Some of my earliest memories are of hospital visits, being unwell and off school, and knowing that I had a ‘poorly heart’.
Surgery to close my atrial septal defect (ASD) and fix my pulmonary valve when I was 9 years old dramatically improved my health, and it was another 20 years before it resurfaced as a significant issue. Following a valve replacement in 2005, things were remarkably stable again—that is, until 2016 when I had the misfortune to have an optic nerve stroke, which has left me with no usable vision in one eye. The next setback came less than a year later: I was hospitalised for many months with bacterial endocarditis and faced high-risk emergency surgery to save my life.
An unusual context
With this background, it is perhaps unusual to learn that I have been a keen recreational long-distance endurance athlete, competing in multiple marathons, century bike rides and an ironman triathlon. I also run my own fitness and rehabilitation business, working predominantly with people living with longterm conditions including those of cardiac and pulmonary origin, and cancer.
I documented the highlights of my life story in a book, Upbeat: Growing resilience and positivity in the face of medical adversity, which became an Amazon bestseller in May 2018. Having the confidence to share my story and, more importantly, the lessons I have learned along the way, has given me the opportunity to contribute in a meaningful way to improving the lives of other patients and hopefully leave a useful legacy.
I recognise how fortunate I am to be relatively unscathed by my experiences. Physically, it has had an impact, more so in recent years— but mentally, I have been able to rebound remarkably well from the various setbacks. Whether this is through a combination of good genetics, perfect parenting (I grew up in a positive and nurturing environment where I wasn’t wrapped in cotton wool and was encouraged to set my own limits), excellent support from my peers, family and friends, or just good luck, I am not sure. Many heart patients are not so fortunate.
Statistics show that 30% of people living with a chronic long-term health condition also suffer with mental health problems. My experience in the congenital heart world would indicate that this number is representative, if perhaps a little low. This is perhaps unsurprising, given that adult congenital heart disease (ACHD) is a lifelong condition and patients often live with
variable health, frequent medical intervention, potentially limiting symptoms and a very uncertain future. Depression and anxiety are commonly experienced, and this can have an impact on medication compliance, employment, social engagement and the maintenance of a normal family life.
It is my belief that the NHS is missing a big opportunity when it comes to better supporting patients and their mental health, thus helping them to improve their quality of life when living with a long-term condition.
It is easy to see that pressure on the NHS means there is a struggle to provide holistic care which successfully integrates physical and mental health services. The patient pathway can include referral to specialist psychological support, but there is undoubtedly an opportunity for problems to be addressed long before they become a crisis.
In an ideal world, every interaction with a medical professional would include an opportunity to speak about not only the physical, but also any mental health challenges. There seems to be a place for patients to be given more guidance and support within current service interactions.
Given the pressure on consultants’ time, providing detailed lifestyle advice about nutrition and exercise, or to assess any mental health concerns, often falls to the specialist cardiac nurse, if it happens at all. Nurses can be a more approachable and accessible interface for patients but there are already vast pressures on their time and patients don’t always know how to ask the right questions or when to seek advice.
In my experience, there are several ways in which patients can be encouraged to be proactive when it comes to taking care of their health. Very often, this takes little time, signposting and follow-up to ensure it is effective.
Exercise for physical and mental health
We all know that it is desirable for people with long-term health conditions to actively look towards lifestyle improvements to boost their quality of life. It is not just physical health which can be improved. The link between moderate levels of regular exercise and improved mental health is well known, yet so often overlooked during rushed consultations and follow-up appointments.
I am in the privileged position of not only being an ‘expert’ patient, but also an exercise and rehab professional. For many patients, knowing where to find trusted sources of support which takes account of their health, ability, drug interactions and contraindications, is something of a minefield. They can easily fall into the extremes of doing nothing at all, based on fear or lack of knowledge, or moving into potentially risky behaviours such as high intensity exercise without appropriate clearance.
