You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our site.

Issues in Neonatal Pain

5 Oct, 15 | by josmith

It is a great pleasure to introduce this week’s guess bloggers: Dr. Marsha Campbell-Yeo (@drmcampbellyeo) and Dr Denise Harrison (@dharrisonCHEO), will also be co-leading this week’s ENB twitter chat on Wednesday the 7th of October between 8-9pm UK time focusing on ‘Issue in Neonatal pain’. Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc or @EBNursingBMJ, or better still, create and send us a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ. Add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets.

Be Sweet to Babies – Reduce pain during needles

Today’s guest blog is from Dr Denise Harrison (@dharrisonCHEO). Who is an associate professor and Chair in Nursing Care of Children, Youth and Families at the Children’s Hospital of Eastern Ontario (CHEO), CHEO Research Institute & University of Ottawa. She leads the Be Sweet to Babies team, which focusses on pain treatment in sick and healthy newborn infants and young children. The Be Sweet to Babies team conducts research to find effective pain treatments and methods to assess pain, and to explore best ways to translate knowledge into practice.

High quality evidence shows that three are simple, effective and cost effective ways to reduce babies’ pain during their newborn screening blood tests, other blood tests and injections.

  1. Mothers can breastfeed before and during the procedures;
  2. Mothers, fathers or other family members or friends can hold the baby skin-to-skin;
  3. Or, if these strategies are not able to be used, the babies can be given very small amounts of sugar water – just a few drops before and during blood tests or needles.

The evidence supporting these three strategies has been around for many years, and guidelines produced by national and international organizations recommend using these treatments ( For example, groups such as Ottawa Public Health and CHEO, in partnership with parents of young children, have co-produced educational brochures targeted at parents of babies and children about ways to reduce pain during early childhood vaccination ( Yet, too many babies still have blood tests, vaccinations and other painful procedures with no pain treatment. This is shown over and over again by published studies of practices in neonatal units (, pediatric hospitals,1 and in community settings where vaccinations take place.2 In addition, YouTube is full of videos showing crying babies having blood tests and injections with no pain treatment ( and most news reports about the importance of early childhood vaccinations show crying babies and screaming toddlers being held down during their vaccinations (

Education about how to effectively reduce pain in babies, in the form of guidelines and publications, including systematic reviews is available for health care providers in the various settings where babies have painful needles. However, as the uptake of evidence is low, our Be Sweet to Babies team, in partnership with parents of babies and young children, felt we needed to include parents of babies in our educational plans. Studies tell us that parents want to know more about how to help comfort their babies during painful procedures,3 so we wanted to help parents know about the pain reducing effects of breastfeeding, skin-to-skin care and sugar water (sucrose or glucose) and how to use these treatments. We therefore produced a brief YouTube video which shows newborn babies having their blood tests while these three strategies are being used ( The video clearly shows the profound calming and pain reducing effects of breastfeeding or holding their baby skin-to-skin during the blood test, as well as the effectiveness of sugar water, for when parents cannot be present. Voice-over clearly explains in user-friendly language how parents can help their babies by working with nurses and doctors to use these strategies. The video has also been posted onto YouTube in French (, Spanish (, Portuguese (, Arabic (, Mandarin (, German ( and Inuktitut (unlisted link: Our goal is that the BSweet2Babies video, in all the languages will help empower parents of healthy and sick and premature babies to advocate for their babies, and to partner with the health care team members to support their babies during painful blood tests and other procedures, such as vaccinations.

Breastfeeding and sugar water also reduce pain in older babies, up to about one year of age. Our Be Sweet to Babies team therefore produced another video; “Secret to a calm and peaceful immunization” which clearly shows the calming effects of a mother breastfeeding her 2-month old baby boy Lucas, and sucrose, when given to Sam, aged 6 months (

Effectively treating pain during painful procedures is important to all, and especially important to babies and their parents. Breastfeeding or skin-to-skin by the mother or father, or small amounts of sugar water are all easy to use in any settings. Health care of babies is best delivered in partnership between all health care providers and families, and reducing pain during painful procedures is a perfect example of the important role we all need to play to ensure babies get the best care possible. Treating pain right from the beginning is important, and has the potential to reduce development of needle fears and subsequent fear of medical care. So, let’s work together so that no baby suffers unnecessarily during painful procedures, put our knowledge into practice and …Be Sweet to Babies.

Dr Denise Harrison (RN, PhD), Associate Professor and Chair in Nursing Care of Children, Youth and Families, Children’s Hospital of Eastern Ontario (CHEO) Research Institute & University of Ottawa.



Twitter: @dharrisonCHEO

  1. Stevens B, Abbott L, Yamada J, et al. Epidemiology and Management of Painful Procedures in Hospitalized Children Across Canada. C Can Med Assoc J. 2011;183(7):E403-E410.
  2. Harrison D, Elia S, Royle J, Manias E. Pain management strategies used during early childhood immunisation in Victoria. J Paediatr Child Health. 2013;49 :313-318. doi:10.1111/jpc.12161.
  3. Johnston C, Barrington KJ, Taddio A, Carbajal R, Filion F. Pain in Canadian NICUs: have we improved over the past 12 years? Clin J Pain. 2011;27(3):225-232.


Issues in Neonatal Pain

4 Oct, 15 | by josmith

It is a great pleasure to introduce this week’s guess bloggers: Dr. Marsha Campbell-Yeo (@drmcampbellyeo) and Dr Denise Harrison (@dharrisonCHEO), will also be co-leading this week’s ENB twitter chat on Wednesday the 7th of October between 8-9pm UK time focusing on ‘Issue in Neonatal pain’. Participating in the twitter chat requires a Twitter account; if you do not already have one you can create an account at Once you have an account contributing is straightforward – follow the discussion by searching links to #ebnjc or @EBNursingBMJ, or better still, create and send us a tweet (tweets are text messages limited to 140 characters) to @EBNursingBMJ. Add #ebnjc (the EBN chat hash tag) at the end of your tweet, this allows everyone taking part to view your tweets. 

