United Kingdom: BACME 2023 National Services Survey Report

Dolphin · Oct 24, 2023

Copied post
From: Dr. Marc-Alexander Fluks

Source: British Association of Clinicians in ME/CFS (BACME) Date: October 23, 2023 URL: https://bacme.info

BACME 2023 National Services Survey Report ------------------------------------------

The BACME team are pleased to announce publication of the 2023 National Services Survey report. The report is now available to download from the BACME website or using this link:

https://bacme.info/wp-content/uploads/2023/10/BACME-National-Services-Survey-Report-Oct23.pdf

This has been a big project and has led to us being able to provide a very comprehensive view of the current provision of specialist ME/CFS care in the UK.

We are grateful to all the individuals and organisations that have supported us with this piece of work including with the development of the survey and providing feedback on the report.

We have highlighted BACME's key recommendations at the end of the report and these align with the actions listed on the DHSC interim delivery plan report. The top priorities for the clinical community are: * To support improved awareness and education across all medical, social care and welfare services * To expand the provision of specialist training about ME/CFS * Increase the medical involvement in specialist ME/CFS care to facilitate improved access to diagnosis, investigations, new treatments and clinical research. * Increase the provision of specialist care across the UK and for children and young people and people who are severely affected

We are keen for this report and the recommendations to be circulated widely so it can be used to increase and improve the provision of specialist care to people with ME/CFS across the UK.

If you would like to provide any feedback on the report please get in touch at info@bacme.info

Kind Regards

Dr Vikki McKeever BACME National Services Survey project lead

Anna Gregorowski BACME chair

The BACME National Services Survey team

https://twitter.com/user/status/1716819539034620227

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CRG · Oct 24, 2023

Can't offer any sensible comments on a brief read - but this is very important data. Gives a pretty good picture of what is actually happening/not happening.

Hutan · Oct 24, 2023

The proposed survey was shared with representatives from Action for ME, the ME Association, Forward ME and the Sussex and Kent ME/CFS society who provided feedback prior to the survey being circulated.
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38 services were delivered by an NHS organisation, while 3 were NHS-commissioned but delivered by non-NHS organisations.

31 out of the 42 English Integrated Care Boards that commission services are represented in the study (74%) along with Manx care on the Isle of Man.
We didn’t receive any responses from services in Scotland, Wales or Northern Ireland (1 Welsh service and 2 Scottish services were invited to take part).
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If this data is representative of other services, then NHS commissioned services could be seeing over 13,400 adults and 2,200 children per year. This represents a potential small increase in the total number of people seen compared to our 2018 survey data possibly due to an increased number of services.
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Numbers of severely affected patients seen (n= 30 services) were: 277 adults (3.5%)
60 children and young people (4.5%)

Compared to 2018 this shows a reduction in the percentage of severely affected adults being seen (7%) and a slight increase in the percentage of severely affected children and young people being seen (4%).

It is possible that the move towards more remote delivery of care during the covid pandemic has led to people who are severely affected being more able to access services and it may also mean it is harder for services to accurately capture data on which patients are severely affected as they may be seen on a similar care pathway.
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up to a third of referrals may not receive a diagnosis of ME/CFS or go on to receive a therapy service following initial assessment. However, it is acknowledged that the triage of referrals and assessment of individuals is a considerable element of the service activity.
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31 ICBs represented in the survey (no of services commissioned)

NHS Bedfordshire, Luton and Milton Keynes ICB (1)
NHS Cambridgeshire and Peterborough ICB (2)
NHS Hertfordshire and West Essex ICB (2)
NHS Mid and South Essex ICB (1) NHS Norfolk and Waveney ICB (1)
NHS Suffolk and North East Essex ICB (2)
NHS North Central London ICB (3)
NHS North West London ICB (1)
NHS South West London ICB (1)
NHS Coventry and Warwickshire ICB (1)
NHS Derby and Derbyshire ICB (1)
NHS Herefordshire and Worcestershire ICB (1)
NHS Leicester, Leicestershire and Rutland ICB (1)
NHS Lincolnshire ICB (1)
NHS Nottingham and Nottinghamshire ICB (3)
NHS Staffordshire and Stoke-on-Trent ICB (1)
NHS Humber and North Yorkshire ICB (1)
NHS North East and North Cumbria ICB (2)
NHS South Yorkshire ICB (2)
NHS West Yorkshire ICB (2)
NHS Greater Manchester ICB (1)
NHS Lancashire and South Cumbria ICB (1)
NHS Buckinghamshire, Oxfordshire and Berkshire West ICB (1)
NHS Hampshire and Isle of Wight ICB (1)
NHS Kent and Medway ICB (1) NHS Sussex ICB (1)
NHS Bath and North East Somerset, Swindon and Wiltshire ICB (1)
NHS Bristol, North Somerset and South Gloucestershire ICB (1)
NHS Cornwall and The Isles Of Scilly ICB (1)
NHS Devon ICB (4)
NHS Gloucestershire ICB (1) Manx Care (1)

