Dr Pat O’Neill is a Consultant in Orthopaedic and Sports Medicine who works at the Mater Private Hospital in Dublin, runs the sports injury clinic at Cappagh National Orthopaedic Hospital, and lectures in orthopaedic sports medicine at Trinity College Dublin.
But for readers of a GAA persuasion, he is perhaps primarily known for his unmatched success with Dublin football. A key member of the legendary back-to-back All-Ireland-winning Dublin squad of the late 1970s, Dr O’Neill went on to manage the Blues to Sam Maguire glory in 1995, making him one of the select few to have earned All-Ireland medals as both player and manager.
Dr O’Neill’s unique insight into sports injury and sports medicine on and off the pitch makes him an ideal spokesperson for the ‘Mind Your Bones’ campaign being run jointly by the National Dairy Council and Cappagh National Orthopaedic Hospital in advance of World Osteoporosis Day on 20 October. It is an area he is more than familiar with; while the risk of bone injuries is part of playing sport, in some cases, osteopaenia or osteoporosis is a major contributory factor, he says.
“We see stress fractures and quite often, there is an underlying issue there in terms of bone health — maybe it hasn’t progressed to osteoporosis, but there is certainly an osteopaenia component to it. Then when you put the additional activity loads on it, the bone fragility comes into play and its doesn’t sustain itself for these repetitive activities,” he explains.
“I’ve had very little in terms of bone injury at any stage in a sort of fairly extended career. I have no doubt it was put down to drinking about two pints of milk a day. It is far better than those faddy sports drinks, for multiple reasons.”
Dr Pat O’Neill
While osteoporosis is a disease that predominantly affects females, particularly those post-menopause, Dr O’Neill says this does not mean men are protected.
“It has been an issue with regard to jockeys and it brings to light the whole issue surrounding their nutrition. Of course, that would bring in the dairy component of it as well, because the jockeys are tending to try and make a certain weight, as it’s a weight-restrictive sport. Their nutrition sometimes suffers on the back of that, and particularly any kind of nutrition that might involve weight gain. There would be this misperception that dairy products, because of their fat content, would increase weight, so they are not taking them and then because of that you have these deficiencies in calcium and vitamin D developing, leading to reduced bone density — maybe not to the level of osteoporosis, but it’s not optimal bone health.”
Bones are at extra risk in any high-impact sport, he adds. “Jockeys fall off horses and with any of the contact sports as well, you need good strong bones. Apart from the stress injuries, you need good strong bones to endure some of the acute bone injuries like fractures, as opposed to stress fractures, which is really a repetitive injury.”
Dr O’Neill won’t be drawn on the most memorable injury he has come across, just to say it was in “the most high-profile” players, but he is also keen to emphasise the risks of injury in people for whom sport is a hobby. The increasing popularity of marathons, triathlons and ‘Ironman’ contests is sending far more people to his clinics with serious injury than in years past.
“These are people with high participation. They might not be considered elite athletes, but it can be a very important part of their lives. Probably the most common one in terms of bone are the stress fractures, or the bone stress conditions. They particularly affect the shin bone and the foot bones, also the hip bone. The hip bone is a particularly problematic one; that’s a major injury which can sometimes require interventional treatment and surgery if it’s not detected and dealt with early.”
One issue he isn’t reticent about discussing is overtraining, or “burnout”, which has been a hot topic within the GAA in recent years, as well as in other sports. Dr O’Neill chaired the taskforce on player burnout for the GAA over a decade ago and he says this continues to be a problem within the Association.
“It’s not a great term, ‘burnout’, but it is one that was used because it was one that the general public understood. With burnout, you can look at it from three main areas. There is the over-training component of it — more training does not mean one will get better; there are optimum levels in getting that balance right, so there is the physiological component of the over-training. That’s really what the burnout refers to,” he explains.
“There is the psychological component of it as well, similar to chronic fatigue, but it’s basically an over-training syndrome. Of course, combined with that over-training syndrome, you then get the over-use injuries, which logistically would come about again because of the high intensity level.”
Particularly vulnerable are younger elite players, mainly in the 17-to-22 year-old age group, says Dr O’Neill.
“A young male doesn’t reach maturity until they are 19, females about 17, but they are quite often the ones who are playing with multiple teams, at multiple levels. They can be overloaded and sometimes you find them competing in more than one sport and they haven’t reached skeletal maturity.”
The findings of the taskforce in 2007 were unequivocal; burnout was a serious issue that needed to be urgently addressed by the Association. Since then, certain restrictions have been put in place — for example, young players can no longer play at both senior intercounty level and under-20 level.
However, overuse injuries remain common in the younger cohort of players, states Dr O’Neill. One study showed that the ratio of training sessions to matches was an onerous 13:1, which Dr O’Neill describes as a “total imbalance”.
He comments: “The focus is to try and play more games and try reduce the training schedules. It’s more interesting and satisfying for the individual and it makes far more sense spending all this energy and activity, and the pressure on the musculoskeletal system on the playing field rather than the training field. The whole thing is to retain people to keep exercising right through their lives and not discourage them because of these issues that can evolve at an early age.”
Concussion is another hot topic in sport. The precise long-term consequences of a blow to the head, and the links between concussion and brain damage, are still to be clearly elucidated by medics and researchers, but Dr O’Neill maintains Ireland is ahead of the game in this area.
“There is a big involvement in equestrian sports here, and in this you are dealing with speed, you are dealing with large animals, obstacles. In our contact field sports — hurling, football, soccer and rugby — they are heavy physical sports, executed with speed and agility, and the potential is there for collision and head injuries. Ireland would be considered one of the leaders in the awareness of this and in dealing with preventative measures.”
Dr O’Neill notes that concussion is now a huge issue in American football, with research showing an increasing number of retired NFL players who have suffered concussions have developed memory and cognitive issues, such as dementia, Alzheimer’s, depression and chronic traumatic encephalopathy (CTE). A number of legal cases have ensued.
“I think that has sort of woken up a lot of others to look at it from a preventative perspective rather than dealing with it when it occurs,” he notes.
Closer to home, Dr O’Neill is concerned at what he terms the “darker side” of supplementation and the growing prevalence of anabolic steroid use within sport, fuelled by their easy availability online.
“I really don’t think it’s very prevalent in this country, certainly based on the history to date, but there is concern about certain medications being used. I’m referring particularly to the likes of anabolic steroids and human growth hormones. The problem is that in the Internet age, these are readily available now. They are illegal of course to use, but that doesn’t stop them coming into the county and being available. Most of these are prescription drugs and they should only be prescribed for specific health reasons if there is a requirement.”
Dr O’Neill maintains his place on the GAA Medical, Scientific and Welfare Committee, one he has held for over 22 years, but is adamant that his current role is primarily as “an observer and supporter of Dublin football”. Thus, the last question has to be about the current Dublin crop and their stunning four-in-a-row achievement. Are they the best Gaelic football team he has seen?
“I think history speaks for itself; they are a fantastic team and they play very attractive football. They are such an impressive bunch of athletes and footballers and they have a great team ethos. They are extremely well managed by a former player, Jim Gavin, whom I managed myself, and he is ably assisted by Jason Sherlock, Paul Clark and Mick Deegan. Jim’s attention to detail, his use of sports science, sports medicine, exercise physiology, sports nutrition and sports psychology; it’s fantastic the way he is able to use it all. I hope that doesn’t sound seriously biased!”
r Frank H Netter was a world famous medical illustrator. Dubbed ‘the medical Michelangelo’ by the New York Times, he used his artistic skill and applied that to further his studies in medicine. Dr Netter struggled to balance his illustrative work and his dedication to his medical practice. He always said illustration was his first love and while he felt a career in medicine was not for him, he felt pressurised into finding a more stable way to make a living. Unlike Dr Netter, Dr Eoin Kelleher has no regrets about becoming a doctor. However, like Dr Netter, Dr Kelleher has a deep passion for illustration.
Dr Kelleher has been drawing cartoons since third-year of secondary school. He once considered becoming a professional illustrator only to have realised the harsh reality of how hard it is to make a living from drawing alone.
“To be a full-time illustrator you’d have to earn enough money to be able to live on. There are two reasons why – it’s actually very difficult to make a living from the arts and there isn’t really much of a demand. The other side of it is that I could give up illustrating and it wouldn’t have a massive impact on my day-to-day life, as in I don’t make enough from it to actually have to depend on it.”
Dr Kelleher once reached out to The Irish Times cartoonist, Martyn Turner, about his wish to pursue this dream to be a professional illustrator, only to be met with a swift reply advising him to get a day job. Dr Kelleher took the constructive advice on board and knew that a path in illustration was not really a career that can sustain most people.
He received his medical degree at the RCSI in 2014, but all through medical school he pursued his hobby. Although it is an extremely demanding profession, medicine provided Dr Kelleher with the financial security to realise his creative ambition.
“Whereas, if I had to do it because it was how I earned a living, then it might go from something I enjoy doing to something I’d have to do. There is less pressure on me to do cartoons. I draw because I want to do them. I focus on ideas that are important to me and I work with people that I want to work for. I don’t feel obligated to have to do something to just earn money. And, I do actually like my day job. In saying that, it would be nice to draw cartoons all day,” Dr Kelleher explains.
Throughout medical school Dr Kelleher sent out his cartoons to newspapers and magazines across Ireland in the hope of being recognised. The first place to acknowledge his work was The Phoenix. Although his cartoons were being constantly published, the demands of medical school meant he had to put his illustrative ambitions on hold for a period.
“I had to cut down on what I did. I used to take a lot of art classes and I basically had to stop all that because of two things – time and space. Not like a studio, but a room in your house where all your paints are, which is hard when you’re moving around the country because you’re constantly starting a new job and don’t have enough free time. I think if you try and do one thing and do it well it’s probably more satisfying than doing something half-heartedly. That’s the main reason why it was so hard but for the moment, I’m happy doing cartoons. I do enough cartoons to keep me happy.
“Originally I worked for the Irish Medical News, but had to stop because my intern year at Beaumont Hospital was incredibly busy. At the end of my intern year, when things seemed to die down, I approached the Medical Independent (MI) and asked if they’d be interested in working with me and fortunately for me they were and here we are almost four years later,” he says.
Over the past four years Dr Kelleher has illustrated satirical cartoons for MI. The subjects he has tackled have ranged from detailing what a life in medicine is like on the frontline, to the repercussions of governmental and mangerial actions for both patients and staff, to the issue of emigration among NCHDs. His ideas are fuelled from years of working in the medical system. Dr Kelleher currently works in Beaumont Hospital as a trainee anaesthetist and describes his cartoons as a way to examine current topical issues that impact his work.
