the-clock. As a result, many caregivers have to give up their day jobs, further increasing their financial difficulties.

The government should consider ways of alleviating such financial stresses. One possibility is to offer grants for patients who have recovered from their mental illnesses that allows them to work from home. Patients who have literary or artistic skills could be provided with grants or sponsorship that pays for the publishing of their books or paintings, which will in turn help them to earn some income from royalties. They will feel uplifted and encouraged once people show support for their work.

My wife is a good example. She has benefited emotionally from the success of her 5 books, and is motivated to continue writing. By doing so, it keeps her mind actively engaged, thus preventing dementia from also setting in.

Besides providing financial assistance to patients, the caregivers themselves will also benefit immensely from government aid. A caregiver’s allowance, for instance, would help alleviate any financial troubles they may have. Such a support scheme will help to raise the quality of caregiving, and should not be regarded as a handout.

But sadly, such grants are hard, if not impossible, to secure. Some organisations that I have approached, such as the Centre for Enabling Living, are reluctant to make the appeal on our behalf. Others such as the Lien Foundation and the Shaw Foundation have turned down my request for sponsorship after I wrote to them on an individual basis.

Such difficulties extend to other areas in our daily lives as well. When I wanted to take up a life and medical insurance policy for my wife, insurance companies turned me down. As my HDB flat underwent a lift upgrading programme, I had hoped that a day care centre could allow my wife to use their facilities, as the excessive noise could trigger a relapse of her mental illness. But my request was rejected; I was told that persons with mental illness are not allowed to use their facilities. Although the day care centre management eventually offered my wife the use of their facilities after I wrote a letter to My Paper, I had to decline as I was unable to afford their $900 monthly fee.

Many families who have relatives suffering from mental illness are finding it so hard to cope. I know this very well because I sit in support groups where caregivers often breakdown and cry uncontrollably when they have to struggle in caring for their stricken ones all alone.

Beyond the lack of material assistance, the equally-crucial element of emotional support for caregivers is also very weak. Having witnessed firsthand how my wife has suffered horrifically from schizophrenia, I personally have gone through much mental stress and anguish.

We do not have a system in place where the caregiver is given unconditional support when a loved one suffers a relapse. Each time Doris suffered from a relapse and had to be warded in the Institute of Mental Health, I go through enormous emotional pain. There was no one to comfort me during these most depressing moments. Many a time as she went through electro-convulsive therapy (or ECT) as it is commonly known, to bring her back to a stable condition, I am left alone without any emotional support.

Even the media is not very supportive. Local television for instance helps feed the prevalent social stigma against people who suffer from mental illness. Mandarin television programmes often use the phrase ‘shen jing bing’, which translates as ‘crazy’, in local Chinese dramas and this insensitive language aired during prime time is not helping to de-stigmatise mental illness in Singapore.

Little wonder why persons suffering from mental illness are always shunned and isolated. And even though I have raised this issue, such as by writing to a newspaper, I still hear this remark being used frequently on television. There needs to be greater public sensitivity to the emotional damage such phrases can do to people whose lives are already greatly strained by mental illnesses.

Sincerely,

Raymond Anthony Fernando