Ward Stories

Tracey Jardine – Nurse Specialist for Inherited Cardiac Disease

 

Tracey Jardine - Nurse Specialist for Inherited Cardiac Disease

Tracy Jardine is the Nurse Specialist for Inherited Cardiac Diseases. In 2008 Tracy won the British Heart Foundation Exceptional Performance Reward for Excellence in Cardiac Clinical practice in 2010 was runner up finalist in the Royal College of Nursing NI Nurse of the Year Awards June 2010.

 

Q1. You work in the specialist field of Inherited Cardiac Conditions, can you tell us about what inherited cardiac disease is?

An Inherited Cardiac Condition refers to a heart condition that usually affects more than one member of a family. The condition is passed from generation to generation. DNA (deoxyribonucleic acid) is the genetic material of a cell within your body; the chromosomes inside the nucleus (control centre) of the cell are made of DNA. DNA is really a code that is divided up into sections. These sections are genes which carry all the instructions for making up our body. Most individuals with these conditions live normal lives. Unfortunately however inherited cardiac conditions have been associated with a very small number of sudden cardiac deaths in young people before the age of 35-40. This is a relatively rare phenomenon and it is becoming increasingly recognised as a potentially avoidable tragedy following appropriate screening of close members of a family in which a diagnosis has been established.

The more common inherited cardiac conditions can affect the muscle of the heart or the electrical conduction system of the heart.

Heart muscle conditions are known as ‘Cardiomyopathies’ (cardio:heart, myopathy:muscle) the three commonest types are:

  • Hypertrophic Cardiomyopathy (thickened heart muscle)

  • Dilated Cardiomyopathy (enlarged heart)

  • Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) (predominantly affects the right side of the heart)Inherited cardiac conditions that affect the electrical conduction system of the heart include:

  • Long QT Syndrome

  • Brugada Syndrome

  • Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)

    Q2. What does your role involve?

    My role is a multifaceted and rather unique one which has evolved to meet the requirements of each patient and their family on an individual basis. Ultimately I am an invaluable point of contact for individuals throughout the different stages of their investigations and diagnosis which may take several months initially. I am often the first point of contact for a family referred to our regional service at the Royal Victoria Hospital either following the suspected sudden cardiac death of a young individual, or for individuals who have been referred for investigations that may lead to a diagnosis of one of the conditions mentioned previously.

I spend a significant portion of time answering patient queries or simply listening to their concerns. This can be a particularly worrying and stressful time for the individuals who are faced with the prospect of being diagnosed with an Inherited Cardiac Condition. I have found that once the individual has a greater understanding of their diagnosis and recommended treatment or lifestyle modification, they become much less fearful and after a number of weeks or months they are able to continue with their life as normally as possible.

  • Q3. Did you always want to be a nurse?

  • I think I was always destined to be involved in a caring profession of some description. I cannot quite remember why I opted for nursing as a profession. I do remember looking after a number of Cardiomyopathy patients a number of years ago in the Coronary Care Unit after I qualified and realised that there was no support mechanism for this group of patients at that time. I completed my BSc and MSc in Nursing along with a Diploma in Counselling and during this time I have been fortunate to be involved in the establishment and coordination of the ICCs regional service for N Ireland whilst working closely with other groups throughout the UK.

    Q4. How would you see the future of inherited cardiac conditions care developing in N Ireland?

    Since the establishment of the service around 2006 when there were initially 2 clinic slots per week with 1 Cardiology Consultant and 1 Nurse Specialist, the number of patients and families who now attend our clinics has increased substantially and surpassed our expectations as to how the service has continued to grow and develop. There are currently 2 Cardiology Consultants, 1 Paediatric Consultant and 2 Nurse Specialists and we are continuing to develop an integrated service with other specialties such as the Genetics department. In addition to the 7 weekly clinic slots which take place in the adult hospital, a monthly ‘family clinic’ has been established which takes place in the Children’s Hospital and allows parents and children to be seen on the same day. This part of the service is also overwhelmed and I would hope that this may be expanded in the future.

    Our service is innovative in that we now have Nurse Led clinics alongside that of the consultants. Ideally we would like to offer a ‘one stop’ clinic whereby cardiac tests would be carried out on the same day as the clinic visit. Unfortunately financial restrictions which affect all areas of the NHS are likely to dictate otherwise. The service has established links with other specialist centres in London which can now provide expert opinions via a videoconferencing facility. In the future I would also envisage that a number of patients would be suitable for review at their local hospital, with the option of being seen again at the regional service RVH if necessary.

    • Q5. You have been involved with teenagers with heart conditions at residential ‘away weekends’ in England. Children’s Heartbeat Trust are planning a residential for teenagers later in the year. How did you find this experience and is this something we should be looking to provide in N Ireland?

    I have been affiliated to the British Heart Foundation (BHF) since they funded my initial post in 2006 for 3 years up until the funding was taken over by the Belfast Trust. I have continued to work closely with the BHF on a number of projects. I was delighted to have been invited to take part as a team leader at the BHF ‘weekend stunner’ for teenagers with heart conditions in October 2012 within my capacity as a Nurse Specialist. There were 38 teenagers each with differing heart conditions who attended. The event took place at an outward bound facility on the outskirts of London over the weekend. Various activities were on offer and were chosen according to the abilities of each individual.

    I found this to be a most humbling and rewarding experience having had the opportunity and privilege to meet so many inspiring young people who face many different challenges each day with regards to differing health issues. This was an exceptionally invaluable opportunity for these teenagers to meet others within their own age group who have had similar experiences to them, an opportunity they otherwise may never have had. Having seen the immeasurable benefits that such an event could offer, I feel that an event like this in Northern Ireland would provide an excellent opportunity for young people to have the opportunity to come together and make life-long friends to share their trials and conquer their fears together.

    • Q6. What are the most satisfying and the hardest aspects of your work?

    I consider myself to be rather lucky as I thoroughly enjoy my job and work within a small, yet considerate and encouraging team. The most satisfying aspect of my work is realising that you have made a difference to someone’s life in what can only be considered a very difficult and stressful time for the family. Knowing that you are available at the end of the phone provides a lot of reassurance for parents/individuals as it is possible to provide answers and relieve some of their anxieties as quickly as possible. Following diagnosis it is challenging when we often have to advise young people not to participate in strenuous or competitive sports. This has so many implications for them coming to terms with a change in their lifestyle and trying to find alternative suitable interests and activities which can also integrate them within their peer group, and provide them with enjoyment and satisfaction.

    Undoubtedly the most challenging and difficult aspect of my work is having to engage with families following the sudden and unexpected death of a young person. The pain and grief suffered by each family is a memory that always remains with me. Having the ability to respond to their needs as sensitively as possible and providing a listening ear along the process can sometimes provide a little comfort in such a devastating situation.

    Q7. Away from the busy life of hospital, what do you like to do to relax?

    The most significant people in my life are my husband, 2 sisters and most importantly my little 6 year old Imogen. Each day of the week is rather hectic, rushing to and from activities such as rainbows, swimming and piano lessons. We spend a lot of time at outdoor events (I particularly enjoy watching rugby) and also enjoy baking and producing some wonderful creations at home. Holidays abroad are usually the only way to relax. My New Year’s resolution for 2014 is to book more holidays!!