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MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

Discussion in 'General ME/CFS Discussion' started by Dx Revision Watch, Jan 11, 2017.

  1. arewenearlythereyet

    arewenearlythereyet Senior Member

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    This is really worrying ...I haven't seen my GP for over a year (what's the point) but have to meet him soon.....dreading it now. have been dismissed from my job today so I will need him to give me some help on reasonable adaptations for any future employer......do I now need to put pottery or sculpting on my cv? Will this inevitably end with them down grading CFS as a disability I wonder?? That will make working nigh on impossible. Last work medical I had they recommended that I undertake another course of CBT....sigh. Feels quite grim.
     
  2. Shawn

    Shawn Senior Member

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    There is no such thing as medically unexplained symptoms everything has a cause ,it's simply that their not good enough or willing enough to find it
     
    Last edited: Jan 13, 2017
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  3. trishrhymes

    trishrhymes Senior Member

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    So sorry to hear you've lost your job. That's really grim. There are a few GP's around who haven't bought in to the psychobabble. I do hope yours is helpful.
    Best wishes.:hug:
     
  4. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    The information here needs to be passed on to friendly media and activists like The Canary, and Peter Tatchell.

    Also, I wonder if the Countess of Mar has ever brought up the subject of so-called treatment exploring ME with collage and clay modelling in the House of Lords?

    I'd love to see David Tuller write a piece on this. He pulls no punches.
     
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  5. PhoenixDown

    PhoenixDown Senior Member

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    Personally I think they are deluding themselves, I doubt they are out-right lying, they are misguided, their success comes from telling the government and doctors what they want to hear. Confirmation bias is a powerful thing.
     
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  6. wastwater

    wastwater Senior Member

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    Behavioural activation BA sounds about one step away from hit them with a stick therapy
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Thank you @trishrymes lets hope so
     
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  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    https://www.england.nhs.uk/mentalhealth/adults/iapt/mus/sites/

    NHS England >
    Mental health > Adults >
    IAPT (Improving Access to Psychological Therapies) programme >
    Long Term Conditions and Medically unexplained symptoms >

    Integrated IAPT early implementers


    Integrated IAPT early implementers

    By 2020/21 over 1.5 million people with common mental health problems each year will access psychological therapies. People with common mental health problems often also have physical long term conditions such as diabetes or cardiovascular disease. When mental and physical health problems are treated in an integrated way people can achieve better outcomes. We are supporting 22 Early Implementer projects across the country to lead the way in integrating psychological therapies with physical health care:

    (...)

    Coastal West Sussex, Crawley and Horsham and Mid Sussex

    The IAPT services in this area already have a good record of working with patients presenting with long term conditions and good interfaces with community nursing teams. Building on these strengths therapists will be co-located in physical health teams allowing better communication between teams and integrated care. Initially the service will be working with chronic obstructive pulmonary disease, coronary heart disease, diabetes, chorionic [sic] fatigue syndrome and ME.

    (...)


    NEW Devon

    Devon aims to integrate psychological therapy in stepped care delivery across a number of long term condition pathways including diabetes, chronic obstructive pulmonary disease and obesity to improve mental and physical health care. The integrated IAPT service will be co-located in physical healthcare settings, focusing on working collaboratively with practice nurses and GPs and reducing stigma attached to accessing services.

    North East Hampshire and Farnham

    The project in North East Hampshire and Farnham involves the use of long standing links within primary care and IAPT. The care pathways include a well-established chronic obstructive pulmonary disease pathway that offers a range of protocols including house-bound working, psycho-education courses and integrated working with pulmonary rehabilitation team. Therapists will also be working within a medically unexplained symptoms pathway which includes a formulation team working with GPs and patients who are frequent attenders. Perinatal pathways and pathways for cardiovascular disease will also be developed further.

    (...)


    Oxfordshire
    Oxfordshire plan to work in an integrated way with other specialists and physical health workers to increase access to psychological treatments, improve recovery rates and reduce health care costs for patients and their carers. The service will initially offer support to patients in the following areas; cardiac, pulmonary, diabetes and medically unexplained symptoms.

    (...)


    Portsmouth
    In Portsmouth therapists will work in long term conditions pathways to improve access for patients with a range of conditions including chronic pain and fatigue, diabetes, stroke, chronic obstructive pulmonary disease and cardiac arrest. Staff in the integrated service will be working with district nurses and psychologists already working in physical health services. The objectives are to bring together key stakeholders, GPs, A&E, ambulance services and local acute and community services together to create a seamless pathway.