The Power of a Parent’s Touch on Newborn Procedural Pain

Today’s guest blog comes from Dr. Marsha Campbell-Yeo (@drmcampbellyeo), assistant professor in Nursing at Dalhousie University and a certified neonatal nurse practitioner and clinician scientist at the IWK Health Centre. She is a recognized world leader related to the impact of maternally-led interventions on the immediate health outcomes of at-risk newborns. Her work examines maternal driven interventions to improve outcomes of medically at risk newborns specifically related to pain, stress and neurodevelopment.

No parent wants to see his or her child experience pain. Sadly, for parents of sick or preterm babies requiring hospital care, it’s a common event. Did you know that preterm and sick babies often undergo on average 10 painful procedures every day with the majority receiving little or no pain relief? Only as recently as the late 1980’s, it was thought that newborns couldn’t feel pain at all and even surgery was done without anesthetic! We now know that untreated pain during early life has both immediate and long-term harmful outcomes. For example, in addition to the immediate pain and stress they experience, these babies may develop learning and motor delays, behavior problems, and lower academic achievement later in life. There is also emerging evidence that these poor outcomes may be made worse and also impact the relationship mothers have with their children due to the prolonged mother and baby separation often experienced during prolonged hospital stays in a Neonatal Intensive Care Unit (NICU).

Despite these negative outcomes, pain associated with regular procedures continues to be undermanaged for these infants during their hospital stay. As a neonatal nurse practitioner and a researcher who has cared for mothers and babies for over 25 years, I decided to explore ways to minimize these negative outcomes. Historically, mothers have always been crucial to infant survival and well being but I noticed that they were not always involved in critical care settings. I decided to research this more to explore how to involve mothers and families in the care of newborns to minimize pain and improve long term outcomes for preterm and sick newborns and their families. Skin-to-Skin Contact (SSC), commonly referred to as Kangaroo Care (KC), is the upright holding of a diaper clad infant on his or her mothers’ chest and has been associated with numerous immediate benefits in a non-pain context in both developed and developing countries..

As a clinician, I had seen firsthand the impact that human touch such as breastfeeding, facilitated tucking, massage and most notably SSC can have on infants and mothers. So I decided to see what research had already been done on the impact that mothers have in minimizing newborn pain through SSC. I co-led a review on “Skin-to-skin care for procedural pain in infants”. This Cochrane review found that SSC between moms and infants significantly decreased pain in preterm and full term infants for a single painful procedure. From this finding, I decided to expand and explore whether SSC could play a role in minimizing pain when used during all painful procedures of an infant’s stay in the neonatal intensive care unit (NICU).

Currently, I am running a clinical trial called Trial of Repeated Analgesia in Kangaroo Care (TRAKC) which involves looking at how preterm babies who receive repeated kangaroo care differ developmentally at discharge from the hospital compared to babies who only get sweet taste, or sucrose, during all painful procedures. We will also be following up these babies to 18 months (TRAKC 18) to see if SSC provided during painful events in early life will influence if the children differ in their response to pain, the relationship they have with their mothers, and their behavioral development at 18 months of age.

Knowing the positive impact that mothers and dads too can have on minimizing pain during painful procedures that newborns experience is something that I felt I had to get into the hands of parents. Following my colleague Dr. Chambers in her “It Doesn’t Have To Hurt” video on managing needle pain in children, I decided to create the second parent friendly video titled “Power of a Parent’s Touch”. This video is meant to empower parents to help minimize neonatal pain in the NICU. Launched on December 2, 2014, it has received over 83,000 views.

It’s not just the one in ten babies that are born preterm worldwide that are adversely affected by untreated pain. Untreated pain is an issue for every baby, even those that are born healthy. Every baby in the world undergoes painful procedures in the first few hours and days after birth and many can receive up to 20 injections in their first years. Parents are one of our most underutilized resources to help relive this pain. We need to change that. Parents can make a different.

Impact of Cancer in Children & Young People

24 Sep, 15 | by Gary Mitchell, Associate Editor

This September is childhood cancer awareness month and today’s blog focuses on the subject of parental grief.

Today’s guest blog comes from Sarah LeaSarah Lea is a staff nurse in the Teenage and Young Adult Cancer Service at University College London Hospitals and a doctoral research student from the School of Health and Social Care at London South Bank University. Sarah’s PhD title is: The culture of teenage and young adult cancer care across four Principal Treatment Centres and their networks: BRIGHTLIGHT case study.


Getting back to ‘normal’: the long-term psychosocial impact of cancer in children and young people

As a staff nurse in teenage and young adult cancer services, I see many young people who are at the beginning, right in the middle of, and coming out the other side of their cancer treatment.

The gruelling and debilitating effects of cancer treatment are clear for us to see every day as we put our young people through weeks and months of chemotherapy, surgery and radiotherapy. I think something that we (by ‘we’ I am referring not only to health care professionals but also to wider society) are not as aware of, is the long-term effects of cancer on children and young people.

Many health care professionals get fixated on treating the cancer and alleviating the symptoms that come with the harsh treatments, in order to get our young people better and back into normal life and routine. However, it is very wrong of us to think that they are going to just pick up where they left off and resume ‘normal’ life again.

The psychosocial long-term effects of cancer, particularly on the younger generations who still have their whole lives ahead of them, can be catastrophic. Losing friends and falling away from peer groups is a big issue. Due to hospitalisation, appointments, feeling unwell and feeling fatigued, a lot of young people going through treatment will miss large periods of school, stop attending sports or activity clubs and stop going out to socialise with their peers. This can cause children and young people to feel isolated and alone. Cancer survivors often feel self-conscious, depressed and have lifelong fear of the cancer returning. I am just talking about the psychosocial issues here; I simply cannot even get into the long-term physical issues associated with cancer treatments.

Providing a supportive and social atmosphere is one of the key aims on the teenage and young adult unit that I nurse on. It provides an environment which gives young people the opportunity to be together throughout their treatment, and in their years of follow-up clinics, to support each other throughout their cancer journey. This peer support does not suit every young person; however it can be invaluable for some in the long-term. Some young people make life-long friends during their cancer treatment and find solace in being with others who have gone through a similar experience to themselves.

