Orla Tinsley is a 24 year old campaigner and journalist from Newbridge, Co.Kildare. She began campaigning for cystic fibrosis patients rights in The Irish Times in 2005. In 2008 she received the Rehab Young Person of The Year Award and the specially created Youth Work Ireland Award for excellence. In 2009 she was named Overall Woman of the Year by magazine Irish Tatler and that same year signed a contract with Hachette Ireland. In 2010 she received the Armark Healthcare Award for Excellence in Advocacy and the Pfizer Young Medical Journalist of the Year Award. She continues to campaign for the provision of proper services for people with cystic fibrosis. She is a freelance journalist for The Irish Times. Her memoir Salty Baby has just been published in Ireland by Hachette where it immediately entered the bestseller lists.

My health is.. a constant work in progress. I have cystic fibrosis, Ireland’s most common inherited incurable illness. It is both physically and emotionally challenging at times and randomly interrupts life with chest infections and other issues which mean two to three weeks in hospital every two months. My physical health is about keeping things in balance so I can enjoy my life. I find if I stick to a daily routine of numerous medications, exercise and work it works well. I balance 4 hours treatment and 1 hour exercise everyday with life.The only way to do it is commitment and organization and staying away from people with colds or infections. 

My healthcare is... both inpatient and outpatient. It can take up to five days to get a bed in the public system when it is needed, and this will not be in an isolated en suite room which is the universally recognized best standard of care for people with CF. There is a queue for the isolated rooms in the National Referral Centre at St.Vincents and they are delegated on a list bases, so there is a period of sharing on an open ward with the constant threat of cross infection, detrimental to the health of someone with CF. Sometimes an entire 3 week stint will be spent in a shared ward where it is occasionally vital to clean other peoples urine or excrement off the toilet before use. In emergency situations access a room can be faster or sometimes you get lucky. Sharing rooms with very sick people is dangerous infection wise for physical and long term health. It is emotionally draining when your room mate is extremely confused and unwell and you feel compelled to calm them every few minutes. Likewise I disrupt them with coughing or other needs depending on the severity of my illness at the time. It's unfair to all parties. Often I, and other people I know, have gone for days without sleep or resorted to sleeping in the corridors of the hospital. It is particularly bad when someone is dying in the 6 bed because it is so public and only a mere curtain separates the person from entire ward. It is clear to me in these moments how horrifically unequal our system is. Although treatment for CF in the public system has improved slowly through consistent work and pressure from campaigning over the past five years people are still waiting for access to inpatient beds and getting sicker because of it. The current health system is still limiting life expectancy in CF because of lack of instant access across the country to isolation units, dangerous inclusion in open wards and sharing toilet facilities. The new unit in St Vincents opening this April and improvements regionally will help the situation, but it was slow and forced and it still leaves numerous issues unsolved. Campaigning started 7 years ago. Everyone should have immediate, equal access to the healthcare they need. 

My healthcare fear is... being realized each time I hear of someone unable to get immediate treatment for their illness, whatever it may be. Or when I see people with CF afraid to go into hospital or move from a pediatric service that no longer suits their illness to an adult hospital because of fear of cross infection and conditions. This fear is shared by many long term patients, and not just those with CF. As a long term patient it is easier to see the cuts on the ground and how they affect people directly. These are vital components to tackling the illness. I also worry about getting a life saving double lung transplant in this country when I need one because of lack of donors and slow improvement of yearly transplant rates. While things are improving, my biggest fear is that my only option will be to go to another country which costs a lot of money, time and depends on a lot of luck. 

Ireland’s healthcare is... like a bad jigsaw puzzle in which the pieces are abnormal sizes and very few slot together properly. We have some of the greatest people working within a system that frustrates and sometimes breaks them. We need a more defined, accessible model of care less top heavy with administration and more focused on the entire well being of the person regardless of their financial situation, illness, gender or physical, mental and spiritual needs.

My healthcare dream for Ireland... is a clear legal framework for action, implementation and accountability for universal, equal access to healthcare.  And an understanding at local, hospital and government level that we are dealing with living, feeling, spiritual, thinking and empowered individuals with an illness, whether it is long term like mine or fleeting. A person with an illness that must be treated immediately, not an illness with a person attached.

I, Orla Tinsley, have signed the Healthcare Guaranteed petition and have asked the government to provide a legal guarantee of equal access to healthcare in Ireland. You should too.

You can sign the Healthcare Guaranteed petition online now.

