Ninjabetic – Fighting for survival…
I’m unsure of how to start this article, so I thought I’d just come out and say it… I’m exhausted. All I’ve thought about for the last few months is how much of a struggle I have found being a patient and I wonder how much longer that will go on for. Only recently I have realised that the exhaustion I’ve been feeling isn’t only down to the symptoms of diabetes (and now gastroparesis), but I’m finding the fight that comes with being a patient equally tiring. What I find even harder than being exhausted is knowing that I don’t need to feel this way – I know that our NHS can be excellent and I know that I can be a patient who thrives when the service works well. Let me explain…
I’ve had diabetes for 13 years now and before my diagnosis I didn’t have much contact with our health service. Even when I was diagnosed, and for many years after, my contact with the NHS was kept to a minimum (many of you know my past of rebellion and denial). However, since I have become engaged and empowered to take care of my health, I have also become engaged and empowered to take care of our NHS, or as much as I can as a patient with only a small voice. The truth is that in the past few years I have become tired of trying… trying to have better care for myself and for others, but I carry on because I know what the NHS can do.
An example is my recent diagnosis of gastroparesis. After six years of symptoms being dismissed – nausea, vomiting, abdominal pain, unexplained high and low glucose levels etc resulting in sleepless nights, hospital admissions, reduced quality of life, I was offered a gastric emptying study, the results of which diagnosed gastroparesis. From that diagnosis it has taken over 200 days of phoning, emailing and writing for me to be prescribed any medication. I was told that I needed to see a specialist but there hasn’t been enough staff available, while in the meantime I suffered from months of vomiting, discomfort and weight loss. Not only that, but my diabetes control has suffered as a consequence of being left untreated, potentially leading to further complications in the future. On the flip side, when I finally saw a consultant yesterday, I was provided with excellent care, support and the best treatment available – it was all there waiting for me, but the system hadn’t allowed me, for whatever reasons, to access it.
Another example, and perhaps one that has left me feeling the most drained, but leads me to fight even harder, is that in the last seven months I have lost three friends; two of which were avoidable deaths. Within the diabetes online community a blue candle symbolises the death of one of our peers (whether they pass away from diabetes or something else). In the past seven months I have seen not only seen blue candles for these three friends but I have seen many more for others who have passed away. Reasons for some of these deaths? Misdiagnosed Type 1 diabetes, insulin errors in hospitals, lack of psychological support/services for those struggling with insulin omission. A very close friend was sent away from A&E a number of times before her diagnosis was finally made. Only a few months later I was hugging her goodbye, trying to stay strong but knowing it would be the last time that I would see her
Then comes the other side, the excellent care that patients receive in many hospitals and other health care settings. The quick diagnosis which is followed up by excellent support and the best treatment and technology to help a person manage; the patients who are lucky enough to receive psychological support for their emotionally draining long term condition; the wards which have the correct staffing levels to be able to cope with the demand and give patients the best care they can. It’s this side of the NHS that gives me hope that I won’t be an exhausted patient forever, however I am feeling it more now than I have in the last 13 years. This leads me to wonder how exhausted those caring for patients feel. If I feel broken as a patient, how do my healthcare professionals feel? They are humans too – not machines.
A few of you may know that I support the NHS Survival campaign, this is due to my experiences, both good and bad, within the NHS; It is also due to hearing the experiences of thousands of other patients, carers and professionals through social media. A few weeks ago I was unsure if I should try to fight any more, I questioned a health care professional who was fighting and I was told that they could just sit back and do nothing, but what would that achieve? In the past, when it comes to my condition, I have sat back and done nothing and I have suffered as a consequence with complications, starting at the age of 25.
However, when I have fought in the past I have achieved great outcomes, not only for myself but for others. I know that my recent experiences within the NHS have been poor (for reasons that I am yet to discover, I am sure) but I also see and experience the fantastic work that the NHS can do and this is what helps me to continue my fight. As patients we need to thrive, and in order for that to happen we need the NHS to survive. I would like to ask you to think about your experiences within the NHS and to think about how you would manage it wasn’t here anymore… if you think it is worth fighting for, then maybe you could support NHS Survival too.