11 ICBs not represented by services who completed the survey
NHS North East London ICB
NHS South East London ICB
NHS Birmingham and Solihull ICB
NHS Black Country ICB
NHS Northamptonshire ICB
NHS Shropshire, Telford and Wrekin ICB
NHS Cheshire and Merseyside ICB NHS Frimley ICB
NHS Surrey Heartlands ICB
NHS Dorset ICB
NHS Somerset ICB
(NHS Frimley ICB and NHS Surrey Heartlands ICB have an associate arrangement with a service commissioned by NHS South West London ICB)
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Adult annual referral rates range from 7 to 850 9 have <150 referrals/year = Small service
13 have between 150 and 300 referrals/year = Medium service
8 have >300 referrals/year = Large service
(3 services were unable to provide referral numbers)

Children and young people services annual referral rates range from 5 to 718
8 services have fewer than 100 referrals/year
2 services have over 250 referrals/year
(2 services were unable to provide referral numbers)
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There's a bit I can't copy, but it notes that there has been an increase in children only services, from 3 in 2018 to 8 in 2023.
70% of adult services are medium or large services. The majority of children represented sin the survey were seen in two large services. BACME note that large services have the opportunity to have a multidisciplinary team and can build highly specialist staff, while smaller services can provide locally accessible services.

The majority of services reported significant changes since the previous survey was conducted, with over half noting changes to staffing mix and provision. Other significant changes include expansion into providing Long Covid services, changes to service providers and catchment areas and the offer of new therapy interventions and an increase in virtual therapy being provided.
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Whilst just over half of the services responding noted no significant change in referral numbers, 40% report an increase in referrals from previous years. Reasons given for increases in referrals included more referrals of younger patients, or those with Post Covid or post vaccination symptoms and changes in geographical catchment area.

Of the 15 services that indicated they had experienced a significant increase in referrals, 3 reported an increase in staffing provision and 2 reported a decrease in staffing provision.
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The data shows there has been a significant increase in the number of services offering video calls to deliver care and this is likely to be as a direct result of the pandemic and the need for all NHS services to flex to provide remote methods of patient contact. The provision of remote consulting is potentially of benefit to people with ME/CFS due to the energy demands of commuting and attending in person. It may also have led to improved access for people more severely affected who may have been able to access the standard treatment pathways via remote technology.
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The waiting times in adult services range from 1 week to 104 weeks (2 years)
The waiting times in children and young people’s services range from 1 week to 53 weeks
84% of services indicated their shortest wait is less than 18 weeks 52% of services indicated their longest wait is more than 18 weeks

This shows that over half of services cannot consistently meet the NHS recommended target of 18 weeks for all patients
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20 of the 30 services who see people with severe ME/CFS have doctors as part of the ME/CFS team and in 17 of them the doctors regularly attend multi-disciplinary team (MDT) meetings

5 services who see severely affected patients have no medical input 5 access medical input from outside their team.
3 have doctors in the team but they don’t attend MDT meetings

This means 13 out of 30 services (43%) who see people with severe ME/CFS do not have easy or regular access to medical input for patients with severe ME/CFS
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Hutan · Oct 24, 2023

This sounds pretty dire:

In summary, our survey has only identified 1 children and young people’s service and 1 adult service who provide in-patient care for people with very severe ME/CFS.

Comments from 3 of the services were:
We have use of up to 4 beds at a time on the general adolescent ward. We can also admit younger children on to the children's ward.

We are a long term rehabilitation and recovery ward for treating patients referred to us who experience mild to extremely severe ME/CFS symptoms, through physical rehabilitation, psychological therapy, nursing and Occupational therapy care and also pharmacological interventions.

