UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Definition of madness, doing the same thing repeatedly and expecting a different outcome!

 

Much like if you do what you have always done you will get what you have always got.

Which seems to be what they are aiming for... ?

 

Yes in a nutshell.
Service preservation

 

"The information gained from this project and the toolkit will provide the essential bedrock for any effective change to clinical practice and service development."

I wonder where that sentence comes from. It sounds like a selling point in a project application or, if not that a selling point for a charity trying to drum up funds. Why should the MEA think that a project funded by them should have any great impact on clinical practice and service development? They might hope that but it is not for them to say.

 

Interesting - any thoughts on who might fund this --? E.g. if it's a public body (UK Government funding) then it's deeply frustrating - surely a public body shouldn't fund this crap (again) --- but then our experience---!
Are applications for funding publicised i.e. before the decision is made?
An obvious route to challenge an application to (UK Government) fund this crap would be Sajid Javid - but too late if the (UK Government) funding has already been allocated!

 

Which reminds me of Jonathan's comments re NICE Guideline "evidence" - mostly self interested professionals' saying -- "gizza job"

 

I’m convinced (my opinion only) there is more to this, the PROMS will be used in the Long Covid clinics and in a few years the NHSwill be crowing about how it runs such great ME &LC clinics.

 

It may be relevant that the MEA has signed up to the new organisation for Long Covid care providers under physical medicine and rehabilitation.

 

Not sure, but this may be what’s going on with a toolkit by Bristol which of course will also be used in Bath.

Before reading the rest of this, (2,059 words! which I’ve condensed as much as possible but does not include everything); please bear in mind at all times that NICE Guidelines are evidence based medicine and clinicians can use Best Practice to justify the basis of their clinical decision for not following all or part of them, but they can’t ignore them altogether.

What follows is a bit of a trail of breadcrumbs I’m afraid, but so is a maze. So you might want to break down into chunks of reading.


1. Long Covid Conference 28 March 2024


These two posts with poster and photo from conference

Long Covid Advocacy on X: "Here's the poster presentations from the NHS #LongCvd conference Whilst extensive they also show how far we are from actual treatments There's alot of lifestyle intervention & some concerning trends more /1 https://t.co/dTGOS66DXu" / X (twitter.com)


United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland) | Page 4 | Science for ME (s4me.info)


Poster


First thing to note ringing alarm bells in the green section of poster “we have been sponsored by NHS England London Region” [influences]


In the middle of the poster is a purple box which reads “We will be supported by London ICSs and will work in close collaboration with the British Society of Physical & Rehabilitation Medicine Clinical Post Covid Society”


They have their own website separate from the main British Society of Physical & Rehabilitation Medicine

Clinical Post COVID Society - Clinical Post COVID-19 Society (clinicalpcs.org.uk)

On this page they still have showing a webinar notice on the current Locomotion study on the 20 Feb 2024 discussing assessments in Long Covid clinics. Standard assessment includes a NASA lean test.

Events from 20 February - 28 March - Clinical Post COVID-19 Society (clinicalpcs.org.uk)



Photo


Too much to reproduce here, but worth looking at it in detail:

Ominously titled “the Future” I’m particularly loving the bullet point “The unique offer: fatigue management, psychological support, sleep advice, breathing pattern retraining, physical activity, voc rehab.”


2. British Society of Physical & Rehabilitation Society


The British Society of Physical & Rehabilitation Medicine | Home (bsprm.org.uk)

“The leading professional body for physicians and other healthcare professionals involved in the field of rehabilitation in the UK”

“Our Society is dedicated to advancing the knowledge and practice of Rehabilitation Medicine in the UK, and to promoting excellence in patient care. We bring together a multidisciplinary team of healthcare professionals, including physicians, therapists and nurses, among others, who are all passionate about improving function and quality of life for patients with long-term conditions. We focus on whole-person rehabilitation rather than organ-specific conditions.”

This page includes a list of conditions covered under rehab separated into 3 categories: neurological, musculoskeletal, and others. We are firmly placed under ‘others’ as CFS/ME, not ME/CFS. Either a failure to update their webpage or not acknowledging legitimacy of revised NICE Guidelines. It’s one or the other.


Others:

· Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

· Long Covid and other post-viral syndromes

· Cardiorespiratory conditions

· Burns

· Cancer

· Elderly care

· and other long term conditions


New from September last year is the NHSE Community Rehabilitation Model covering transition of patients into the community after discharge from in patient settings or virtual wards (hospital at home). Severe ME patients would appear to come under this description.


