Let's Talk About Palliative Care

Palliative care aims to offer comfort and support to patients and their families including caring for emotional and spiritual needs. The overall aim of All Ireland Institute of Hospice and Palliative Care (AIIHPC) is to improve end-of-life care in all of Ireland which led to the “Let’s Talk About” initiative.

Let’s Talk About

The realities of living with a progressive, long term incurable condition is a difficult but necessary conversation. Using the experience of users and carers in shaping the delivery of human services is referred to as “experience shaped design”.

The “Let’s Talk About” survey had three sections:

• Firstly respondents were asked to write about a palliative care experience - giving it a title then summing up three key themes about their experience.
• Secondly respondents were to interpret the significance of their experience using eight questions in the form of triangles each deemed important to palliative care services.
• The final section consisted of demographic and profile questions.

Comparison of cancer and non-cancer responses

The survey data allowed for comparisons between people’s experiences of palliative care according to their condition or illness. Two distinct groups were compared – those whose condition(s) included cancer and those whose condition(s) didn’t include cancer. The family and close friends of the non-cancer group expressed feeling a lack of support as their stories indicate they were less likely to be involved or respected and felt that they were put under too much pressure. Perceived barriers for non-cancer patients in accessing palliative care included the unpredictability of the disease, difficulties with referral criteria and the lack of disease specific expertise.

Thematic Analysis

Identifying themes by analysing the stories told by the survey respondents allowed for the data to be categorised. There are sub-themes within each category of these three broad themes:

1. The difference good care makes
2. Poor experience of care
3. Poor communication.


Sub-themes included talking about dying and a good death, family inclusion and home support or lack thereof, communication and information, managing symptoms and isolation.

Findings

The survey responses provided rich data and indicated that personal experience of palliative care, both good and bad, revealed key themes. Of the 528 respondents 68% indicated that planning for the future was their biggest worry while over half felt frustrated or helpless. At least one in three felt they had too little autonomy and one in five revealed they felt that their family and friends were excluded. Too little and often too late was the response to questions on information provision by over one third and almost a quarter felt that sensitive issues were avoided altogether.

Some key areas for improvement identified by this AIIHPC study were that:
• Avoidance of talking about the issues increases frustration and helplessness
• Information given too little, too late increases frustration and helplessness
• Clear and sensitive communication increases the feeling of being supported
• Ability to make choices increases the feeling of being supported
• Better co-ordination of care and treatment helps with physical symptom management

Recommendations:

Karen Charnley

Even though Ireland is ranked in the EU top five for palliative care according to Gary Culliton in the Irish Medical Times on June 17th, 2016 the head of the AIIHPC, Karen Charnley, highlights the need for healthcare professionals including GPs, nurses and medical consultants, to build communication skills around talking openly and sensitively about care issues. The survey was jointly commissioned by theHSE in the Republic of Ireland and Public Health Agency (PHA) in Northern Ireland. The recommendations included in the report have implications for policy makers, for professionals and for society.

N.McH.

Blood Connects Us All!

Blood cells https://goo.gl/LxsDxA

A decision to donate your blood can save a life. Why?  There is a constant need for regular blood donations (450 ml every 4 months or longer) by healthy people to ensure blood is available for transfusions. Safe blood saves lives and improves health. "Blood connects us all" is the theme of World Blood Donor Day on June 14th, 2016. The focus is on the dimension of "sharing" and "connection" between blood donors and patients. 


Who needs blood?

People undergoing complex medical and surgical procedures or people with severe trauma following an accident or disaster may require blood transfusions. Women with pregnancy complications such as ectopic pregnancies or haemorrhages may require transfusions and also adults and children suffering from severe anaemia. Regular transfusions are required by people with conditions such as sickle cell disease and thalassaemia. Blood is used to make products such as clotting factors for people with haemophilia. Searching some of our Library Databases reveal detailed explanations of these conditions and associated research. See this example by entering “thalassaemia” as a keyword search in Clinical Key. Please note that some databases are only accessible to RCSI staff and students. 

Taking all these situations into consideration it becomes clear how necessary blood donations are and why blood is referred to as the “gift of life”.


