Concern Regarding The Lack Of Meaningful Service User / Patient / Carer Involvement In The Development And Implementation Of The High Intensity Network (HIN) And Serenity Integrated Mentoring (SIM) Programme.

Nothing about us, without us! 

Serenity Integrated Mentoring (SIM) and similar interventions associated with the High Intensity Network (HIN) are being rapidly rolled out across NHS England. SIM is designed for people who have not committed a crime but are in contact with mental health services, are frequently at high risk of suicide and self-harm and deemed “high intensity users” of emergency services. SIM’s key intervention components include a co-ordinated withholding of potentially lifesaving treatment by multiple agencies (A&E, mental health, ambulance and police services)[1] and the “coercive”[2] approach of a police officer as an interventionist. 

Following our previous statement dated 05.05.21, which highlights concerns regarding the human rights and equalities implicationsof HIN / SIM, this statement will outline our concerns about the lack of meaningful service user involvement in the design, monitoring, and implementation of HIN / SIM via Academic Health Science Networks (AHSNs) and the adoption of this model of care into NHS trusts. We will also address the claims that HIN / SIM is ‘service user led’, and suggest that this is a very misleading and questionable attempt to add credibility and legitimacy.

Involving patients, service users, their family / carers and the public (often referred to as patient and public involvement or PPI) is a vital part of designing, developing, implementing and improving health and social care services with the lived experience, views, needs and benefits of those who use them at the centre. The NHS England Constitution states that the NHS is accountable to the public, communities and patients that it serves. The NHS value of ‘working together for patients’ clearly outlines that patients “come first in everything we do” so that “[we] fully involve patients, staff, families, carers, communities, and professionals inside and outside the NHS.”[3] Furthermore, the Constitution stipulates that:

“The system of responsibility and accountability for taking decisions in the NHS should be transparent and clear to the public, patients and staff.” [4]

In particular and with regard to NHS England and local Clinical Commissioning Groups (CCGs), the Handbook to the NHS Constitution for England explains that “NHS England and CCGs have a duty to promote the involvement of patients, their carers and representatives, in decisions, which relate to the prevention and diagnosis of illness in the patients, or their care or treatment (sections 13H and 14U of the NHS Act 2006, as inserted by the Health and Social Care Act 2012)”.[5]

Section 242 of the Handbook makes it clear that the duty to involve also extends to NHS trusts and foundation trusts. It states: “you have the right to be involved, directly or through representatives, in the planning of healthcare services commissioned by NHS bodies, the development and consideration of proposals for changes, in the way those services are provided, and in decisions to be made affecting the operation of those services […] NHS bodies have duties to make arrangements with a view to securing such public involvement in relation to the services for which they are responsible under section 13Q, 14Z2 and 242 of the NHS Act 2006.”[6]

Any major changes in service provision would ordinarily require more substantive involvement than that of one or two service users. This requirement for substantive involvement applies even at times of considerable pressure on NHS organisations. For example, when United Lincolnshire Hospitals NHS Trust declared a hospital site a COVID-19 free facility without adequate public involvement, this resulted in a judicial review, in which the judge found in the claimant’s favour.[7] According to Mr Justice Linden, meaningful public involvement pursuant to the section 242 duty must take place in the formative stages and in advance of a final decision; and the element of the duty at section 242(1B)(b) requires that the public have the opportunity to be involved in development of proposals and consideration of the proposals once in a final form. In this instance, the trust had failed to act in accordance with the law.[8]

In addition to the statutory duty to involve local patients and members of the public in health service development and commissioning before decisions on substantial changes are finalised, demonstrating meaningful patient and public involvement is increasingly mandatory for research which makes use of public funds. Thus, the National Institute of Health Research (NIHR)  puts PPI at the centre of its activities and proclaims that 

We require researchers who submit applications for NIHR funding to demonstrate patient, carer and public involvement and engagement in the development of and throughout the research study. We also have the same requirements for researchers who hold our training awards.”[9]

The NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.[10] Public involvement is intended  to be an active partnership between researchers and service users and the public  influencing and shaping research[11] with the aim of ensuring that the development and implementation of services and treatments is relevant to the needs, values and experiences of those who use health and social care services.