As part of the data collection for my PhD, I have been travelling around England talking to health care professionals working with children and young people, to ask them about their experiences working in cancer services. During the interviews I have conducted for my PhD, I interviewed a health care professional who has years of experience working with children and young people with cancer. She summarised our role as health care professionals in terms of providing care for children and young people with cancer to help them in the long-term. We need to “help young people to build resilience to help them go through adolescence as normally as they can and to achieve their full potential that they always had in them as a human being.” As a staff nurse, it is lovely to hear the positive survivorship stories of young people who are finally beginning to regain a sense of ‘normality’ to their life, achieving things like exams, great jobs, university or travelling the world. I feel proud of the young cancer survivors that we have treated to achieve these things, despite some of them having to overcome the on-going psychosocial impact of their previous cancer diagnosis.

Furthermore, during my PhD interviews, I spoke to young people of many different stages of their journey. One young lady that I spoke to had received two intense chemotherapy treatment protocols and was one year into remission. She talked about how life was for her now she is into survivorship; she said “you can live as normal of a life as, what normal, little, life it is…. normal is how we live our life now, like that’s what normal is to us, so we just have a funny outlook on what normal is compared to somebody else.”

This poignant statement is a reminder that the story does not end at the end of treatment ‘all clear’ scans for young cancer survivors. For many, the story will continue for years to come, if not for the rest of their lives. For health care professionals, I feel it is important for us to take some time to consider how we can best equip our patients for their survivorship years from an earlier stage. During the intense treatment phase is when we see our patients most regularly, therefore it would be the ideal time to provide this support and advice about survivorship and provide easy access to psychosocial support services where they are required. This has been spotted as a gap in provision by service providers and more research is currently being done and schemes piloted looking at how we can best support childhood cancer survivors in the long-term.


Sarah Lea

Contact email:



Parental Grief

23 Sep, 15 | by Gary Mitchell, Associate Editor

This September is childhood cancer awareness month and today’s blog focuses on the subject of parental grief.

Today’s guest blog comes from Ciara Barr, a nurse and doctoral research student from the School of Nursing & Midwifery in Queen’s University Belfast.  Ciara’s PhD title is: Losing a Child: Multi-national case study to gain better understanding of parental need for bereavement support to inform service development.

Ciara Barr

A better understanding of parental grief

In recent years there has been an increased acknowledgement by those working with bereaved parents that traditional grief theoretical perspectives do not concisely reflect the true experiences of parental grief. Early stage theories of grief are considered to be too rigid as they focus on breaking bonds with the deceased and stress the importance of ‘moving on’ as quickly as possible. Later theories conceptualised grief as a movement through stages and tasks and even more recent theories have evolved which consider finding an enduring connection with the deceased. This has relevance to those grieving the loss of a child and research with bereaved parents will inevitably have to consider theory, as long held views about the grief experience and grief therapy have undergone transformational change.

To try and better understand grief from the perspective of a parent it is beneficial to consider doing so with a framework which provides a thorough representation of the needs and experiences of losing a child. One such framework that coherently describes a parent’s journey through the entire trajectory of their child’s palliative care experience, from diagnosis and into bereavement is that of Price et al. (2011); Piloting, Providing, Protecting and Preserving. Interestingly, this conceptual framework could be applicable for the death of an adult also.

Figure 1. Piloting, Providing, Protecting and Preserving- a framework of parent’s experiences living through the death of their child (Price et al. 2011).  Click Image to Enlarge.


Barr 1


A brief overview of each process within the framework provides a better understanding of parents actively ‘doing’, thus enabling coping. The piloting, providing, protecting and preserving processes are evident throughout the entire trajectory of the child’s illness, death and beyond and do not occur in a rigid linear fashion. Here the processes are presented from a post bereavement perspective.


This process is concerned with the manner in which parents steer their way through the bereavement trajectory. In trying to navigate their way through unchartered territory, from immediate bereavement and into the later stages many months and years later, parents can experience a multitude of unfamiliar and bewildering emotions. During the piloting process parents attempt to maintain control and create a new ‘normal’, perhaps having to make complex decisions whilst at the same time trying to maintain family functioning. Often during this process parents may have to juggle roles in attempt to manoeuvre themselves and their families, as best they can, through the difficulties they may be experiencing.


Providing is concerned with being there for other family members both physically and emotionally. Parents are a source of comfort for other family members including other children and close relatives. Providing comfort is natural for a parent but can prove difficult as they try to make sense of their new world without their child. As partners, the relationship between parents can become strained as they try to understand each other’s thoughts and feelings, be there for each other emotionally and physically, and try to provide comfort for others in the family.


A child’s death impacts on all family members and parents want to protect other children and adult family members from harm, which may be real or potential. Parents may overprotect remaining children as the uncertainty of life has been reinforced and they can become concerned about the possibility of another death. Parents recognise their role as protectors but can feel helpless when they cannot protect their own children from death. Protecting the child from being forgotten plays an important role in bereavement, and indeed for the rest of the parent’s life. Continued contact with staff that cared for the child, participation of bereavement programmes, creating memorials, keeping the child’s possessions and photographs, and setting up foundations or raising money for various causes are some of the ways that parents act to protect their child’s memory.


Preserving is primarily concerned with maintaining the family unit, which itself may be a source of healing for family members. Normal family functioning is altered after the death of a child, and as an attempt to maintain relationships within families parents may come to rely on professional or non-professional support. Similar to the process of protecting, preserving is also concerned with preservation of the child’s memory and place within the family unit. Parents show a preference for maintaining and preserving relationships with the care providers that were involved in their child’s care. Maintaining relationships such as this enables parents to actively remember their child and it is this bond that can influence where parents seek support from after the death of their child.

Each bereavement experience is unique, yet frameworks such as this help others to gain a better understanding of the needs and experiences of bereaved parents.

Ciara Barr @CiaraBarrRN



Price, P., Jordan, J., Prior, L. & Parkes, J. (2011) Living through the death of a child: A qualitative study of bereaved parents’ experiences. International Journal of Nursing Studies. 48 pp1384-1392


Infection Control in Care Homes

17 Sep, 15 | by Gary Mitchell, Associate Editor

EBN are delighted to share their latest blog on the important topic of infection control in care homes.  This blog coincides with an innovative “Infection Prevention and Control CPD Link Day” which is taking place today, Thursday 17th September 2015, for care home staff in Northern Ireland with specialist input from Rose Gallagher, RCN UK National Infection Control Advisor.  The organiser of the event, Gary Cousins, provides us with an overview in this guest blog.