“I take a lot of my frustrations out in my cartoons. I am careful though not to draw something that directly relates to any person, or place that I’ve worked, because I don’t think that’s fair. My illustrations are related to things in general as opposed to any one or two people in particular, except for political figures. They invite it upon themselves, it’s part of the job [and] from being in the public eye. But, I like doing drawings for their own sake, not just satirical, but unfortunately I don’t have enough time to do them.”
MI asks Dr Kelleher about where he gets his ideas and who he is inspired by.
“They always just crop up. I could see something written down and think of a great illustration that would match it. Ideas just come to you. Most of my ideas come from just sitting down at the drawing board and writing out all the current issues in politics and healthcare and trying to think of ways to make them funny,” he replies.
Dr Kelleher takes inspiration for his illustrations from an era he calls the ‘golden age’ of cartoons. The themes and ideas that have been in cartoons published in the British papers during the 1940s and 50s are a constant source of influence.
American poet, T S Eliot, once said that “immature poets imitate and great poets steal”. The knack lies in learning how to steal like an artist when it comes to what you take inspiration from and what you create.
“A lot of it is inspired by other people’s work. If you look at political cartoons, in general, say over the past 100 years, there seems to be recurring themes. Some of my cartoons are copies, but copy isn’t the right word because that makes it sound less credible. There’s a lot of famous political cartoons. So some of the cartoons I do are influenced by that and are a tribute to them more than anything else and made as a nod to cartoonists who are far better than I am. These being David Low who worked for The Guardian and Victor ‘Vicky’ Weisz, who was a Hungarian cartoonist that worked for the Daily Mirror in the 1940s and 50s. Then there’s the famous current [cartoonists] – Martyn Turner and Gerald Scarfe, who is retired now. If you look back at a lot of themes that are always popping up, I draw inspiration from them.”
His love for medicine and cartoons has presented great opportunities for him over the years including illustrating a colouring book. Journey through the Brain was developed with Prof David Cotter, Prof Mary Cannon and Dr Lorna Lopez, researchers from the Department of Psychiatry in the RCSI, to bring their research to a wider audience, in particular children. Dr Kelleher was delighted to contribute.
“We sat down and talked about the most important things we wanted to cover. The reason why they asked me is because I had done illustrations like this before around neuroanatomy. I illustrated the cranial nerve and that was actually a drawing that was later adapted for the book.
“We looked at all the important topics, they obviously knew which ones are important enough to cover due to the fact that it is their area of expertise. We looked at the general anatomy of the brain and what they do. So ‘synapse’, which is how nerves talk to each other, and things like neurotransmitters and different functions for the brain. The left side versus the right [side of the brain]. Then we thought of how we would represent them and I went away and tried to draw them.”
According to Dr Kelleher, drawing also helps him overcome the stress of a medical career and the pressures that come with such a busy working atmosphere. Although he also finds exercise and practising mindfulness useful, he says that keeping his mind healthy for a strenuous job is important and for this, he credits drawing.
“Your day-to-day stress is a lot higher and particularly if your job is very busy. The hardest transition, from medical school to the hospital, is in terms of stress,” he comments.
This year marks the 20th anniversary of the foundation of the College of Anaesthetists of Ireland (CAI). It was founded as an independent College in 1998 but dates back to the formation of the Section of Anaesthesia of the Royal Academy of Medicine in Ireland in 1946 and the foundation of the Faculty of Anaesthetists of the Royal College of Surgeons in Ireland in 1959.
Prof Kevin Carson’s three-year term as CAI President will come to an end this year. Prof Carson, who is Consultant Intensivist Anaesthetist in Children’s University Hospital, Temple Street, is due to step down from the role at the end of September, when Dr Brian Kinirons will become the new President.
Speaking to the Medical Independent (MI), Prof Carson said the role is one he has very much enjoyed. One of the highlights of his term was when President of Ireland Michael D Higgins was recently bestowed an Honorary Fellowship.
“An Honorary Fellowship is the highest award that the College can bestow and is reserved for those who have made outstanding contributions to anaesthesia, intensive care and pain medicine, as well as acknowledging academics and those in leadership positions who act as role models,” according to Prof Carson.
“As a politician, poet and President, a human rights advocate and champion of the Irish language, President Higgins has been a leader in contemporary Irish politics for more than 40 years. He has played a significant role in advancing the arts, humanities and education in Ireland and further afield.”
President Higgins agreed to become patron of the CAI in 2016, a fact that is noted in its international global health activities. These overseas activities are vast, with partnerships in examinations in Malaysia, Oman, Bahrain, Jordan and Egypt.
CAI partners a flagship training programme in Malaysia in association with the College of Anaesthesiologists in the Academy of Medicine of Malaysia. The training programme has recently been endorsed by the Minister of Health in Malaysia and will be used to address the chronic shortage of specialist-trained anaesthetists in the country. The College has also recently signed a memorandum of understanding with the Chinese Society of Anaesthesiologists and the Chinese Medical Association to develop areas of co-operation and collaboration. According to the 2015 Lancet Commission on Global Surgery, five billion of the world’s population are without access to safe and affordable surgical care and anaesthesia.
Prof Kevin Carson, President, CAI
“It is estimated that 143 million additional surgical procedures are needed in the low- and middle-income countries each year to save lives and prevent disability,” commented Prof Carson.
This year, the CAI also sponsored two World Federation of Societies of Anaesthesia (WFSA) Fellowships in Ghana and Egypt to support low- and middle-income countries to develop a sustainable healthcare system.
“We continue to support the development of the College of Anaesthetists of East, Southern and Central Africa and later this year, a delegation from the College will return for a training programme in Malawi,” Prof Carson stated.
The mission of the WFSA is to advance the profession, ensuring that safe anaesthesia provision and training is led by anaesthesiologists.
Accordingly, the WFSA defines anaesthesiology as the medical science and practice of anaesthesia. It includes subspecialty areas of practice, such as perioperative medicine, pain medicine, resuscitation, trauma management and intensive care medicine.
The WFSA views the delivery of anaesthesia as a medical practice and an anaesthesiologist as a qualified physician who has completed a nationally-recognised medical training programme in anaesthesiology.
In light of the WFSA, European and US use of these terms, the wider role of the anaesthesiologist, and in the context of advocating for the specialty, the College balloted its Fellows and trainees on the introduction in Ireland of these terms, replacing ‘anaesthesia’ and ‘anaesthetist’ with ‘anaesthesiology’ and ‘anaesthesiologist’.
In Ireland, 60 per cent of those balloted were in favour of the changes.
“This will provide a massive opportunity for rebranding of the specialty and the chance to let the wider public know that anaesthesiologists are indeed perioperative specialist physicians,” said Prof Carson.
This change in terminology for the specialty will occur in early September. Prof Carson said such a rebranding is necessary, as many people are not fully aware of the role played by the specialty. The Australian and New Zealand College of Anaesthetists is undergoing a similar process.
The interaction of anaesthetists with patients in the operating theatre is only one point of contact, albeit a highly effective one, “as we manage some of the sickest patients, including those from the extremes of age, from 500 gram neonates, to our most fragile senior citizens with many comorbidities”.
“Recognition of these patients’ preoperative condition allows for their stabilisation and optimisation. Anaesthetists are involved in the management of patients during their clinical journey, from the time of consideration of surgery, to and after their discharge home. As such, we lay claim to being perioperative physicians. Consultant anaesthetists make up approximately 12 per cent of the consultant workforce in Ireland and are the largest hospital specialty. It is estimated that through our specialty and subspecialties that we are involved in the management of 70 per cent of patients who pass through our hospitals.”
Nationally, there is much debate about the factors influencing the consultant recruitment and retention crisis. In terms of anaesthesia, Prof Carson noted the positive fact that training programmes are over-subscribed.
“They are the highest subscribed training programmes in Ireland currently,” he said.
“And we have more than double the number of applicants for our training programmes than we do [have] places currently. I think with workforce planning, obviously with NDTP [National Doctors Training and Planning], I’m hopeful there will be expansion in consultant numbers. We have young, well-trained people willing to accept the posts. For example, the recent posts that were advertised; they were well subscribed to. And people were returning from overseas very highly qualified, many of them with high third-level research degrees as well. So I think the future for anaesthesia is bright.”
Prof Carson does not believe salary issues, such as the new-entrant salary cut, are the only considerations for consultants thinking about taking up a role in the Irish health service.
“Whilst income is an important determinant of successful recruitment and retention, it is not the only factor, with issues such as job design, quality of workplace conditions, office space, dedicated teaching and research time and work/life balance with reasonable rotas being key factors influencing doctors’ decisions [whether] to work in Ireland,” he said.
Prof Carson said the College is committed to supporting the sustainable growth of a diverse, high-quality and healthy anaesthesia, intensive care and pain medicine workforce so that all communities in Ireland have access to high-quality anaesthesia, pain medicine and perioperative services, provided by clinicians who are supported both personally and professionally.
“Over the past number of years, we have introduced a variety of wellbeing initiatives, like our mentoring programme, continuous improvement of our hospital site inspection process, introduced wellness as a core topic on our induction programmes, and advocated to Government, the Department of Health, HIQA, HSE and the Medical Council on the importance of medical workforce health and wellbeing,” he stated.
Prof Carson said 2018 has been a “tremendous year in the life of the College”, with many projects maturing and coming to fruition.
The CAI completed its specialty guidance document on ethics and professionalism to reflect the particular contribution from anaesthesia, intensive care and pain medicine, covering topics such as advocacy, consent, breaking bad news and end-of-life issues.
In line with best practice, it has recently updated its governance framework, developing a new strategic plan to help guide the organisation over the coming years.
“During my Presidency, I have supported the continuous improvement initiatives underway in the three robust pillars that support and lend structure to the various activities of the College. These pillars are training, education, innovation and research; examinations; and patient safety and standards. Over the past three years, our high-fidelity, award-winning simulation department continued to play an essential role in clinical education and training and I am delighted that we have just completed the development of a second purpose-built floor of the clinical sciences building for ICU/ED/ward scenarios. We look forward to forming new partnerships to expand our reach in this high-demand area.”
Research and innovation remain a foundation and catalyst for the continued growth and development of the specialty. The College has doubled its research grant funding for Ireland-based research over the past three years and Prof Carson negotiated an annual grant from the British Journal of Anaesthesia for £50,000, with matched funding from the College for collaborative research.