Given all of the above, what is the evidence for substantive PPI in the design, piloting,  implementation and evaluation of the HIN / SIM model? Various published reports on SIM outcomes state that “SIM is primarily driven by the needs of individual service users in local communities”[12] and assert that “The service user’s views and needs was core to any assessment process”.[13] However, there is no evidence of substantive involvement or even consultation with either communities or individual service users leading up to the design of the programme. Nevertheless, the SIM model of care is described as being “service user led”[14] or “led and co produced by people with lived experience”.[15] These descriptions appear to refer only to one individual, namely  Sgt Paul Jennings, the police officer who set up this model of care and who, according to his description on the NHS Innovation Accelerator site  “has over 20 years lived experience of clinical depression”.[16] In a number of published reports on SIM, Jennings explains that “it is the service user in me…that is fundamentally the person that has designed and driven SIM from day one.”[17] This presentation of SIM as a  user led intervention based on the lived experience of one individual is, at best, misleading. For an intervention or organisation to be ‘user led’ it requires service users to have had the majority say in decision making at every level[18] and it is acknowledged and understood that a non-hierarchical sharing of expertise and life experiences are developed to produce a collectively-agreed way forward.’[19] 

It is also important to emphasise that the HIN / SIM intervention is predominantly aimed at (and therefore will disproportionately affect) those given a label of a ‘personality disorder’.[20] However, based on information available in the public domain, Jennings’ experience of mental distress is that of clinical depression.[21] This is important in this case, not because service users must have precisely matching diagnoses to have meaningful involvement per se, but because individuals with a ‘personality disorder’ diagnosis experience  a significant amount of stigma and discrimination, particularly from medical professionals,[22] which can lead to many service users with this diagnosis struggling to access treatment.[23] It is therefore even more critical that, when services are designed for people given a diagnosis of a ‘personality disorder’, carefully thought out, meaningful involvement with those who face the daily discrimination from this diagnosis is undertaken on an ongoing basis from design to delivery of such services.[24] This is also explicitly mentioned as one of the key criteria in the NHSE guidance for Personality Disorder pathway development under the Community Mental Health Transformation Programme, which recommends “co-production from design to delivery with people from this cohort, recognising particular sensitivities around diagnostic labelling”.[25]

The need to have involvement of those with relevant lived experience is also recognised in some of the published reports on SIM: for example, the pilot report mentions a need to employ a “Service User Liaison Officer….someone who has ‘lived experience’ of the mental disorders that are most commonly associated with [high intensity use] behaviour”.[26] However, it is unclear whether such a “Liaison officer” was ever put in place and, if so, what the role entailed. 

As SIM has spread across England, substantially changing [27] the services provided to a large number of NHS service users, the requirements for meaningful involvement (not just slight adjustments to a decision made by commissioners or providers, but rather an opportunity to influence whether a change is made in the first place) are even clearer. However to our knowledge, the references to service user involvement in the SIM related literature are sporadic and vague. For example, in the Isle of Wight report, there is a reference to a “service user lead” who used to be a SIM service user.[28] The 2018 report on the implementation of SIM London recommends that in launching SIM at a new site “all the project team roles [should be] represented in the local project meetings. This includes service users and carers, communication and IG representatives, all of which are crucial to the successful implementation of SIM”.[29] Furthemore, “service user and carer representatives” are reported to have been invited to contribute to the design of the SIM London Service User leaflet.[30][31] While designing a service user leaflet is indeed a form of PPI, such involvement would seem to offer little, if any, opportunity for service users to influence core components of the SIM approach or have a say on whether it would be introduced within a particular area.The first explicit reference to a more substantive role for service users is in the 2020 report of the implementation of SIM London, where “Experts by experience” are acknowledged in the Health Innovation Network’s SIM London Strategic Delivery Board Governance Structure.[32] However, here too there are no further details on this role and no further information given. For example, we do not have clear information on who was involved, how they were selected and supported, what their involvement consisted in and whether they were representative of the demographic of patients being targeted by the intervention. 