Gary Cousins 2 (2)

Gary Cousins (@Cousins_Gary) is Infection Control & Clinical Development Nurse for Four Seasons Healthcare in Northern Ireland, Wales and the Isle of Man. A new position in Four Seasons and the first of its kind with the company UK wide. Gary has been developing the role, educational programmes and support systems to empower staff and facilitate greater ownership of day to day practice in relation to infection control. Gary’s link programme within Four Seasons earned recognition at the Nursing Times Awards 2014 earning the runner up spot in the IPC category.

When I started in IPC (infection prevention and control) 3 years ago there was no internal educational programme for IPC link staff. In addition there was no criteria for taking on the link role nor definition of what the role should be. In essence any staff who had been identified as IPC links were names on paper who attended an external education session every once in a while. External sessions were non-mandatory so care homes had no obligation to facilitate staff attendance.

Dawson (2003) said that, IPC link staff can play an important role in their clinical area to facilitate liaison with the infection control team and to act as a resource for colleagues.

With this in mind I thought “how can the link role be developed so that it is meaningful, how can staff be provided with education relevant to the environment they work in and can a system be created which allows staff to easily access specialist support?” Then it hit me a mandatory internal link programme. It seemed simple, if only! There were things to consider;-

  • Who would be invited to attend?
  • Can criteria for taking on the link role be established?
  • What topics are going to be covered?
  • Can all the topics be covered in one day or are multiple days required?
  • Where are the link days going to be held? Care homes under my remit are split into 9 regions based on geographical location.

And so the scoping began. I visited care homes to observe IPC related clinical practice, finding gaps in basic practices such as hand hygiene and use of PPE (personal protective equipment) amongst other things. When I reviewed the opportunities for hand hygiene or using PPE, these fell mainly to the non-nurses. Care staff were providing the majority of assistance with personal care/continence care. Domestic staff were moving from room to room looking after environmental cleanliness. This meant that these staff groups were in the best position to identify good practice, poor practice, cultural practice and potentially to influence a positive change in clinical practice. In contrast when reviewing the nurses role, they were responsible for planning care relating to residents who may have active or colonised healthcare associated infections (HAIs). To implement an appropriate and person centred plan of care the clinical knowledge of nurses is of fundamental importance.

IMG_1042 (2)

Link staff are traditionally defined as practising nurses with an expressed interest in a speciality and a formal link to specialist team members (MacArthur, 1998). However, following my visits to Care Homes I decided that the role, needed to be expanded to include senior healthcare assistants and domestic supervisors. The rationale behind this expansion was very simple; if we want/expect there to be a high standard of IPC practices within care homes then those staff who have the potential to have the greatest influence in practice must be included. The only stipulation was that senior healthcare assistants or domestic supervisors taking on the role must also have a link nurse within their care home.

Following the scoping the plan to take forward a link programme was;-

  • Every home with a nursing unit must send a nurse (but could also send a senior healthcare assistant and/or domestic supervisor).
  • As this was a pilot, we had a very loose criteria for the link role – the main point was that the person must have an interest in IPC. Lack of interest equals lack of motivation and lack of motivation equals poor utilisation of the role.
  • Based on observations in the homes and discussion with staff the topics needed to range from a definition of what the link role is, basic practices – standard precautions, environmental cleanliness, care of the person with MRSA living in a hare home, Clostridium Difficile awareness, seasonal Influenza and identification and management of gastroenteritis outbreaks.
  • With the volume on the programme the topics were split into 3 separate sessions held at appropriately identified times throughout the calendar year.
  • Each of the 9 regions received the 3 sessions so that meant delivering 27 link sessions throughout the year. No mean feat.

From the pilot programme in 2013-14 the programme was a great success, with approximately 80% of Homes represented. This coincided with a 61% reduction in outbreaks of infections such as gastroenteritis. The feedback was extremely positive so the programme was replicated for 2014-15. Again the results were positive with a link nurse, Shauna Rooney, winning the National Nursing Standard IPC Link person award in May ’15. This very much highlighted what can come from positive and effective implementation of the link role with the drastic improvement in basic and fundamental practices.

This month I have the opportunity to do something a bit different for the link staff. On the 17th September 2015 I am running an IPC CPD day for link staff. Whilst it is important to provide information for staff as the link programme has done in the past 2 years, focus on development of the role and further assessment of staff perception of the role is essential to driving improvement.

The focus of the day is effective use of the role and driving quality improvement in day to day practice. I have been lucky to have the involvement of Rose Gallagher from the Royal College of Nursing as part of the day. Rose is running a workshop called ‘build a link person’ which asks link staff to assess their capabilities and limitations in communicating with and influencing others. Other areas of the day will be ‘using clinical audits effectively- quality improvement versus quality assurance’ and ‘A Clostridium Difficile outbreak- what did we learn?’. The day can be followed on Twitter with the hashtag #FSHCNI, it promises to be a great day.

Gary Cousins, Infection Control and Clinical Development Nurse, Four Seasons Health Care

Living with Leukaemia – The Expert Patient

14 Sep, 15 | by Gary Mitchell, Associate Editor

We are delighted to share Nóirín O’Neill’s @Noirin0Neill story this week on Evidence-Based Nursing.  Nóirín will be hosting this week’s  #ebnjc twitter-chat on Wednesday 16th September (8-9pm UK time) on the Role of Expert Patients in Medicines Research and Development.  To follow the chat on Twitter please use the #ebnjc


One of the Most Fascinating Stories in the History of Medicine”

“The history of Acute Promyelocytic Leukaemia  (APL) is one of the most fascinating stories in the history of medicine.”  Dr. Francesco Lo-Coco, Professor of Haematology.

Dr. Leaft Hillestad first described APL in 1957. Dr. Hillestad identified APL as a distinctive subtype of AML and one that is aggressive and rapidly fatal if not correctly diagnosed and treated immediately. Further research was carried out by French and American scientists into the disease but it was Chinese scientists who made the revolutionary discovery that APL was responsive to ATRA, all trans-retinoic acid – a Vitamin A derivative.  APL  is a rare form of leukaemia that affects one in a million people in Europe. APL is a rapidly fatal aggressive haemorrhaging disease and early hemorrhagic death has to be avoided, ie., death within the first 30 days of diagnosis.  Click here for further medical information.