    (...)


    Richmond
    Richmond will start by implementing pathways for people with diabetes and medically unexplained symptoms. These are areas of significant demand pressure in the borough; services will expand to include respiratory and cardiovascular conditions within 2017. Staff in primary and secondary care will be trained in the detection and referral of people with comorbid mental and physical health conditions. Interventions will be integrated with existing physical health rehabilitation and health promotion (e.g. local exercise referral and weight loss programmes) as well as integration with social support through employment specialists.

    (...)


    Warrington
    Warrington’s collaboratively designed project aims to respond to local need identified by general practice. The expansion of integrated services will build upon existing services in the area and work with conditions prevalent in Warrington including MUS, diabetes and chronic obstructive pulmonary disease. The IAPT provider will work closely with GPs to identify patients who present at surgeries. They plan to robustly integrate existing drop in sessions for diabetes in the local acute hospital, once this is established they will extend this to patients with chronic obstructive pulmonary disease.

    (...)

    Windsor, Ascot and Maidenhead, Slough and Bracknell and Ascot
    Talking Therapies in East Berkshire will build upon their existing ‘Talking Health’ low intensity intervention for people with diabetes and mental health problems. This service will be expanded, and high intensity interventions included alongside a wider range of long term conditions, including chronic obstructive pulmonary disease, chronic fatigue syndrome, and irritable bowel syndrome. The new team of Integrated IAPT therapists will be based in primary care and co-located with others in a ‘GP cluster’. Staff will be working in partnership with nurse practitioners to undertake care planning reviews with those patients who are struggling with self-management and promote effective goal setting.

    (...)

    Wokingham CCG, Newbury and District CCG, North and West Reading CCG and South Reading CCG

    Talking Therapies in West Berkshire has developed relationships and protocols for working with people who have long term conditions. The service will now expand by building on this framework to develop the Integrated IAPT service working with diabetes, medically unexplained symptoms, chronic obstructive pulmonary disease and cardiac rehabilitation. They will develop new ways of working to offer an enhanced integrated psychological service within clustered hubs in Primary care to work with targeted patient groups and high users in partnership with GP’s.
     
    Last edited: Jan 16, 2017
  9. PhoenixDown

    PhoenixDown Senior Member

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    19m43s

    Careful now, I hope you're not confusing chronic fatigue with chronic fatigue syndrome.

    20m08s

    No, it's because the therapies don't make any sense and either don't work or make the patient worse.

    21m05s

    No argument there

    1m22s

    What planet is she living on? Also did she mean Body Distress Syndrome?

    3m32s

    ME is somatization? Where is your evidence for this? Oh that's right you don't have any.
     
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  10. Esther12

    Esther12 Senior Member

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    @Dx Revision Watch

    Is there anything you think we should be doing about the BDS types diagnoses coming? Do you think we might be able to use the PACE scandal to push for a re-think here, or push for outsiders to look at the potential harm of these sorts of diagnoses?
     
  11. antherder

    antherder Senior Member

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    Agreed. For the soundtrack, I'm thinking, Shiny Happy People, and Walking on Sunshine.
     
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    No.

    In the context of ICD-11 (which is the context she used the term in) she was correct to use the (proposed but not yet approved) term,

    "Bodily Stress Syndrome".

    But this needs qualification and caution, so please read on:


    At the moment, in the UK, the following terms are in use:

    "medically unexplained symptoms" (MUS)

    "medically unexplained physical symptoms" (MUPS)

    "functional somatic symptoms and syndromes" (FSS)​

    more recently,

    "persistent physical symptoms" (PPS) (as we've seen in this thread, this is increasingly being used in NHS services)

    "Bodily Distress Syndrome" (BDS)

    "bodily distress disorder" (BDD)​


    "Bodily distress disorder" is often seen being used interchangeably with "Bodily Distress Syndrome" (BDS) - which is the already operationalized construct and criteria set developed by Fink and colleagues.

    The new DSM-5 term "Somatic symptom disorder" (SSD) is also occasionally seen in the UK. SSD has a specific criteria set that is the intellectual property of the APA's publishing arm.


    There are two editions of ICD-10:

    the ICD-10 "core version" (which can be viewed online)

    and

    the abridged version of ICD-10's Chapter 5 Mental and behavioural disorders which is known as ICD-10 PHC (ICD-10 Primary Health Care). It is used in some countries in primary care and low resource settings.