Instead, the report presents us with a diagram[33] which puts “experts by experience” on the same level as police, ambulance, the High Intensity Network, mental health trusts and A&E, as though all are contributing equally to the SIM London Strategic Delivery Board. There is no further elaboration on what these service users are doing, let alone an attempt to address the  obvious power imbalances, structural inequalities or power to influence decision making within the project implementation. This lack of transparency, clarity and documentation of any significant involvement is problematic and suggests that this assertion that there is service user involvement at governance level could be misleading at best and a gross misrepresentation at worst. 

Importantly we also note that SIM conflates the joint decision making between police, medical professionals and service users when writing crisis response plans as ‘co-production’.[34] What they are describing here could be considered ‘shared decision making’ as outlined in the NICE guidelines – “the right to be involved in discussions with your health or care professional [and] making those decisions together.”[35] Conflating ‘shared decision making’ as ‘co-production’  demonstrates a lack of understanding of what co-production in healthcare actually entails . As NHS England and NHS Improvement and Coalition for Personalised Care explain ‘Co-production is a way of working that involves people who use health and care services, carers and communities in equal partnership; and which engages groups of people at the earliest stages of service design, development and evaluation.[36] Social Care Institute of Excellence guidance[37] indicates that the term is sometimes used at individual level but requires equal partnerships. It is also important to note that the “coercive”[38] nature of the SIM model of care could bring into question if this would even be considered as ‘shared decision making’.  

In addition to what we believe to be tokenistic involvement practice, the StopSIM coalition have been made aware of service user reports which suggest gatekeeping and biased selection of voices that will support the implementation of HIN / SIM, and an exclusion of those who might hold more critical views and/or who might be considered ‘high intensity users’ themselves. The overall lack of transparency and scarcity of information  on service user involvement in the national rollout of SIM make such reports from service users all the more worrying. The lack of references to meaningful PPI contributions within the documents presenting SIM design, outcomes and rollout does not instill any confidence that service users’ perspectives held any weight during the implementation of the SIM model of care across multiple NHS sites. This scarcity is especially notable since such involvement is actively encouraged in other settings and is usually considered an essential requirement for service redesign and research in mental health.

In compliance with the aims of the NHS Constitution, AHSNs tasked with facilitating the spread of treatment and service innovations regionally  acknowledge that greater and better patient and public involvement is “at the heart of today’s NHS”.[39] AHSNs describe themselves as “the only bodies that connect NHS and academic organisations, local authorities, the third sector and industry […] to facilitate change across whole health and social care economies, with a clear focus on improving outcomes for patients.”[40] These same networks have been critically involved in the spread and adoption of HIN / SIM as a ‘national priority’.[41]

We argue that the scarcity of evidence suggests  that the HIN / SIM team, alongside the AHSNs and NHSE,have failed at multiple stages within the design, development and implementation to meaningfully engage, include and support service user voices and those who support them. 

We are left with a number of urgent questions: 

Why was a model of care that is based on one person’s experience of mental distress and presented as service user led not rigorously analysed and critiqued? Especially when this person’s lived experience is fundamentally different from that of the target audience of the intervention in question? 

What evidence is there that the views of those most affected were sought at an early stage and concerns considered in a fair and reasoned way, before decisions were finalised?

Were diverse service users and carers actually ever consulted? Or have they been effectively silenced, their voices suppressed, if they did not fully support the intervention?

We want our voices to be heard and our lived experience to be valued. We want to be involved in, and have a meaningful say, about the services we use and the treatment we receive. 