“I have particularly enjoyed developing partnerships with international partners focused on improving patient care,” said Prof Carson.
“Our participation in the Tri-Nations (Anaesthesia) Common Issues Group with the Royal College of Anaesthetists and the Australian and New Zealand College of Anaesthetists gives an opportunity to discuss issues impacting anaesthesia at global level, for example worldwide drug shortages. Notwithstanding our splendid headquarters building in Merrion Square, the College is a vibrant body made up of Fellows, members, trainees and administrative staff, with the Executive and Council at its heart. I’ve really enjoyed the time of my caretakership and leadership of the College and now look forward to the next challenge.”
Prof Carson also wished Dr Kinirons every success as the incoming President of the College.
“If they were in a European or North American context, (the patients) would have survived… So it’s frustrating, but it’s something you just have to do your best with and work in the conditions you are working in with the facilities you have.”
Dr Deirdre Foley, a medical and paediatric doctor, is speaking to the Medical Independent (MI) about her experience of being part of a Médecins Sans Frontières (MSF) mission in the small town of Tal Ahyab, Syria. It is a town in Northern Syria, along the Turkish borders, approximately 100km north of Raqqa. Dr Foley was based there from December 2017 to June 2018.
Her main responsibilities included treating and caring for children in the paediatric wards, inpatient and outpatient departments. Dr Foley says there are many challenges for doctors when working in a war-torn country such as Syria.
“There were maybe three-to-five paediatric deaths per week and this is hard to emotionally deal with, because you would do everything [to keep them alive],” she says.
“We would give them all medication that we thought could help, but there was nowhere else to send them and there were no facilities for ventilation. So at a certain point, we just had to stop, and this is very frustrating.”
The scale of the death and suffering of children was much greater than she experienced working in Irish hospitals.
“My experience working in Temple Street and Crumlin has meant I witnessed a few paediatric deaths, but many of these were receiving palliative care and they were semi-expected,” Dr Foley says.
Dr Deirdre Foley
With the ongoing conflict in Syria, conditions in healthcare facilities cannot be compared to more affluent and well-off countries. According to Dr Foley, many of the healthcare facilities and services were severely damaged. Dr Foley and the rest of the MSF staff had to work in an extremely small hospital, as there were no other adequate facilities in the area.
“So we have a tiny hospital and even though the actual space wasn’t big enough and there was a bit to be desired in the structure of the hospital… we really got the best out of things, and we’re really lucky to have had the hospital to use by the medical service. There were no other hospitals in the area that could do that,” Dr Foley says.
One of the chief objectives during her six months in Syria was the ‘Thalassemia Project’.
Thalassemia is an inherited blood disorder characterised by abnormal haemoglobin production. It is widespread in countries in the Middle East and can also be found in pockets of Asia. And thalassemia is also prevalent in Syria.
Treatments for this disease come typically through blood transfusions and iron chelation methods.
“These children are dependent on blood transfusions and we meet them very frequently, every two-to-three weeks. So it’s kind of a big thing in Syria. In the community, everyone knows someone who is affected by thalassemia. As a community, they really want to push and get the best services they can and these services have been decimated by the years of conflict. So what we did was, we worked on improving the safety of blood transfusions and improving the service,” Dr Foley explains.
She also believes that cases of thalassemia were aggravated as a result of the ongoing struggles in the country. Dr Foley says: “Because of the conflict in Syria, a lot of the blood transfusions received in other units outside the MSF hospitals haven’t been tested properly for hepatitis B and C. A lot of children have contracted hepatitis C from blood transfusions and are chronic carriers, and this will probably lead to liver complications.
“Also, there is a higher risk of heart failure if they are not getting enough transfusions and the frequent transfusions cause iron to build up all over their body, especially in their liver, joints, heart. This leads to cardiac failure and liver failure, and they often die in their late teens or 20s.”
One of MSF’s most recent innovations to reduce the amount of iron accumulated in the children’s bodies is by providing iron chelation medicine.
“This is the first time MSF ever did this. This [iron chelation] basically decreases the amount of iron built up in their body from the blood transfusions and vastly improves their quality-of-life and their life expectancy,” she says.
Another serious health challenge facing patients in these areas is pneumonia. According to Dr Foley, pneumonia is especially severe in newborns.
“Many of these babies had heart problems that they were born with as well. They had congenital heart disease. This [is caused by] a mixture of smoking indoors and cooking indoors and lack of vaccination, leading to severe pneumonia in the under-fives and the under-ones.
“We also had a lot of diarrhoea illness and viral gastroenteritis. This was just related to poor sanitation, especially in the camps for internally-displaced persons; the facilities weren’t adequate for washing and cleaning and hand-hygiene. So we saw a lot of these diarrhoea-related illnesses spread like wildfire and we would get carloads of 10 patients coming in at once from camps or villages needing treatment.”
Other diseases that arose with patients at the hospital were diabetes, due to the lack of access to specialist doctors and medication. Meningitis and sepsis in babies were also relatively common.
“I think a lot of these medical problems were because the presentation was a lot later in these children and because it was difficult for these children to get to these hospitals; it would often take them a few days to travel there. And a lot of times, roads were blocked or it was unsafe for them to travel on the roads for political reasons, so presentation was usually very late. But as well, the family structures had been broken down and one might have been separated from mothers and sisters… so you had a poor kind of education and poor recognition of a sick child in the family because of the breakdown in social structure and family support.”
Throughout her time in Syria, Dr Foley has faced various tough emotional situations. Coping with patients who were very ill, or who had died, was particularly difficult, given the already challenging context she was working in.
“The main thing that I used to do when I had any patients who stuck out in my mind that were particularly complex or that had passed away or that were very unwell — I would write them down in a little diary, just the story of the patient. I think this was good for self-reflection just to get your emotions and frustrations about what you couldn’t do for the patient out, and also to see if there was anything I could have been doing a little better in these cases.”
She continued: “If you are seeing a person die in front of you, I think this [writing in a diary] really helps you release the mental burden of you carrying it around. So I felt that this helped a lot… This was very distressing and a lot of us, because we’re all working in the same environment, the ex-pat team in Tal Ahyab were very close and we would talk a lot with each other and support each other as well. So it was a very supportive environment to be in.”
Dr Foley believes her job is purposeful because she is be able to save the lives of people and witness their recovery process, regardless of the struggles she has to endure. She also believes that the teaching aspects of the job make the mission worthwhile.
“The other thing was the teaching and mentoring with the medical and nursing staff in the hospital. We saw, because the education system for the staff had been broken down for so many years, that once we started providing education sessions, we saw a really rapid and amazing improvement in staff and their work, which was fantastic to see and it feels very good that they can hopefully continue carrying on the work and continue to improve as long as education is being provided so it seems like not so much a quick-fix, but a more long-term solution,” Dr Foley says.
The FIFA World Cup recently kicked off in the stadiums of Russia, unfortunately without the boys in green. Due to Ireland’s absence from the tournament, Irish team doctor Dr Alan Byrne is still in Dublin, where he works as a consultant in Sports and Exercise Medicine in the Beacon Hospital and also as a GP in his practice in Knocklyon.
While the team’s absence from the World Cup reduces his work commitments with the Football Association of Ireland (FAI), there are still duties that must be fulfilled.
“Some of them (the players) are recovering from injury and I have been in regular contact with those players, such as James McCarthy, who is recovering from a fractured tibia,” Dr Byrne, who is also Medical Director of the FAI, told the Medical Independent (MI). “I have been in contact with Everton FC to check if he is doing well.”
“Between now and September, I won’t be working specifically with the national team, but I’ll be working in the background.”
Dr Alan Byrne
Dr Byrne’s father is Johnny Byrne, a former Shelbourne FC manager. His family background gave Dr Byrne a deep love of the game. He served as team doctor for Shelbourne between 1993 and 1999, before the opportunity came to be team doctor of the national football team.
“My predecessor [as Irish team doctor] was Mr Martin Walsh, an orthopaedic surgeon. He asked me if I could help out and I looked after the women’s team for the first year, and then I went through there to the under-15 boys’ team for about four years. Then Martin Walsh retired and the position was up for interview. I interviewed for the job and was appointed in December 2003.”
And he has never looked back since. “This is my 15th year in the job now and sports medicine was more or less in its infancy back then,” said Dr Byrne.
Ireland’s next match is away against Poland in an international friendly next September. But contrary to general perception, a team doctor’s role actually begins weeks before a scheduled match is played.
“In the lead-up to a typical squad announcement two weeks before a match, there’s the checking-up with the English clubs, where most of them play,” Dr Byrne said.
His responsibility is to communicate with the relevant medical staff of the clubs on the medical conditions of the players. The Irish senior team manager, Martin O’Neill, is then informed on the availability of a player to come into training camp and whether they are fit enough for team selection.
“When they come into the camp, it’s about managing those problems; there are lots of minor injuries happening throughout the course of the camp. And I link and communicate with the management team, with the unbelievable support of the physiotherapists who work with me, and the other medical professionals. It’s really about decision-making and preparation and really preparing in a forensic way for all eventualities with the support network.”
Decision-making and conscientious preparation are especially important when preparing teams for a major tournament, which is one of the milestones in the players’ careers and is also a major event for staff. While Ireland’s absence from the World Cup 2018 is disappointing, the process of preparing for the past two European Championships have been highlights of Dr Byrne’s career.
Euro 2012 in Poland and Ukraine was Dr Byrne’s first participation in the finals of a major tournament as team doctor, and preparing for the tournament was a mammoth exercise in itself.
“From November, when we beat Estonia, we started the process [of preparation]. It’s like having an extra working day. We visited Poland/Ukraine and made sure the facilities [dentistry, cardiology, imaging, physio-rehabilitation] are there. All the players needed to have a cardiac assessment and there were communications with the different clubs.”
Training and injuries
Injuries are common in all sports and this is especially the case in a physical contact team sport, such as football.
The most common injuries footballers face are injuries to the lower limbs, including muscle strains, hamstring injuries and ankle ligament injuries.
Over the years, Dr Byrne has witnessed different variations of injuries. These have ranged from the relatively minor to the life-threatening.
“On the field of play, I suppose most famously — Shane Duffy nearly dying in the training ground, where he nearly bled to death — was challenging at the time. I’m not breaking any confidence with the manager, but Giovanni Trapattoni [then senior Irish team manager] at that time also become unwell and had a surgical problem. And most recently is the case of Seamus Coleman’s fractured tibia in March last year against Wales, and Robbie Brady’s concussion in the same year.”