RCSI Research

Robert McDonnell (1828-1889)

From surgical techniques to blood transfusion, many advances in healthcare knowledge and understanding have come from the medical professionals associated with RCSI since it’s founding in the late 18th century. The scale and impact of RCSI research has grown significantly as demonstrated by the increase in size and scope of Research Day

Robert McDonnell was a prominent Irish surgeon in the 1800s. He carried out the first ever human-to-human blood transfusion in Ireland more than 150 years ago in April 1865 in Jervis Street Hospital, Dublin. Robert received his licence from the Royal College of Surgeons in Ireland in 1851 and was elected its President in 1877. Read more on this story in RCSI Heritage Blog.

 

Robert McDonnell's blood transfusion apparatus

Test your Knowledge on blood donation!

Blood donation and transfusion techniques have come a long way since then. The World Health Organisation (WHO) recommends that all blood donations should be screened for infections prior to use. Screening should be mandatory for HIV, hepatitis B, hepatitis C and syphilis and The Irish Blood Transfusion Service (IBTS) is committed to supplying Irish hospitals with blood that is as safe as it can be. Check out how much you know already by taking this fun Quiz by the WHO.

To donate blood to the IBTS, see how to Become a Donor.

Summertime at RCSI Library

With exams almost a distant memory and the long summer ahead, check out what we have on offer at the RCSI Library during the holidays!

Summer Reading!

RCSI Library is open throughout the summer months from June to August. You can check out our opening hours on the Library Website and we welcome all of our registered members to avail of our many superb services. Remember to bring your card for access. You can still borrow and return books in both the Mercer Library and Beaumont Hospital Library.  Ask about our extended Summer
Loans allowing greater flexibility with your book borrowing. The book return drop boxes just outside the library doors make returning your books a doddle.

During opening hours you can avail of three floors of study space and eight group study rooms, most of which have screens and one which has an interactive whiteboard – great for sharpening those presentations. These can be booked online. You can access our Institutional Repository via e-publications@RCSI which is an open access repository of research and scholarly output of the Royal College of Surgeons in Ireland. We subscribe to a wide range of electronic journals and databases and almost 2,000 e-books are available through our library catalogue. Even if you are not in the library you can still access the library 24/7. You may be asked for your RCSI Network username and password before connection.

If you are a post-graduate member or RCSI staff you can avail of an ALCID card which enables you to access other university libraries. If we don't have the book or journal you need, ask for a letter of introduction to another Library. The letter must state what you wish to consult. For further information or to apply for a letter or a card, enquire at the Service Desks: Mercer Library 01-4022407, Beaumont Hospital Library 01-8092531 or email library@rcsi.ie.

Our YouTube videos are a great “how to” resource for help in searching our Databases or for finding the Journal Articles you need. Our Document Supply Service is available all summer long when you need items we don't have in stock such as an article or a book. And of course our printing and IT services are available throughout the summer.

World Immunisation Week, 24-30 April 2016

Immunisation is the process whereby a person is made immune or resistant to an infectious disease, typically by the administration of a vaccine. Vaccines stimulate the body’s own immune system to protect the person against subsequent infection or disease. World Health Organisation (WHO)

Image: WHO

This year's World Immunisation Week (24-30 April) focuses on "Closing the Immunisation Gap - Immunisation for all throughout life." The WHO, who coordinate the annual campaign, have created a campaign toolkit to help raise awareness on this theme: Close the Immunisation Gap Toolkit

How much do you know about Immunisation? Some of the myths and facts about vaccination are answered in Q&A format here
If you would like to test your knowledge on immunisation you can take this short Quiz
Some of these fact sheets may help improve your score:
Fact sheet on immunisation coverage
Fact sheet on measles
Fact sheet on rubella
Fact sheet on poliomyelitis

Why strengthening Immunisation Systems matters?
The Center for Disease Control and Prevention (CDC) estimates that 130 million infants are born around the world each year. Protecting these newborns from vaccine-preventable diseases (VPDs) requires an organized, accessible, and well-functioning immunisation program. Strengthening our Immunisation Systems, the infrastructure that supports this global exercise and the awareness campaigns all contribute to improving world health.

