Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

I have just sent the following letter to AfME, signed by 15 forum members, including the 5 available committee members

To discuss the document and AfME's promotion of it, go to this thread:
https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/

_____________________

To Sonya Chowdhury, Action for ME Chief Executive
and Roger Siddle, Chair of Trustees of Action for ME.

Dear Sonya Chowdhury and Roger Siddle,

We are writing to you to raise serious concerns about a document you are currently promoting and to urge you to withdraw it immediately. We also raise wider concerns.
Care and Support Plan template free to download

This letter is the result of discussion on the Science for ME forum:
https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/

Concerns about the content of the document - a summary

1. The content of the document is not NICE compliant, for reasons which we explain in more detail below.

2. The document does not follow or comply with the NICE section on writing a care and support plan.

3. The document is not a care and support plan, being neither informed by a clinical consultation, nor providing planned actions to implement care and support by any named individual or organisation.

4. It includes misinformation about aetiology which is both unnecessary in a care plan and misleading

5. The sections on activities and limitations is both too long and inadequate.

6. It includes unevidenced and harmful recommendations of pacing-up, and unhelpful strategies for pacing.

7. The document shows little understanding of key concepts and definitions in ME/CFS, including PEM, pacing, and the cumulative effect of multiple exertions.

8. The document misuses diaries, plans, timetables and rating of individual activities
__________________

Concerns about Action for ME's close ties to the Bristol clinic and dependence on Peter Gladwell for advising and/or writing Action for ME materials

It is clear that this and other materials provided by Action for ME are heavily influenced by Peter Gladwell's views and the approach used in the clinic, which appears, on the evidence of this and other documents, not to be a NICE compliant provision with doctor led services. Rather it seems they use the old rehabilitation model of therapist led provision only accessible to milder pwME and using a version of GET called pacing-up.

Until clinicians and clinics fully comply with NICE NG206, with doctor led services, catering for all severity levels, and with energy management based on staying within the pwME's limits where possible, and proper understanding of PEM, the ME/CFS charities have a responsibility to pwME to lead the way in educating clinicians and clinics, not the other way around.

Concerns about selection of patient advisory groups

We are also concerned that Peter Gladwell relies too heavily on patients recently diagnosed and 'treated' in his own clinic as the patient advisory group and in his research.

This has implications that should be obvious. Only mildly affected patients are able to attend a clinic in the first place, and most are likely to be recently diagnosed. People who are neither experienced in managing an illness nor educated about the nature of evidence may be especially vulnerable to misinformation and manipulation. They need charities like AfME to advise and advocate for them, not to collude with Peter Gladwell in misusing their goodwill to perpetuate his own ideas about ME/CFS.

Meaningful consultation about something affecting an entire patient group must involve a cross section of them, representing different ages, backgrounds, and experience of living with the condition. Invitation to participate cannot be restricted to one group treated by one therapist.

That is not meaningful patient consultation and should not be used by AfME to promote the resulting materials. We do not blame the patients who participated in this project, rather we criticise Peter Gladwell for misusing their goodwill to perpetuate his own ideas about ME/CFS.

Concerns about the purpose of this document

The aim seems to be to provide pwME with a document they write themselves that they can hand to their clinicians. GPs do not have time to read such lengthy documents, and other organisations such as benefits agencies, schools, and employers have their own processes. The only use for it we can see is to enable a therapist to tick the box saying their patient has a care plan.

According to Nice, a care and support plan should be an outcome following a consultation. Neither the NHS nor the social care system expects people to write their own care plans; instead, a consultation or assessment is carried out with the specific aim of agreeing a plan. It would be inappropriate and unprofessional to do otherwise.

Concerns about AfME's feedback survey
The survey questions only allow for praise, and additional suggestions, they do not allow for critical comment about the content or purpose of the document. This survey design is manipulative and unworthy of AfME.
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Concerns about the content of the document - more details:

1. The content of the document is not NICE compliant

This letter follows concerns raised by forum members here:
https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/
We have summarised some of the points raised in this letter.

