Following a life-changing diagnosis, I was caught in a cycle of frequent avoidable emergency admissions into hospital. Working with my clinicians with the support of my family, I was able to reduce these avoidable admissions. I am aware that a huge shift in the healthcare I received was possible thanks to the support of my full-time carer who helped advocate for me as well as taking on even more responsibility in monitoring these new issues. I was also only able to do this thanks to my ability to reach out to Patient Advice and Liaison Service (PALS) and communicate my needs to both them and the Accident & Emergency (A&E) clinician. I had the financial stability to buy the monitoring devices and to make my own way to A&E without the need for an ambulance. I was already disabled and unable to work so the additional monitoring of my health was far easier to add into my daily lifestyle compared to when I was working shift work full-time as a social worker. My pre-existing health conditions also meant that I was used to navigating the healthcare system and had good relationships with my GP/primary care team. All the steps I took combined with the care plan meant that I reduced my admissions down to just a few hours once or twice a year! Thereby, giving me my quality of life back and literally saving the NHS thousands of pounds.
I am aware that I am lucky to have many 'privileges' in my personal situation that led to the success in reducing my hospital admissions, I would say the key 'privileges' for me were:
Having a full-time carer
Support from my family and friends
Having English as my first language (as this is the language primarily used in communication in the NHS)
Ability to find and understand information about health to make decisions about my health
Knowledge of how the NHS works such as how to navigate it and where to go for help when things are not going well
Time to be able to look after myself
Financial stability
Without these ‘privileges’, my life would not have changed. I believe strongly that everyone should have access to personalised care like me. This can improve people’s quality of life and save our NHS money that can in part be reinvested in supporting people to better manage their own health conditions. Tackling health inequalities is so important and having better health should not be about ‘privileges’. This is my story.
After years of managing long-term conditions I found myself with a new diagnosis of Addison’s disease, which was a complete unknown. Addison’s disease is a rare disease which means my body does not produce as much steroid hormones as it should. These hormones are vital for the body to function normally. Addison’s disease can be potentially life-threatening as the body doesn't do that fight or flight response. So if I get sick or injured, there's a risk that I can go into a coma and ultimately die without the right treatment.
I am very lucky that the conditions I was already managing were stable and managed with a routine regimen of medicines and treatments. Then along came this new diagnosis which felt quite overwhelming. I was given very little information about how to manage the condition by anybody. I had a great GP who gave me everything I needed to manage an emergency event but I struggled to find out how to avoid getting to the point that it became an emergency. Very quickly it became obvious that my condition was particularly unstable and I started to have regular situations that would ultimately end up with calls to 111, 999 and subsequent ambulance and A&E visits. By the time I was taken to hospital I often needed a week-long stay to be well enough to go home. It would take me 2 to 3 weeks to recover. Then the spiral would start again a few days later. My entire life was spent at one stage or other of this cycle of decline, admission & recovery.
I became aware through conversations with medics that if I received some fairly basic care earlier I could avoid admission. However, when I tried this I was turned away from A&E saying I wasn’t sick enough and sure enough I ended up back in an ambulance through A&E and into High Dependency Unit (HDU) just days later.
Having attempted to get treatment earlier a couple more times I became frustrated. Not only was this impacting my life significantly but I was acutely aware that I was spending days out of every month in a hospital bed that could be occupied by somebody else.
I tried to address the situation with my GP and endocrinologist (doctor that specialises in health conditions relating to hormones) but I hit brick walls. I then approached the PALS team at my hospital and explained to them what my frustrations were. They empathised and put me in touch with the lead clinician of A&E. We corresponded via email where I outlined my concerns and we then proposed a way of treating my condition earlier rather than later. After just two emails ironing out the details I received a care plan that I could carry a hard copy of but also could be brought up on the computer system in A&E when I attended.
Just a week or two later we put the plan into action when I became unwell. When I was triaged in A&E my plan was flagged and I was quickly given the treatment I needed. On this visit and most since I have been in and out of hospital in just a few hours. I was able to go home and recover very quickly and it doesn’t feel like an exaggeration to say that I got my life back.
This health problem was costing me my lifestyle and my health but the cost to the NHS was huge too. Figures vary, but my usual visits at this point included a 999 call, an ambulance and an A&E admission. A Guardian newspaper article from 2015, at the peak of my admissions, suggests that each trip would cost over £300 with an additional cost of approximately £300 per night’s stay (costs vary depending on source). This means that an average stay for me would have been £1,500 without treatment or investigations*. At that time my admissions were every 6 weeks adding up to roughly £13,000 per year.
The consultant who did my care plan also made appropriate referrals to specialists who helped me understand my symptoms, how to manage and treat them but most importantly when to get help. I got so much advice, bought the tools I needed (blood pressure and heart rate monitor, blood sugar testing kit etc.) and took some control back.
What I have called ‘privileges’ led to the changes I needed and without that my life would not have changed. This is why I am passionate about tackling health inequalities. We can do this by working together and embedding co-production to breakdown these barriers in order to improve people’s health and wellbeing.
(*based on a 999 call, ambulance, A&E admission and a 4-night stay on a medical ward)