If a client was an inpatient we will offer support to the client and ward staff - Physio/OT/Psychology could be involved
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Increased video access has been a benefit of the COVID-19 pandemic making video calls possible and indeed part of routine care in most services with 94% of services who see severely affected providing video calls. Overall, provision for people living with severe and very severe ME/CFS remains poor and of concern as the most affected are often unable to access essential care and support. There is very limited access in the UK to specialist inpatient care, medical input and face to face care and support for those living with severe and very severe ME/CFS.
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In our 2018 Survey there were 3 services seeing children and young people with no medical input and 2 services with doctors not trained in paediatrics. While the 2023 data shows an improvement in medical input into children and young people’s services, with only one service currently operating without medical input and this service was in the process of recruiting a doctor, only 2 out 3 paediatric services have a paediatrician as part of their service.

There is significant variation in the size of specialist children’s and young people’s services with 2 large services representing over half of referrals in this survey. The large services accept out of area referrals meaning they are potentially providing care across a very broad geographical area so rely on local teams to provide shared care and local knowledge. This is beneficial for children and young people where there is no other specialist provision, however the large services will not have locally relevant information e.g. relating to education provision.
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52% of services indicated they currently have staff vacancies
These vacancies were across a range of professions including specialist GP, dietitian, nurse, physiotherapist, occupational therapist, psychologist, mental health practitioner, consultant paediatrician, service lead and administration staff.
Vacancies were often longstanding, with services reporting having vacancies unfilled for long periods such as many months, a year or longer and in some cases up to three years.
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(I started out with the intention of just reading the summary, but somehow missed when it finished. This is going on longer than I intended. )

This lack of ownership by any particular medical Royal College may contribute to the problems related to the lack of provision of medical education about ME/CFS and this is something the Department of Health and Social Care delivery plan is also highlighting (3). Given the multisystemic nature of the condition it can be beneficial to have clinicians from a broad range of specialities involved in the provision of care and clinical research, however it can also make collaborative working more challenging. The standardisation of skill mix and staff/ patient ratios would help to reduce inequities in the delivery of care.
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Gastrointestinal symptoms, food intolerances and nutritional difficulties are common problems that people with ME/CFS encounter and yet only 5 services report having specialist dietician provision. Increasing the provision of specialist dietician support could improve this aspect of care and contribute to research and clinical guidance in this area.

Action needs to be taken to support recruitment & retention of ME/CFS specialist clinicians by standardisation of services, improvement in access to specialist training and education of clinical teams and through raising awareness of ME/CFS locally and nationally.
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30% of the services don't offer diagnostic services! Page 40

There is significant variation across services regarding the processing of referrals and how vigorously services apply diagnostic criteria when deciding who to accept for assessment and who to offer a therapy programme to.
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35 out of 36 services have a required minimum set of investigations that need to be performed prior to referral

Comments confirmed that the 2021 NICE guideline recommended blood tests were being used as a requirement before referral. Additional blood tests were mentioned by one service: folate/ferritin and Vitamin D were suggested as desirable additions to the NICE fatigue screen.
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Hutan · Oct 24, 2023

15 services indicated they have access to request investigations for patients. However 4 of those services do not have a doctor as part of their ME/CFS team. Comments submitted by 4 services indicated investigations are requested via primary care or consultants outside their service. Therefore it is likely that no more than 11 services can request and take responsibility for investigations.
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Less than 30% of services have the facility to directly request investigations and take responsibility for actioning the results. The symptoms of ME/CFS can affect virtually every organ and body system so it is common for patients to need further investigations beyond the standard blood tests to rule out other causes but there can be significant variation in what investigations are warranted and they may spread across many different medical specialities. It is therefore challenging for ME/CFS services to take full responsibility for co-ordinating all investigations needed, and most are not commissioned to provide this so this burden remains largely within primary care to co-ordinate. Services that request investigations need to have sufficient medical input across the working week to be able to rapidly respond to any abnormal test results and many services do not have sufficient medical provision to provide this.
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Services offered a range of interventions, with almost all offering individual sessions, three quarters offering information sessions and group sessions. Written resources were provided by the majority of services. Additional interventions included support with benefits, vocational rehabilitation and return to work support, and liaison with other services.
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Vague on what's being offered. I find it amazing that specialist services are so inadequate when it comes to diagnosing, whereas so focussed on providing 'therapy'.