2. The document does not follow or comply with the NICE section on writing a care and support plan

Here is what NICE says about the content of care and support plans. Note that part 1.5.1 is about assessment by a doctor, the outcome of which is expected to inform the development of the care plan. It does not say the assessment is part of the care plan, or that symptom lists should be included in the care and support plan.

1.5 Assessment and care and support planning by an ME/CFS specialist team

1.5.1
Carry out and record a holistic assessment to confirm the person's diagnosis of ME/CFS and inform their care and support plan. This should include:

• a medical assessment (including relevant symptoms and history, comorbidities, overall physical and mental health, anything that is known to exacerbate or alleviate symptoms, and sleep quality)
• physical functioning
• the impact of symptoms on psychological, emotional and social wellbeing
• current and past experiences of medicines (including tolerance and sensitivities), vitamins and mineral supplements
• dietary assessment (including weight history before and after their diagnosis of ME/CFS, use of restrictive and alternative diets, and access to shopping and cooking).

It is the next part that spells out what should be in the care and support plan. Note that it reiterates that this is to be informed by, not that it should include a record of 1.5.1. The clinician will keep a record of the consultation, and may provide the pwME with a copy of that record, but it is not intended to be part of the care and support plan:

1.5.2
Develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers (as appropriate) informed by their holistic assessment. Include the following, depending on the person's needs:

• information and support needs (see the section on information and support)
• support for activities of daily living (see the section on access to care and support and recommendation 1.6.8 on accessing social care)
• mobility and daily living aids and adaptations to increase or maintain independence (see the recommendations on aids and adaptations)
• education, training or employment support needs (see the section on supporting people with ME/CFS in work, education and training)
• self-management strategies, including energy management (see the recommendations on energy management)
• physical functioning and mobility (see the recommendations on physical functioning and mobility)
• managing ME/CFS and symptom management, including medicines management (see recommendations 1.12.1 to 1.12.26 on managing symptoms)
• guidance on managing flare-ups and relapses (see the section on managing flare-ups in symptoms and relapses)
• details of the health and social care professionals involved in the person's care, and who to contact (see recommendation 1.10.3)

We suggest a template based on these bullet points also has the advantage of providing direct links to the relevant sections of the NICE guideline.

3. The document is not a care plan, being neither informed by a clinical consultation, nor providing planned actions to implement care and support agreed by any named individual or organisation.

The AfME news item introducing the document quotes from NICE:

"This should be developed based on a holistic assessment as soon as the person's diagnosis is confirmed. The committee agreed that a medical assessment should be part of this assessment, typically requiring access to a medically trained clinician."

The whole point is that the plan is written by the clinician in consultation with the patient. By definition therefore, anything written without input from professionals providing that care and support is not a care and support plan, and should not be called that.

The document under discussion appears to mistake the intention of NICE, providing a mix of 1.5.1 along with the patient's activities to help them pacing, and some unhelpful and inaccurate theorising, rather than following 1.5.2 to create a plan focused on care needs and how they will be provided by clinicians, carers, and outside agencies such as schools, employers and care agencies. A plan, by definition, is about actions and who is going to do them.

A hypothetical sample of a one page care plan that follows the headings in 1.5.2 and focuses on the patients needs for care and action to be taken by others to provide that care can be seen here.
https://www.s4me.info/threads/care-...wnload-action-for-me.39801/page-3#post-549192

4. The document includes misinformation about aetiology which is both unnecessary in a care plan and misleading

The section headed:
"Section 3: How my health condition(s) affect me"

is too long and verbose and unlikely to be read by relevant carers or clinicians, and to mislead carers and patients who do read it.

It may be useful to provide, along with a care plan, a page summarising key aspects about ME/CFS to inform other care professionals providing care and support. This should be based on NICE, rather than speculative information about aetiology. For example, it could include a list of the 4 key diagnostic symptoms, the summary of severity levels, and definition of PEM, and the management advice to stay within exertion limits to avoid PEM, with links to the relevant sections of the NICE guidelines. It may also be useful to provide summary statistics for the individual pwME from a validated function questionnaire such as FUNCAP. However, the Care and Support plan itself should focus on the individual's care and support needs and how these are or will be fulfilled.