Clare Kambamettu, 2010 International Rose of Tralee/ Clinical Psychologist in Training. Clare’s longstanding interest and awareness of healthcare issues in Ireland is heightened by the fact that both her parents are practicing medical professionals. Prior to spending a whirlwind year as the International Rose of Tralee, Clare worked for several years within NHS mental health and substance misuse services in London. Spending twelve months as the Rose gave her the opportunity to work with a number of healthcare charities, most notably the Cystic Fibrosis Association of Ireland for whom she was ambassador. Through this work she became increasingly concerned about the current healthcare predicament that we face in Ireland and is more committed than ever to changing the way the system works. Clare is currently training as a Clinical Psychologist.

My health is vitally important to me. I think it’s easy to neglect something until you no longer have it. I often take my health, physical and mental, for granted. If I am unwell, I focus on my health whereas when I am fit and healthy I tend to neglect myself.  In recent months I have been trying to remember to say a quiet word of thanks for the health that I currently enjoy and this reinforces the idea that it is something I need to take care of on a daily basis. One of my new year’s resolutions has been to do one thing a day for my body or my mind to improve my health. This is sometimes a small thing like drinking two litres of water or saying something positive to myself, or a bigger thing like climbing a mountain or getting out for a run.  

My healthcare is becoming more important to me as I get older. I no longer feel as invincible as I did a few years ago and I recognise that at best I will experience some minor ill health during my life as we all do. Knowing how poorly resourced the healthcare system in Ireland is does worry me as I know that I will probably require it at some point in my life. It’s frustrating and unnerving to feel that I couldn’t rely upon services that are supposed to help me if I am unwell.

My health fear is me or someone close to me being given a diagnosis of a long term or terminal illness.  That is difficult enough to cope with alone without the added strain of worrying about whether I could provide for it financially.

My healthcare fear is not having access to the services or treatments that could save or improve my life. I think if I or a loved one was ill the knowledge that something could help but that I couldn’t afford it would be devastating.

Ireland’s healthcare is without a doubt unfair. Those that can’t afford private healthcare are penalised for this every day through lengthy waiting lists, inadequate frontline care and hospital facilities and reduced access to services. Healthcare access is frighteningly disparate across locations. If somebody is unfortunate enough to live in an area that has no service to meet their needs then it is a lonely road indeed, with little option but to plough onwards without assistance. Ireland’s mental health is something that is of great importance to me given my professional background; in recent years more discussions about mental health are being had but by and large it is still an area that is stigmatised and greatly under resourced. This is understandable in a developing country where mortality rates are very high as mental health is secondary to survival but is inexcusable in a supposedly first world country that claims to value its citizens.  The role of charitable organisations cannot be underestimated; if it were not for them, there would be few platforms from which to air major issues such as increasing rates of depression and suicide across the community and problems pertaining to adolescent mental health.

My healthcare dream for Ireland is that every person, man or woman, adult or child, could rely upon a system that would provide for them when they are at their most vulnerable.  As it stands, only those with vast amounts of money have the luxury of adequate healthcare.

I, Clare Kambamettu, have signed the Healthcare Guaranteed petition and have asked the government to provide a legal guarantee of equal access to healthcare in Ireland. You should too.

You can sign the Healthcare Guaranteed petition online, now.

Inez McCormack is a well known women’s and human rights activist and trade unionist – she is a former President of the ICTU. Inez founded and currently advises the highly commended PPR (Participation and Practice of Rights) in Northern Ireland, which enables marginalised communities and groups to effectively participate in the economic and social decision making in order to change and improve the quality of their lives. It has achieved international commendation and Mary Robinson has described its work as ‘groundbreaking’.

My health… and yours will be detrimentally affected by the continued stubborn refusal of healthcare decision makers to engage with us as they make tough decisions about what Ireland’s healthcare should look like. I’ve watched the work of a group of mental health service users and family members bereaved through suicide known as the Belfast Mental Health Rights Group (BMHRG) since 2006. They have been working to try and ensure how their own experience of tragedy can be used to avert it for others through making service provision pro-active and responsive.  By monitoring issues they have identified as barriers to accessible treatment and setting human rights indicators and benchmarks they are working to improve access to and delivery of mental health services. Despite this work resulting in significant changes and their struggle being commended by international experts, decision makers still refuse to treat them with the basic respect and dignity they deserve.

My Health fear is… the effect of the refusal by some  health service delivery bodies to listen to and value the experience of those using mental health services. This enables them to identify barriers to the system working effectively. For over four years, the BMHRG campaigned for a simple, low cost change in the appointment system for those presenting at A&E in distress, so that the most vulnerable amongst us would have that lifeline of knowing that we are tied into services and not on our own. For four years they were pushed from pillar to post. I fear that the delays and distortion and dilution of what this group campaigned to achieve will extend the experience of tragedy to other families.