    This has only around 26 disorder categories - the "commonest mental disorders encountered in general medical settings".

    The disorder category used in the ICD-10 PHC primary care version is

    "Medically unexplained symptoms."

    Whereas, the ICD-10 core edition has a number of discretely coded somatoform disorder categories (the F45.x categories).


    Both the ICD-10 core edition and the abridged Primary Care version are under revision.

    Recommendations of external ICD-11 work groups are advisory. Final decisions are made by the ICD-11 Joint Task Force and classification experts and they can override the proposals of the working groups.

    Final decisions for ICD-11 have not yet been made.


    The revision of the ICD-11 Primary Care version is being led by a working group chaired by Prof David Goldberg (the PCCG group).

    The Goldberg group's recommendation is that the existing ICD-10 Primary Care version category "Medically unexplained symptoms" is replaced with a disorder construct which the group proposes to call

    "Bodily Stress Syndrome"

    (Which is the term that Prof Payne was struggling with.)

    This is a disorder construct that draws heavily on the Fink et al (2010) BDS construct and criteria. It is an adaptation of BDS and is not identical to BDS.

    It has not been approved by the ICD-11 Revision Steering Group and Joint Task Force and the group's proposals are evolving. It's been under field testing and is still being evaluated.

    (As I've pointed out to Prof Helen Payne, in the comments to her YouTube, it has not been approved for use.)

    The Goldberg group proposes that its proposed category "Bodily Stress Syndrome" would sit under a disorder section heading called "Bodily distress disorders", under which would also sit the category "Health anxiety disorder" or "Illness anxiety disorder."

    Like this:

    Bodily distress disorders

    Code XX Bodily stress syndrome (replaces Medically unexplained symptoms)
    Code XX Health anxiety or Illness anxiety disorder (replaces Hypochondriasis)​


    So this is a recommendation for the Primary Care version by an external working group which is still evolving and which has not been approved and which may be rejected.


    There is expected to be alignment between disorder categories in the ICD-11 core edition and the 28 mental health disorders to be included in the forthcoming ICD-11 Primary Care version.


    For the ICD-11 core edition, the recommendations for the revision of the various F45.x somatoform disorder categories are the responsibility of the S3DWG sub working group. This group is chaired by Prof Oye Gureje. Prof Francis Creed is also a member.

    So we have two largely autonomous working groups making divergent recommendations for revision of the ICD-10 somatoform disorder categories.


    The S3DWG's recommendation (which has been entered into the core version Beta draft) is for a disorder construct which they currently propose to call

    "Bodily distress disorder" (BDD)

    This single category with three severities (Mild, Moderate, Severe) would replace most of the ICD-10 Somatoform disorder categories and also subsume F48 Neurasthenia, which is proposed to be retired for ICD-11 for both the core and the primary care versions.


    However, in construct, definition, characteristics and criteria, ICD-11's BDD is closely aligned to DSM-5's "Somatic symptom disorder". "Somatic symptom disorder" has also been listed under "Synonyms" to BDD.

    Fink's BDS does not appear in the ICD-11 core edition Beta draft and there are reasons which would make it problematic to locate under BDS under the Mental and behavioural chapter. For example, BDS requires no psychobehavioural cognitions (psychological criteria) to meet the criteria.

    (Fink has said that he tried to get ICD-11 to create a special section under which BDS might be located, but this has been unsuccessful.)


    SSD and Fink's BDS are conceptually different, with different criteria sets and they potentially capture different patient populations (which both DSM-5's Dimsdale and Fink acknowledge).

    SSD and ICD-11's proposed BDD can be applied to patients with symptoms associated with general medical conditions, which Fink's BDS and the Primary Care group's proposed BSS can't.


    To sum up:

    Recommendation by the S3DWG for ICD-11 core edition - Bodily distress disorder (close to SSD).

    Recommendation by the PCCG for ICD-11 Primary Care version - Bodily stress syndrome (close to BDS).


    But as I've said above, the term "BDD" is already being used interchangeably in the field for the operationalized "BDS".

    So there is considerable potential for confusion between these various terms.

    Unless you have read the proposal papers and scrutinized the definitions, characterizations and criteria and proposed definitions and criteria, it can be difficult to understand the differences between them.

