August 8th, 2018: Understanding and Remembrance Day for Severe ME
Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Discuss the article on the Forums.

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. AndyPR

    AndyPR Senior Member

    Nothing wrong with clay :)
     
  2. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,837
    Likes:
    19,938
    UK
    Excellent temporary fix for hypotension though, isn't it?

    Not so good for those of us whose BP is now somewhere in outer orbit.:(
     
    Ysabelle-S, Valentijn, MeSci and 4 others like this.
  3. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    By the way, Pathways2Wellbeing was brought to the attention of AfME, Sonya Chawdhury and the ME Association in April 2015.

    In 2014, evidently hospital specialists were also being approached, as well as GPs and trainee GPs, though unclear whether this was a successful pitch:

     
  4. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,837
    Likes:
    19,938
    UK
    Off to the surgery in a few minutes armed with a letter to the GP proffering my (strong) views about her plans to send me into a severe relapse by withdrawing my crucial medication. :grumpy:

    It is attached to the MEA's purple booklet.
     
  5. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK


    Yes, yes...I have feelings of intense anger and I keep muttering words beginning with "F"
     
  6. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    Good luck, ((((Countrygirl)))).
     
    Solstice, MeSci, Jan and 4 others like this.
  7. AndyPR

    AndyPR Senior Member

    But, but, we get told part of our problem is that we pay too much attention to our symptoms :mad: wish they would make up their minds.
     
    Solstice, Esther12, MeSci and 5 others like this.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    Update to Post #32

    http://forums.phoenixrising.me/inde...pening-across-the-uk.48710/page-2#post-801636

    https://clinicaltrials.gov/ct2/show/NCT02444520

    Feasibility study:

    Persistent Physical Symptoms Reduction INtervention: a System Change & Evaluation in Primary Care (PRINCE Primary)
    ClinicalTrials.gov Identifier:
    NCT02444520

    etc.




    There is also a PRINCE Secondary Care Trial
    https://clinicaltrials.gov/ct2/show/NCT02426788

    The PRINCE Secondary Study: Persistent Physical Symptoms Reduction Intervention: a System Change and Evaluation in Secondary Care


    which was written about in this PR thread in November:

    http://forums.phoenixrising.me/inde...ptoms-reduction-intervention-cbt-trial.48121/

    in which a participant in the PRINCE Secondary Care Trial contributes her experiences.

    (I'll update Post #32)


    The PRINCE Secondary Care Trial also featured in

    IOP Department of Psychological Medicine Newsletter

    January 2016 Newsletter

    https://www.kcl.ac.uk/ioppn/depts/pm/Newsletters/Newsletter-Issue-2-Jan-2016-for-print.pdf

    on Page 3

    Trigger warning: there is a photo of Prof Sir Simon Wessely on Page 4 in a woolly jumper.
     
    Last edited: Jan 12, 2017
  9. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,899
  10. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,837
    Likes:
    19,938
    UK
    Just reporting my safe return after the brief foray behind enemy lines.

    Frosty face has the day off and a very pleasant receptionist greeted me.

    Seemed so unnervingly normal. You would never credit that they have been taken over by the psych brigade.

    I left Charles's purple thingy on the desk stuffed with papers by Naviaux, Fluge and Mella. Plus a little missive of my own which I rewrote just before I left the house as it sounded as though the reader was standing at the receiving end of a machine gun. It is now toned down and I hope the emotion is taken out of it.

    I hope it has a positive outcome.
     
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    From

    http://www.kingshealthpartners.org/...ed_-_FINAL_Doc_7.5.15_original.pdf?1435916321

    Annual Report - King's Health Partners
    Academic Health Science Centres – Annual Report 2014-15

    Page 9


    Persistent Physical Symptoms

    The PRINCE Programme, funded by Guy's and St Thomas' Charity, aims to develop new, integrated health care pathways for patients with Persistent Physical Symptoms (PPS) otherwise known as medically unexplained symptoms. PRINCE Primary will evaluate the acceptability and feasibility of studying an integrated approach to care for these patients in general practice within the context of a cluster randomised controlled trial. PRINCE Secondary will focus on the clinical and cost effectiveness of a joint clinic (JC) (i.e., physician and psychotherapist) plus cognitive behaviour therapy (CBT) (JC+CBT) versus treatment as usual (TAU) for PPS patients.

