Wellness Recovery Action Plan, as recommended by BACME, UK

Robert 1973

Senior Member (Voting Rights)
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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Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)
A wellness recovery action plan? Why didn’t I think of that 32 years ago? I’ll get started tonight.
 
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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​/
 
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:

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.

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...
 
I've been exploring some of the current BACME guides, all of which have been updated or written since NICE 2021. Of particular relevance to this project:

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

This includes template care plans for adults and for children. I have only looked at the adult one on pages 14 to 22

It is recommended that the care plan be accessed online by both clinicians and patient in advance of consultations and reviews so the patient can fill in in advance.

Sections include:

name and interests

family and carers

medical history

symptoms: A detailed section on a large and detailed range of symptoms, including PEM, each with yes/no, scale 1 to 10 for how much it affected you over the last month, and tick box for whether the symptom affects level of activity.

boxes for the pwME to list things that make their symptoms better and worse in their own words,

a list of activities of daily living and mobility, with boxes beside each for the pwME to write in 'help in need and now often' for each.

Then there are boxes that the pwME can fill in headed:
My health and well-being goals and aspirations
My information needs - What would you like to know and how would you like to receive information to support you.
Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)
Managing flare ups or setbacks (Specific actions to take when I experience worsening of my symptoms)
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My comment:

As far as I can see this is a suitable way of collecting all the information that this MEA project is designing PROMs for, but is specifically designed purely for assisting pwME and clinician to communicate in a way accessible to both online so it can provide a ready summary of information that should help focus the consultation. It has the big advantage over the PROMs being designed in this project that it is openly available at any time online for both patient and clinician to fill in, and does not attempt to serve the dual purpose of service evaluation or to provide any statistics.

I see no reason that makes sense to me for the MEA to have funded an alternative, and from what I've seen so far, inferior version of information gathering in the form of PROMs. for what is already available from BACME. Why would the MEA spend £90,000 reinventing the wheel, if, as they claim, the main purpose is to help in clinical care.
________________________

Perhaps the answer comes in the second BACME document I've looked at:

BACME severe ME/CFS guide it says on pages 42 to 43:
https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf

Quote:

Section 6: Outcome measures


6.1 Why use outcome measures?

• As a therapeutic tool, to allow therapist and patient to track and reflect back on any improvements in the individual’s recovery process
• To evaluate the benefits of service input, for example, to produce data to feed back to commissioners
• To generate health economic data to inform decision makers within the NHS
• To provide evidence to funders

It is important to recognise that completing questionnaires can take a lot of mental effort for a patient who might be only able to tolerate a few minutes conversation at one time or who may have 'brain fog' which makes reading and writing difficult. Nevertheless, for the reasons given above, we suggest that all services should consider incorporating basic outcome measures into their work with severely affected patients wherever possible.

Outcomes may be recorded by patients themselves (Patient reported outcome measure - PROM) or by Clinicians (Clinician reported outcome measure - CROM), though the latter can be carried out with the patient.

6.2 PROM (Patient reported outcome measure)

The BACME 2023 National Services Survey shows that there is a wide range of outcome measures being used in specialist services. Many services continued using tools included in the National Outcomes Database established in 2006, despite this central collection of data no longer being operational.

Commonly used measures include:

SF36 Chalder Fatigue Scale
Pain severity measure
Clinical Global Impression Scale (CGI)
Hospital Anxiety and Depression Scale (HADS)
pHQ9 Depression Questionnaire
EQ5D 5L Self-efficacy measure

BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services.

My bolding. End of quote
__________________________

The MEA announcement of this project quotes Sarah Tyson:
https://meassociation.org.uk/2023/0...nt-toolkit-in-nhs-me-cfs-specialist-services/
ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services
May 8, 2023

“I am delighted to have received this grant from the ME Association and look forward to working with the team, with people with ME/CFS, and with clinicians to co-produce a clinical assessment toolkit.

“The tools will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.”
___________________________

I hope someone from the MEA can clarify this, because I think we've been misled.
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.
 
Actions agreed with my healthcare practitioner (Option to Include a Wellness Recovery Action Plan example from North Staffordshire Combined Healthcare NHS Trust)

In this context, where the vast bulk of the power resides with the clinician, 'agreed' is a very problematic term.

And 'Wellness Recovery Action Plan' is no better.

They are making it crystal clear with this kind of framing that they don't get it and don't want to.
 
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.
 
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
All of which proves that they just don't get it at all.
 
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 .
 
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.
 
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”
 
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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!
 
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