Image: CDC

Training materials for best practice in Immunisation The training and upskilling of staff working in immunisation is one of the most important factors in enhancing immunisation performance and effectively introducing new vaccines, technologies, practices and policies. There are a wide variety of materials for professional practitioners available through the WHO website here, and these materials are also relevant for those working in support areas, in community contexts and other healthcare environments. 

Studying Immunisation at the RCSI Library

Our Library collections hold a wide range of materials on immunisation which can be accessed through the 'Clinical Summaries' section on the Library Website.  Full text articles on vaccination and immunology are available through our Clinical Key and UpToDate electronic resources.

For further information you can check out Global Health Links on RCSI Library Website.

Ireland immunisation facts links are available at:
http://www.hse.ie/eng/health/immunisation/
http://www.hse.ie/eng/health/immunisation/othersites/

Focus on Cystic Fibrosis: 65 Roses Day

Today is 65 Roses Day as part Cystic Fibrosis National Awareness Week (11th - 17th April 2016). We have a look at RCSI's contributions to research on this genetically inherited disease, and how buying a Purple Rose can support CF patients, their families and future research in the area. 

Bryan Dobson & Keelin Shanley launching 2016's 65 Roses Day for Friday 15th April.

What is Cystic Fibrosis? 
Cystic fibrosis (CF) is a life threatening inherited chronic disease that primarily affects the lungs and digestive system. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that: 

• clogs the lungs and leads to life-threatening lung infections; 
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. 

Health probles associated with Cystic Fibrosis.
Image: Blausen.com.

Ireland has highest global rates of CF
Ireland has both the highest incidence of CF in the world at 2.98 per 10,000 and the highest carrier rate in the world with 1 in 19 individuals classed as carriers. The incidence of cystic fibrosis in this country is almost two and a half times the average rate in other EU countries and the USA (1). At present, there are approximately 1,200 people with Cystic Fibrosis living in Ireland (2).

Many people with the disease in Ireland can now expect to live into their 30s, 40s and beyond. People with CF in Ireland are increasingly going on to attend third level colleges, accessing employment, and living more independent lives, with the support of family and friends. 

Cystic Fibrosis Ireland is a voluntary organisation established by families of CF patients in 1963 to improve the treatment and facilities for people with Cystic Fibrosis in Ireland.

RCSI Research in Cystic Fibrosis
Research into respiratory diseases like CF is a particular strength of the College with notable breakthroughs such as the role of estrogen and the CF gender gap showing that the female hormone oestrogen promotes the presence of a particular form of bacteria which results in more severe symptoms for female cystic fibrosis patients.

Other major research interests in the area of respiratory diseases include pulmonary innate immunity, airway fluid dynamics in Alpha-1 antitrypsin deficiency, protease/anti protease interactions in the lung, signal transduction and gene regulation in bronchial epithelium, the role of the neutrophil in inflammatory lung disease, microRNA profiling in CF, pro-resolution and ion transport effects of lipoxins in CF, endoplasmic reticulum stress responses and anti-inflammatory and gene therapeutics.

From the RCSI Library catalogue!

Studying Cystic Fibrosis at the RCSI Library
Our Library collections hold a wide range of materials for learning about CF, check out our saved search here for a taste. 

You can also check out all of our institutional publications related to Cystic Fibrosis from RCSI's institutional repository e-publications@RCSI.   

This is a wonderful resource managed and maintained by the RCSI Library which is an open access resource with all research and scholarly outputs from the College. Check out our saved search here to see publications to CF.

Why 65 Roses?
'65 Roses' is how some children first learn how to say 'Cystic Fibrosis'. The symbol in Ireland for '65 Roses Week' is a purple rose.

Find out more about CF

HSE: Newborn screening programme

Cystic Fybrosis Ireland
National Centre for Medical Genetics 

References

(1) Farrell PM. The prevalence of cystic fibrosis in the European Union. Journal of Cystic Fibrosis 2008 Sep;7(5):450-3.

(2) The Cystic Fibrosis Registry of Ireland