As I mentioned in my previous post, I recently wrote a letter to my health authority to highlight some of my concerns, and it turns out that letters do still have an impact.
The first reply I received was more of an automated defensive response to a complaint, which was not the aim of my letter, so I did feel a little disheartened. However, the next week I received a proper answer that addressed my issues more fully. The letter went through my questions in greater detail and gave me some reassurance that things are being done. Further to this, I found out that my letter has been discussed in a number of meetings between staff looking to implement more complete care plans for people with similar complex needs to mine and create easier pathways for hospital admissions. How much of a difference this will make is unclear, but it is nice to know that my letter got people talking and thinking about ways to improve patients care.
Since November, I have been to a meeting to talk about my own hospital experience and discuss ideas for ways to improve facilities in hospital for hoisting and toileting for people with disabilities like Duchenne. Again I do not know how much my input will contribute or lead to change, but it was refreshing to hear that people do want to improve services and respond to constructive feedback. I have also received a pack containing more detailed information about my condition that I could take with me should I ever be hospitalised that is also very useful.
Initially I thought that writing a letter would be a waste of time which is why I didn’t finish it for a few months. However, it did get hospital staff to look into and address things that could benefit many patients. Therefore I would say that if you do have concerns or ideas about your care from your healthboard, do raise them by writing letters or by other methods because you can make a difference.