Clare Knighton: The challenges of co-production- A Peer Support Workers Perspective

It’s really important that we as service users and patients can talk about service experiences, share common ground and negotiate service improvements together. This, to me, is the essence of co-production: making meaningful change together. However, to do this well takes time and effort all round.

Co-production isn’t, or at least shouldn’t be, a tick box exercise and whilst it may add more time onto a project, the outcome of a better fit-for-purpose service is worth the effort.Often there is a lack of time for people implementing new changes to circulate information about involvement opportunities. True co-production takes time, detailed conversations, time to ‘think’ (often left out of NHS change projects) and just general involvement and communication.

I believe that many people do want to involve patients and service users, however, it can sometimes appear tokenistic – usually due to lack of time. For my own experiences I feel fortunate to have been involved fully in several changes that have taken place in my Trust, however, I know there is always more to do.

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I sit on the community engagement panel and have seen first-hand how our involvement has given fresh thinking and ideas to upcoming projects. Our ‘fresh pair of eyes’ often uncover things that haven’t been thought about which clearly help bring about more robust, patient focused changes.

Co-production will be on the NHS’s agenda more and more and will eventually become ‘business as usual’, but until then, we need to think clearly about involving those whom the service directly affects – ‘no decision about me, without me.’

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Clare Knighton

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Clare Knighton is an accredited peer support worker based in Worcestershire.

@knightonstar

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The cost of persuasive design: digital media use and ADHD

This longitudinal study of American teenagers by Ra and colleagues, sought to explore the association between digital media use and symptoms of Attention Deficit Hyperactivity Disorder (ADHD), as well as explore the relationship between high frequency digital media use and ADHD symptom severity.

The study is topical as all parents worry about the relative amount of screen time versus green time that their children engage in, however on the basis of this study should we be concerned about the relationship between digital media use and an enhanced risk of later ADHD?

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All parents worry about the relative amount of screen time versus green time.

Ra and colleagues study highlights the urgent need to ensure that the design of digital services and products is appropriate for children and young people. Their longitudinal study shows a significant (but modest) association between higher frequency of digital media use and subsequent symptoms of ADHD when measured with Self-Report Form DSM-IV.

The study seems to indicate that the likelihood of developing ADHD symptoms among a longitudinal (24 months) cohort of 15 and 16 years olds (that showed no significant ADHD symptoms at baseline) can increase as a result of high frequency social media activities. While more evidence is needed to understand the impact of persuasive design strategies on children and young peoples’ social, mental and physical development, studies such as this illustrate the potential negative outcomes of excessive use.

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This longitudinal study shows a significant (but modest) association between higher frequency of digital media use and subsequent symptoms of ADHD.

Pervasive design

Pervasive design, a term coined by psychologist BJ Fogg, combines the theory of behavioural design with computer technology (Fogg, 2002). Behavioural design uses a system of rewards and punishments to determine human behaviour patterns. Both persuasive and behavioural designs can be used to manipulate human behaviour so that users act in the commercial interest of others (Kidron et al, 2018). Persuasive design strategies are deployed for commercial purposes to keep users online.

It is neither ethical or reasonable to design services to be compulsive and then worry about the impact that persuasive design may have on children and young people’s mental health due to smart device overuse. Internet Matters (2015) revealed that in the UK, 40% of secondary school-aged children and 34% primary school-aged children “feel worried that they are addicted to the internet” (Clark et al, 2015).

Often British children and young people display absolute devotion to their devices, on the one hand saying they “could not do without their mobile phone for a day” (Murgia, 2017), that they are “best friends” with their phone or don’t feel “right without it”. At the same time, they report being “addicted”, “attached”, “distracted”, “obliged”, “always consuming”, having “no control” and feeling “panicked” (Coleman et al, 2017).

Common Sense Media (2016) found that one third of American children aged between 12 and 18-year-old struggled to cut down time spent on devices; half said they felt “addicted to their mobile devices”.

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Persuasive design strategies are deployed for commercial purposes to keep users online.

Persuasive strategies

The tension between being governed by and devoted to their devices is, in part, a result of the persuasive strategies baked into the digital services that children and young people use. These include:

  • Excessive notifications such as buzzes, pings and all other non-specific alerts
  • Lack of save buttons (so users are forced to stay online to complete a task)
  • Software upgrades that automatically enhance or switch persuasive design features back on
  • Personalised services design to extend use among many others
  • Reward features that release dopamine
  • The need to use social media in order to be social or popular
  • Highly emotive content

All of the above create a digital environment that does not meet the needs of children and young people.