The third and fourth paragraphs have no place in any information about ME/CFS, being a mix of dumbed down nonsense:


"These complex systems operate at a deep level inside us. For this reason, I may look well on the outside, even if I am having a really bad day."

and speculation:


"The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise, light, or physical/mental activity can have a big impact on the symptoms of M.E."

There is no evidence to support this speculation, and it has no place in a care and support plan, being likely to lead to misunderstanding and poor care, including attempts to 'treat' sensory sensitivities with psychological therapy and gradual exposure which can cause significant pain, distress and crashes.

(continued in the next post)

 

(continued from previous post)

5. The sections on activities and limitations is both too long and inadequate

The lists provided as examples of activities that a pwME finds difficult and/or need help with are very odd, focused mostly on mild ME/CFS, for example listing details of types of cooking and gardening. There is also listed the harmful suggestion that pwME should be sticking to exercise regimes, which is contrary to symptom contingent pacing, while apparently completely missing the point that the effects of exertion of any type are cumulative through the day and longer, so activities cannot be rated in isolation.

If a pwME wants to record their current activity limitations in order to monitor changes in severity over time, FUNCAP is a systematic and validated questionnaire that takes into account cumulative effects of exertions.

If a pwME wants to record their specific needs for care and support to enable informed and appropriate household and personal care to be provided, that needs to be done in consultation with the provider of that care, and is likely to list activities the carer will do, such as helping with showering, feeding, housework etc, and the hours of care needed.

If the pwME requires symptomatic treatments from a doctor, the details about whether they can mow the lawn or use a slow cooker are irrelevant. A general care and support plan should simply state the need for regular and accessible doctors appointments, and the contact details of who will provide it, not all this detail.

6. The document includes unevidenced and harmful recommendations of pacing-up, and unhelpful strategies for pacing

The section of the document headed:
"Section 7: Managing my combined activities and baselines"


Uses the old model of baselines, goals, hour by hour planning and recording, and assessing each activity in isolation. This model formed the basis of the now discredited GET/CBT model where a pwME reduced their activity to prevent 'boom and bust' and find a hypothetical 'baseline' and then gradually tried to stretch the envelope by adding small amounts of extra exertion.
None of this is evidence based, nor is it NICE compliant.

Yet the document says:

"Baselines can be measured using the amount that someone does of a certain activity (e.g. reading a page), the length of time they do a certain activity for (e.g. reading for two minutes), and sometimes the distance travelled doing a certain activity (e.g. walking 10 metres)."


That statement is harmful nonsense. It completely misses the key point that the effects of exertions over a day is cumulative, so cannot be calculated by grading each separate activity in isolation.

It continues:
"Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity. Baselines will also need to be adjusted during a setback in the M.E."


The claim that baselines can be increased by consistently undertaking an activity is false and harmful. NICE specifically recommends against this approach, as it is in effect GET and is not evidence based. NICE does say exercise programs can be offered to those who want them, but it is very clear that this must be kept within the person's exertion limits and symptom contingent, so effectively only undertaken when there is space in the person's 'energy envelope'. It does not advise trying to stretch the limits by pacing up.

7. The document shows little understanding of key concepts and definitions in ME/CFS, including PEM, pacing, and the cumulative effect of multiple exertions

The description of the effects of exertion and PEM is wrong in multiple ways. It says:

"If I overdo an activity, I can quickly become fatigued and experience PEM for a few hours/days afterwards. When this happens, it impacts negatively on my ability to function."

The effect of any activity, not just when the pwME overdoes it, includes rapid fatiguability, and for many pwME also increase in other symptoms such as pain, nausea, OI etc. It is not just fatigue.

This is not the same as PEM. The effects of a single activity and/or the cumulative effects of multiple exertions over hours, a day or longer may take the pwME over their limit, and result in PEM.

PEM has specific features including a delay of 12 hours or more, typically a duration of longer than a day, sometimes much longer, a significant increase in the pwME's regular symptoms with additional symptoms, and a significant reduction in the capacity to function. PEM is not a few hours of fatigue, as this document suggests.