Finally, the bit we have all been waiting for - BPS or something useful? From page 48

38 services responded and all of them indicated they do not base their therapy programmes on a deconditioning model
Services were then asked to indicate what illness model their therapy programme is based on:
31 services responded

16 services included the term Dysregulation with some referencing the BACME Dysregulation model and NICE guideline references immune system, autonomic nervous system and neuroendocrine involvement

Other responses included:

Medically unexplained fatigue
Biopsychosocial Model
trauma based and other approaches
ACT (Acceptance and Commitment Therapy) and pacing energy management
Regulation and rehabilitation
CFS rehab and gradual re-introduction of activities that have been excluded due to fatigue
Self-management and care of a long term condition
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It is recognised that the symptoms of ME/CFS are due to altered physiological responses, not due to deconditioning (11,12). Therapy approaches that are solely focused on managing deconditioning can involve encouraging patients to increase activity levels irrespective of whether they experience an escalation in symptoms. There are many patients that have reported this approach has led to long term deterioration in their condition, so this is now clearly advised against in the new NICE guideline.

It is notable that no services in our survey reported using a deconditioning model.

Secondary deconditioning was recognised however, as a consequence of the disability associated with ME/CFS but not as the primary cause of symptoms. One service reported that their patients recognise this secondary deconditioning and they
offered support to address this. Another service also reported discussing how deconditioning can impact experiences and management of the condition, however in this case the introduction to activity was tailored, using a patient led model rather than fixed increments.

One service reported operating within the Physical Health Psychology Service, and looking at practical and psychological strategies to try to help patients manage their fatigue levels more effectively.

There is not yet a clear international consensus on what illness model should be used for ME/CFS therapy programmes, but it is clear many services have found the information and language related to physiological dysregulation useful as a basis for developing therapy programmes (13).

The majority of other responses to this question described therapy approaches rather than presenting an illness model for the condition. This reflects the difficulty in finding a common language and narrative to explain the complex pathophysiology of this condition, which is not yet fully understood. It is not always essential to fully understand the pathophysiology of a condition to provide useful therapeutic interventions and many of the therapeutic approaches listed are general approaches used in many settings to support with the management of long-term health conditions. However, using terms that relate to therapy approaches to describe the pathophysiology of the condition is problematic and has contributed to misunderstandings about the illness. This is why BACME has promoted the dysregulation model to provide a common language that can be used to explain what we currently know about the abnormal physiological responses that occur in ME/CFS and the many different contributing factors that can be involved.
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Yeah, vagueness that provides plenty of scope for the whims and prejudices of whatever sort of person is given the 'ME/CFS expert' hat. Some really worrying responses in there.

Hutan · Oct 24, 2023

75% percent of services offer mindfulness and “3rd wave” therapies such as Acceptance and Commitment Therapy (ACT), Compassion Focused therapy (CFT) and Mindfulness based interventions.

50% of services offer CBT based interventions.

27% offer “supportive counselling”.

10% Eye Movement Desensitisation and Reprocessing (EMDR).

40% also offered “Other” approaches.
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To me it is madness that many specialist services aren't actually diagnosing, but most are offering mindfulness sessions that can be otherwise accessed at most community centres if people actually want that.

Eye Movement Desensitisation and Reprocessing - what is this? Sounds like nonsense.

Hutan · Oct 24, 2023

Eye Movement Desensitisation and Reprocessing (EMDR) was developed as a treatment approach for trauma, including Post Traumatic Stress Disorder (14,15), and this will be relevant for some people with ME/CFS.

The understandable controversy around CBT being offered as a ‘cure’, risked access to psychological therapy becoming more restricted for people with ME/CFS and generating inequalities with other long-term conditions. It is encouraging that the survey responses show that people accessing ME/CFS services are being offered a range of psychological therapies known to be of benefit to people living with long term physical illness.
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Compliance with the NICE Guidelines Page 53

A number of comments referred to changes in delivery, and these will be summarised below. However, many comments related to there being little need to change, for example one service commented that:

“No, the way that we practised before 2021 was in keeping with the new NICE guidelines.”

This position is consistent with a survey of BACME clinicians prior to publication of the guideline which found that the majority of clinicians were delivering models of care which were not dependant on theories of deconditioning or unhelpful illness beliefs (16).
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One service commented:

“We moved away from a deconditioning model some years ago, and our psychological support has always focussed on supporting people to develop coping strategies.”

There was mention of the role of the dysregulation model in supporting changes to services. More than one service specifically mentioned that all of their patient information sheets had been rewritten to reflect the NICE guideline.