Injuries are an unavoidable part of the game. All that can be done is to reduce the risk factors as much as possible, and to manage injuries more efficiently.
While Dr Byrne does not take part in the ins-and-outs of regular training sessions, he does have a say on the training sessions for injured players.
“I work with Dan Horan, our fitness and conditioning coach, a physiotherapist and our sports scientist. We’ve got three physiotherapists and an osteopath. We would sit down and maybe if somebody is recovering from an injury, we would look to manage their load and maybe share that information with the club.
“Sometimes the players will come over to us and continue the rehabilitation, with a view perhaps to playing if they’re recovering from injury. Then I will liaise with the club, their division and their sports scientists, fitness scientists, and with our guys. So with injured players, yes [they are involved in training]. Our fitness and conditioning coach would liaise with the coaching staff on the content of the normal training sessions.”
Over the years, football players have benefitted from the vast improvement of football medical science, but Dr Byrne notes that there are some injuries that have continued to increase in frequency, such as hamstring injuries.
“Hamstring injuries, despite all of our attempts to prevent them, to improve recovery; they’re actually increasing. We don’t know why that is so, but there’s definitely an increase in hamstring injuries. We’re not getting players back sooner than we used to, despite lots of interventions. There has been an interesting study, as part of the UEFA longitudinal analysis, about the management and coaching styles that can have an influence on injuries. Like anything to do with this area and other areas of medicine, there are many different factors that are involved. There’s no doubt that when you look at the strength, the size and athleticism of the players, so much has changed.
Ireland’s Robbie Keane after his last appearance for the team, with manager Martin O’Neill, Dr Alan Byrne and other back-room staff
“Our players go to the gym before training. I’d say 10 years ago, maybe a few might, but now they all go. And some of them might go after training in the afternoon. I presume that contributes in some way to the level of trauma that can be experienced,” Dr Byrne explained.
Looking to the future
After this summer, Dr Byrne is eager to return to footballing action with the team and hopefully help Ireland qualify for Euro 2020.
“I’ve been lucky to be involved with the team for a long time, so there are players like Damien Duff, Robbie Keane, Shay Given, John O’Shea, who’ve all reached 100 caps or more and I had the pleasure of looking after them. To form a strong professional relationship with them has been very satisfying. The staff we have are a really great group of people to work with, and that makes everyday work in a team environment very enjoyable. It’s very difficult to beat watching fans enjoying our team winning. It’s an incredible experience.”
Being a GP at his practice, Consultant in Sports and Exercise Medicine at Beacon Hospital, Medical Director for the FAI and team doctor of Ireland’s national football team, Dr Byrne is thoroughly engaged with different areas of his profession.
“It gives a lot of variety in work and tests a lot of skill sets,” he said. “I’ve enjoyed the mix of different types of challenges that different jobs present.
“But it’s very important to emphasise that players are patients as well.”
On the changes in football medical staff
“My first game was on 18 February 2004 against Brazil. It was a friendly. There was me, a physiotherapist and a masseur. Now, we have an orthopaedic surgeon, three physiotherapists, an osteopath and sports scientist, a performance analyst and a chef.
“We’ve got unbelievable radiology support from Prof Steve Eustace. I’ve mentioned the orthopaedic surgeon, Prof John O’Byrne; equally the Beacon, Mr Maurice Neligan and Mr Gary O’Toole, both orthopaedic surgeons [are also involved]. Mr O’Toole operated on Seamus Coleman with Prof John O’Byrne. So the qualification, number of staff and variety of staff has really expanded.”
On media attention to sports injuries
“I think the attention from the media has really increased, where people are interested in what the injury is. I noticed when England entered their camp [for the World Cup 2018], there was talk of one of the players picking up a knock from training. I think it was [Marcus] Rashford. If there’s any injury, it will attract attention because people are interested. There’s more focus and pressure as a result of that. There’s also more politics involved.”
Obesity is “public health problem number one”, according to Prof Donal O’Shea, Consultant Endocrinologist and Physician based in St Vincent’s University Hospital and St Columcille’s Hospital.
Prof O’Shea is in a position to know the serious challenges posed by obesity in Ireland. As first reported by the Medical independent (MI) last July, and officially announced in September, he is the first ever HSE Clinical Lead for Obesity.
The announcement of his appointment came a year after the Department of Health launched its A Healthy Weight for Ireland: Obesity Policy and Action Plan 2016 – 2025.
Speaking to MI less than a month after the introduction of the sugar-sweetened drinks (SSD) tax, Prof O’Shea said he was “thoroughly enjoying the role”. However, he warned that if the first phase of the obesity action plan is not sufficiently funded in the upcoming estimates process he does not intend to stay long in the post (see news story, page 3).
In truth, Prof O’Shea’s appointment last September was not a surprise. He has long been a strong advocate on obesity issues in medical and media forums. He has regularly appeared on RTÉ’s popular show Operation Transformation.
He qualified from University College Dublin in 1989, moved to Hammersmith Hospital in London and was awarded a Wellcome Trust Training Fellowship to study how the brain controls appetite.
Since 1999, he has been the lead clinician for a hospital-based multi-disciplinary obesity service, which includes bariatric surgery. In recent years he chaired the health impact assessment group on the potential benefits and harms of a SSD tax and he still co-chairs the RCPI Policy Group on Obesity.
The SSD tax was introduced at the beginning of last month and Prof O’Shea describes the new tax as “very important”. He says the debate around it proved educational for the public in terms of asking questions such as, “Are young people in particular drinking too much liquid sugar?”
But he also notes the important political moment it represents.
“The food and drinks industry strongly opposed it,” he tells MI.
“They lobbied incredibly strongly, but the Government pushed it over the line. It is the first fiscal policy measure that has actually become law, to deal with the obesity epidemic.”
Prof Donal O’Shea
Prof O’Shea calls this epidemic “our public health problem number one” thus the SSD tax is a “massive moment”.
However, he is cautious about its potential. “Now it’s not going to work in isolation”, he warns, “no single measure is going to deal with the obesity problem. We need now to evaluate its effectiveness.”
On the positive side, Prof O’Shea notes that sugar levels dropped in some drinks as the industry reformulated their products to come under the new tax threshold. Worryingly, he adds “industry are already promoting sugar sweetened drinks special offers in supermarkets to try and pull a rug under the carpet of the tax.
“Their promotions over the next number of months are all geared up to heavily favour the ‘buy one and get one free’ of sugary drinks.”
But on this topic the Clinical Lead for Obesity is full of praise for the “Government [who] stepped up to the plate to face down industry and all the lobbying.
“The tax will reduce the consumption of sugar sweetened drinks that will impact positively, particularly on children.”
In recent months, public health advocates have continually raised concerns over the intense lobbying from the alcohol industry around the Public Health (Alcohol) Bill. Prof O’Shea says the issue is a live one in the area of obesity measures as well.
“Lobbying is massive in Ireland. It’s huge in Europe,” says Prof O’Shea who points to the example of the food and drinks industry opposition to the introduction of ‘a traffic light labelling’ system on food.
The industry lobbied in Europe “to the tune of multiple millions” to have the measures blocked, he says.
“The food and drinks industry have to do their job, you have to accept that. Their job is around profit and maintaining the status quo.”
But if the SSD tax is such a big step forward, could other taxation policies be introduced to help in the fight against obesity?
Prof O’Shea says potentially, but he wants to see the results from the impact of the tax on consumers and others.
“You know we will have to wait and see how we evaluate the impact of the tax,” he says.
“I think when you look at the way all high fat, high salt, high sugar foods are marketed to our kids, the idea that you would expand the tax to sweets, biscuits, more of these top-shelf foods, you know there is a logic to that.
“But I think it would be naïve to think you are going to tax your way out of the obesity epidemic.”
One measure that Prof O’Shea would like to see introduced as a “matter of urgency” is calorie posting on menu boards. This is something Government has indicated it will do, but so far the “legislative process is achingly slow”.
“With calorie posting this is another good example of industry saying ‘we will do it voluntarily’. But they are actually stalling.
“They are clearly not doing it on a voluntary basis, so they are trying to frustrate the legislative process.
“It is a measure [that works], where it has been introduced; 30 per cent of people who go into buy something have their choice influenced.
“You can ignore it if you want, 70 per cent will ignore, but 30 per cent making a positive health choice is massive. The other impact of this calorie posting is portion size. If you have a muffin that is at 437 calories it doesn’t sell. So what you do is make it a 350 calorie muffin.”
The HSE Clinical Lead for Obesity tells MI he is critical of promotional campaigns run by major fast food companies like McDonald’s, which he believes target children. He is also on record as being opposed to the proposed sponsorship of a wing of the new National Children’s Hospital by Ronald McDonald House, which is a charity connected to McDonald’s.
Since 1999, Prof O’Shea has been the lead clinician in an obesity service that includes bariatric surgery.
He sees this surgery as an important aspect of dealing with the obesity epidemic, but he warns not enough is being done in Ireland.
“It’s historically underfunded. We are doing a miniscule [amount of] bariatric surgery,” he tells MI.
“In France, they do 800 operations per million of population, that’s the high end. The Scandinavian countries do 200 operations per million of their population. Last year in Ireland we did 12 operations per million of our population. At the moment bariatric surgery is the most effective treatment for extreme obesity.”
Prof O’Shea promises he will knock on the doors of the Department of Finance to make his case.
“My next planned trip is to try and get into the Department of Finance, because they should be asking the Department of Health to make sure an active programme of bariatric surgery is going on,” he says.
“It doesn’t make any economic sense not to be doing it. Within two years the operation pays for itself in terms of reducing the cost of the medication that people are on. Also people can get back to work and then contribute to the tax base, etc.
“People with obesity are still actively discriminated against. It seems to be socially acceptable to do that. But we have now arrived at the situation where the evidence-base is so broad for the benefits of bariatric surgery.”
The medical profession has an important role to play in the obesity challenge, he adds.
“There is better awareness than there used to be [among doctors],” says Prof O’Shea.
“I find GPs are way more empathetic towards the obese individual than my hospital-based consultant colleagues. I’m not sure why that is.
“I think maybe it’s because primary care physicians are dealing with the whole patient and they see that the obesity is impacting on every bit of their health profile, mental as well as physical.
“Whereas the orthopedic consultant will say ‘go away and lose weight and then I will do your hip’ or the cardiologist will say ‘you’re fat…you have to lose weight’. Just crazy stuff in 2018 when we understand the drivers of obesity better.”