Why are we still fighting to be heard?

In solidarity,

The #StopSim Coalition

Copied to:


Sir Simon Stevens, CEO – NHS England, Lord David Prior, Chair – NHS England, Claire Murdoch, National Mental Health Director – NHS England, 
Martin Hewitt, Chair – National Police Chiefs’ Council, Sir Tom Winsor, Her Majesty’s Inspectorate of Constabulary and Fire and Rescue Service.

References:

  1. SIM and High Intensity Network Business Case [Internet], p. 7. Available from: https://highintensitynetwork.org/img/resources/SIM_and_High_Intensity_Network_-_Business_Case_(Commissioner)_v4.docx [accessed 25 April 2021].
  2. Paul Jennings. What is SIM and the High Intensity Network? [Internet]. 2019 Mar 26; Daresbury Park Hotel. Slide 30 of 65. Available from: https://www.slideshare.net/InnovationNWC/paul-jennings-high-intensity-network-sim [accessed 25 April 2021].
  3. The NHS Constitution for England. Department Of Health and Social Care [Internet]. 2021. Available from: https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england [accessed 5 May 2021]
  4. The NHS Constitution for England. Department Of Health and Social Care, point 7  [Internet]. 2021. Available from: https://www.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england [accessed 5 May 2021]
  5. Handbook to the NHS Constitution. Department Of Health and Social Care [Internet]. 2021. Section ‘Rights and pledges covering involvement in your healthcare and the NHS’. Available from: https://www.gov.uk/government/publications/supplements-to-the-nhs-constitution-for-england/the-handbook-to-the-nhs-constitution-for-england [accessed 5 May 2021].
  6. Handbook to the NHS Constitution. Department Of Health and Social Care [Internet]. 2021. Section ‘Rights and pledges covering involvement in your healthcare and the NHS’. Available from: https://www.gov.uk/government/publications/supplements-to-the-nhs-constitution-for-england/the-handbook-to-the-nhs-constitution-for-england [accessed 5 May 2021].
  7. Getting your ducks in a row on consultation: section 242 NHS Act, urgency and Covid-19. Heath and Care Update [Internet]. 2021. Available from: https://www.health-and-care-update.co.uk/governance-and-board-issues/ [accessed 5 May 2021].
  8. Planning, assuring and delivering service change for patients. NHS England [Internet]. 2018. Guidance on service change provides further information on requirements for involvement before any decision is finalised. Available from: https://www.england.nhs.uk/wp-content/uploads/2018/03/planning-assuring-delivering-service-change-v6-1.pdf [accessed 5 May 2021].
  9. How we involve Patients, Carers and the Public. National Institute for Health Research. Available from: https://www.nihr.ac.uk/about-us/our-contribution-to-research/how-we-involve-patients-carers-and-the-public.htm [accessed 9 May 2021].
  10. Engage patients to help shape your clinical research. National Institute for Health Research. Available from: https://www.nihr.ac.uk/explore-nihr/industry/pecd.htm [accessed 9 May 2021].
  11. Briefing notes for researchers – public involvement in NHS, health and social care researchers. National Institute for Health Research [Internet]. 2021. Available from: https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371 [accessed 5 May 2021].
  12. Paul Jennings. SIM Project Pilot Report 2013-2015 [Internet]. Chapter 14, ‘Collaborative Working’. p. 75. Available from: https://highintensitynetwork.org/img/resources/SIM_Pilot_Report_2013.doc [accessed 9 May 2021]