Dr. Zhen-yi Wang was studying APL at Ruijin Hospital in Shanghai, along with Dr. Zhu Chen, and he believed that cancer cells could be converted into normal cells.  Wang was inspired by  the philosophical thinking of the famous Chinese philosopher Confucius who taught that there was a greater benefit to society if criminals were rehabilitated instead of punished. The drug ATRA causes leukaemic cells to abandon their relentless growth and mature into white blood cells. ATRA makes the leukemic cells “behave”.  APL was transformed from a highly fatal disease to a highly curable disease. Zhen-yi Wang’s group introduced ATRA in treating APL in 1985, and APL patients like me have benefitted from his achievement.  Morphologically, it is identified as the M3 subtype of acute myeloid leukemia by the French-American-British classification and cytogenetically is characterised by a balanced reciprocal translocation between chromosomes 15 and 17, which results in the fusion between promyelocytic leukaemia (PML) gene and retinoic acid receptor α (RARα).

At the time I became ill, I was 30 years old and studying a Masters Degree in Aberystwyth University in Wales in IT law and e-commerce. I  previously studied law at Trinity College Dublin and qualified as a Solicitor with the Law Society of Ireland in 2001. However, nothing prepared me for the day that I was diagnosed with APL on 26th of November, 2004. I felt relatively normal up until about three days before I was diagnosed with APL. Symptoms included severe fatigue and nausea however it was the appearance of bruising on my legs, hands and chest areas, which triggered an emergency trip to the local GP.

The GP took a blood sample which was then taken by a family member directly to the laboratory at Withy Bush Hospital in Haverfordwest in Pembrokeshire, and within an hour, I was given the bad news that I had a very rare form of leukaemia called APL and the condition was life threatening. However, I was also given the good news that the disease is the most curable form of leukaemia in adults.

My platelet count was rock bottom when I was admitted to  Cardiff University Hospital  a couple of hours later. I wasn’t able to walk by the time I arrived at Cardiff University Hospital and I was getting severe cramps in my legs and thought I would die. I was pushed in a wheelchair through the corridors by the porter straight to Haematology where the team were waiting for me. It was an uphill battle to stay alive which was complicated by the fact that my veins were collapsing and peripheral venous access was proving difficult. The major risk was a cranial or pulmonary haemorrhage. We had to get my platelets to behave as quickly as possible. After two trips to theatre, an emergency central line was surgically inserted into the jugular vein in my neck.  ATRA was initiated and aggressive blood product support commenced.

I enrolled on AML Clinical Trial 15 on the day I was diagnosed. This trial was to see if longer but less intensive chemotherapy regimen worked as well as standard chemotherapy for APL and to see if adding a drug called Gemtuzumab Ozogamicin (also known as Mylotarg) improved either treatment plan.  Drugs included Daunorubicin and Cytarabine.

I spent approximately six weeks in Cardiff University Hospital and another five months in Belfast City Hospital, undergoing four aggressive intensive cycles of chemotherapy and blood product supportive treatment. Sometimes I had chemotherapy 23 out of 24 hours a day for five days in a row. Eventually, the central line in my neck was replaced in theatre with a Hickman line in Cardiff Hospital on Christmas Eve, 2004.



I had neutropenia after every cycle of chemotherapy and developed some very serious bacterial, viral and fungal infections such as RSV and the C.diff bug with fevers, chills, sweating, sores in the mouth, bleeding gums, skin ulcers and lots of  other nasty symptoms like vomiting, severe abdominal cramps, nausea and blacking out. The final cycle of chemotherapy even triggered a bad attack of trigeminal neuralgia and an outbreak of cold sores. Intravenous (IV) prophylactic, antibacterial and antifungal antibiotics were administered regularly and blood cultures became the norm. The G-CSF growth factor was given to accelerate neutrophil recovery. Dietary measures were put in place and bedside physiotherapy was given for muscle wastage in my legs. Sometimes I could not eat for weeks and survived on nutritional shakes.

I had visits from the Palliative Care Team and Wound Relief Team and even the Cardiac Team when an infection in the heart was suspected.  I was allowed home for a few days in between each cycle of chemotherapy, when the blood counts came up again.  I had to avoid exposure to crowds and people with contagious illnesses especially children with viral infections. Temperature and hygiene were strictly monitored at home with the hospital providing a haematology helpline which became a lifeline. Painful bone marrow biopsies were carried out regularly for molecular monitoring of the disease and as part of the clinical trial.  I didn’t require a bone marrow transplant and have not relapsed in the last ten years. Patients who have a relapse are usually treated with arsenic trioxide which I believe can induce a complete remission in 85% of patients.


How could my treatment have been improved? What could have been done better? I would not change anything about the treatment received or the nursing or medical  staff in any of the three hospitals who looked after me. I  received excellent professional support throughout my treatment from all of the haematology and nursing teams in both hospitals.  They were all  true professionals and it was a privilege to be under their care. When I thanked one of my Consultants Mr Jonathan Kell, Consultant Haematologist for saving my life, he said: “ Just three times”.

I have been in remission now for over ten years. I have since got married and have given  birth to a baby daughter three years ago.   My late father was a Gold Medalist pharmacist in Northern Ireland and I am now training to be an Expert Patient in the Medicines Research and Development with EUPATI @eupatients. I am also a member of the ASTERIX FP7 Patient Think Tank

Thanks to all of the following people for saving my life:  The GP in Haverfordwest (name unknown); Dr. Grubb, Consultant Haematologist and his team at Withy Bush Hospital in Haverfordwest, Wales; Dr. Jonathan Kell, Consultant Haematologist and all of his team  at University Hospital of Wales, Cardiff; Professor Mary Frances McMullen, Consultant Haematologist and all of her team at the Belfast City Hospital; Welsh Blood Service; Northern Ireland Blood Transfusion Service and all of the blood and platelet donors in Wales and Northern Ireland.


Nóirín O’Neill has spoken as an Expert Patient at many conferences to include NHS Confederation Annual Conference in Liverpool (2015);  Northern Ireland Blood Transfusion Services Gold Badge Awards Function (2015); Northern Ireland Rare Diseases Partnership Annual Conference (2015); Northern Ireland e-Health Conference (2014); Northern Ireland’s first Healthcare Social Media Conference (2014); Nóirín also attended the EFGCP annual conference in Brussels in 2015.