But despite the serious challenges Prof O’Shea says he is “enjoying the role”.
“I am hopeful and I am enjoying trying to push it [obesity policy plan] over the line. Hopefully we will get there.”
The worrying news of a new outbreak of Ebola in the Democratic Republic of Congo (DRC) has reminded the world of the continuing challenges posed by serious infections and the specific impact this has on doctors and other healthcare workers.
Earlier this month, an Ebola outbreak was declared in the north-west of the DRC and, as of 11 May, the WHO has reported 39 cases.
The personal toll on healthcare workers and the challenges posed by such outbreaks to doctors and nurses was one of the topics discussed at the recent 32nd International Congress of Occupational Health (ICOH 2018), hosted by the RCPI in the Convention Centre, Dublin.
Prof David Koh qualified in medicine and specialised in occupational medicine in Singapore, where he worked for over 25 years, including during the deadly SARS (Severe Acute Respiratory Syndrome) outbreak in 2003. Now Distinguished Professor at the Universiti Brunei Darussalam and Fellow of the Faculty of Occupational Medicine at the RCPI, he spoke at ICOH 2018.
Recounting his frontline experience during the SARS epidemic, Prof Koh emphasised that there was a series of lessons that doctors and other healthcare workers could take from that intense professional experience.
“We had a few painful lessons from this outbreak of SARS,” Prof Koh told an audience of international occupational health experts and practitioners.
“The first thing that struck us very deeply was that SARS was a very grim reminder to us that healthcare work can be hazardous. We had colleagues in healthcare who came down with SARS and unfortunately, some of them even succumbed to the illness,” said Prof Koh.
“If we look at the data from across the world, about 21 per cent of all the SARS patients were healthcare workers — a range that was from about 3 per cent in the US, to in excess of 40 per cent in countries such as Canada and in Singapore.”
Prof David Koh
SARS was first reported in Asia in February 2003. Over the next few months, the illness spread to more than 20 countries in North America, South America, Europe and Asia before the outbreak was contained.
According to the WHO, a total of 8,098 people worldwide became sick with SARS during the outbreak. Of these, 774 died. It caused healthcare emergencies in countries as distant from each other as Singapore, China and Canada.
Prof Koh said the outbreak proved that all healthcare workers, “including the traditional healers”, are potentially at risk, with proximity to patients and exposure to contaminated surfaces among the factors that influence the possibility of infection.
“The second lesson we learned from this SARS epidemic was that the threat of SARS extended way beyond the infection,” said Prof Koh.
“What do I mean by this? Reports from Canada first documented that the psychological effects were very prevalent among healthcare workers; there was a very high degree of stress experienced by over a third of hospital workers. In other countries, overwork was very common because healthcare workers had to work overtime; there were increased job demands.
“There were also social effects on the healthcare workers, as well as their families and friends.
“People close to them were worried about their health, and people close to them were worried that they might get infected.”
Prof Koh reflected on his own direct experience: “So during that period of time, whenever I went home, my wife would make sure that I would disinfect my shoes, I had to get rid of all my clothes before I could even go near to her or near to the children, so this was a very real fear.”
He added that a survey among doctors, nurses and healthcare staff in Singapore has also reflected this deep impact.
“They felt that people avoided them because of their job,” said Prof Koh. “So if you were in your uniform and you went on public transport, all of a sudden you found it very easy to get a seat on a crowded bus because everybody ran away from you.”
Such public experiences were not merely confined to buses and trains.
“In those days, when I wanted to take a taxi to work, once I told the taxi driver that I was going to hospital, sometimes the taxi driver became very uncomfortable. He would normally drop me some distance away from the hospital because he didn’t want to go near it. So it was as bad as that.”
He added that many doctors and nurses “felt that people avoided their family members because of their job”.
“So when my children went to the childcare centre, you could hear the teachers and the other children say, ‘you better avoid this boy or girl because his father is a doctor’. That was a kind of stigma that was associated, even among family members.”
But Prof Koh emphasised that the experience was not universally negative.
“About 80 per cent of respondents [to the survey] felt that they were appreciated at the hospital and by colleagues. And about 77 per cent felt appreciated by society and indeed, many of them were hailed as heroes in trying to protect the health of the country,” he said.
Looking back on the reaction of doctors and nurses in hospital, Prof Koh said the experience proved that the “general principles of prevention and control of an infectious disease are effective for SARS”.
He said figures prove that good hand-hygiene, masks, and gowns worn properly all had an impact on whether doctors and others contracted the infection.
“So the use of personal protective equipment (PPE) was very important to contain the spread of SARS among healthcare workers. Implementing this was difficult, because suddenly, overnight, we had to wear PPE. Most did not have fit testing, they did not have proper training in how to wear them or remove the PPE, they didn’t know very much about disposal, cleaning, decontamination.
“Nowadays in Hong Kong, Singapore and so on, we know all this very well but 15 years ago, we had very limited knowledge about this,” he said.
Considering that he was speaking at a conference attended by hundreds of international experts in occupational health, Prof Koh was clear that “because SARS is an occupational disease, it requires an occupational health response”.
During the 2003 outbreak, he spoke to taxi drivers, food preparation handlers, laboratory researchers, stock exchange staff and sewage workers to advise them on what measures they could take to prevent the spread of the infection in their workplace.
“Emerging occupational health infections will continue to pose threats to healthcare workers,” said Prof Koh. “We are reminded that healthcare work can sometimes kill the healthcare workers.
“The good thing about SARS is that the general principles of prevention and control were found to be very effective. We know that SARS or something else will come back. We should remain ever vigilant; we should prepare ourselves for the next outbreak.”
Prof Koh was one of the many speakers who presented to delegates from across the world who attended the ICOH 2018 in Dublin at the beginning of May.
The week-long conference saw talks and debates on various aspects of occupational health.
Stillbirth is 10 times more common than sudden infant death syndrome (SIDS). Yet there is much greater awareness of cot death and how to prevent it than there is of stillbirth.
The statistic comes as a shock to those unfamiliar with stillbirth. But for Dr (PhD) Daniel Nuzum, Lecturer at University College Cork (UCC) and Pastoral Care Advisor at Cork University Maternity Hospital (CUMH), the statistic is a familiar one.
Dr Daniel Nuzum
Dr Nuzum has been part of the Pregnancy Loss Research Group led by CUMH Consultant Obstetrician Dr Keelin O’Donoghue since its inception at UCC and CUMH.
During his time providing pastoral care to bereaved parents at the hospital, Dr Nuzum became interested in learning more about the area and completed a doctorate looking at the spiritual and professional impact of stillbirth.
“It prompted questions from me about how we provide care and how we meet the needs of bereaved parents during what is a very difficult time. When most people think of a maternity hospital, they think of everyone coming in and having their baby and the feeling of joy, but for a number of our parents, that is not the case,” Dr Nuzum explained.
He has published a number of studies on the topic and most recently an article, ‘The impact of stillbirth on bereaved parents: A qualitative study’ featured in the scientific journal PLOS One.
Meanwhile, ‘The public awareness of stillbirth: An Irish population study’ was published late last year in BJOG, An International Journal of Obstetrics and Gynaecology.
The latter study concluded: “There is a lack of public knowledge concerning the incidence, risk factors and causes of stillbirth. Improved public health initiatives and antenatal education are warranted to increase awareness of stillbirth risk factors and to improve care and monitoring during pregnancy.”
The findings were the result of a random cross-sectional telephone survey of 999 Irish residents.
“Part of reducing preventable stillbirth is assessing the knowledge base of people to understand what the risk factors are, because if you don’t know what the risk factors are, you don’t know what to look out for. That was a big thing that came out for us in the public awareness paper — that 56 per cent of participants were unable to identify a single risk factor for stillbirth, and that raises a health issue. How do we increase awareness of stillbirth in a calm way, not in a way that might frighten pregnant mums and their partners?” Dr Nuzum asked.
The study revealed that 79 per cent believed that all stillbirths should be medically investigated. Stillbirth was represented in traditional and online media for 75 per cent of respondents and 54 per cent said they personally knew someone who had a stillbirth.
The PLOS One study explored the “lived experiences and personal impact of stillbirth on bereaved parents”.
“Bereaved parents would tell us about the sense of isolation they experience,” Dr Nuzum revealed of the study, which involved in-depth interviews.
“That they, for example, never knew this [stillbirth] was a possibility. If you contrast that with, say, education around sudden infant death syndrome, cot death, there is lots of public awareness around cot death… but stillbirth is 10 times more common than cot death. I don’t think we frighten parents by giving them information about cot death, so I would indicate that the same would be true of stillbirth.
“It helps us to hear what this experience is really like for bereaved parents. What it’s like to experience that utter devastation when literally, in an instant you can move from expecting a new baby and planning the future, and then suddenly for that to be changed. Now you’re experiencing profound grief that will always be there with you.”
Some 2.6 million stillbirths occur internationally every year and in Ireland, the national stillbirth rate is 4.5 per 1,000, according to the Perinatal Mortality in Ireland Annual Report 2015.
In 2016, the HSE published the National Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death. Dr Nuzum was involved in the bereavement standards working group in devising the standards. He is currently working with Dr O’Donoghue, Chair of the National Implementation Group for the standards, in their implementation.
The standards define the care parents and families can expect to receive following a pregnancy loss or perinatal death and focus on four areas, including: Bereavement care; the hospital; the baby and parents; and staff.
They were developed in response to recommendations in the HSE’s investigation report into the death of Savita Halappanavar and the report of Dr Peter Boylan following his review of maternity cases at Portlaoise Hospital.
“What’s really important about the bereavement standards is to be able to have a consistency of care around each of our 19 maternity units. Whether you are in one of the smaller units or you’re in the largest unit, if you’re a bereaved parent, you deserve the best quality of care and access to care and access to diagnostics,” Dr Nuzum said.
“In the media, we’ve learned in recent years that experiences around the country would be very different for parents and so the great thing about the bereavement standards is, for the first time we have a national guideline, a national standard, and so that means that we have a template to work from and a guideline to benchmark our services. If you are a bereaved parent, in many ways it doesn’t really matter whether it happens every week in the unit or you’re the only one in the year, because to you, that is your one bereavement, so wherever you are, your experience is really important.”
The standards are aiming to ensure consistency of care across every unit and delivery of the best care for parents.
Dr Nuzum said that, while the outcome cannot be changed, how hospitals and healthcare professionals care for bereaved parents can be changed.
“We can do a lot of work to improve our communication and facilities and to improve joined-up and integrated care for bereaved parents, because everything impacts on their overall experience,” he said.