    The commissioning element of the program aims to develop care pathways that bridge physical and mental health care, reduce costs, improve patient outcomes, develop a skilled workforce and have a significant impact on the NHS. Since October 2014, we have appointed two trial managers, two research workers, three CBT therapists and a psychiatrist to work on the PRINCE Programme. Furthermore we have formed independent committees (Programme Steering Committee and Data Management and Ethics committee) to oversee the programme. Both PRINCE Primary and PRINCE Secondary Trials have received a favourable ethical approval subject to minor amendments.

    PRINCE Secondary has appointed three consultants (cardiologist, neurologist and rheumatologist) to conduct the joint clinic consultations along with the therapists. In regards to PRINCE Primary, we have 15 practices who have shown an interest in participating. The manuals for both trials are being finalised and the training of GPs in 10 minute CBT is being developed. We are liaising with the clinical trials unit in setting up the databases required for both trials. The PRINCE programme had its official launch on 29th January 2015 and we plan to start recruiting in March 2015.
     
    Invisible Woman and Countrygirl like this.
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    I hope you remembered to pick up a bag of dried pasta, a Pritt Stick and a packet of glitter on the way home in order to explore your symptoms' purpose, honour their legitimacy and promote a positive re-association with the body, which has often become the ‘enemy’?
     
  13. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,837
    Likes:
    19,938
    UK
    Oh of course! As if I would forget.

    Going to start after my afternoon cuppa.

    Look out for the new 'me'.
     
  14. Cheshire

    Cheshire Senior Member

    Messages:
    1,122
    Likes:
    9,007
    Yes, but in a wrong way. I remember reading something like "we should pay attention to our bodies with compassion and even curiosity, not catastrophisation". And if we fail to recover after paying attention to our bodies, they can always say that it wasnt in the proper way, that it lacked a "mindful" spirit. That damn perfectly balanced goldilocks point we, poor lost souls, can never reach without the counseling of a professional.
    By giving contradictory and vague advices, it's so simple to put the blame on patients when it fails! Never the fault of the therapist.
     
  15. AndyPR

    AndyPR Senior Member

    Hoping to see something like this... ;)
    glitter.jpeg
     
  16. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,154
    Likes:
    17,899
    Nooo.. I like you just as you are - brave, fiesty, funny, bolshy, intelligent...
     
  17. anciendaze

    anciendaze Senior Member

    Messages:
    1,841
    Likes:
    4,782
    Please note that Dr. Peter Rowe of Johns Hopkins Children's Center reported recently on cases of POTS which were at least improved following surgery to correct cervical spinal stenosis. Previously, these patients had failed to benefit from years of treatment of POTS as a psychological problem. Here's his advice on treating orthostatic intolerance.

    I'm going to bet you that none of these people pushing MUS even mention the possibility that patients with MUS might have spinal stenosis no doctor has given sufficient attention, or even Chiari malformation. Simply running proper diagnostic tests for this can get expensive.

    It appears the goal of this movement is to place responsibility on the patients for conditions that are difficult to diagnose and expensive to treat, allowing governments and insurers to dodge responsibility. If counselors and pharmaceutical companies make a profit as well, they see this as a clear win -- even though patients remain disabled for life.

    If we were talking about the effect of such incentives in investment banking the term moral hazard would be used. Strangely, this term has hardly had any use in medicine.
     
  18. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    [Ed: my emphasis]


    http://www.nsun.org.uk/news/national-summit-medically-unexplained-symptoms/

    Medically Unexplained Symptoms National Summit –

    October 2016

    NSUN calls for radical rethink of the concept and terminology of “Medically Unexplained Symptoms.”