Nóirín O’Neill  (@Noirin0Neill) will host a Twitter Chat  on the  “Role of Expert Patients in Medicines Research and Development” on Wednesday 16th September, 2015 at 8.00 pm (CET) Use the hashtag #ebnjc


Tweetchat Questions:

  1. Have rare disease patients a role to play in the education of medical providers?
  2. What role do you think Expert Patients should have in Medicines Research and Development?
  3. What challenges do you think Expert Patients in Medicines Research and Development face?
  4. What impact do you think working with Expert Patients in Medicines Research and Development could have on your future work?

Assisted Dying – A Nurse’s Response

11 Sep, 15 | by Gary Mitchell, Associate Editor

Today, Friday 11th September, the Second Reading of the Assisted Dying Bill will take place in the House of Commons.  If eventually passed, it will allow a terminally ill adult (prognosis less than 6 months) resident in England or Wales to be supplied with a lethal prescription to be self-administered under the supervision of ‘an attending health professional’ (doctor or nurse). 

This week we have been sharing expert commentary of the topic of assisted dying in the form of a guest editorial (click here to read) from Dr Robert Twycross, a guest blog (click here to read) from  Dr Kevin Yuill and a podcast interview (click here to listen) between Dr Robert Twycross and Gary Mitchell.  Today we are sharing a nurse’s view on the topic of Assisted Dying from Jessie McGreevy

photo me (2)

The introduction of an assisted dying bill in theory sounds like a positive change in the law as it gives people choice and control over their lives which we all know is a fundamental human right, but in practice how will the change in the law impact on care?

The bill will be based on the current assisted suicide law in place in American states such as Oregon and Washington, where it is believed to be a success. The Economist reports that since 1997 only 1327 people have received life ending medications and only two thirds of people have taken the drugs. These statistics perhaps show that possessing the option of death and having a sense of control supplied by the assisted suicide bill was actually what people wanted rather than the action of ending their life. However as Prof William Toffler, a senior doctor in Oregon states; the bill has only changed the focus of care, from effective palliative care to patients fearing that they are being steered towards assisted dying. He explains that some doctors are now being referred to as the ‘Doctor of death’ because of their opinions about assisted dying. How is this a positive step for palliative care when some people already have a lack of trust in the caring profession?  From a nursing point of view I find the assisted dying bill a risky option as it will take away from palliative care and it cannot and should not replace palliative care.

“The two have conflicting interests, one seeks to improve best quality of life until death and the other to end life, due to this I fear that palliative care may become extinct.”

Health care can be cost driven at times, so introducing a potentially “cheaper option” of assisted dying may leave people being denied palliative care and being coerced into choosing death as a treatment option. Already people living with life limiting illnesses are being denied medications that could give them more time with loved ones because it is not cost effective. Take Barbara Wagner for example, a lady living in Oregon with terminal cancer who was denied life extending drugs due to cost. Instead she was offered cheaper options that included life-ending drugs. Assisted dying was not something she requested but was offered to her.  While I acknowledge that the American and UK healthcare systems have fundamental differences this is still a point worth highlighting.  The question remains – should death really be offered as a treatment for terminal illness?

Perhaps the seductive quality of the ‘assisted dying’ bill is that it provides choice and gives back control in situations where feelings of helplessness (a form of suffering) may develop. However the ‘Assisted dying’ bill requires the patient to be in the last 6 months of their life and be a fully competent adult. This automatically rules out people living with dementia, a terminal illness we know is steadily rising and currently affects 870,000 people living in the UK.  This issue is particularly pertinent to me given my role as a nurse educator in the arena of dementia and palliative care.

Regardless on whether assisted dying is right or wrong, it does seem wrong that a diagnosis of dementia automatically makes a person illegible to apply for ‘assisted dying’.  Is there an assumption that all people living with dementia are not able to make future decisions about their life, care and death?  This notion certainly contradicts the plethora of best practice literature and recommendations that serve to eradicate the stigma associated with the dementia diseases.  In addition to the dementia diseases, the bill also will not apply to people living with other neurological conditions like Multiple Sclerosis, Huntington’s Disease or Parkinson’s Disease.  It is worth noting here that I am no way supporting assisted dying for people living with incurable, life-threatening neurological conditions like those aforementioned.  I am only highlighting how some, in favour of assisted dying, may perceive the passing of the bill.

On assisted dying, a great number of healthcare professionals still do not want the law to change.  We as healthcare professionals are the ones that will be giving the tablets, and we are the ones that will be helplessly watching people die when they have more life to live. I once read a quote that said ‘life is expensive and death is cheap’ which really stuck with me; it is only my opinion, but I feel that life should be cherished for as long as possible and we need to help our patients, residents or clients see a life beyond a diagnosis and not see death as a cure for suffering.  In short we need to progress palliative care and use it as a vehicle for positive change. 

I agree with what the actor Liz Carr says; “we need an assisted living bill, not an assisted dying bill”.  See Liz’s article here.  We can’t predict the future but we can make sure the here and now is the best it can be even for those with terminal illnesses, and with good palliative care we can achieve this.

“I think I speak for many nurses when I say; we want to preserve life, protect it and help people live well”.

Jessie McGreevy @McGreevyJessie is a dementia care educator for Four Seasons Health Care @FourSeasonsHCUK.  Jessie is a 2015 ‘Rising Star’ finalist in the Nursing Times Awards, a Dementia Friendly Community Champion with the Alzheimer Society and a Master’s Student with Stirling University.

Improving Quality of Life in Care Homes

10 Sep, 15 | by Gary Mitchell, Associate Editor

Today’s guest blog comes from Sarah Penney @SarahPenney9 at Ulster University  @UlsterINHR on the day of the “Improving Quality of Life in Nursing and Residential Homes”.  To follow live updates from the event, follow #QCH on Twitter.


As a student nurse I always enjoyed my care of older people placements and always felt I would eventually end up that that area. Although when I qualified I worked in surgical care for many years and I always enjoyed project work. When living in Guernsey I managed several health & social care projects such as implementing care pathways, patient dependency framework, and the knowledge & Skills (KSF) framework implementation. When I returned to Northern Ireland I took up post as manager in a residential care home. This was a great experience as the home was owned by a non-profit organisation and the emphasis was always on the resident experience.

