A new support pack for anyone with ME/CFS going to hospital (MEA)

Should we have a new thread for the Reasonable Adjustments Digital Flag?

 

There is already one - started in June (which I wasn't aware of when I posted links to the RADF in this thread):

https://www.s4me.info/threads/united-kingdom-nhs-reasonable-adjustments-digital-flag.39214/

 

Regarding the Reasonable Adjustments Digital Flag, I see there is little opportunity for nuance, fluctuating needs, or needs that are only relevant in certain environments. This makes sense in order to keep it simple and easy to use, but I wonder how my consultation would go with a doctor who see's 'has light sensitivity' on my record, and finds me coping just fine with the light in the waiting room on a day where my light sensitivity is not a problem. It appears that detail can be added to the coded adjustment, but people may not read that detail.

It would take me time to decide how to complete this so that it was relevant to different environments, at different times, and in a way that didn't potentially expose me problems arising from stigma. I may ask to have the disability status recorded ("Impairment with substantial and long-term adverse effect on normal day to day activity (Equality Act 2010)") and perhaps the 'stamina..fatigue', 'mobility' and 'other' boxes checked and leave it at that so that conversations about the particulars can be had as needed.

 

Oh yes, having just had de ja vu I realise that I shared the link to that just a few hours ago

 

Yes, I can see that lack of nuance and fluctuating needs could be problematic.

Incidentally, although hospital clinic staff are supposed to be identifying patients who require adjustments there was no reference made to the RADF, by name, that I can recall, at my son's pre-assessment at the beginning of October; nor on the lengthy medical history forms* he was asked to complete while he was waiting to be seen.

*Which included two pages of detailed questions on alcohol use and its impact on the patient's behaviour.

 

It has been rolled out to people with learning and disabilities and autism across the country through quite a significant programme of work, I gather plans to implement it more widely should follow (in theory).

 

To covey variability of symptoms and needs and the relevance of the context (GP appointment, inpatient etc.), columns could allow you to tick whether the adjustment need applies always, sometimes depending on symptom fluctuation and context, or always. This would probably be too much detail for the Reasonable Adjustment Digital Flag record but could be useful for one’s own planning or could be shared directly with a specific healthcare team as needed.

Keeping the overall non-specific list of adjustments relevant to all conditions is useful for people who have multiple conditions that cause a need for adjustments, and means that you don’t have to disclose a particular condition.

There is a risk that when presented with a menu, people tick adjustments that would make their experience better, but are not necessary in order for their experience to be “as easy as a person without a disability to use services”, and not due to their disability / long term disabling condition(s). I think it is up to the individual to decide what they ask for and to have the conversation with the service provider, but any guide or tool should define “reasonable adjustment” for the reader.

 

I have severe me and needed surgery three years ago. I had an A4 sheet with 12 bullet points which my sister discussed with the admitting nurse, the information was then loaded on the computer so that the ward had direct access to it.

Unfortunately the first operation was not successful which meant I needed further tests before a second operation but the surgeon was agreeable to space out the tests.