“For example, in our hospital we have a logo and sticker that we use so that everybody knows that this is a bereaved family and they are cared for in a particular way… how their appointments are scheduled or cancelled, flexible visiting hours so their partner can stay overnight, and so forth. These may sound like little things but they are really important for families.”
Another area of focus for Dr Nuzum is staff education and support. He places a huge emphasis on the importance of nurturing and educating staff in order to provide the best possible care to patients.
“Because we’re human, it is a tragedy when a baby dies and we can have a sense of failure and a sense of ‘did I miss something here?’ and that’s hard, so we also do a lot of work around how we support staff and look after our team.
“Ultimately, everything goes back to our bereaved parents because if a team is well cared for, then they care better for the people they are looking after. From my point of view, everything returns to bereaved parents. They are at the heart of everything we’re doing.”
HSE National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death (2016)
The standards are built around four central themes:
Bereavement Care is central to the mission of the hospital and is offered in accordance with the religious, secular, ethnic, social and cultural values of the parents who have experienced a pregnancy loss or perinatal death.
The hospital has systems in place to ensure that bereavement care and end-of-life care for babies is central to the mission of the hospital and is organised around the needs of babies and their families.
The baby/family receives high-quality palliative and end-of-life care that is appropriate to his/her needs and to the wishes of his/her parents.
The hospital staff have access to education and training opportunities in the delivery of compassionate bereavement and end-of-life care in accordance with their roles and responsibilities.
The death of Northern Ireland politician Martin McGuinness from amyloidosis in 2017 highlighted how local genetic patterns can inform population risk.
Amyloidosis is a rare disease caused by a genetic mutation that is relatively common in Ireland’s north-west, where prevalence is over 1 per cent. However, Prof John Greally, an Irish geneticist at Albert Einstein College of Medicine, New York, US, says there are many unknowns regarding predisposition of the Irish population to various other diseases.
Prof Greally is among a number of clinicians and scientists leading efforts to establish an Irish genome project. He says this resource would provide vital insights into disease risks locally and nationally.
“Nationally, we can figure out what is actually our national burden of haemochromatosis, cystic fibrosis, galactosemia, and all of these other conditions. That would allow us to understand what we are predisposed to as a nation, some of which we’d only really start to pick up once we looked at the DNA. We probably don’t realise all the genetic diseases to which we are predisposed,” he tells the Medical Independent (MI).
There is an early opportunity to create a genetic test based on microarray technology, according to Prof Greally.
“We could develop a microarray that is tuned to the Irish population, where we are going to put probes on this microarray that actually detect things in an Irish population. Even if we don’t have enough information in the short-term, we’ll have enough information to build a pretty good alpha version of a microarray.
“And what we’d be able to do then is have it so that if a general practitioner had a patient who was starting on say, warfarin, one of those medications where your genetic background can actually predict whether you are going to have an idiosyncratic reaction to the drug. They could do a pharmacogenomics profiling, as we call it, to see if a person has an unusual DNA sequence that says they are just not going to metabolise the drug effectively, or whatever [the situation] might be.”
Prof John Greally
This would help to reduce medication-related complications, outlines Prof Greally. A tube for saliva collection would be required for a microarray; this could then be posted to the testing service, where the equipment for microarray assays would be located, and results returned to the GP, like any other lab test.
“There are all these DNA sequences that help to predict our risk of developing things like diabetes and so on,” continues Prof Greally. “For example, for somebody who is gaining a bit of weight in their 20s and 30s, the GP may say ‘look, I want to see whether you are really at risk of this as we now want to do something more aggressive with you in terms of lifestyle intervention before you develop a real problem with your blood sugar’.”
This could be introduced in the short-term and bring notable health benefits, he says.
Prof Greally also points to the economic potential of the area. He says many countries are pursuing genome projects because the “return seems to be immense”.
“It is very difficult to predict what an Irish genome project would generate in terms of economic reward, but it is likely it would be a revenue generator in a very significant way.”
He says the work of Dr Gianpiero Cavalleri, Associate Professor in Human Genetics, RCSI, suggests that the population of Ireland is very homogenous and this presents advantages in respect of genetic surveying.
“We are what is called a ‘founder effect population’. In populations like ours, it is actually quite easy to find genetic risk genes for human diseases. So, I would see a lot of the big pharma companies, genomics companies, etc, coming into the Irish space and starting to hunt for a gene that could be causing human diseases, with the idea that if they could find it in Ireland, then there are 40 million Americans that this information could be applied to and it could be a very interesting market for them.”
A “good sampling” of the country would be required. “We want to sample enough people and as diversely as possible. The number we are talking about is of the order of 10,000 individuals… In the short term, you don’t need to find people with genetic diseases, you don’t need to find every diabetic in the country; you just want to have 10,000 people who represent the population.”
A number of potential sources will be explored in terms of the sampling exercise, including Dr Cavalleri’s Irish DNA atlas study and The Irish Longitudinal Study on Ageing (TILDA) led by Prof Rose Anne Kenny at Trinity College Dublin.
There would not be return results about individual risk in the first-phase, national, public genome project, says Prof Greally, and this would be made clear in the consent obtained. “The purpose of sequencing 10,000 people is to collect information about the group, providing the foundation for testing and counselling of individuals in a follow-up phase,” he explains.
There have been informal discussions with the Department of Health and the Department of Foreign Affairs and Trade about the proposal, with the latter interested in aspects that could tap into the diaspora.
It is likely that multiple sources of funding would be utilised to establish the project, including US philanthropy, according to Prof Greally.
“A phase 1 project where we generate a useful resource that would allow us to develop some good first-phase insights would [cost] €3-to-5 million… After that, it depends on the scope of what we think we want to do.”
A national biobank, for example, could be established to facilitate future large-scale studies. “But it depends on whether you want to have a biobank for 100,000 samples or one million samples; there are some scale issues there.”
Another good investment would be training PhD scientists in genomic medicine, says Prof Greally.
The genome project would help build key information on the overall burden of disease in the population, including adult-onset conditions, he emphasises.
For example, while it is known that haemochromatosis is common in Ireland, its exact prevalence is not well understood. “If we knew in advance that somebody had defective copies of the haemochromatosis gene, and we were able to say to them ‘you can’t drink that much’, people are going to live more healthily and longer and there will be reduction in burden on healthcare services, because of the fact you don’t have to do a liver transplant on this individual… ”
A recent letter to The Irish Times, co-signed by Prof Greally, also underlined that a genome project would assist governments to “predict with more accuracy how much money they would have to spend on valuable but costly treatments, like Orkambi [lumacaftor/ivacaftor] for cystic fibrosis.
“And that is only the tip of the iceberg,” Prof Greally tells MI. “There are drugs being developed every week, it seems… [for] cancers in particular. And they are related to whether somebody has a genetic mutation that will make them respond to that drug. We have to have the capability of knowing whether the Irish population is a population in which a certain drug is going to be more or less effective — again, that is one of the economic opportunities because then the drug-makers come into the country and want to study the population and identify the new mutations and it becomes job-creating… while improving the population’s heath.”
However, perhaps more than ever before, there is global concern over how people’s data is used by third parties.
“What we like as the model for how we’d do an Irish genome project is, the data are not owned by a university, healthcare system or the Government… the data are actually owned by the person who got sequenced.” In this model, the project would seek permission to be the first entity to analyse the data and consent would be required in respect of any party seeking to examine the information.
Prof Greally says the model used in the past involved data sitting on a server at university, health system or government level, “and you don’t feel as confident that you know what is happening with the data — and I think that is a legitimate concern.”
The letter to The Irish Times has begun to spark debate on the potential of an Irish genome project, says Prof Greally, and there will be continued engagement with medical colleagues and policy-makers in Ireland.
Averaging over 1,800 deaths annually, lung cancer is the leading cause of cancer deaths in both men and women. As part of the battle to fight the disease, at the end of last year, the Minister for Health Simon Harris launched a new National Clinical Effectiveness Guideline to help healthcare professionals with the identification, staging and treatment of patients with lung cancer. This new guideline was developed by a group led by the HSE’s National Cancer Control Programme (NCCP) and was quality assured by the Department’s National Clinical Effectiveness Committee (NCEC).
Purpose of the guideline
Speaking to the Medical Independent (MI), the Chair of the Guideline Development Group Dr Marcus Kennedy said the guideline is an attempt to reduce variation in practice regarding lung cancer treatment across the acute sector.
“We didn’t have any national guidelines for lung cancer, or the other cancers until the NCCP was established,” according to Dr Kennedy.
“The guidelines were really about setting out a framework of how patients with lung cancer should be looked at in the public system in Ireland to essentially improve care for patients as regards their pathway through the system and standardise care through all the centres. In a large public hospital variation in practice occurs. Obviously practice is varying because of improvements in what we do. I suppose we were trying to standardise the practice and have a framework that people could look at. You are dealing with an area where there have been new technologies, so we’re trying to bring in those new technologies as well and look at how we should be using those.”
Dr Kennedy, who is Consultant in Respiratory Medicine in Cork University Hospital, said the group that developed the guideline paid close attention to new and emerging evidence in the field of lung cancer.
“We have gone from a situation where you would have had one standard chemotherapy for the majority of patients with lung cancer,” according to Dr Kennedy.
“Now you are into a scenario where there are multiple different treatments depending on the type of lung cancer. In 10 years’ time there would probably be another multitude, so you do need to review again and look at new emerging evidence and see where it fits in the Irish pathway.”
Dr Marcus Kennedy
He added that there was a need to integrate clinical research evidence with clinical expertise. Another key consideration was reducing waste, especially within the context of tight hospital budgets.
“We wanted to put that down and reduce radiological investigations in patients where they are not necessary. And have them done in patients where they are necessary,” according to Dr Kennedy.
In terms of implementation, Dr Kennedy believes that the eight cancer centres have enough resources to adhere to the recommendations. At the upcoming meeting of the NCCP Annual Lung Cancer Forum in Farmleigh House, Dublin, in May, he said the various centres will review their data to see where there are areas for improvement.
In 2017 the NCCP completed an evaluation of the rapid access clinics for the prostate, breast and lung services resulting in the publication of a consolidated report and the collation of individual action plans for each service. In their correspondence, the NCCP outlined the plan for the next steps for the implementation of the recommendations, which were reviewed by CEOs and Group Clinical Directors at Hospital Group level, with support from the NCCP and relevant HSE divisions.