Early last year I obtained the post of Research Fellow in Ulster University to manage a project Improving Quality of Care in Nursing & Residential care homes in Northern Ireland. This was ideal for me, linking my love for older peoples nursing and managing a project. This post was part time so I was also able to accept the role of Dementia Lead two days a week for Belfast Central mission.

This project was a knowledge transfer initiative and was led by Dr Assumpta Ryan. It was delivered around four themes of best practice identified from research carried out in local care homes. These themes provide a focus to improve the quality of life through evidenced based practice. The themes are summarised as follows:

  1. Facilitating a positive transition for residents and relatives: Supporting residents, relatives and staff to manage the loss and upheaval associated with moving into a nursing or residential home and to view the move in a more positive light.
  2. Maintaining dignity and identity: Using person-centred care to meet the needs of residents and relatives by respecting values, beliefs, preferences, rituals and routines.
  3. Sharing decision making: Involving residents, relatives and staff as partners in decision-making on all aspects of life in the nursing or residential home and working in partnership to improve communication and clarify roles.
  4. Creating and maintaining community links: Optimising relationships between and across residents, relatives and staff and integrating the home within the local community.

These themes are entirely consistent with those identified in the ‘My Home Life’ (MHL) @MyHomeLifeUK programme in the UK. ‘My Home Life’ is an initiative aimed at giving older people in care homes more control over their lives.

The project completed over one year in 15 care homes in the western health and social care trust and care home managers had to commit to quite a demanding schedule.

There were two strands;

  1. Practice development – An important and innovative element of this project was that the managers were involved in parallel sub-groups which focused the 4 themes. Each sub-group met with the Project Manager to identify research, develop and implement a project within their care home which related to Maintaining Identity, Sharing Decision Making, Creating Community or Managing Transitions theme. This was an additional meeting as well as the ALS.
  2. The My Home Life Leadership Support programme consists of each participant attending a 4 day workshop followed by a cycle of 8 monthly action learning sessions (ALS) to support their leadership development and to subsequently take forward quality improvement in their respective care homes. The four workshop’s days introduced participant’s to various concepts, approaches and tools to aid their development exploring the meaning of Relationship-Centred Care (RCC) which ‘provides a complementary philosophy of care where all participants appreciate the importance of their relationships with each other (Beach et al. 2006), and the associated Six Senses Framework (SSF) security, significance, continuity, belonging, purpose, achievement Nolan et al. (2006) The action learning within the Leadership Support programme is ‘critical reflection’ (O’Neill and Marsick 2007) and follows closely the model as described by McGill & Brockbank (2004). In the spirit of experiential learning, action learning is a continuous process of learning through guided reflection (active listening and open questioning), action and feedback which is undertaken within a confidential, supportive and safe environment

At the moment I am also completing the final part of my MSc dissertation for which I evaluated this project, whilst the MSc is not quite complete the findings are very positive, with managers seeing a real shift in their own approach and becoming more leaders not managers. They now listen and involve their staff, resident and relatives in a more inclusive way. Within the practice development work some exemplary work was produces with new tools and resources developed. These included:

Within group 1, a new preadmission paperwork and approach to collecting this information was developed. This focused on a normal day at home collecting specific information about how the resident likes to spend their time and things that are important to them. Managers reported that staff felt they had more meaningful information about residents and were therefore better equipped to support them when they moved in. This included knowing their specific likes or dislikes and making sure preferences were communicated and demonstrates staff recognising the findings of Ryan & McKenna (2014) that it is the ‘little things that count’

In group 2, a ‘This is Me Now’ document was devised which is a narrative approach to detailing the specific things residents with limited communication and or advanced dementia needed to have in place. This included things like reassuring photos or approaches to daily tasks as well as involvement and interaction with relatives.

In group 3 a decision tree was the centre of their initiative and represented a change in approach which was introduced to promote shared decisions. The decision tree is a physical tree where over a set period of time answers to specific questions can be written on tags and hung on the tree allowing a more open response to questions.

Finally, in group 4 community links were established using an intergenerational approach with many youth groups, organisations and schools. Managers were enthusiastic about the dramatic increase in activities these links had provided for the residents.

Sarah Penney


Sarah Penney, BSc(Hons) RGN, is in her final year of her Masters degree in Dementia Studies.  She currently works as a Research Fellow at Ulster University and is a project Manager for Ulster University project – Improving Quality of Life in Nursing and Residential Homes in Northern Ireland.

Sarah has a background in surgical nursing before managing several health & Social care projects and then worked as manager in a care home for older people before moving to Ulster University to manage a project to develop practice in care homes. Specific interests are supporting staff to develop practice in dementia care and dementia design.  She sits on the Northern Ireland expert panel to assist with the development of a national learning & development framework.  She is also Dementia Lead for a Belfast Charity.


Myths, Falsehoods and the Assisted Dying Bill

7 Sep, 15 | by atwycross

Dr Kevin Yuill (@historykev) from the Faculty of Education and Society at Sunderland University reflects on the myths and falsehoods surrounding the assisted dying bill.

This Friday, Parliament will consider Labour MP Rob Marris’s Assisted Dying Bill. Supporters are confident that Parliament, this time, will pass this legislation that, they say, will alleviate suffering in those few terminally ill people that will avail themselves of this option.

Most of the British public seems to approve. But the Bill is promoted using emotive stories of families and friends deaths, leading to irrational conclusions. “When I am in that situation, I want the option of assisted dying”, say many people, having been bombarded with stories in soap operas, films, and newspaper articles.

And that is the secret of the public’s support of legalizing assisted suicide, as it really should be called. It chimes with the anxieties that many feel decades before death is at hand. But this projection creates an unreal scenario. We imagine a sad scene with a person dying in pain, surrounded by helpless relatives and medics sadly shaking their heads, knowing that they can do nothing to alleviate this pain. Or, worse, someone kept alive against their will, hooked up to beeping machines. Their dignity has gone and their wishes are ignored in this cold, inhuman environment. But if the assisted dying bill is passed, they have an option to die with dignity surrounded by loved ones.

As anyone who has debated this subject knows, the public, when they understand what is really at stake, will reject assisted dying, whether they are religious or not. These scenarios and the proposed solution – as well as many of the points made by proponents of assisted suicide – are false.