The term “graded exercise therapy” has historically referred to two approaches: one, based on deconditioning and linked with fixed increments, and the other approach being more flexible and pragmatic. Services referred to a process of clarification of language as these two uses of the same language have led to confusion. One example of this clarification of language was:

“We do not use the term Graded Exercise Therapy since the publication of the new guideline but were not previously advising patients on using fixed incremental increases in physical activity/exercise to enable recovery.”
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We have updated our website and handbooks. We have no longer call the physio sessions GET. Our physio has always worked using a individualised approach, tailored to a persons needs, with awareness of PEM and so we have continued with this approach in line with the NICE recommendations but have moved away from the term GET due to the negative associations and different interpretations of what it means.
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The 2007 NICE guideline had used the terms Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) but had not provided a clear definition of these terms or any information regarding what pathophysiology they were addressing. Some published studies used these terms when basing therapy approaches on a hypothesis that the symptoms of ME/CFS are due to deconditioning and/or unhelpful illness beliefs. Research into the physiology of ME/CFS symptoms has progressed our knowledge and understanding and it is now clear that there are altered physiological responses in potentially multiple different body systems, and it is this abnormal physiology that generates the symptoms of ME/CFS, rather than deconditioning. The new NICE guideline includes a clear definition of the term Graded Exercise Therapy related to a deconditioning model of the illness. As it is known that deconditioning is not the primary cause of the symptoms of ME/CFS, the guideline recommends that Graded Exercise Therapy based on a deconditioning model should not be used as a management approach for people with ME/CFS.

Many specialist services used the term GET to describe their therapy programmes despite not using strategies that were solely aiming to address deconditioning (16). The comments made in our survey demonstrate that many services felt the new NICE guideline recommendations regarding therapy approaches were in alignment with the therapy approaches they were already using.

It is important that medical professionals take care to use language that conveys the complexity and severity of this illness and the need for holistic and individualised approaches due to the heterogenicity of the condition. The new NICE guideline prompted many services to update their written literature, service websites etc to align with the terminology used in the NICE guideline.
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Hutan · Oct 24, 2023

CBT? page 59
BACME asked if the CBT offered was compliant with the NICE idea of being supportive and not fixing false illness beliefs. Only 28 of the services replied, and even some of them were indicating that they weren't fully on board. BACME conclude that things are fine, but I think they need to understand that the issue of dropouts affects their survey just as much as it affects the reliability of BPS studies and clinic client satisfaction reports.

A common pattern was for the ME/CFS Service to offer support with self- management and rehabilitation, but one comment indicated that the local Long Covid assessment clinic was now offering more of this support and so the ME/CFS Service were receiving fewer referrals. In one area, the Long Covid assessment service had developed its own treatment options from its inception and so did not refer to the ME/CFS Service.

Some Services had set up as assessment clinics for people with Long Covid, and these clinics were offered within the ME/CFS Service but with a different patient pathway.
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and so goes the disappearance of ME/CFS with its NICE guideline requirements

A comment was made from a young people’s service that it is increasingly difficult to differentiate between ME/CFS and Long Covid as almost all young people have had Covid, and a similar comment reflected the increasing complexity of diagnosing Long Covid in the absence of testing. One local Long Covid service was reported as not accepting referrals for “probable Long Covid” in the absence of a positive test, hence these people could not access the ME/CFS Service via that local Long Covid pathway.
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Sorry, I'll stop there. At this point you are probably thinking that you might as well have just read the whole document rather than waded through my quotes.

rvallee · Oct 24, 2023

So still mayhem and nonsense, with no one responsible for anything. Got it.

NelliePledge · Oct 24, 2023

I’ve only skimmed, there is some interesting information, a lot could no doubt be interpreted differently by a different reviewer
responses show some services that are keen to demonstrate that what they do is compliant with the new NICE guidelines, some a flavour of we were already doing that, but also some not even bothering to reply.

it was interesting to see that quite a few services report they actually have some level of involvement of a Doctor, some actually being special interest GPs, some (more than 5 years ago) reporting it’s a psychiatrist tho

Kitty · Oct 24, 2023

Many specialist services used the term GET to describe their therapy programmes despite not using strategies that were solely aiming to address deconditioning (16). The comments made in our survey demonstrate that many services felt the new NICE guideline recommendations regarding therapy approaches were in alignment with the therapy approaches they were already using.
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What therapy, though? There isn't any.

If patients aren't there for initial diagnosis, tests to exclude alternative diagnoses, teaching of pacing and management techniques, assessments for disability aids, referrals for mental health support, advice about negotiating reasonable adjustments, investigation of new symptoms, or annual review, why are they having to make an inconvenient and tiring journey to a clinic?

All those services would potentially be useful if offered (I'll take a guess that for the most part they aren't), but none of them are therapy.

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