    Calling for change to misleading and unhelpful medical concepts and terms, Naomi Good from NSUN / Studio Upstairs opened the National Summit, a conference organised by the Tavistock and Portman NHS Foundation and Health Care Conferences on the 21 October in London.

    The ‘Medically Unexplained Symptoms’ (MUS) Conference stirred some debate amongst medical professionals, although few people with lived experience were present to join the discussions.

    MUS encompass people’s persistent experiences of symptoms often chronic in nature (for example, persistent pain, tiredness or gastric symptoms) and can cause people significant pain and distress.

    Diagnoses for certain patterns of ‘medically unexplained symptoms’ include: Irritable bowel syndrome – disabling stomach dysfunction, Fibromyalgia – widespread bodily pain and tenderness, Non-Epileptic Attack disorder and Myalgic Encephalomyelitis (ME) characterised by a range of symptoms and signs including muscle pain with intense physical or mental exhaustion.

    Claire Murdoch, National Mental Health Director at NHS England discussed the development of the Improving Access to Psychological Therapies (IAPT) program, which is the key response to MUS. She stated “Two thirds of the expansion in IAPT is to be integrated with physical health pathways for people with long term conditions or distressing and persistent medically unexplained symptoms.”

    Naomi Good stated, “There is an urgent need to challenge the assumption and misconception that there is no physical explanation for MUS. This can be very frightening and can lead people to feel what they are experiencing is all in their head.”

    Unhelpful assertions include for example: ‘A large number of people experience physical symptoms for which no clear biological cause can be identified.’

    To suggest that there is no physical reason for what people are experiencing is simply false. Causation may not be clear through diagnostic testing however to understand the experiences we must think about how the mind and the body work as one unit. There are in fact physical underpinnings that link the functioning of the mind and body. Educating and supporting people to understand these mechanisms is key to helping people find a way to alleviate and live with their condition.

    Parity of esteem will not be a reality until services can provide holistic and integrated care that does not continue to see our emotional and physical health as two distinct entities.

    Conference materials

    Organiser's summary including NSUN presentation


    which is:

    http://www.healthcareconferencesuk.co.uk/news/medically-unexplained-symptoms

    Medically Unexplained Symptoms

    News and updates from today’s conference held in partnership with the Tavistock and Portman NHS Foundation Trust and chaired by Chief Executive Paul Jenkins OBE.

    The Lived Experience: it’s all in your head by Naomi Good Regional Development & Research Manager at NSUN Network for Mental Health. Naomi opened the conference giving the lived experience of what its like to experience Medically Unexplained Symptoms.

    Naomi Good presentation

    ( http://www.healthcareconferencesuk.co.uk/userfiles/1/Naomi_Good.pdf )

    Improving support for people with Medically Unexplained Symptoms by Claire Murdoch National Mental Health Director at NHS England

    Claire gave a national update on medically unexplained symptoms and opened discussing the difficulties of raising the profile of mental health, particularly within acute trusts. Claire said “the link between the physical and the mental is all our business”. “We all know this, the cost to the NHS is about £3.25billion per year – in poor responses to medically unexplained symptoms, and time spent in hospital, if we were to look at time off worth the economic costs are huge”. “This is distressing for people, we also know there are high degrees of treatability for those suffering.”

    Claire discussed the development of the IAPT programme which is the key response to medically unexplained symptoms. Claire said “We are in NHS England committed to increasing the access to talking therapies in IAPT”. Task 1 is to get money invested in talking therapies, task 2 is to ensure best evidence and task 3 is to develop the model. We are current investing in doubling the number of employment advisors in IAPT with around 90 CCGs to take part in extensive testing of employment advisors in IAPT- gathering rigorous infomration for 2020/21.

    We have a committment to drive the access and recovery target - the aim to be at a 50% recovery target by the end of this year and we will reach that. One of the big issues is building a competent workforce, its a huge endeavour to train more people in talking therapies, there is a high turnover rate. There is a massive workforce issue to treat the number of people we want to treat on an annual basis and increase it.