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Digital technology is designed to persuade young people to use it as much as possible.

Monitoring and addressing problems with digital media

Whilst acknowledging the great potential of the digital world, and recognising the value of responsive usage, the technology sector should monitor and address the effects of their products on children and young people and recognise that the options provided to parents and teachers to address digital media overuse are inadequate an ineffective. These include:

  • Over simplistic rules
  • Misconceptions
  • Exaggerated claims
  • Widespread uncertainty that may limit opportunities and creativity.
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We need better ways to monitor and address overuse of digital technology.

Digital media use in young people with ADHD

Digital media use for children with ADHD presents a unique threat that non-ADHD children do not face to the same extent. It is clear that sustained attention is poorer in children with ADHD compared to typically developing children and reinforcement improves sustained attention (Bubnik et al, 2015).

Taken together these findings suggest that children with ADHD may be even more likely to seek out the immediate and intense reinforcement opportunities available via digital media, because they are less likely to find the reinforcement opportunities in their offline life.

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Young people with ADHD are likely to be more susceptible to the intense reinforcement opportunities available via digital media.

Limitations

In addition to the three study limitations already identified by the Ra and colleagues (i.e., ADHD symptom scale, media use measure validity, and sampling), other issues need addressing:

  • The authors do not reflect on the high attrition rate (almost 50%) or the large proportion of participants (48.2%) eligible for subsidised lunch, its impact on sample representativeness and overall results
  • In addition, the authors do not display data regarding the 13th digital media use index score (i.e., Online shopping or browsing).

While we welcome longitudinal studies that explore the impact of digital social media use on children and young people’s mental health and wellbeing, we need to remain vigilant as to the complexity of multiple confounding influences that may be contributing to the Ra and colleagues’ study results.

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Longitudinal studies suffer from problems with confounding, so better evidence is needed before we can be sure of the links between digital media and ADHD.

Links

Primary paper

Ra CK, Cho J, Stone MD, et al. (2018) Association of Digital Media Use With Subsequent Symptoms of Attention-Deficit/Hyperactivity Disorder Among AdolescentsJAMA. 2018;320(3):255–263. doi:10.1001/jama.2018.8931

Other references

Fogg BJ (2002). Persuasive Technology: Using Computers to Change What We Think and DoUbiquity, Volume 2002 December, Article 5.

Kidron B, Evans A, Afia J (2018) Disrupted Childhood. The Cost of Persuasive Design (PDF).

Clarke B, Atkinson R, Svanaes S (2015) How Children Use Mobile Devices at School and at Home (PDF). London: Techknowledge for Schools. September 2015, p4.

Murgia M. (2017) Secret lives of children and their phonesFinancial Times, 6 October 2017.

Coleman S, Pothong K, Perez Vallejos E, Koene, A (2017). The Internet on Our Own Terms: How Children and Young People Deliberate about their Digital Rights (PDF).

Technology Addiction: Concern, Controversy and Finding a Balance. Common Sense Media. Research Brief, May 2016.

Bubnik, M.G., Hawk, L.W., Pelham, W.E., Waxmonsky, J.G.Rosch, K.S. (2015) Reinforcment enhances vigilant among children with ADHD: Comparisons to typically developing children and to the effects of Methylphenidate. Journal of Abnormal Child Psychology, 43, 149 – 161.

Photo credits

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This post first appeared on the National elf service.

It was written by:

Dr Elvira Perez Vallejos is an Associate Professor of Digital Technology for Mental Health and Digital Technologies at Nottingham Biomedical Research Centre (Division of Psychiatry and Applied Psychology, Faculty of Medicine).

Dr David Daley is Professor of Psychological Intervention and Behaviour Change in the Faculty of Medicine & Health Sciences at the University of Nottingham.

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Happy Holidays

Dear reader,

As 2018 draws to a close we would like to take this opportunity to thank you for your support.  We’ve had some great content this year and as always it’s been a privilege to be able to host the research, experience and opinions of our wonderful collaborators & contributors. We hope you have a brilliant festive season and look forward to sharing new content with you in January.

 

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Remember: if you end up with a little time to spare over the holiday season and you would like to write something, please get in touch as we would love to hear from you.

Happy holidays!

IMH blog team

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Elvira Perez Vallejos: Digital technology will transform the role of NHS clinical staff

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A blog by Elvira Perez Vallejos, Associate Professor of Digital Mental Health, Mental Health and Technology theme.