    Leaving aside the issue of lack of validity for any of these constructs, proposing to introduce a new disorder term in the next edition of ICD-11, the proposed name for which is already closely associated with a conceptually divergent disorder construct, will potentially lead to conflation between the ICD-11 BDD construct and the Fink BDS construct with implications for maintaining construct integrity.

    (Which is possibly what Prof Creed would embrace, since he is known not to favour the SSD construct, himself.)

    The issue of nomenclature has been under discussion with ICD Revision for several years and whilst acknowledged as problematic by ICD-11's Dr Geoffrey Reed, with whom I am in contact, it remains unresolved.

    There are reasons why ICD Revision won't use the SSD term and construct instead of its proposed BDD, which I don't have time this morning to go into.


    So back to your question: yes, Prof Payne was correct to use the term "Bodily stress syndrome" in the context of ICD-11.

    However, she failed to clarify:

    1) that the BSS proposal is from the abridged Primary Care version work group;

    2) that BSS has not been approved for the Primary Care version or the core edition;

    3) that a different disorder construct and criteria set is under consideration from the S3DWG group and it is this alternative proposal (currently named BDD) that has been entered into the ICD-11 core Beta draft.

    It's complicated, I know.
     
    Last edited: Jan 20, 2017
  13. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    I've got an unwell family member this morning, and am pushed for time, so I'll answer this later or over the weekend. In the meantime, I've set out above the situation with ICD-11 with regard to proposals for the revision of the ICD-10 Somatoform disorder categories.
     
    Last edited: Jan 13, 2017
  14. Countrygirl

    Countrygirl Senior Member

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    :ill:


    :bang-head:
     
    Last edited: Jan 13, 2017
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  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Apparently the drop out rate for therapists is around 20%. So not only have they got to recruit and train all the additional therapists that will be required for the rolling out of IAPT in 2017/18 and 2018/19 but hang on to them, too.

    https://www.england.nhs.uk/stps/tf-call-to-bid/

    NHS England

    Transformation fund call to bid

    December 2016

    Improving access to psychological therapies (Integrated IAPT)


    To support the implementation of the Five Year Forward View vision of better health, better patient care and improved NHS efficiency, NHS England has created a transformation fund. This funding will enable local areas to deliver on key ambitions identified by the independent cancer and mental health taskforces...

    18 January 2017 Submissions deadline for bidders

    (...)
    ( PDF:https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf )

    Intervention Specific Parameters to Funding, Governance & Delivery: Intervention 1 - Integrated IAPT


    (...)

    Interventions to be funded
    Intervention 1 - Integrated IAPT

    [​IMG]


    •Funding is for delivery of integrated IAPT services – to develop integrated services at scale (for instance teams of 10 therapists or more).
    •A significant aspect of the funding will be for expanding the IAPT workforce through new IAPT trainees or recruiting suitably qualified experienced therapists not already in IAPT. Training places will be subject to capacity at Universities, which we will work with Health Education England to secure.
    •Because the academic year spans financial year the salary of trainees (and potentially their course costs) will also span the financial year. Areas will need to plan to locally fund trainees in 2018/19.
    •We expect new Integrated IAPT services to start during the course of 2017/18 – the right time will depend on the current local position and alignment with training courses.
    •High quality integrated IAPT will lead to reduced demand / savings in physical healthcare services. A commitment to identify and reinvest savings into IAPT services, making the funding sustainable, will be a key part of successful proposals.
    •Health Education England are commissioning top up training for experienced therapists in working with people with Long Term Conditions – successful sites will be able to access this, with remaining capacity being freely available to areas.
    •Applications are welcome from STP or CCG footprints but must be submitted via STPs.
    •Proposals will need sign off from commissioners and both physical health and IAPT providers.
     