Dr Kennedy said it is important to consider how lung cancer cases present in hospitals. A report was recently compiled by the Irish Cancer Society and National Cancer Registry showing the number of cancer cases that present in emergency departments.
“There are about 1,800 new lung cancer cases a year in Ireland,” he said. “About 300 of them come through Cork University Hospital for instance. So we would be one of the larger hospitals to bring cancer patients through. A third of those come through the emergency department for us. So we have one-to-two patients coming in with symptoms per week. About a third come through our rapid access lung cancer clinic. And about a third of our patients come through our other hospitals [Mercy University Hospital, University Hospital Kerry etc].”
Also, Dr Kennedy said that many patients who present do not have lung cancer. Figures show that only one-third of patients who present in rapid access clinics have lung cancer, two-thirds don’t. In addition to his role with the guideline group Dr Kennedy is also current national HSE-NCCP Lung Tumour group chairperson. Speaking in this capacity, Dr Kennedy said that the Irish lung cancer pathway will potentially be revised in a similar manner what is being proposed in the UK. A National Optimal Clinical Pathway for suspected and confirmed lung cancer has been designed in the UK to meet targets as set out in the UK’s Independent Cancer Taskforce report.
“They made a number of significant changes there, which we have been looking at,” according to Dr Kennedy.
“For instance, if someone has symptoms, and you do a CT scan, and the CT scan doesn’t show lung cancer, maybe that patient doesn’t need to be seen at all. That is a controversial area. And old practice would suggest that you still need to do a bronchoscopy to rule out lung cancer, but actually the current thought and hard data from Cork that we are publishing would suggest bronchoscopy may not be required. Maybe we could not bring that patient to clinic at all, so we can leave more slots for those patients who really need to come through. Another population that the UK document was looking at was patients with advanced disease with poor performance status. For lung cancer, if your performance status is ECOG 3 or 4, that really is a patient who really is not able to mobilise at all. The proposal in the UK pathway is that this patient does not need to be seen in a rapid access lung cancer clinic. The current practice is we would see all patients, but maybe those patients could somehow be sorted out in their local centre through their GP to allow more slots for those patients who need surgery in a timely fashion.”
Dr Kennedy said it is vital that people with lung cancer are seen and treated as quickly as possible.
“It has been shown that delays in their care are significant. For instance, in surgical patients and patients who we would treat with chemotherapy and radiation with intent to cure, any delay in getting those patients through is significant… We do need to revise the pathways and really it is all about shortening times for the patients we are going to treat with curative intent. So we are going to review our pathways at the moment with the aim of shortening the time between the presentation and a curative therapy. We have our data and we will look at our guidelines that we send out to our GPs and other healthcare professionals and we probably will revise those with that intent. And the UK has done some work on this, so this is clearly not about reinventing the wheel and we have more data here to look at to try and improve those pathways.”
Lung cancer screening is another issue that would help identify the disease at an earlier stage. A European position statement in The Lancet towards the end of last year called for all EU countries to consider lung cancer screening and start thinking about how such a programme would operate.
Dr Kennedy said work has begun on examining the evidence. It is planned for a recommendation on lung cancer screening, whether positive or negative, to be made to the Department of Health and potentially for a Health Technology Assessment or pilot study to be conducted at a later date.
“The ballpark is changing here,” according to Dr Kennedy.
“What screening hopefully, ultimately, will do is change the stage at which patients come in. But similar to BreastCheck, it is going to take significant resources, staff, CT scanners; it is going to be based around CT scanners. So I think we need to be thinking about not only getting the symptomatic patients through, which is what we are doing now, but I think we need to start thinking about screening as well.”
In terms of current treatment, Dr Kennedy said that the centralisation of cancer services and the development of rapid access clinics have improved outcomes for patients.
“Things just work smoother if you have a concentration of the multi-disciplinary team [MDT] in one centre,” according to Dr Kennedy.
“The MDTs are well run and they really improve the flow of the patient through the system. I think the patient experience is better. We do see patients in a timely fashion. The aim is to see patients at our rapid access clinics within 10 working days. You have a concentration of expertise in the centres, you also have the opportunities for research in parallel to the universities.
“We have had more surgeons employed and more radiation oncologists employed, and cures for these patients, and patients going through the curative route are getting through the pathway quicker. In my opinion, there is no doubt that centralising the cancer services into the specialist centres is the way to go.”
Dr Kennedy said that while it will take time for the improvements to be reflected in the mortality data published by the National Cancer Registry, it has already become evident that the incidence of lung cancer is starting to decrease.
“That is also related to the push for smoking cessation, which is a huge component of lung cancer,” Dr Kennedy said.
“So in general it has been a very positive step.”
This month, GP Dr Patrick Kelly will return to the Golan Heights as part of the United Nations Disengagement Observer Force Mission.
The Waterford native will be stationed there for six months. He has been working with the Defence Forces since September 2014, after completing GP training.
While many young GPs choose to emigrate to practice medicine on completion of specialty training, Dr Kelly decided on a different path, having always been interested in the Defence Forces and the vital work it does in international peacekeeping and many other activities.
This has taken him to Syria, a country ravaged by war for several years. But despite the immense devastation wrought by the conflict, Dr Kelly has also witnessed a “beautiful country” with friendly people.
“In winter the mountains are covered in glistening snow, in spring the fields are lush and green, the wadis (valleys) are teeming with animal life. In summer, it’s slightly more barren and hot, only the most robust vegetation survives. The few Syrian people whom I’ve met in order to provide medical care are extremely welcoming, hospitable, gracious and friendly. They have endured so much for over five years but like many people are very resilient.”
Dr Kelly on a night patrol with the Quick Reaction Force
Although Dr Kelly confesses that it has always been considered a rite of passage that Irish doctors would work abroad for a short period of time, the large cut to new-entry consultant pay and FEMPI cuts to GPs have meant that young Irish doctors have decided to take up permanent residency in countries like Canada, New Zealand and Australia.
“I get to work abroad with the Defence Forces on a consistent basis so it satisfies that ‘grá’, for want of a better term. April will be my fourth consecutive six-month deployment since I joined,” Dr Kelly revealed in an interview with the Medical Independent (MI).
Dr Kelly is a specialist in general practice and is on the specialist division of the Register. He underwent training in the South East Training Scheme based out of University Hospital Waterford (UHW).
“Primarily my hospital training was at UHW and my GP placements were in Co Waterford in the towns of Ardmore and Tramore. My time out in rural areas served me well for my present work in remote locations worldwide,” Dr Kelly said.
“My role as a senior medical officer is to ensure the health of troops deployed overseas. The majority of my work is preventative and occupational medicine – identifying issues before they become a problem. Some things can seem mundane like having mosquito nets for troops when they are outside, but if a soldier is bitten by a mosquito or sandfly, they may not contract malaria or leishmaniasis, but could develop cellulites, which could end up in their repatriation home or not being able to fulfil a key role or duty, which could influence mission success.
“I provide an administrative and human resource role managing medical staff as well as treating patients on ‘sick parade’. Sick parade is akin to a GP morning or evening surgery. I must also be prepared to treat and respond to medical emergencies in the mission area.”
Dr Kelly is happy in his current role, but he admits that six-month stints abroad can be difficult when away from family and friends. Being deployed means that one misses out on family occasions like weddings, baptisms and birthday parties.
“You also miss the simple things that everyone takes for granted; going shopping, cooking your own dinner or even driving a car. I’m sure loads of people reading this will be like ‘sign me up quickly’, but I do miss these things,” Dr Kelly revealed.
“I especially miss fresh pasteurised milk that will actually expire, not like the UHT stuff, which will keep even if you leave it outside in 30 degree heat for a few years! By the way, the National Dairy Council didn’t pay me to say that. You also miss the home comforts like ‘proper tea’. I won’t mention any particular brands, but there are two main ones depending what part of Ireland you’re from – when I’m overseas I’ll happily accept either!”
Many developments have taken place within the Defence Forces in recent years in terms of information technology (IT). Dr Kelly, who has a keen interest in IT, is involved in IT healthcare projects, such as electronic healthcare records (EHRs) and telemedicine.
In 2015 the Defence Forces transferred from paper-based medical notes, which were stored at soldiers/officers’ home station, to an EHR.
The advantage of the EHR is that no matter where the soldier presents for medical care in the Defence Forces in Ireland, at sea or in one of the larger overseas missions in the Middle East, the medic or doctor has access to the most up-to-date medical information for that individual, Dr Kelly advised.
The EHR has decision support software, which alerts the doctor to drug allergies should they prescribe a medication that the patient previously reacted poorly to.
The system is compatible with Healthlink, thus ensuring that Defence Forces’ doctors can receive reports from civilian hospitals, laboratories or radiological imaging in a secure manner. The system tracks patient presentations and ‘hot spots’ of activity across the country. It allows management to better resource military treatment facilities at times of increased demand.
In another development, colleagues in the Defence Forces physiotherapy service are presently recording patient videos for prehabilitation and rehabilitation, which they intend to make available to soldiers, Dr Kelly noted.
“You can imagine that the work some soldiers do can be extremely physically challenging and injury can result. ‘Prehab’ is providing exercise in order to prevent injury, while rehabilitation is attempting to return a person to their baseline status prior to the injury. We are constantly striving to keep up with new developments in IT,” Dr Kelly outlined.
“Telemedicine allows members of the Defence Forces in remote locations to access consultations with doctors or physiotherapists over Skype for Business. It was first piloted in 2016 actually from the Golan Heights when I needed a physiotherapy opinion remotely as my own physiotherapist was not available.”
Irish general practice
Dr Kelly is acutely aware of the significant challenges facing GPs in Ireland. He believes that GPs are extremely committed healthcare professionals who are working in a challenging system that is under-resourced.
“Not only is the population increasing and ageing, but this is associated with an increase in chronic illness and exacerbated by a generation of GPs soon to retire. It’s well known that FEMPI cuts have reduced the ability of the primary care system to respond to the increased healthcare demands of Irish society,” he said.
But there is some cause for hope, with indications of plans to reverse FEMPI, while two GP training places are being provided through the Military Medicine Scheme, Dr Kelly noted.
“We are not training enough GPs to meet population demands. On a more positive note, the Government has announced removing FEMPI cuts from general practice, which is long overdue. The Defence Forces is responding in a very small way by now providing GP training places each year through the Military Medicine Scheme in conjunction with the ICGP and Faculty of Military Medicine.”
But despite the crisis in general practice in Ireland, Dr Kelly is keeping his options open regarding future career opportunities and may one day return to general practice in Ireland.