  13. Sergeant 20261 Paul Jennings. Specialist Support For High Intensity Mental Health Crisis – Developing a National Research Network [Internet]. p. 26. Available from: https://s16878.pcdn.co/wp-content/uploads/2016/07/SIM-NETWORK-9-0-Protected-Email-Version-1.doc [accessed 5 May 2021].
  14. Equalities Impact Assessment. Service Change Equality Analysis. Oxleas NHS Foundation Trust [Internet]. p. 1. Hyperlinked on p. 5 of Aileen Jackson, Josh Brewster. The Implementation of SIM London: Sharing best practice for spread and adoption [Internet]. 2018 Jun. Available from: The-Implementation-of-SIM-London-Report_HIN_-_SOUTH_LONDON_AHSN.pdf    
  15. This statement is part of a rolling heading  on the SIM/HIN homepage. Available from: https://highintensitynetwork.org/ [accessed 9 May 2021].
  16. NHS Innovation Accelerator: Paul Jennings [Internet]. Available from: https://nhsaccelerator.com/fellows-and-mentors/paul-jennings/ [accessed 9 May 2021].
  17. Sergeant 20261 Paul Jennings. Specialist Support For High Intensity Mental Health Crisis: Developing a National Research Network [Internet]. p. 12. Available from: https://s16878.pcdn.co/wp-content/uploads/2016/07/SIM-NETWORK-9-0-Protected-Email-Version-1.doc [accessed 9 May 2021].
  18. Briefing: Service User Involvement in the delivery of mental health services. National Survivor User Network & Together for Mental Health [NSUN]. p. 2. Available from: https://www.together-uk.org/wp-content/uploads/downloads/2014/06/Service-User-Involvement-briefing.pdf [accessed 9 May 2021].
  19. Briefing: Service User Involvement in the delivery of mental health services. National Survivor User Network & Together for Mental Health [NSUN]. p. 2. Available from: https://www.together-uk.org/wp-content/uploads/downloads/2014/06/Service-User-Involvement-briefing.pdf [accessed 9 May 2021].
  20. Paul Jennings, Catherine B. Matheson-Monnet.  Multi-agency mentoring pilot intervention for high intensity service users of emergency public services: the Isle of Wight Integrated Recovery Programme. J Criminol Res Policy Pract. 2017 Jan 1;3(2):105–18;  Paul Jennings. SIM Project Pilot Report 2013-2015 [Internet]. Available from: https://highintensitynetwork.org/img/resources/SIM_Pilot_Report_2013.doc [accessed 9 May 2021].
  21. Sergeant 20261 Paul Jennings. Specialist Support For High Intensity Mental Health Crisis: Developing a National Research Network [Internet]. p. 10. Available from: https://s16878.pcdn.co/wp-content/uploads/2016/07/SIM-NETWORK-9-0-Protected-Email-Version-1.doc [accessed 9 May 2021].
  22. S. Veysey. People with a borderline personality disorder diagnosis describe discriminatory experiences. Kotuitui: New Zealand Journal of Social Sciences Online. 2014 Jan 2;9(1):20-35. 
  23. L. Sheridan Rains, A. Echave, J. Rees, H. R. Scott, B. Lever Taylor, E. Broeckelmann, T. Steare, P. Barnett, C. Cooper, T. Jeynes, J. Russell. Service user experiences of community services for complex emotional needs: A qualitative thematic synthesis. 2021. PloS one. Apr 29;16(4):e0248316. p. 21.
  24. Peter Beresford. Beyond the usual suspects: Towards inclusive user involvement: Findings. Shaping Our Lives. 2013. Available from: https://shapingourlives.org.uk/wp-content/uploads/2015/03/BTUS-Report.pdf [accessed 9 May 2021].
  25. Annexes: Guidance to help development of 2021/22 proposals for adult and older adult community mental health (CMH) transformation funding. NHS England and NHS Improvement. 2021. [Document available on request].
  26. Paul Jennings. SIM Project Pilot Report 2013-2015 [Internet]. Chapter 15, ‘Service User Liaison’. p. 79.  Available from: https://highintensitynetwork.org/img/resources/SIM_Pilot_Report_2013.doc [accessed 9 May 2021].