We have seen this same problem of conflation of fatiguability from all exertion with the specific phenomenon of PEM in the MEA funded project co-led by Peter Gladwell, where a questionnaire purporting to be about PEM disappeared the term PEM altogether, conflating it with fatiguability into 'Symptoms after exertion'. This is harmful to pwME and to their care, as it minimises the core phenomenon of PEM that distinguishes it from most other fatiguing conditions and leads to a lack of understanding of the harm that pushing at the energy envelope by trying to increase activity can cause, including the possibility of serious and long term deterioration.

The paragaph continues:


"I therefore want to avoid the scenario of 'boom-and-bust' and work towards an improvement in my health."


The phrase 'boom and bust' is not liked by most pwME, as it implies the 'boom' is an excessive, or abnormal level of exertion, when all it may be in reality is turning over in bed, or sitting up for a little longer than usual. The preferred expression is 'push and crash', which makes a clear link between pushing at the individual's current limit, and the resulting PEM.

The suggestion that the purpose of pacing is 'improvement in my health' is wrong. The purpose of pacing is management of exertion to avoid where possible episodes of PEM, and the risk of long term worsening. Fortunate pwME may find their health improves over time, but this is not the expected or inevitable result of pacing and documents like this should not mislead pwME or their carers or clinicians, leading to blame and self blame.

8. The document misuses diaries, plans, timetables and rating of individual activities

The section on hour by hour recording of activities and rating each as restful, low, medium or high demand may be useful for some pwME to do for a few days when they are initially learning how to pace, and a modified, much more brief, diary may be useful when applying for benefits, but the idea that a clinician will be find such hour by hour laboriously recorded detail useful in providing care and support seems unlikely and an added burden on pwME.

Given that many pwME do not function to a regular daily timetable, nor do they have the surplus energy to fill in such data daily make this a pointless effort, and trying to do so may take them over their exertion limit. The idea of planning days in advance is counter to symptom contingent pacing, and the assessment of whether an activity is, for example, medium demand will vary according to other activities that day and symptom severity that day.

We do not recommend such an hour by hour record as a useful addition to a care and support plan nor as a basis for planning pacing.

The final paragraph states:
Baselines can be measured using the amount that someone does of a certain activity (e.g. reading a page), the length of time they do a certain activity for (e.g. reading for two minutes), and sometimes the distance travelled doing a certain activity (e.g. walking 10 metres). Baselines change over time and for some people – but not everyone – they can be slowly increased by consistently undertaking an activity. Baselines will also need to be adjusted during a setback in the M.E.


Followed by a two column table headed My most valued current activities and My current baseline for this activity.

As we have already explained this is wrong in every way. Baselines, if they exist, are an ever changing, metaphorical estimate by the pwME of how much they can currently do cumulatively over a day or more without triggering PEM. The concept of 'measuring' the baseline for individual activities is a recipe for failure.
________________

In conclusion, we ask you to pass our concerns to Peter Gladwell and withdraw this document immediately, with an apology and explanation to those who helped create it under Gladwell's guidance or who have tried to use it or been misled by its contents.

We also ask the AfME trustees and officers to have a frank discussion about its reliance on Peter Gladwell, the Bristol Clinic and BACME as sources of materials and information, given how clearly this document shows that they cling to outdated ideas and still attempt to perpetuate the old model of therapist-led 'rehabilitation'.

ME organisations should be campaigning for a new model of NICE-compliant clinics, which are led by a doctor, are supported by specialist nurses, and cater for all severity levels including the most severe. While clinics continue to be led by therapists steeped in old, ineffective, potentially harmful models of care who have little or no real understanding of ME/CFS, we will continue to be subject to inappropriate resources such as this.

In conclusion we ask you to withdraw this document immediately, with apologies to pwME and an explanation.

AfME can and should do better.

We will post a copy of this open letter on the Science for ME forum, along with any replies.

Yours sincerely,

Trish Davis, pwME for 34 years, carer of pwME for 26 years, S4ME committee member
(and 14 more signatories listed).

 

Great letter @Trish.

It's bloody annoying when we have to use energy trying to fix mistakes that patient charities make. There are more than enough things to do in advocacy without our charities actively contributing to the misinformation and stigma. I really hope Action for ME listens and swiftly takes the action its name proclaims.