Inequalities in healthcare led to my kidneys failing
Daniel Newman was 32 when his kidneys failed in 2018, after living with type-1 diabetes since he was ten years old. Growing up in Ponders End, an area of Enfield, London which is one of the most deprived in England, Daniel, of Caribbean heritage, has experienced inequality in healthcare firsthand.
Daniel says: “My childhood was pretty normal, but I did grow up in a deprived area. We were very reliant on our GP surgery for health information and were not empowered to do our own research. It’s very hard to advocate for yourself in a healthcare setting without this.
“Within the Caribbean community, health wasn’t spoken about as much as it is now, but even though it has got better, there is still more to do. There are many layers to the challenges faced by my community, such as access to information and care, financial obstacles, and stigma.”
The stigma of living with a chronic condition
These pressures greatly affected Daniel’s ability to manage his health. Recalling his diabetes diagnosis, Daniel says: “I needed to drink lots and felt unwell. I was visited by the emergency doctor and sent to A&E, where I was told I had type-1 diabetes.
“I went back to school and wanted to be how I was prior to my diagnosis, but things had changed. If I had low blood sugar, I’d have to go and let my teachers know to boost my glucose levels, and it made me feel different to other ten-year-olds.
“I tried to hide my diabetes as I became a teenager and was very secretive about it. Some of my classmates gave me the nickname ‘sugar boy’ which was upsetting. I lost confidence and, to keep everything hidden, I treated my diabetes in ways that were not medically approved. I wanted to do what everyone else was doing, without thinking about my condition. I was burnt out and had had enough of the relentlessness of the diabetes by that point.
“I look back and believe if my diabetes had been managed better and there had been more understanding, I may not have developed chronic kidney disease. I wasn’t looking after myself and my glucose levels were regularly higher than they needed to be. I felt alone, and healthcare professionals didn’t approach my care in the right way. Scare tactics weren’t a good way to motivate me and I became disengaged.”
Today, Daniel’s perspective is very different. He says: “In adulthood, I’ve become an HR professional, and I worked at Breakthrough T1D (formally JDRF) – a type-1 diabetes charity – for eight and a half years. Being in that environment gave me access to information and advice I hadn’t had before and was transformational in enabling me to advocate for myself. That demonstrated to me how important it is to have the knowledge to manage your care.”
Living with multiple health conditions
Kidney disease doesn’t often appear on its own and is commonly associated with other health conditions such as cardiovascular disease, diabetes, and mental health. In diabetes, high blood glucose levels increase the pressure inside the delicate filtering system in the kidney (the glomeruli), causing increasing damage to the filters which can lead to kidney failure. It is not inevitable, but it is common. Managing your diabetes well can reduce the risk of kidney damage.
Daniel was diagnosed with chronic kidney disease in 2013 and says: “I felt like I’d failed a test. There’s a stigma that if you develop further health complications from diabetes it is because you’ve not looked after yourself, and that’s the last thing anyone wants to hear. It’s a part of living with diabetes that needs to be spoken about more to help people feel less alone.
“I was fortunate that I did not need dialysis treatment, as I received a transplant from a family member in 2018. Physically I recovered from surgery in about three months, but I didn’t realise the mental health challenges that would result from having multiple health conditions. I was waking up every day worrying that my kidney would be rejected, and about the implications for my diabetes. It was always in the back of my mind.
“My diabetes, kidney and mental health care has always been with separate specialised teams, and that can make the patient experience more difficult when communication between departments isn’t at its best. Particularly for those who are not comfortable advocating for themselves or relaying their health information between care teams.
“The financial pressures of having multiple chronic health conditions with the cost of medicines, needing time off, or being unable to work can put a huge strain on people too. That can result in people who are disadvantaged not receiving the best care or being unable to put their health first. I’m fortunate to have an office job which is flexible, but not everyone has that.”
Making healthcare more equitable
Daniel now works with organisations such as NHS England, Breakthrough T1D, Diabetes UK and Kidney Research UK, as a patient advocate to help improve healthcare. He has previously worked with the National Institute for Health and Care Excellence (NICE).
Daniel says: “I want to bring my experiences into spaces and conversations where voices like mine may not have been heard. I want to create change to make life easier for people living with chronic conditions and young people who may face these challenges in the future. I want to help organisations address health inequalities, giving people access to information and care.
“I also want to bring care, for conditions like diabetes and kidney disease, together. It’s important to view the whole person rather than just a condition, because it’s not just about diabetes or kidney disease, it’s life. Health, work, financial pressures, family and other aspects of life all influence our wellbeing and can impact on each other.
“I share a lot of my journey online and want people living with chronic illnesses to know they’re not alone. Even though it isn’t perfect, I want to show it’s possible to live a good life with these conditions. If I can help one person not feel how I did as a teenager, then that’s amazing.”
“Life is going well now; it feels like I’m grasping a second chance at life. My healthcare team is one of the best I’ve been supported by. They’ve always understood me, spoken openly, and wanted to help without judgement. I’m passionate about the advocacy work I do and there seems to be a shift in thinking which is exciting for the future.”
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