    Two thirds of the expansion in IAPT is to be integrated IAPT services - integrated with physical health pathways for people with long term conditions or distressing and persistant medically unexplained symptoms. We are going to announce where the pilots will be any day now. In 2016/17 and 2017/18 early implementers are supported centrally, from 2018/19 CCGs are to commission integrated IAPT services. It is almost unthinkable that you would take money out of the acute trust and invest in mental health services - but you will save money and deliver better outcomes.

    In terms of workforce there are currently around 6000WTE therapists in the current workforce, seeing on average 7 people a day. There is evidence of poor workforce wellbeing. There is a big question of how we build a sustainable workforce.

    In conclusion, NHS Englands main focus is the notion of therapy for medically unexplained symptoms. There is a new way of thinking about the person and what they need and how therapy is a huge enabler to patient activation, triggering all sorts of points that I want you to love although I know many of you have reservations that IAPT could be the only answer. IAPT is a wonderful trogan horse into a different way of thinking of the physical and the mental. It is a time of big challenge and opportunity. The system knows we have to move towards a wellness based approch to healthcare, I would like to reclaim the term mental illness, we have sometimes done people a dis-service by normalising mental health for the people at the extremes - its a question I would like to leave with you. The big opportunity is to push forward on the wellness agenda, building resilience and looking at physical and mental and the links between the two. Claire also discussed digital developments and the role in the future of IAPT.

    View Claire's presentation here

    ( http://www.healthcareconferencesuk.co.uk/userfiles/1/Claire_Murdoch.pdf )


    Session 3 focused on developing an effective integrated holistic medically unexplained symptoms service by Dr Julian Stern Director of Adult and Forensic Services & Consultant Psychiatrist in Psychotherapy, and Tim Kent Service Lead Primary Care, Consultant Psychotherapist and Social Worker at The Tavistock and Portman NHS Foundation Trust.

    Julien discussed their dual focus offer to patients and staff. Julien said their retention of staff is excellent as they focus on wellbeing of staff. Julien said “looking after our staff is key”. Julien said that one of the strengths of their approach is to incorporate outcome monitoring measures that are compariable with the ones IAPT use and equally to do some health economic research. Our results have been excellent. Julien then discussed their outcome monitoring data which is available to delegates. The bottom line is about 75% of patients showed improvement in their mental health and about 55% recovered. In terms of money we have shown our service which costs about £1000 per patient, for every patient we save about £460 – so it still costs, but there is probably no service in the NHS that is entirely cost neutral. They have been told that if the service was a drug it would be approved on NICE guidelines based on the cost per QALY.

    Tim Kent continued the presentation by showing a powerful film that a service user wanted to make to show doctors about why people might look ok but they are not ok. Tim discussed issues around GP mental health training, understanding pressure in general practice and primary care practice. Tim also talked about the importance of supporting receptionists particularly with reference to the news this week.


    Pre-event Abstract: Developing an effective integrated holistic MUS service


    In this presentation Julian Stern and Tim Kent present the Tavistock primary care model, pioneered in the London Borough of Hackney, and recently commissioned in Camden, and the subject of much interest throughout the UK .

    The service provides experienced and qualified psychologists, psychotherapists and medical staff, to GP practices throughout the 2 boroughs, offering a range of psychotherapeutic modalities to patients, many of whom suffer from MUS and /or LTC’s (Long Term conditions) as well as other comorbidities.

    In addition the services offer consultations to and with GPs and the other members of the primary care staff team.

    Independent health economics research has shown the cost-effectiveness of the model, and the Hackney service has won a number of national awards.

    The model of work is influenced by psychodynamic and systemic thinking, and the practitioners offer a wide range of therapeutic interventions. Close attention is paid to key relationships with partners in the local health economy - GPs and their staff, local IAPT services, secondary care services and Third Sector organizations as well as attending to the requests and anxieties of commissioners.

