#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

Trish said:
I think it's a lot more than lack of energy that prevents attending appointments. Symptoms can make it difficult or impossible, such as OI.
And I'm not too bothered about getting empathy so long as the clinician is knowledgeable, listens and acts professionally.
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“Lack of energy” to make/attend appointments seems really odd to me.

Making an appointment isn’t that difficult, whereas getting an appointment is a different matter which, yes, I mentally and emotionally find hard. Not due to lack of energy as such, but that the energy cost is too great (aka it will be a fiasco which may not even yield a result)

Travelling to an appointment - ok so my symptoms can make that impossible which is technically a lack of energy but also heightened pain, discomfort and again possible waste of time which may not yield any useful result, and followed by PEM, pain, cancellation of “nice” and “essential” activities for days after.
The travel time being more than 30 mins, each way is an issue.

I just feel “lack of energy” is poor wording. Wouldn’t we say”due to fatigue”?
lack of energy makes me think of being so weak you can’t make a phone call or log on to book an appointment.
I’m not too weak to make a call or log online (I appreciate some people are) however I’m adept enough at managing myself/pacing to know to weigh up whether its in my best interests to do so, because of previous bad experiences.
 
The gatekeeping done by most NHS services is absolutely ludicrous. And the barrier which stops me before I even reach a medical professional.

And yes lack of energy is daft. When I was first ill and up to getting to the surgery it was a huge effort with some impact, maybe thst could have been confused for energy. Then it became an ordeal and I’d end up half collapsed in the waiting room and in a mess for ages after (one getting sent to hospital onky to be told there was nothing wrong with me). Mow for most of decade I’ve been housebound and largely in one room because getting to another has the same huge negative impact as those trips once did. It’s not energy it’s inability and most importantly that negative impact. I find these campaigns so often completely underestimate the more severe end of moderate and beyond.

I think there’s some other useful stuff in there though even if it gets some aspects wrong or underestimates them.
 
I am very lucky to have a kind and helpful GP. She phones me every 3 months and if I need to see a GP she will come and visit me at home. I can get to the surgery if my 79 year old mum drives me in her WAV but my GP understands that my infrequent trips out to spend time in nature are hugely important for my mental well-being, and that if I have to go to the GP surgery that is one fewer time that I am able to go somewhere nice. She also understands that I need to try to organise my life for when my mum is no longer able to care for me.

However, I have experienced unhelpful GPs in the past and I sympathise with the issues others describe.
 
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