#WMTY Day 2022. What matters to me….
So I work for the NHS and I’m a patient. So as it’s #WMTY2022 today I thought I would share some of what matters to me in health. As a staff member with a disability/long term condition and obviously as a patient
As a staff member - what matters is not people trying to empathise, or to put themselves in my shoes or even to understandl. Just to Listen, to trust that I know what is needed and to help me put in action the things that I need to work effectively (where reasonable).
Particularly as a staff member with a disability, and even as a patient, it matters that staff stay away from the stereotypical "do you think you should..." "you aren't looking after yourself" or other such statements that in a way make it feel as if I and other staff are at fault when we are unwell, as if in a way as to blame for something that happens due to a relapse.
So my biggest WMTY come as a patient which weirdly I have never been asked so perhaps there is a way they can be passed on:
When in hospital:
To have food that I can eat which reflects the needs of my conditions and what I can, and want to eat.
To have access to a space which is quiet/sensory based so I can escape the stresses of the main wards.
To be asked what I want to be called and be called that. Having been called "momma" and "auntie" by nurses in a hospital when I am not their aunt or momma (and even more upsetting as I can't have kids) I found it very strange. But even things such as not shortening my name unless being asked - names matter, what you are called matter. Again don't assume.
To be treated as an individual with thoughts and feelings - not to have assumptions made based on how I'm dressed, or how something looks, without looking at records to see that perhaps I may have one or more conditions . We need to move away from the "but you don't look....." or the “bit your condition isn’t textbook”. Show me the patient who is textbook?!
To be listened to. Again not judgements but people listening and being solutions focussed. Compromise is always achievable. If I'm trying to say why I'm feeling a certain way then listen and have a conversation. Don't just blank and walk away.
Understand that there are cultural differences - don’t assume from the way I look that there aren’t any. I am white, but also Welsh. We have a very different culture. Food is different, words are used differently, phrases are different. We must appreciate all cultural differences - and that includes between home nations. That also means we might not have full understanding or context to what people may be saying. We also need to appreciate this increases issues with the way notes are transferred, prescriptions are ordered and/or paid for.
If we are asking for preferences such as for DNR then we should ask it of all patients, not just a selected few based on age or perceived condition. I have very strong views, I have never been asked them. This frustrates me and worries me what might happen if something happened
You don’t need to understand my preferences, in terms of who my emergency contacts are, I have reasons as to who is contacted and when. It may not be a close family member: you don’t know my circumstances so it is sometimes better, as I work in London but live in wales, to contact a friend. Or no one at all - I don’t want my eleeelt parents driving to see me for no reason - if I’m in hospital and safe I will contact them when I am ready - let’s be honest my phone is permanently attached.
Don’t give me choices about things I don’t actually have a choice about (ie certain medications - clinicians are more qualified so please make that decision) but involve me in decisions I can make.
Please can we have patient passports for those of us with neurodiversity and/or different learning styles which don’t look like they are aimed at a 5 year old. The issue is - I can cope in the normal world until I’m unwell then I can no longer to apparat non-ASD etc. but I don’t feel comfortable filling in something that has lots of pictures and words such as “I like yo eat….” - please prompt with questions but with space that I can explain for how I am. : what is wrong with “do you have any preferences in relation to food and mealtimes”
Please can trust opt or promote one app by which records can be looked up or viewed by emergency services. If I’m taken in unwell I can’t even say my name or DOB - now I use SOS QR - which leave a QR code on my phone so that emergency or NHS services cannot acces by scanning and links to an app with which I can enter details they might need - name, address, NHS number, medication etc. trouble is people don’t know about it - if nationally or as trusts in an area we could could either come up with our own or promote one app such as this so everyone knows to look for it it would really help and actually improve my safety as a patient.
As an outpatient:
To be able to have information sent digitally - a choice given and stuck to. Not some letters, some telephone calls and some digital even though have always asked for digital.
To understand who to contact and when. When do you contact a consultant, how do you contact a consultant...there are no clear rules as what to do when.
When I contact secretaries or outpatients asking questions at least to have the enquiry acknowledged - not hear nothing for weeks/months if at all. We could at least send an auto reply so people know their contact has been received.