From the page below you can download the NHSE community Rehab Model which the Society welcomed enthusiastically from NHS England in their page statement dated 22 Sept 2023

BSPRM Response to NHSE Community Rehab Model - BSPRM

Or

Here’s the document direct from NHSE uploaded in September of 2023 – while the Consultations on the Interim Delivery Plan for ME/CFS were still taking place!

A new community rehabilitation and reablement model (england.nhs.uk)


From the document this:


“Introduction

This document is focused on rehabilitation and reablement1 provided alongside step-down intermediate care – time-limited, short-term (typically no longer than 6 weeks) health and/or social care provided to adults (aged 18 years or over) who need support after discharge from acute inpatient settings and virtual wards to help them rehabilitate, re-able and recover.”


This document consists of best practice guidance that systems should consider in connection with their intermediate care and rehabilitation services and implement where appropriate locally and affordable within available budgets. The new2 community rehabilitation model aims to increase capacity and access to high quality therapy-led rehabilitation assessments3 and interventions that are timely, safe and person-centred, for people discharged on intermediate care pathways from acute settings and virtual wards. The new model will ensure: • Individuals will be the centre of discussions about their goals and the support needed to achieve those goals based on the ‘what matters to you?’ approach. Conversations will include the individual, and their family, friends or carers where appropriate.


• Any transition points will be managed effectively, ensuring an as seamless as possible experience of step-down intermediate care with consistent communication throughout. It aims to achieve this through:

• Maximising the use of the registered and unregistered therapy workforce based on the expertise and skills required and the point in the pathway where it is required.

• Supporting delivery by a multi-disciplinary, multi-agency workforce working in integrated ways, pulling in relevant skills, expertise and community assets as required.



1 Throughout this document, where the term ‘community rehabilitation’ is used, it includes therapy-led reablement interventions to support people to recover and retain function.

2 Although referred to as a ‘new model’ it draws on and brings together existing good practice.

3 A rehabilitation assessment involves a holistic review of a person's needs to identify the interventions needed to support them to recover and retain function. It is not the same as a Care Act assessment which assesses long-term/ongoing social care needs.


And that shape-shifting text is just from the first page!


3. Here’s their Governance page link from which the Constitution document can be downloaded. The latest version noting change of name in 2022:


Governance & Policies - BSPRM


“The Society was established as an unincorporated Society in the name of the Medical Disability Society. The name was changed to the British Society of Rehabilitation Medicine (BSRM) in December 1991 and in 2022 the name was changed again to the British Society of Physical & Rehabilitation Medicine (BSPRM). The original Constitution of the BSPRM remains the Governing document.”


Worth noting at this juncture that “invalidity benefit” ceased to be called that in 1995 when the new form of Incapacity Benefit was introduced.


In the Constitution document:


“Objects 3.1


The objects of the Society are:

3.1.1 to promote the development of the understanding and management of acute and chronic disabling diseases and injuries, and their consequences for the individual patient, their carers, their medical and other attendants, and society at large.

3.1.2 to promote the specialty of Rehabilitation Medicine, being defined as the application of medical skill to the diagnosis and management of disabling disease and injury of whatever cause and affecting any system of the body.

3.1.3 to advance the education of health and other professionals and the general public in the area of disability.

3.1.4 to develop and promote standards for clinical care and professional working in the specialty and mechanisms for audit, appraisal and review to ensure that those standards are maintained.

3.1.5 to promote and facilitate research in the field of rehabilitation to support the evidence base which underpins good clinical practice in the specialty.”


and this,


Sub-Committees,

Working Parties and Special Interest Groups

5.1 The Executive Committee shall set up such sub-committees and working parties as it sees fit.

5.2 The Executive Committee is further empowered to establish specialist interest groups. The Chairman of a special interest group shall become a member of the Executive Committee if not already a member as of right. Such groups will operate under ‘Working Rules’ agreed with the Executive Committee. As of 1 March 2016, there are seven groups. These are

• Special Interest Group for Electronic Assistive Technology (SIGEAT),

• Special Interest Group for Amputee Medicine (SIGAM)

• Vocational Rehabilitation Special Interest (VRSIG)

• Forum for Academics in Rehabilitation Medicine (FARM)

• Special Interest Group for Musculoskeletal Rehabilitation

• Special Interest Group for Spinal Cord Injury Rehabilitation (SCISIG) 2022 Name Update

• Trauma Rehabilitation Special Interest Group (TRsIG)



Also from the NHSE Community Rehabilitation document there is reference to:


“The individual rehabilitation plan – good practice:

• Is established when the person no longer meets the criteria to reside/on discharge (containing a note of any CGA, frailty, or other assessments which have already been completed, and any other relevant information gathered during discharge planning), and developed in full promptly after the community-based assessment.

