Why Words Matter
Words can be soothing, powerful and strong. Words can help ease pain and suffering. Words can explain the why's of the world, ask questions of the world. Words can annoy, words can destroy, but ultimately, words can and do lead to changes within our world.
I began sending words to our department of health in 2015/2016 and when a new minister took over, I passed my mantle on to him as I directed my badgering words at him.
The letters were always the same. When will ME patients in Ireland be treated as they deserve to be?
Then, in July of 2018 I learnt about the failed treatment by our HSE of patient Christine Fenton and an investigation report which recommended a working group be set up so as to implement three changes within the HSE:
10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME. It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.
12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers. To develop this guidance document, a working group to include relevant stakeholders should be established.
8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs. Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately & adequately assess their needs. There should be uniformity in the assessment models used in each community health area.
And so my question changed. I began asking bluntly, sometimes daily, when the recommended working group would be set up.
In April of this year, the minister for health sent me forward to the HSE where my question was finally answered.
I can't share the workings of the group as they are confidential but thanks to Christine, some information relating to the working group has been made public and can be viewed here.
As I said, words can and do lead to change. Thanks to Christine Fenton and her perseverance there is hope change is set to occur within our health system.