Hello! Regular readers of the blog may recall that over the past 4 years (yes 4!) Fran has been working her way around the NHS in various ways in the search for an improvement to her day to day life. Let me rewind a little dear reader so I can give you an overview.
Four years ago Fran had a fall and unfortunately broke her foot. She was then taken to Accident and Emergency. Rather than waiting, the usual ‘patch and mend’ approach was taken at A&E to put Fran’s foot in a cast. However. As someone with Cerebral Palsy, Fran’s body doesn’t fit the standard presentation or course of action, or react in the same way to treatment in a way that is typical.
In a conventional situation, a cast is a response to a bone break, to both ensure it is immobile and/or to correct the position of a broken bone. As Fran was in significant discomfort, the quick decision was taken to put the foot in a cast.
The problem with this was that the foot was cast in an inward position, which caused ligament damage. What should have happened in this situation is for the medical professionals involved to recognise the particular nature of Fran’s circumstances, have a specialist called and leave well alone.
So work was needed to correct the original ligament damage and the pain caused as a result. This has taken literally three and a half years as various people have tried to find some sort of solution that improved things. Fran has lost the little mobility she had before the fall, and we had to very quickly move house as a result of what happened.
It has been four very hard years with a lot of lows along the way. During this time Fran has had some awful experiences and lost a lot of confidence and faith in the medical professionals she has seen, to the point where she now asks me to go with her to make sure she is listened to. That it requires me to go with Fran at all is a damning reflection on some of the encounters she has had.
Fast forward to last week. We had finally seen someone who ‘got it’ – someone who took the time to listen to Fran, to get to know her, see her and work with her. You see, because of the Cerebral Palsy, a lot of the standard medical ways of dealing with things simply don’t work.
Fran also has a very detailed understanding of the way her body works, and what her impairment means. In this sense, she is the expert, and will always be uniquely placed to understand what is likely to work. In this sense, Fran needs to be an active participant in her treatment and work with the medical professionals together to find what is often a pragmatic solution.
I highlight and italicize the above words as this is exactly what happened in our previous appointment. I will keep doing so in order to highlight the good practice in what was, for me, was the best appointment we have had during these difficult four years.
Firstly, the doctor came out to greet us and had clearly read Fran’s notes to remind himself of the case and where we were up to. In the previous appointment he had seen the whole picture and taken a holistic decision to pause proposed treatment, allowing us time to take a much needed holiday which did Fran’s body a lot of good.
During a wide ranging discussion in which Fran was listened to and given the time and space to express her views we jointly discussed treatment options and the relative merits of them. This led to an improved decision which aims to maximise the beneficial impact of treatment as a result of a collective discussion and Fran’s views being heard.
In the appointment, Fran’s background and circumstances were included in the notes for the benefit of future people that may see her and a copy of the notes sent to Fran shortly after the appointment. The bold highlighted elements may seem like obvious things but are those which stood out because of the number of appointments where Fran had not been heard.
Fran and I came away from this appointment feeling elated and with faith and trust in the person we are working with and feeling more optimistic about the future. The proposed course of action will mean a long few months, but hopefully ones which will see an improvement. In words that left me with a huge lump in my throat after the appointment, Fran exclaimed ‘they saw me, they saw me!’
Above all, my key messages about working with someone who has an impairment are:
- See them as a whole person. Don’t just see the impairment. Take the time to get to know them and see all the aspects of their life.
- Understand that in relation to their impairment they will often be the expert, and that in order to get the best outcome, you will need to work with them.
Seeing a patient, not the impairment shouldn’t be that hard, or that novel, should it?