• Is developed with the person, and their family, friends or carers where appropriate, using the question ‘what matters to you?’ and involving providers of short-term interventions as appropriate.

• Records the outcome of the therapy-led assessment and include information on what matters to the person, the agreed interventions and any equipment required during the intermediate care phase.”


Could this be what the PROM toolkit is for?


Covering mild/moderate/severe/very severe patients admitted to an acute setting.


With the individual rehabilitation plan, above, taking the place of the GP care plan for the very severe patients, with the rest of us filling it for the GP or clinic so that they can prepared the care plan that we’re supposed to have under the NICE guideline (old and new).


Here’s a link which ties this theory altogether – Institute of Public Care, part of the Department of Social at Oxford Brookes, Bath

Home | IPC Brookes


ForwardME commissioned a report on patient outcomes who received CBT and GET to present to NICE during the review process, it was co-funded by the MEA. Oxford Brookes did the study and produced the Report April 2019


NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf (meassociation.org.uk)


Policies and Documents - The ME Association

ETA: I see Jonathan has provided the final connection!
ETA2: To correct multiple duplications, incorrect date and crap! Brain's definitely telling me to stop.

 

so has this anything to do with the working groups supposedly happening/related to the APPG and following up on implementation for the Nice guidelines?

or is it a case of whilst that gets procrastinated then the same people in NHSE just roll out what they wanted to do with us anyway and then it is too late?

Or is this basically a re-brand re-org of 'occupational therapy' to be replaced by rehab? in general, under the guise of initiatives that mightn't be ME/CFS specific of 'generally getting people moving' focus (whether that is appropriate for others is another debate I would assume the answer is 'it depends' as well)

Sorry trying to keep up here

 

What organization is this?

 

Just looked up: A new community rehabilitation and reablement model (england.nhs.uk)

and not feeling hugely reassured by


"Guiding principles

The guiding principles of the new model are:

• People requiring community rehabilitation have access to the appropriate level of expertise, based on their individual needs, including people with particular conditions, needs, protected characteristics, or those living in particular circumstances.

• This includes but is not limited to: people living with frailty, mild cognitive impairment, dementia or delirium, palliative and end of life care needs, mental health conditions, learning disabilities, autism, obesity (including bariatric patients), younger adults, and people living in an unsafe environment, in prison, experiencing homelessness, or at risk of homelessness.

• People have the right to make their own decisions about their community rehabilitation if they have the mental capacity to do so. If there is a reason to believe a person may lack the capacity to make a specific decision, steps must be taken in accordance with the Mental Capacity Act 2005 as outlined in the Mental Capacity Act Code of Practice.

• Support is person-centred and holistic. This will be achieved by making every contact count, reducing handoffs and ensuring continuity of care.

• Community rehabilitation assessments and interventions are therapy-led and delivered by a mixed multi-disciplinary and multi-agency workforce which is able to pull in relevant skills, expertise and community assets as required.

• Staff work flexibly in line with a ‘one workforce’ culture across services, settings and sectors, building relationships and increasing skills.

• New ways of working are embraced, making best use of the full range of skills across the workforce, including the use of assistive and digital technologies when appropriate.

• There is leadership at all levels of the health and social care system which operates across organisational boundaries, with an agreed champion at neighbourhood-level, driving changes in behaviours and culture, and promoting integration and trust."


I am aware that there have been a few things changing over the last years including a need for example to improve care with those with severe autism who ended up institutionalised for long periods of time in unsuitable situations being in newspaper articles and part of that being an impetus for government to eg say the Mental Health Act needed to change (and I assume the care side of things too), and the ICS model supposedly integrating things and so on.

I do, however, think a lot needs unpicking here regarding reassurances as it pertains to ME/CFS if we could fall under this?