My Healthcare fear is … that the healthcare system will refuse to adapt. That healthcare policy which, at its core, is premised upon the desire to improve our health for the better will remain so entangled in the bureaucracy of its own making that it will stifle the good ideas, smart ideas brought by people who have the lived experience of the system and who require respectful dialogue on that basis. If we allow a system of healthcare to continue which denies this engagement, which denies rights, which denies dignity, we will have created a system of healthcare which does the opposite of what it should.

Ireland’s healthcare is… in danger if it continues to prevent the experts on the ground, the people who use it, to work to make it better. I’ve been convinced of this for a long time, but it was reaffirmed recently when I listened to a member of the BMHRG, Bette, a mental health service user herself, explain it in a meeting with Thomas Hammarberg, European Commissioner for Human Rights during his recent trip to Belfast.

She said:

“We’re the people on the ground, we’re the people with the voice, especially with mental health. We’re being told how we should feel without giving us the chance to say how we feel and what we need. But we will march on and we will fight because you know we are all human and we need the respect and the dignity that we all deserve and that's not happening now, we need change in the system.”

My healthcare dream for Ireland is… that the work of Bette and other courageous members of the group are accorded dignity not humiliation. That by doing so the resources in mental care are demonstrably and effectively used to reduce the appalling statistics that show suicide in Northern Ireland has risen by 47 per cent in the last five years.  That healthcare in Ireland will be about serving the needs and rights of the people of Ireland, especially the most vulnerable. This will only change when dignity, right and respect are the daily coin of relationship and resource.

I, Inez McCormack, have signed the Healthcare Guaranteed petition and have asked the government to provide a legal guarantee of equal access to healthcare in Ireland. You should too.

You can sign the Healthcare Guaranteed petition online, now.

Dil Wickremasinghe, Broadcaster with Newstalk 106-108, Social Entrepreneur, Activist and Stand up Comedian

Health is… The World Health Organization (WHO) maintains that health is a state of complete physical, mental and social wellbeing, and not merely the absence of disease or infirmity. This reminds me of the film Jerry Maguire and the infamous line “You complete me” that left so many of us reaching for our tissues back then. However, after enduring many life lessons I have learned since that you cannot rely on someone else to do that for you as you must become complete by yourself. But how can one be healthy and be whole if we don’t have equal access to healthcare?

My health is… like saying goes my wealth! I deeply value my physical and mental health as I have learned in the past it is integral in my journey to reaching my full potential as a human being.

My healthcare is… good, I think, as I have been paying towards health insurance since I arrived but never used it. However, the quality of health care in Ireland is inconsistent, costly and is a painful reminder of the inequalities which exist in our society today. 

My health fear is… I am self-employed so if I don’t work I simply don’t get paid and as I cannot access any social welfare support sadly being sick is just not an option for me for the moment.

My healthcare fear is… I don’t have immediate family in Ireland as they are all scattered around the world. I have a loving partner so I am lucky but I often worry about the thousands of migrants residing in Ireland especially those who don’t have anyone to care for them and have limited resources. On Christmas Eve, I visited a young woman in a psychiatric unit in Dublin. She came to Ireland as a domestic worker but as she was treated horrendously by her employer her mental health is now in a very fragile state. She has no family in Ireland. I worry that the healthcare services available to her are not person centred and won’t take her culture into account.

Ireland’s health is... under threat at present. The current recession is impacting negatively on the residents both on a physical and mental health level. Many people are less likely to go for medical checkups as they don’t have the money and this can often lead to serious illness. In addition, the number of people that are experiencing mental health difficulties such as depression, anxiety and stress are increasing as due to stigma many don’t seek help in time. 

Ireland’s healthcare is... unequal and reminds me of healthcare systems in developing countries which are strictly linked to a person’s wealth. I find this to be deeply unjust as decent healthcare is a basic human right that every resident of Ireland should enjoy irrespective of who they are, who they know or how much they earn.

My healthcare dream for Ireland... full equality! A person’s physical and mental health is integral in their journey to reach their full potential. If we had a healthcare system that cared for all residents’ equally well, as a nation we would be able to reach our full potential.

I, Dil Wickremasinghe, have signed the Healthcare Guaranteed petition and have asked the government to provide a legal guarantee of equal access to healthcare in Ireland. You should too.

You can sign the Healthcare Guaranteed petition online, now.