Equally, patients can have many barriers to starting or continuing an exercise programme such as fear, medication side effects, concerns about exacerbating symptoms or previous negative experiences. They may find a programme in a magazine, which places them in a vulnerable position, susceptible to fads, unsustainable changes, and lead them to follow generic advice which has not been individualised to their needs.
Having often faced a life-changing health situation, it is understandable that people can feel very isolated once they are outside of an acute hospital setting. A portion of cardiac patients are offered phase 3 rehab, but
uptake is surprisingly low and not everyone meets the inclusion criteria. Even for those that do, long-term exercise adherence is not guaranteed. Undoubtedly, more needs to be done to promote exercise and its many physical and mental benefits.
Value of camaraderie
For me, a sense of camaraderie has been one of the most powerful ways of looking after my mental health. Having the opportunity to speak with other patients and learn of their experiences has gone a long way towards normalising my own. There is nothing quite like being able to speak with a fellow patient with whom you share a common bond, and that can be very important when it comes to maintaining mental health stability.
On a personal level, I have been greatly supported by online support groups, and the work of the Somerville Foundation, the largest charity in the UK supporting adults and young people with a heart condition. Recognising that many people living with a long-term condition do not have easy access to a specialist support group, I have also tried to fill this gap by starting an Upbeat Warrior Facebook group for anyone looking for peer support.
It doesn’t take much to signpost patients to these and similar resources, and their ability to help alleviate anxiety and depression cannot be overstated. With so many pressures on limited resources, it is evident that the NHS needs to look more widely and offer patients a greater range of mental and physical support services. This is starting to happen, yet so much more needs to be done.
Understanding the growing burden of mental health problems on the NHS
For me, it makes sense for the NHS to invest more time and resources to help prevent patients living with ongoing health conditions from experiencing a mental health crisis, rather than to treat them when it becomes a long-term problem which is massively detrimental to quality of life.
I can easily offer some observations from my 2017 endocarditis diagnosis and emergency open heart surgery, with its 2-month hospital stay. The hospital literally became my home, and it was very hard being out of my regular routine and environment. As a long-term patient on a cardiac ward, I was acutely aware that my needs were fewer than those of the typical, more elderly cardiac patient, where it was obvious that many had dementia adding to their physical problems. The additional burden of this on staff was plain to see.
I did my best to keep a low profile, within the confines of my four-times-a-day antibiotic infusions, but this meant I did not receive as much nursing interaction as I might otherwise have done. I feel fortunate that my resilience and toolbox of coping strategies enabled me to be less affected by situations, which could well have been traumatic for someone with fewer resources or support. That said, there were times during my inpatient stay that I really struggled mentally.
Although my physical status was regularly monitored, at no point was my mental health mentioned or directly assessed. Perhaps as I was displaying no outward indications of distress, this requirement was discounted. I do wonder if it would have been forthcoming had I done so, or if the provisioning for such things is only there in an acute situation. Had I been offered the opportunity to ‘talk to someone’ about my emotions, I would have taken it!
I know that it is not a case of deliberate neglect when it comes to the psychological aspects of patient care, but rather that the necessary time, resources, and training for staff are simply not there. It would certainly seem appropriate for anyone experiencing an extended hospital stay, major cardiac surgery, or symptom deterioration to be offered some form of psychological support.
It is well recognised that the NHS is worldclass in supporting the medical needs of patients, but perhaps it is less so when it comes to their mental health—yet these are so often intertwined. So in the long term, what is the financial cost of this to the NHS, and what is the emotional cost to the patient?
This article was originally published in the British Journal of Cardiac Nursing, March 2019 Vol 14 No 3.
To share your own story, email the editor at firstname.lastname@example.org. To access more articles like this one, get your own subscription to the British Journal of Cardiac Nursing at https://www. magonlinelibrary.com/page/bjca/subscribe#
If you would also like to see your story published in GUCH News, please contact us at