ME Association Quick Survey Nov 18: Do you have a healthcare plan that is consulted, adhered to and kept up to date...?

Full question: Do you have a healthcare plan that is consulted, adhered to and kept up to date every time you see a healthcare professional?

Available answer options:

• Yes - fully in place from a GP
• Yes - partly in place from a GP
• Yes - fully in place from hospital ME/CFS service
• Yes - partly in place from hospital ME/CFS service
• Yes - from a private doctor
• No - never asked
• No - asked but refused
• Not sure
• Do not have any contact with doctors

Survey available at https://www.meassociation.org.uk/, middle of the three columns towards the bottom of the page (i.e. scroll down to get to it).

MEA Facebook page post on it.

Code:

https://www.facebook.com/meassociation/posts/1968478716543110

 

I had come to the conclusion I needed to address this issue with my GP especially as my GP's practice does not seem well able to deal the situation adequately when I am not able to attend the surgery.

Unfortunately as I was drafting suggestions for some form of care plan, I have found out my GP is about to retire.

I do not know the other doctors in the practice, so will have to wait to see what happens.

 

I used to do my best to adhere to my treatment plan, hoping it would improve my health. That is, until a doctor-prescribed treatment plan turned my mild/moderate ME into longterm severe ME.

 

I would choose "No - never asked" .

The thing is though, given the current NICE guidelines I don't want one.

I spend my rare GP appointments perched on a high tightrope. On the one hand minimizing symptoms so they won't decide to try to ship me off to a clinic that best case will just waste what energy I have, on the other trying to give them just enough information so that they can do their job and take it seriously.

I never really discuss ME with them much anyway. It's not like there's a whole lot they can/will do.

 

I'm not even sure what a healthcare plan would look like, my GP and I both agreed that currently they have nothing really in the way of treatment to offer me.

 

Well, that really rather depends on the GP, I think. In an ideal world you could get in touch if you got a new symptom or one became much worse and have it addressed, but with the roll out of IAPT it could give them just the excuse for a referral.

I know I am taking the negative stance here, but I'd rather be cautious. It's such a kick in the guts when you go in expecting to be treated with respect and taken seriously only to find yourself being treated as though you aren't actually ill.

 

I think that would be wonderful and should be available to everyone. One of the things that worries me about some advocacy efforts is that sometimes people ask for more treatment and access. I worry this is open to, and has been misinterpreted, as wanting more of the same.

It feels nitpicky, but while the BPS remain so powerful it seems anything you say can and will be twisted and used against you.

 

Me too. A 'care' plan for someone with ME can soon turn sinister. Better to fly under the radar at the moment iyam.

Dont want them thinking 'if it's that bad we'd better do something".... knowing that the only things they can do are more ineffective & harmful CBT/GET......... so i'd rather present as 'not too bad thank you'.

 

I only really go if there’s something they can fix (piles etc). I did try once and suggested we review my symptoms periodically, but when I started the doc just said, “so do you want me to refer you back to the CFS clinic”. When I explained that the clinic had told me that there was nothing more they could do and that I was thinking of another specialist (it was for OI symptoms), he just kept repeating this until he said that the appointment was over and that next time I should book an appointment with a different doctor X. When I looked on the surgery website, doctor X is the one that specialises in anxiety and depression . This is strange since my records have the assessments that show that I have neither.

I put ‘no never asked”, mainly since they seem unlikely to provide one.

 

I'm so sorry to hear this

 

My GP: "well they haven't really figured it out yet".

 

Who would be in favour of starting a thread reserved only for treatments that have harmed pwME and made them worse?

It's a serious issue, and although we can't change the damage that has been done, we can hopefully inform new patients of the negative effects of long term antibiotics, long term antivirals etc.

 

The snag with that, given the current scenario, is that almost any treatment may have harmed patients.

In the same way that you will nearly always find someone who will claim any treatment has helped.

When seeking opinions I think it's certainly worth getting both positive and negative feedback.

Edited - hit the reply button too soon - twice