How we can learn from Martha’s sacrifice
“If you’re worried something’s going wrong, you should scream the ward down because that’s what I didn’t do and I regret it.” These are the words of Merope Mills, mother of Martha Mills who tragically, and entirely avoidably, died at 13 from Sepsis while in hospital. Her care was not escalated appropriately and Merope’s concerns were ignored.
The fact that Martha’s obvious and immediately life threatening condition can be ignored in one of the leading hospitals in the country shows the risk we face as patients of a chronic but not “immediately life threatening condition”. We must, as sufferers of chronic AD, assertively and relentlessly advocate for ourselves. We also must maintain a healthy level of skepticism to the “experts” and not allow ourselves to be dismissed. If you’re not getting the care you need, do not allow yourself to be ignored.
While our situation is of course not as immediately life threatening as Martha’s, the long term effects of chronic AD can be catastrophic and all encompassing both physically and mentally. The “squeaky wheel” approach is the most simple way to explain how you must approach the NHS. The NHS is stretched to breaking point and resources towards certain patients and conditions are naturally prioritised. When the GP asks how you are, the answer is not “yeah not too bad”, you must explain in as much detail the depths to which you’re suffering, both physically and mentally. I would also recommend bringing notes and photos.
Skin conditions are on a spectrum and on one end we have what around 1 in 2 people will experience; a small rash and some discomfort. On the other end we have the chronic condition; constant mind bending itch, night after night of broken sleep, waking up to bed sheets covered in blood, the psychological toll of facing what can be a very harsh world. Yet it does often feel as though the latter is treated with the same level of care as the former.
If you’re a person of colour an issue you may face is that on a darker skin tone your AD can look less visible/dramatic and not truly reflect visually how much you’re suffering. Also for parents, a common narrative is that your child is just suffering from “childhood eczema” and will grow out of it. Whether or not that is the case, the fact of the matter is your child is suffering right now.
Martha Mills legacy is Martha’s rule which gives patients, guardians and staff round the clock access to a second opinion from a third party, this is starting to be rolled out this year. This is certainly a move in the right direction and I believe will significantly improve patient safety.
Educate yourself as much as you can to better request the treatment and plan you think is the best way forward. You deserve appropriate care for what you are suffering with, do not let yourself be brushed aside.
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