In the last few months of his life, our son George was at home and completely bed-ridden. A combination of tumour pain, deep vein thrombosis and weakness meant that he was barely able to move, even in bed. Inevitably this led to the development of pressure sores - also known as bed sores - on his lower back. Of all the symptoms that he suffered, this was the worst. The pain was unbearable, intense and barely touched by the wide range of pain killers he was prescribed by the palliative care team. For us, this was the most difficult thing to deal with. Nothing we could do seemed to make a difference. The pressure sores were treated with topical drugs (including morphine), as well as high doses of oxycodone and other opiates. We were told that the sores would not recover, that more were likely to develop and that they would become progressively worse.
In desperation we researched as much as we could and very early on came across lots of positive reports about honey, especially Manuka honey. I downloaded a number of medical papers and clinical trial reports and passed these to our local nursing team. They in turn handed them to a specialist back at our local hospital but nothing happened. The preferred solution was to up the drug doses, even though these made George even more sleepy and therefore less able to move and more likely to make the situation worse. The sores deepened, as did George’s level of distress. I sent papers to whoever I could but they were received with frank scepticism.
Tina Martins, from the charity Starthrowers, offered some good advice when she visited, including a recommendation for a lambs-wool fleece for George to lie on. I have to admit that I was a bit sceptical on this one myself, but ordered one immediately. The effect was instant. The level of pain dropped considerably, by much more than any of the pain killers had managed to achieve. It was bearable again, after a period where it had been anything but that. It was astounding that something so simple, so low-tech, could make such a difference, but it did. The nursing team were also surprised by the difference that the fleece made.
However, the pain didn’t disappear completely, and the sores were not healing up. Furthermore there were new sores starting on his shoulders, threatening to make things unbearable again. In the end, unable to watch our son suffering any more, I ordered some medical grade Manuka honey over the internet. When it arrived I called the nursing team and begged that they come out and apply the honey to George’s wounds. Thankfully our nurses took the chance and applied the honey, packed in a soft dressing. The dressings were changed every couple of days, and the improvement was apparent after a few changes. Not only did the sores stop getting worse, they started to heal, something we had been led to believe was very unlikely while George was still so immobile. What’s more, our nurses (and palliative care consultant), were impressed. It then turned out that honey impregnated dressings are actually available on the NHS, and that they come in a range of sizes and styles. When these were prescribed the job of changing them became much more straightforward.
A change of bed also helped, but to be honest George was convinced that it was the fleece and the honey that made the most difference. We agree, we could see what a difference the fleece and the honey made, so much so that when George’s mattress was replaced with a memory-foam/air mattress, he insisted on keeping the fleece and the honey dressings.
I mention all of this now because we have just heard from the paediatric palliative care consultant at the Royal Marsden that they are now using the honey dressings on other patients. This was a direct result of what they had seen working with George. It’s not much of a consolation, but it is good news, and we know that George would have been pleased to have been leading the way.
In some small way, it’s also an example of a positive change that patients and their families can achieve if they put their minds to it.