Transition to adult care involves a wide range of stakeholders from hospital and health managers, health professionals, pharmacists, young patients and their families. The European Pharmaceutical Students Associations explains the crucial role of pharmacists in that regard.

There is a very low awareness and understanding of the Transition issues amongst many healthcare professionals in Europe. When confronted with the topic at the 13th Autumn Assembly of EPSA (European Pharmaceutical Students Association) the majority of the pharmaceutical students were confused and surprised to learn about the patients struggles. The topic was presented by a representative of the EPF Youth group, during the workshop entitled ‘Transition to Adult Care and its Psychological Impacts on Young Patients’.

The workshop was part of the Educational program of the event and achieved 3 important results:

1. During this interactive session the audience recognized that transition may represent a problem for young patients.
2. The audience regarded the role of pharmacists in the transition process and suggested that the figure of the pharmacist can work along with doctors when talking to patients on topics like treatment and drugs.
3. The pharmaceutical students shared their own perspectives, the realities in their respective countries, exchanged ideas and provided positive feedbacks. The outcome was an agreement that pharmacist need to be trained to be able to effectively talk to patients especially young ones.

The attendees were also presented some best practices that have been already implemented in different European countries. Such practices aim to tackle the lack of coordination among stakeholders who are in charge of ensuring that the process takes place as smoothly as possible. Thus a team made up of different professional figures, e.g. pediatric and adult primary care doctors, nurses and educators is deemed crucial when supporting young patients who move to the adult-centered health care.

Another point in common to projects/programs presented is that they are designed to equip young patients with skills and knowledge. The aim is to support the patients in taking control over their condition and to better self-manage. The figure of psychologist is also recognized essential to avoid any detrimental psychologic implications in bewildered young patients which often lead to low rates of adherence to specific treatments or drop-outs. But most importantly, the best practices suggest that transition is successful when young patients can share fears and doubts to other peers and are able to have access to the right information that allow them to live this delicate process efficiently and comfortably.

The workshop follows up on the roundtable the Youth Group hosted in Brussels last March which saw the involvement of different stakeholders ranging from healthcare professionals and patient organizations to MEPs and representatives of the academic world. Transition was defined as the process that young patients with chronic conditions go through when moving from child-centered to adult-centered health care systems and was identified as a major problem in the context of access to healthcare. Thus, it was recognized prominent importance on this year’s EPF agenda. Specifically, the rationale behind this workshop was the need to identify and limit the psychological issues that may arise during the process. When poorly managed, the transition can also result in lack of trust in health professionals and in the healthcare system.

The Models of Child Care Appraised (MOCHA) project held its General Assembly meeting in Rome on the 20 October 2016. The EPF Youth Group Chair, Aneela Ahmed tells us about her experience as a participant.

The MOCHA project meeting and General Assembly turned out to be a very interesting experience. In the backdrop of the scenic and historic roman ruins proved to be a fitting setting for the first General Assembly. The current research is broken down into work packages that help to organise and categorise the research for an easier dissemination into different languages. The General Assembly helped to humanise the researchers for stakeholders allowing engagement of country agents, stakeholders and External Advisory Board (EAB) Members which included the voice of young patients through a designated member of the EPF Youth Group.

Many issues were raised by the youth delegate concerning issues surrounding transition, the current chart and what is included as essential factors relating to child health, the current primary health system and how it may or may not fit the needs of children across Europe. We welcomed colleagues from Australia and America to help advise on specialist issues related to public health whilst continuing the dialogue between existing EAB members on how we could contribute towards promotion and finding connections for research.

It was particularly insightful to hear the recommendations from colleagues who were well versed and informed through the research and knowledge they had through their organisation however, it must be noted that it was imperative for YG member presence. Simply, due to the insight and issues that could go amiss when discussing primary health care for children and young people when direct consultations cannot be implemented.  It was a successful meeting and the future of this project for both the MOCHA team and our young patients looks a little brighter because of it.

Antimicrobial Resistance, the resistance to some antibiotic drugs is a very hot topic currently raging – and rightly so – in view of its alarming proportions. Mary Lynne Von Poelgeest-Pomfret, from the World Federation of Incontinent Patients shares on our blog her very personal and touching story.

It is a story very close to home as it relates to my husband, and I think we, patient, carers, health professionals, can all learn from it.

It all began in the autumn of 2015. My husband went to our GP and was diagnosed with an acute urinary tract infection for which he was prescribed a course of broad spectrum antibiotics. No change. Symptoms persisted. A second course of antibiotics. Still no change. By the third visit, weeks later, it was finally decided to do a urine culture to test. This revealed antimicrobial resistance to two well-known bacteria: helicobacter pylori and morganella morgani.

Without going into the details, my husband was reluctantly referred to the academic teaching hospital in our region. A treatment plan was quickly set up, involving a surgical intervention and three weeks of antibiotics administered via an IV. The plan was then to spend the first few days post-operatively in the hospital and subsequently continue with the treatment at home.

To summarize, the surgical intervention and antibiotic IV administered in the hospital to combat the AMR were correct, but the actual methodology and implementation protocols within the hospital failed.

The surgical intervention led to complications which were incidentally never explained in the hospital. The IV treatment was fine in the clinical setting but there were few, if any, adequate mechanisms in place to enable a smooth transfer to the home situation. The onus was entirely on the patient and in this case it was me who had to arrange for the continuation of the IV antibiotic treatment at home.

The mechanisms for the transfer of the IV treatment to the home situation were just not in place and the hospital didn’t really wish to know. It was only thanks to endless running around (on my part), persistence and resolute handling of the situation by the wonderful specialized homecare nursing team – nothing but praise and admiration – that treatment at home could be continued.

But then the following to cap it all.

The dosage in the IV containers as prescribed according to the dosage as administered in the hospital setting went completely wrong. The local pharmacist supplied the antibiotics in the wrong dosage.

It was only thanks to the ‘beady eye’ of the specialist homecare nurse immediately after release from hospital that the situation was rectified, and only after many phone calls between the homecare nurse, the hospital and local pharmacists.

In the end, the various hiccups and errors were rectified and despite the extremely cumbersome and onerous situation both for my husband and myself, the future is looking optimistic as far as the AMR is concerned.

But there are many lessons to be learnt:

• From the outset, the flippant attitude towards the antimicrobial resistance needs to be addressed. AMR should be taken seriously and treated accordingly.
• The communication channels between the various parties and hospital protocols need to be tightened up. The checks and balances certainly need to be in place when it comes to medical prescriptions, and also the transfer of care from the clinical setting to the homecare environment.
• Finally, a patient should never be placed in the precarious, onerous and utterly irresponsible situation with which we were confronted.

The lesson for the patient and the carer is therefore to be steadfast: demand the right treatment and do not take a no for an answer. Much of the hardship, frustrations and inadequacies of the system could have been avoided had we been more resolute and indeed better informed. My husband would not had had to undergo a very invasive surgery and AMR treatment if there had been a dedicated treatment plan right from the outset.

So the message is clear:

Speak up and take note of all parties involved! As a patient, be resolute and know what is best for you. Communicate and question so that errors can at least be minimised, and if in doubt… ASK!