Most of those who opt for assisted suicides in Oregon – where it has been legal since 1997 (and upon which the Marris Bill is based) are self-willed, independent, and perfectly capable of taking their own lives unaided. Most, like Brittanny Maynard, the 29-year old American woman with Stage 4 brain cancer who killed herself last year, go many months before they are expected to die. Nor is it necessarily dignified as they ingest the same poisons that are deemed “cruel and unusual punishment” by those opposed to capital punishment.

Nor is pain very important in this discussion. Here is where the experience of Oregon is useful. Amidst the reasons why Oregonian opt for an assisted suicide, pain is not even in the top five. Instead, fear of loss of autonomy, of loss of enjoyment of life’s activities, and loss of dignity are the top three. Being a burden come above pain in both the Oregon and Washington (where assisted suicide was more recently legalized).

There are many other false impressions given by proponents of a change in the law. Many protest that the proper term is “assisted dying” rather than assisted suicide. The underlying disease, they say, is killing patients and these patients are not suicidal but are dying. All they want is to control the moment of their deaths.
Under the Marris Bill, people will have to self-administer a lethal dose of poison. To call that anything other than suicide is Orwellian nonsense. Let us at least be honest about what we are discussing. It is prescribed suicide.

Nor is it accurate to say that “The Bill would result not in more deaths but in less suffering” as Dignity in Dying and the Observer have. Strictly speaking, of course, it is true, if we ignore time restraints. Killing or assisting to kill someone only prematurely ends their life and, no doubt, would result in less suffering.

But it is disingenuous in relation to this debate. What the bill will do, according to Dignity in Dying’s own estimations, is to quadruple suicides amongst the terminally ill. They estimate that 300 terminally ill people take their lives each year. If we extrapolate from Oregon the number of people in Britain that would opt for assisted suicide is around 1200 people per year. The Bill will result in many more suicides unless we pretend that someone taking poison to end her life is the euphemistic “assisted dying”.

When some say that “the law is broken” it is worth remembering that there has never been less of a need for legalizing assisted suicide. Medical technology is eradicating painful deaths and though it is not perfect, most people can rest assured of a peaceful death. But, in those occasions in the last hours, days or perhaps weeks of dying when doctors do attempt to prevent suffering, there will be an entirely new set of bureaucratic forms to fill in. Some situations in life are best kept away from the glare of the law.

It is entirely understandable that those facing an imminent death will fear what the future will bring. But, as those in the hospice movement can assure them, the final period of someone’s life, while challenging, can be a rich experience once the patient adjusts to their situation. Whereas death will cure fear of the future, just as it would a headache, the fear and despair understandably felt by those with terminal illness are, unlike the underlying illness, curable.

Resolving the mythology of this debate will ensure that the Marris Bill is defeated and that we do not prescribe suicide.

Words Matter in Dementia Care

3 Sep, 15 | by Gary Mitchell, Associate Editor

EBN are excited to share Joanne Agnelli’s latest blog which focuses on the appropriate use of language in dementia care. 

Joanne @JoanneAgnelli is a dementia services quality manager from Four Seasons Health Care.  This year she has presented her work at the Alzheimer’s Disease International Conference (Perth, Australia), The Alzheimer’s Show (London, England) and is due to present at the Healthcare Interdisciplinary Research Conference (Dublin, Ireland) later this year.  Joanne’s contribution to nursing was recently recognised at Northern Ireland’s RCN ‘Nurse of the Year’ Awards where she was runner-up in the Team Leader category.


When I qualified as Registered Nurse in 1997, I had no concept of what it meant to live well with dementia or the negative connotation that language had on impacting on the stigmatisation of the disease.

In 2005, I took up the post of Home Manager of a Nursing Home which had an ‘EMI’ unit (Elderly Mentally Infirmed). The term EMI did not sit comfortably with me, however it was widely used by both NHS staff and care home staff. Other terms commonly used were ‘feeder’, ‘wanderer’, ‘aggressive’, ‘challenging’ and ‘sufferer’, to name but a few. While I am not proud to admit that I also used these terms, it is also important to note, that I had not received any formal dementia training and was therefore oblivious that the language I used every-day continued to further the stigmatisation of people with dementia.

The home embarked on a project to enhance the quality of lives of people living with dementia. Through this I had the opportunity to attend person centred care training and Dementia Care Mapping training. The training was invaluable as this challenged not just my practise but also that of the staff team. We had been exposed to the work of Tom Kitwood, Christine Bryden and Dawn Brooker and the ethos of person centred care. This included treating people living with dementia as unique individuals and moving away from a medical model of care towards a bio-psycho-social model. As a staff team the changes that we implemented were small and at the time on reflection we couldn’t understand why we hadn’t thought of these earlier, such as visible life story work, doll & animal assisted therapy, medication reviews and positive risk assessment.

There are a growing number of people living with dementia across the globe who are also active advocates for people living with dementia, Kate Swaffer, Christine Bryden, Chris Roberts and Helga Rohra to name but a few. Through their active presence both internationally and on social media this is challenging society to understand how the language that we use within the realm of dementia care can affect how the person with dementia feels about themselves.

In 2014 the DEEP (The Dementia Engagement and Empowerment Project) guidelines on language about dementia were published. These guidelines were written by 20 people living with dementia who came together for a day in Liverpool. Alzheimer’s Australia (2014) also devised Guidelines of words to avoid

The words and descriptions that were identified by this group should never be used to when describing dementia or people with dementia, they are considered as ‘curl up and die words’. These included ‘dementia sufferer’, ‘senile’, ‘burden’, ‘victim’, ‘wanderer’, aggressive’. Despite this guidance the media continues to portray a negative image of dementia which devalues the contribution to society that a person with dementia continues to make.

I recently attended the Alzheimer’s Disease International conference in Perth, Australia to present on ‘Promoting the use of person centred language in clinical practise and society’. The take home message from this conference was the inspiring voices of those people living with dementia, the simple statement….

“no longer about us, without us”

Joanne Agnelli, Dementia Services Quality Manager, Four Seasons Health Care.


Analysis and discussion of developments in Evidence-Based Nursing

Evidence-Based Nursing blog

Analysis and discussion of developments in Evidence-Based Nursing. Visit site

Creative Comms logo

Latest from EBN

Latest from EBN