    This presentation will focus on aspects of the work of the service -clinical work with patients, interactions with other Health Care Professionals , and the wider system.

    Guidance for commissioners of medically unexplained symptoms services by Professor Carolyn Chew-Graham and Dr Simon Heyland Co-Chairs Joint Commissioning Panel for Mental Health MUS Expert Reference Group

    Pre-event abstract: Commissioning guidance for Medically Unexplained Symptoms (MUS)

    The Joint Commissioning Panel for Mental Health (JCPMH) is co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners. It is a collaboration between seventeen leading organisations, aiming to guide commissioners to improve mental health and wellbeing, using a ‘values based’ commissioning model.

    This presentation will provide an overview of MUS, problems with definitions and an outline of the impact of MUS on the patient, the clinician, the health service and society.

    We will discuss the principles which should underpin good MUS services and present our ten key messages for commissioners. We will discuss service models which demonstrate good practice.

    Professor Carolyn Chew-Graham and Dr Simon Heyland presentation

    ( http://www.healthcareconferencesuk.co.uk/userfiles/1/Simon_Heyland_and_Carolyn_Chew-Graham.pdf )

    [Ed: this is the presentation I posted near the beginning of this thread.]


    Medically Unexplained Symptoms: Evaluating the Stepped Care Model and Learning from the National Pathfinders by Professor Rona Moss-Morris Institute of Psychiatry, Psychology and Neuroscience and IAPT Lead (Medically Unexplained Symptoms) at NHS England, and Dr Abrar Hussain Consultant Liaison Psychiatrist Berkshire Healthcare NHS Foundation Trust.

    Pre-Event Abstract:

    There is a huge area of unmet need for patients with MUS in the community. In 2012, the national IAPT pathfinder programme allowed Berkshire to develop a stepped care model with general practitioners, IAPT clinicians, health psychology and liaison psychiatry. The service provided training and supervision to GPs and IAPT in addition to delivering psychological and pharmacological treatment.

    Over the years, the service/pathway has evolved and is currently commissioned by the respective CCGs in East and West Berkshire. The current pathway includes collaboration between IAPT, community liaison psychiatry and the hospital based psychological medicine service.

    One of the highlights of the current pathway is the effective collaboration between psychiatry and psychology which allows patients to access a biopsychosocial approach with case management and effective interagency liaison.

    The joint liaison psychiatry clinics with hospital specialties (currently neurology and respiratory medicine) ensure patients with medically unexplained symptoms can access psychological treatment with ease. Being co-located reduces stigma and normalises the use of psychological approaches in the treatment of physical symptoms thereby reducing iatrogenic harm.

    Professor Rona Moss-Morris* presentation.

    ( http://www.healthcareconferencesuk.co.uk/userfiles/1/Rona_Moss-Morris.pdf )

    *National Clinical Advisor to IAPT NHS England on MUS.

    Dr Abrar Hussain presentation.

    ( http://prezi.com/-frehfzgjp79/?utm_campaign=share&utm_medium=copy )


    [Ed: Warning: this last presentation has been produced on the Prezi platform. It zooms in and out and the type tracks around the screen and may induce visual overload/nausea.

    I note that Per Fink is listed as having been involved in training, in Berkshire, using the TERM model.]
     
    Last edited: Jan 13, 2017
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch

    Messages:
    3,036
    Likes:
    6,063
    UK
    Last edited: Jan 16, 2017
    Invisible Woman and Countrygirl like this.
  20. A.B.

    A.B. Senior Member

    Messages:
    3,750
    Likes:
    23,214
    Unbelievable. I'm so angry about this nonsense. They're exploiting the misery of our disease, claiming to help, yet then only doing the exact things (evidence free psychologizing) that are responsible for the catastrophic situation we find ourselves in, while simultaneously making it even harder for patients to get a correct diagnosis or find some symptom relief. They're waging war on us while speaking of empathy.
     
    Binkie4, Solstice, Lindberg and 15 others like this.

See more popular forum discussions.

Share This Page