    Last edited: Jan 14, 2017
  16. Squeezer

    Squeezer Moderator

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    In effect, this seems like one big "experiment" dressed up in management speak and intended to be carried out on patients. There seems little intention to seek or even bother to acknowledge the fundamental requirement to obtain - at all stages - the informed consent of patients. Nor is there much evidence to suggest they have considered ANY non--psychology based ALTERNATIVES. In other words, they are seeking to plough ahead with a "re-branded" BPS experiment and effectively railroad patients irrespective of the legal, moral and ethical obligations all medical professionals have to their patients. If they approached me with this I'd say, "Fine, let's start with the basics. Before I agree to any form of experimental treatment, I want to be provided with a complete copy of each and every piece of evidence relating to this 'proposed treatment' and upon which you the health care expert is basing your professional reputation by recommending it to me. I would also require full details of each and every alternative you have considered, including the most recent up-to-date research and the specific rationale you have used to determine that, in your professional opinion, each alternative was not appropriate in my case. I require this because I have significant concerns that the proposed treatments are in fact "experimental" and may cause me significant harm and, as such, I would not therefore consent to them. Nor obviously as a medical professional, would you wish to be placed in such an indefensible position particularly after I had raised specific concerns with you at the outset. I also have concerns that the proposed treatments are little more that re-hashed forms of GET and CBT, and there is already ample evidence to show that such treatments can cause significant harm to patients with symptoms such as mine. In short, I want to trust you, but it would be reckless in the extreme to place my already poor health at further risk simply because administrators who have no insight into my specific circumstances were pushing forward another campaign. We can then discuss the issue of informed consent but only after I have had the opportunity to review all the materials you provide, or I have had someone do so on my behalf."
     
  17. Countrygirl

    Countrygirl Senior Member

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    Excellent!!

    This is the same approach I have planned to adopt when the subject is raised again, and I particularly like the above.

    I suggest we all do this, preferably in writing direct to the surgery so that there is evidence of our concerns for future reference.

    They will love us! :rolleyes:
     
    Last edited: Jan 14, 2017
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  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Squeezer suggests a good approach. Post #117
     
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  19. trishrhymes

    trishrhymes Senior Member

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    This is far worse than the NICE guidelines.

    I note for Chronic Fatigue Syndrome treatment is simply listed as Graded Exercise Therapy (GET) or CBT.

    So no mention of the fact that NICE only considers these moderately helpful for mild to moderate sufferers and not helpful for severe sufferers.

    No mention of medical symptomatic treatments for pain, sleep etc., and certainly no mention of the fact that NICE recognises ME as a neurological, not a psychiatric condition.

    No mention of the weakness of the 'evidence' for these being any use at all, let alone potentially harmful.

    Quotes from the NICE Guidelines: https://www.nice.org.uk/Guidance/cg53

    'Is this guideline up to date?
    In 2015 we were told about 3 US reports that indicated there are likely to be changes in diagnostic criteria that could have an impact on the guideline recommendations. We decided to start a check of whether the guideline needs updating, and plan to publish our decision in summer 2017. We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the check.'

    'Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME.'

    'The recommendations in this guideline emphasise the importance of early symptom management, making an accurate diagnosis, ensuring that significant clinical features are investigated, and working in partnership with people with CFS/ME to manage the condition. Different combinations of approaches will be helpful for different people.'

    'Treatment and care should take into account patients' individual needs and preferences.'

    'People with CFS/ME should have the opportunity to make informed decisions about their care and treatment.'

    'Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches'

    ....................

    Unfortunately I have cherry picked the relatively good bits from NICE, which overall is bad, since it is full of detail about how to do GET and CBT and recommends them even though the evidence when written was slight, and now, since the PACE fiasco, is non-existent.

    I think the 'informed decisions' bit is vitally important because a truly informed decision would be based on the biomedical evidence, particularly the bits about faulty energy metabolism and the dangers of pushing into aerobic exercise, as well as the evidence that PACE and FINE showed GET and CBT don't work.

    Anyone claiming to treat ME should therefore both know these facts, and give them to patients so they can make 'informed decisions'. To do otherwise is unethical, unprofessional and irresponsible. And it goes against the government's own guidelines that specify informed decisions.

    On that basis, the whole 'Integrated IAPT' program is unethical and needs to be stopped.

    Now what do I do?
     
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  20. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

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    Here are two more pages from the Transformation fund call to bid document:

    https://www.england.nhs.uk/stps/tf-call-to-bid/

    NHS England

    Transformation fund call to bid

    Improving access to psychological therapies (Integrated IAPT)


    > Mental Health Call to Bid
    > https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf


    Mental Health Call to Bid

    Introduction to and supporting documentation for
    VALUE BASED TRANSFORMATION FUNDING SELECTION

    December 2016

    Interventions to be funded
    Intervention 1 - Integrated IAPT


    Page 12

    [​IMG]


    Page 13


    [​IMG]



    Bid Application Form (Mental Health application form Part A)

    https://www.england.nhs.uk/wp-content/uploads/2016/12/tf-mental-health-app-form-part-a-iapt.docx
     
    Last edited: Jan 16, 2017
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