EDIT: although I do note the introduction says:

"This document is focused on rehabilitation and reablement provided alongside step-down intermediate care – time-limited, short-term (typically no longer than 6 weeks) health and/or social care provided to adults (aged 18 years or over) who need support after discharge from acute inpatient settings and virtual wards to help them rehabilitate, re-able and recover.

A major barrier to delivering step-down intermediate care is a lack of timely access to high quality rehabilitation in the community. Work with local systems suggests that this is largely driven by therapy workforce challenges, with the fragmentation of services across health and social care, including independent providers. This has resulted in in practical challenges to delivering improvements. Increasing community rehabilitation capacity will require a shift in how services are organised and delivered to maximise the use of the workforce and increase productivity and efficiency."

 

Aren’t many ME clinics staffed by OTs and Physiotherapists anyway?

 

In other words, this 'rehabilitation' is for people with illnesses, impairments, and living situations that can't, in many cases, be rehabilitated.

So is the word rehabilitation is used to make it sound as if the service is doing something that can (unlike the ongoing support that some of them will need) be completed and signed off?

 

The Clinical Post Covid Society
https://www.s4me.info/threads/uk-the-clinical-post-covid-society.37234/page-2#post-520144

Googling Long Covid and rehabilitation is a bit like opening chairman Mao's Little Red Book.
Apparently exercises are essential.

 

I will totally agree with you about this being a bizarre experience - it feels like we are shouting into the echo chamber about exercises being essential!

 

I think this issue and what is or isn't need for this (new?/ extended?) remit is worth circling back to as a discussion.

I'm trying to mentally work out (difficult here because I tend to be pictoral and like a good diagram) what that means this underlies/underpins and where this sits .

Is this going to be something that is limited to clinics, but those who are in them see it continually though? If so the worry is that we've the same issue of the sample not being representative of the population being claimed to be measured - but waiting for another Nice guideline type assessment of that method for such basic observations to get acknowledged.

If something is about assessing clinics, and what they offer then I can sort of understand needing to denote level to ensure that those who are severe are covered in this given the huge discrepancies in clinic offerings by level.

I just don't get why it needs a questionnaire that even if it was accurate is incredibly intrusive of a pwme in order to assess something else.

I've got quite a lot of experience in services being assessed and because of it have filled in and paid attention to lots of questionnaires others might have ignored or filled in absent mindedly as well as reading literature on them.

I'm struggling to think of one that I have seen where 'what is being assessed/reason for being [of the questionnaire]' isn't what the questions are about.

In education you have value-added, where theoretically children are tested at the start of the year (and there might be other 'flags' etc taken into account) vs how they perform at later stages. So it isn't in the interests to be over-optimistic with reading-level at start of year etc. But it might be things like external exams where the real 'how did the school do' gets compared on vs eg an inspection looking at an individual level.

Once you get to a university however then you have the QAA. And whilst HESA and league tables might report on 'number of 2:1 and above' it is acknowledgedly used in context by 'consumers' looking at that knowing it is a proxy for 'reputation' (as varied a term in what each person interprets that to consist of as 'perfectionism' ...almost) rather than 'teaching' or 'curriculum' for example EDIT: and you'd ask students about 'what they thought of their teaching' rather than assessing the students themselves by said questionnaire for that.

 

Today I'm increasingly despairing of how the dangerous issues with those very severe haven't had someone/anyone realising it is a crisis of safety.

And am so conscious of the 'moments of truth' situation that I think ME has which is where really I think the best and most urgent thing a service at clinic level could do is have a system that means when people do take a turn for the worse, particularly at the severe and very severe levels then there is swift appointments and swift changes to care plans and adjustments to stop them falling any further through the floor than necessary.

An example being if someone severe had eg a bad virus that at x weeks it was clear had left them short-medium term unable to look after themselves or get around home as they could before, clinics/service being set up to be able to suggest some common temporary support measures that do help . And not missing the window on those helping because there is a method of identifying a downturn and then offering appointments swiftly.

It could just as well be OT liaising with workplace and GP (and maybe council on blue badges and other adjustments to home) if someone was less severe and working


So I've decided in my head that if currently this is one of the most impactful things a service could offer, then the measures being used need to support this and be able to pick up effectively on such things. And that it wouldn't inadvertently lead to behaviours (to keep ratings or whatever) that could actually pull against thing and therefore cause worse individual outcomes.

What does anyone else thing on mapping this one out vs eg this scenario/frame of reference - or suggesting any others as a bit of a modelling to see 'how it might operate' or play out?