  27. For information relating to ‘substantial change’ see Substantial Variations and Developments of Health Services. Health Scrutiny Support Programme [Internet]. 2005. p. 12. Available from: https://democracy.leeds.gov.uk/documents/s9540/Extracts%20cfps%20guidance%20document.pdf [accessed 10 May 2021].
  28. SIM Update Report, 2015-2017. High Intensity Network [Internet]. 2017. Slide 4. Available from: https://highintensitynetwork.org/resources [accessed 9 May 2021].
  29. Aileen Jackson, Josh Brewster. The Implementation of SIM London: Sharing best practice for spread and adoption [Internet]. 2018. ‘Identification of SIM cohort’. p. 4. Available from: https://highintensitynetwork.org/img/resources/The-Implementation-of-SIM-London-Report_HIN_-_SOUTH_LONDON_AHSN.pdf  [accessed 4 May 2021].
  30. Aileen Jackson, Josh Brewster. The Implementation of SIM London: Sharing best practice for spread and adoption [Internet]. 2018. ‘Identification of SIM cohort’. p. 6. Available from: https://highintensitynetwork.org/img/resources/The-Implementation-of-SIM-London-Report_HIN_-_SOUTH_LONDON_AHSN.pdf  [accessed 4 May 2021].
  31. SIM London Service User Leaflet [Internet]. Available from:  https://highintensitynetwork.org/img/resources/SIM_London_Service_User_Leaflet.pdf
  32. SIM London: Support for a better life. Health Innovation Network, South London [Internet]. 2020. p. 9. Available from: https://healthinnovationnetwork.com/wp-content/uploads/2020/10/SIM-London-End-of-Year-Report-2020FINAL.pdf [accessed 5 May 2021].
  33. SIM London: Support for a better life. Health Innovation Network, South London [Internet]. 2020. p. 9. Available from: https://healthinnovationnetwork.com/wp-content/uploads/2020/10/SIM-London-End-of-Year-Report-2020FINAL.pdf [accessed 5 May 2021].
  34. NHS Innovation Accelerator. Understanding how and why the NHS adopts innovation: Serenity Integrated Mentoring in Surrey [Internet]. 2018. Available from: https://nhsaccelerator.com/understanding-nhs-adopts-innovation-serenity-integrated-mentoring-surrey/ [accessed 9 May 2021].
  35. Shared Decision Making. NICE [Internet]. Available at: https://www.nice.org.uk/about/what-we-do/our-programmes/nice-guidance/nice-guidelines/shared-decision-making [accessed 9 May 2021].
  36. A Co-Production Model. Coalition for Personalised Care. Available from:  https://coalitionforpersonalisedcare.org.uk/resources/a-co-production-model/ [accessed 9 May 2021].
  37. Co-production in social care: what it is and how to do it – At a glance. SCIE [Internet]. 2015. [Internet] Available from: https://www.scie.org.uk/publications/guides/guide51/at-a-glance/ [accessed 9 May 2021].
  38. Paul Jennings. What is SIM and the High Intensity Network? [Internet]. 2019 Mar 26; Daresbury Park Hotel. Slide 30 of 65. Available from: https://www.slideshare.net/InnovationNWC/paul-jennings-high-intensity-network-sim [accessed 9 May 2021].
  39. We know we need genuine public involvement in healthcare. Why are we still getting it wrong? Health Innovation Network [Internet]. 2019. Available from: https://healthinnovationnetwork.com/insight/we-know-we-need-genuine-public-involvement-in-healthcare-why-are-we-still-getting-it-wrong/ [accessed 5 May 2021].
  40. About Academic Health Science Networks. The AHSN Network [Internet]. 2019. Available from: https://www.ahsnnetwork.com/about-academic-health-science-networks [accessed 5 May 2021].
  41. Serenity Integrated Mentoring. The AHSN Network [Internet]. 2019. Available from: https://www.ahsnnetwork.com/about-academic-health-science-networks/national-programmes-priorities/serenity-integrated-mentoring [accessed 5 May 2021].