“As for long-term career goals, whether I’m in a sweltering hot Ebola treatment centre in Sierra Leone or sitting in the mist and rain of the Glen of Imaal on an artillery shoot, I’m certainly happy where I am at the moment. But sure, I’m always looking for a new adventure or challenge, so who knows. I may even go back to the real frontline of medicine and take up a GP assistant post in Waterford some day – I can’t say I haven’t been offered one or two in the recent past. It’s good to have options.”
“I was always a bit of a maverick and an outsider,” Minister of State with special responsibility for Disabilities Finian McGrath tells this newspaper.
“Now I have found myself in a very unusual position, because as an Independent, I just never thought I would be a Minister.”
Minister McGrath was speaking to the Medical Independent (MI) in his office at Leinster House at a pivotal time for Government policy affecting the lives of people with disabilities and their carers. Last year saw the publication of the National Disability Inclusion Strategy 2017-2021 and there are further developments imminent, with the ratification of the United Nations (UN) Convention on the Rights of Persons with Disabilities and the creation of personalised budgets for people with disabilities.
In May 2016, Minister McGrath entered into the current ‘partnership Government’ with an agreed programme as part of an Independent Alliance, and although he is a Minister of State, he sits at the Cabinet table.
At our interview late last month, Minister McGrath said the ratification of the UN Convention on the Rights of Persons with Disabilities was upcoming. It was subsequently ratified by the Dáil on 7 March and this paves the way for formal ratification by Ireland at the UN.
“I am the person who put it in the Programme for Government; all the political parties were talking about it for 10 years and they did nothing about it,” Minister McGrath told MI.
“People are giving out to me about the delays, but I want to bring all the groups with me and I want to consult them.”
Ireland will be the last of the European Union’s 28 Member States to ratify the Convention, a situation that has seen successive Irish governments receive criticism from the disability rights movement.
But Minister McGrath believes that ratification represents a significant moment.
“The most important thing for me as Minister of State, and as a parent of a daughter who has an intellectual disability, is that it says that Ireland is changing direction,” said the Minister.
“It sends out a strong message to every person with a disability and their families in this country that ‘we respect your rights as a citizen in your State’; it’s based on equality, it’s based on citizen rights, and it’s based on the issue of inclusiveness. It means that we are no longer doing the charity model, no longer doing the medical model; we are doing the social care model, which is mixed in with equality and rights, and I think that is an important statement.”
Minister of State with special responsibility for Disabilities Finian McGrath
But some within the disability rights sector have raised concerns that the ratification will mean little without funding.
“Of course, you are right to ask the question. Having the rights and ratifying the UN Convention without investing in the services, and without developing the services — and without putting the person with the disability at the centre of the services — would not be good enough for me,” he said.
“My job is to ratify the UN Convention, but as I’m doing it, I want to reform, invest and change the whole direction of the services. They should not be designed for the HSE, or the Department of Health — they should be designed for the person with the disability.”
According to the Minister, delays in the ratification in the last year have, in part, been due to legal difficulties around ‘deprivation of liberty’ — for example, where a family has placed a family member in residential care and the person may not want to be there.
Minister McGrath has been involved in a consultation process with disability groups and families to seek some legislative solution to this issue. The Department of Health prepared a draft Heads of Bill on deprivation of liberty safeguards, which will form a new part of the Assisted Decision-Making (Capacity) Act 2015 (it also issued a consultation paper, with the closing date for submissions having passed on 9 March last).
The Department says legislative clarity on the issue of deprivation of liberty in residential facilities for older people, those with a disability or mental health issues is required in order to meet obligations under the UN Convention on the Rights of Persons with Disabilities.
“It is a significant issue,” said Minister McGrath.
“The ‘hurlers on the ditch’ were saying ‘ratify the UN Convention’, but you have to look at the deprivation of liberty. You are talking about people with Alzheimer’s, people with dementia, in nursing homes, people with disabilities in residential care situations; we are talking about people with mental illness who might not have the capacity to make decisions.
“Of course we want to protect their rights, but we want to ensure that we get the balance right in relation to that, and that is a complex issue. There are thousands of people up and down this country [who could be impacted by this].
“I want to make sure that the families and advocates are on board. There is a huge debate going on. It impacts thousands — I want to get that right. Hence my so-called ‘cautious pace’.”
The Minister also told this newspaper he would shortly be receiving the report from the taskforce on personalised budgets for people with disabilities.
A personalised budget is a sum of money which would be funded from the HSE’s budget for disability services and provided to an eligible person with a disability to meet their needs for personal social services and supports. The Department of Health held a consultation last October to assist the taskforce to develop plans for the introduction of a system of personalised budgets in Ireland.
Minister McGrath said that, in the disability community, there were some parents and adults with disabilities communicating to him that they were unhappy with the manner in which funding for personal social services and supports were being deployed.
“From my own research and listening to the National Disability Authority, there is about 14 per cent of the disability community in Ireland who are interested in personalised budgets. So basically, this is to give people some control and give them a choice.
“Eighty-six per cent of people with disabilities and their families will be happy with their services. I have a daughter with an intellectual disability. I am very happy with her service. But I have friends of mine who are not happy with their service. They are looking at the idea of using the money and spending the money under their control.”
Since 2016, the Minister has made headlines on a number of occasions for controversial comments on public health issues — such as when he said he would like to see more smoking facilities in bars and restaurants, and when he questioned the HPV vaccine. These comments were severely criticised by many doctors and others working in healthcare. Minister McGrath has since rowed-back on these remarks.
“Of course I did cock-up in relation to HPV; I cocked-up on the smoking issue,” the Minister admitted.
“But again, when you are in opposition, you are more of a free spirit and you can say what you want and think what you want. But I do think some over-reacted to some of my little flaws of my personality.
“Because at the end of the day, everyone is human; everyone makes mistakes. But the thing about me is, if I make a mistake, I put my hands up immediately. I don’t try and bury it or I don’t cover up, or not answer the question. I know I made mistakes and that’s life.
“If I have a few frailties, I like to have a smoke, a pint with my friends — that’s me. And I don’t like preachy people, by the way,” he said, smiling, “and we have a lot of preachy people in health.”
Regarding broader health matters, Minister McGrath said he “fully supports” the Sláintecare Report and believes it is “excellent”.
Asked whether he thinks the Government and Taoiseach have shown enough leadership on the cross-party report, he insisted there is “political commitment from the Taoiseach, the Minister for Health and all the ministers. We are big supporters of Sláintecare and we want to implement it, and of course it’s going to take time to implement it.”
Minister McGrath said that investment announced in the National Development Plan 2018-2027 and other recent health spending is all part of laying the foundations of Sláintecare.
“It is all part of the building blocks for Sláintecare, to build-up our services and improve our services. But I accept the point [from some in opposition that] we need to ‘up our game’. We need to be strong. I am fighting fires in disability every day and sometimes you do take your eye off the ball as regards the broader picture.”
‘Red line issue’
Following the publication of Budget 2018 last year, there were some media reports that Minister McGrath had threatened resignation over concerns about proposed funding for disability services.
“To me it shows you have to fight. I don’t like fighting or getting into rows with ministers. But when it came to the €3 million in funding for the Decision Support Service, I had to fight like hell for that.
“Because if I didn’t get that €3 million in the Budget that would mean the service couldn’t start and be set up. That service is the anchor to ratifying the UN Convention on the Rights of Persons with Disabilities. Yes that was a red line issue for me, no doubt about it.”
Minister McGrath said there was a further “crisis” after Christmas “in respite care services and I had to say to the Government ‘listen I need at least €10 million here to deal with the emergency respite crisis’.
“I had to bang the table and fight like hell. But that’s my job. There are other ministers in education, social protection, etc, across the table fighting for their thing. But my job is to bang the table to fight for people with disabilities. So far we have done okay.”
Minister McGrath believes the public need to become more engaged in health policy and health issues in general.
“I feel that broader society doesn’t take healthcare seriously enough,” he said.
“They kind of leave it to the politicians. They leave it to the HSE, leave it to the doctors and nurses. I would like to see more public engagement with it.
“But I just feel health has to be the number one issue in this State. Of course you have to have a strong economy, etc, but health has to be the number one issue. We need the public to be involved in the Sláintecare Report to help us drive it.”
Minister McGrath on…
The future of the Independent Alliance
“I do think there is a future for the Independent Alliance. I think in fairness, some of my other independent colleagues that ‘sat on the pot’ during the talks for the Government; I think they regret it now privately. I get this feeling, they are changing. Even some of the opposition parties. Look at the mood change going on in Sinn Féin. What’s wrong with people from different political backgrounds working together?… I actually think this is part of new politics — that people from diverse backgrounds can come together and work together in the interest of the country; a lot of the other politicians ran for cover, ran to the hills and refused to form a government. The Independence Alliance — I think we are not getting gold medals for going into Government, I accept that and the opinion polls put us on around 4 per cent. But I do think there is a future for this kind of Government.”
Being a Minister rather than in opposition
“Completely different compared to when I was in opposition. I am an outsider who is walking around on the inside. It is very slow; it can be frustrating. But then when you get things done, I always say to myself, ‘if I can get 10 or 12 things done as Minister, I will be delighted’. I already have seven or eight done, so I’m thrilled. But I need to get a few more done before this Government runs out.”
The ‘disability community’
“You see, this is part of the prejudice that is against people — we have to change this mindset. People talk about the ‘disabled community’ but this community is a very diverse group. They have lots of different ideas, which I think is brilliant. But the bottom line is, there are hundreds of people with disabilities and their families, and they all have different views and solutions. That is why I am saying the three key things for my ministry is invest, reform and put the person with the disability at the centre of the service.”
Future funding of the sector
“We have a hell of a long way to go. We forget that the disability services were starved for 10 years during austerity. I’m trying to catch up here.”
Talks over the formation of Government
“When we walked into the talks with the Government, we walked in with five independent TDs and we walked out with four ministers. The other issue is, we got this one for disabilities because we wanted it, crucially, at the Cabinet table. Not just to be a minister, but to be at the Cabinet table.”
“How the hell can we lecture Sinn Féin and the DUP to get into government [together] in the North when we don’t have diverse governments down here in the South as well?”
“I am very excited; every day, I love coming in here. I love my day job. I love meeting people with disabilities, I love working with them and working on broader issues.”
Pictured with Minister of State Finian McGrath at the official launch of Prosper Meath on 23 February are service-users and piano players Ms Andrea Buckley and Mr Michael Jordan
Photo: courtesy of the Prosper Group