Wellness Recovery Action Plan, as recommended by BACME, UK

This post has been copied and discussion moved from this thread where it was off topic.
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
The Wellness Recovery Action Plan is recommended as part of the BACME care plan document:
The BACME ME/CFS Care and Support Plan Guidance, December 2022
https://bacme.info/wp-content/uploads/2022/12/BACME-Care-and-Support-Plan-Guidance-Dec22.pdf
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A wellness recovery action plan? Why didn’t I think of that 32 years ago? I’ll get started tonight.

 

Wellness Recovery Action Plan seems to be specifically a mental health management thing:

"Wellness Recovery Action Plan (WRAP) was created by Mary Ellen Copeland, an author, educator and mental health recovery advocate in the USA.
[...]
WRAP has five key principles:

1. Hope: people who experience mental health difficulties get well, stay well and go on to meet their life dreams and goals.

2. Personal responsibility: it’s up to you, with the assistance of others, to take action and do what needs to be done to keep yourself well.

3. Education: learning all you can about what you are experiencing so you can make good decisions about all aspects of your life.

4. Self advocacy: effectively reaching out to others so that you can get what it is that you need, want and deserve to support your wellness and recovery.

5. Support: while working toward your wellness is up to you, receiving support from others, and giving support to others, will help you feel better and enhance the quality of your life."
​

One of the downloadable resources from that page starts by describing WRAP as "A system for monitoring, reducing and eliminating uncomfortable or dangerous physical symptoms and emotional feelings."
https://www.combined.nhs.uk/person-centredness-framework/wellness-recovery-action-plans-wrap​/

 

I was reading this and thinking that it is actually a helpful idea, as someone who lives with PTSD and other MH issues from the multiple things that caused my ME. Right up until this point:

as this would include remembering to take any medication...oh, wait! Can't take pain meds or antidepressants as my ME has made me unable to tolerate them (which medics constantly note as "patient chooses not take") and there IS no medication for ME so this is all moot. as I can't take the actions and do what I need to, to keep myself well because I have borderline severe ME.

How is is possible to keep trying to bolt rehab and self management idea onto something non existent?! until there is a biomedical treatment this is trying to make a silk purse out of a sow's ear.

we need care plans so we can monitor symptoms, but it is a total energy suck until the conversation with my doctor has more substance than "I feel rubbish and my life is really limited" and their reply is more than "Yes, you've got ME and there is nothing we can do". Deckchairs and titanic comes to mind...

 

WRAP advocates exercise, alongside lots of things pwME can’t do like talking to someone (sarcasm! I often can’t talk)
It’s very much not specific to ME, I thought NICE 2021 had guidance that clinicians aren’t supposed to recommend standard courses/treatments that don’t take ME into account?

Whilst there is some useful stuff in WRAP in general, for anyone I guess, it’s quite obviously written for people with Mental Health issues. I’m actually furious that they thought it was appropriate.

 

I just use a wellness wheel. I’ve changed a few of the topics a bit.

 

This is the contents list for the WRAP - it’s basically a workbook for the patient to fill in.
Bold is my emphasis, the more unhelpful sections IMO


Contents Page



Section 1 Things that keep me well

Feeling well – what I’m like when I am well 8-9

Daily List – things I need to do each day 10-11

Weekly Timetable / Plan 12

Reminder List – things to do regularly 13-14

Appointments - I need to attend 15-16

Questions – I would like to ask 17

Budgeting – my finances 18-19

Goals – I would like to work towards 20-21

Goals – I have achieved 22-23

Moving Forwards 24-25



Section 2 Things that I find stressful 26-27

What stresses me? 28-29

Things that I can do if I become stressed 30-31



Section 3 Early Warning Signs 32-33

My early warning signs 34-35

What to do if these signs appear 36-37



Section 4 Becoming Unwell 38-39

Recognising when I become unwell 40-41

Things I need to do at this time 42-43



Section 5 When More Support is Needed 44-47

Recognising when I am in a crisis 48-49

Planning for my care 50-51

Tasks that I would like to be done for me 52

Medication – past and present 53

Support, treatments and therapies 54

Recognising when I begin to recover 55

Reviewing my WRAP plan 56

Wellness Toolbox 58-59

Telephone numbers and web-sites 60

 

I'd be quite prepared to write Is This For Real? in some of them.

Obviously I'd put in something exceptionally rude first, but in the interest of avoiding a diagnosis of functional swearing-like-a-docker disorder, I'd probably edit it.


ETA: Actually, I'd probably fill the whole thing in with emojis.

 

“Just pick out the bits you can eat” my life as a vegetarian who always gets served meat
“Just pick out the bits you need” my life with ME in an NHS of generalised advice

 

This is the nub of the problem .
Nothing is being done to challenge and replace , even with the guidelines change .
Harm is being perpetuated , probably by professionals feeling that they are truly being helpful.

What is the process to change this - if it's not changed it becomes embedded .

 

Yes, I wonder if it might be worth having a go at editing existing documents, and pointing up the areas that are problematic, lack evidence, etc.

Whether anyone would actually take any notice is another question, though.

 

My MH care coordinator navigator person did one of these on the phone with me over a long session that really exhausted me and I never got back. She was either surprised or just being patronising congratulatory when I had so much to say I was doing already to deal with my MH including meditations, breathing exercises etc., I think it can be too easily used as a cop out - worker thinks you aren't doing everything you can do to help yourself so makes you prove that you are, and when you successfully do, your reward is the evidence you gave.

 

Yes - a bit like the deflated look of a new Dr when they ask if I’ve had my vit D levels checked? and I point out I take it daily, have done for a decade.

And again it’s a big old piece of work, that workbook. Why would you think that’s useful for someone with fatigue?

We need to raise it with BACME? They’re signposting it as “may be useful”

 

Well it MAY be useful...but certainly not for everyone!

 

Yes well my cat may be useful.

 

I’m trying to imagine other Clinician groups creating guidance with the option to include WRAP

How might the public/patients react? If you “offered’ it to

MS patients
Cancer patients
Lupus patients
HIV+ patients

 

I'm going to borrow that phrase!

 

You made me snort!