I recently attended a workshop at the Royal College of Psychiatrists to discuss and reflect on the impact of digital technology on the future of mental healthcare. This workshop was part of the Topol review which is aiming at preparing the NHS healthcare workforce to embrace current and future digital developments for mental healthcare.

This review is being led by Dr Eric Topol, an American cardiologist, geneticist, and digital medicine researcher, author of ‘The patient will see you now’ and ‘The creative destruction of medicine’ among other more clinical textbooks.

During the workshop, attendees were distributed into heterogeneous groups. My table included several mental health practitioners (three psychiatrists and a mental health nurse), a policy maker and a machine learning expert. We were asked to reflect on these questions:

1. How will digital technologies change roles and functions of clinical staff?
2. What are the implications for the skills required?
3. What will this mean for the selection, education and training of staff?

To my surprise, I did not have to defend or argue about the need to promote a basic understanding of how the digital economy works and its implications for users’ data privacy and security, the dangers of secondary data being sold in data markets, harm related to self-diagnosis and self-treatment. Nor did we discuss the use of unreliable smartphone apps (see Bauer 2017 for more details), the risks of persuasive design, or the need for human-centred design and co-production of new tech for mental health engaging and involving clinicians, service users and developers.

We all agreed about the need for a cultural shift in which data ethics and responsible research innovation (RRI) drives tech advances. One of the barriers that kept appearing during our discussions on the effective adoption of digital tech was the software licence issue.

I was not aware that NHS Trusts have to pay a substantial amount of money in order to be able to offer specific treatments to service users or analyse health data. If software were instead developed in-house or with taxpayer money, this should be open access and freely available within the NHS.

We also discussed the lack of research evidence to help us understand current and future relationships developed towards machines (i.e. avatars, robots, virtual human therapists and chatbots) designed to support or monitor peoples’ mental health. These new attitudes and human-machine relationships have a generational effect and younger people may place more or less trust on tech outcomes than older people.

This is an aspect that needs more research, specifically understanding the implications of these new attitudes on mental healthcare.

It was agreed that technology advances are moving fast; too fast for health services to cope with. And tech innovation cannot be slowed down and NHS services cannot speed up. This is a problem that will influence how training is delivered and medical curricula is updated.

Digital technology will force a rapid transformation of the roles and functions of clinical staff who will be expected to adapt quickly and cope with a constant flow of new solutions.

Bringing the digital into the NHS will require the training of staff on digital literacy, basic maths and statistics (e.g. to understand mental health algorithm-mediated outputs), and to become more multidisciplinary than ever before. The data analyst or natural language processing developer working alongside clinicians may become the expected norm.

I really enjoyed the whole discussion but what struck me the most was the realisation that ‘the digital’ can actually revolutionise psychiatric diagnosis. It was argued that mental health distress and difference is more fluid and dynamic than the DSM (Diagnostic and Statistical Manual of Mental Disorders) codes, a product influenced by the pharmaceutical industry.

Digital tech for mental health seems to highlight the issues embedded within the current diagnostic system and may offer an alternative perspective that can influence the future of psychiatry.

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This post was originally hosted on the Nottingham Biomedical Research Center pages.

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Why celebrate World Mental Health Day?

Interview and commentary from Mercè Santos Mir.

Every year #MentalHealthAwareness day steps into the limelight for its annual day of recognition, but has  it ever truly left? Mental health awareness is increasingly becoming a daily conversation between friends, family, colleagues and health service providers across the country and abroad – breaking down a little piece of the taboo topic each and every time we discuss anxiety, depression, schizophrenia and all the other conditions that fall under the mental health umbrella.

We caught up with our Exhibitions Curator at the Institute of Mental Health , Mercè Santos Mir, who has worked closely with artists who deal with issues of mental health within their practice, who put theirs and others’ inner-experiences on canvas for all to see, to raise awareness and break down the barriers we face in the introverted dark of battling against a mental health condition.

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Not many people know that I’ve been working in collaboration with the Institute of Mental Health (IMH) curating temporary exhibitions since 2014. My first contact with the IMH was after they invited artist Rachel Oxley to show a retrospective of her work. At the time Rachel was finishing her MFA at Nottingham Trent University and I was also finishing my MA in Curation at the same university. I had grown very close to Rachel during our studies while supporting each other through the rollercoaster of emotions that a postgrad can become. We were there for each other, at our best and at our worst. Rachel is a Nottingham based artist who deals with mental health subjects in her work, drawing most of her inspiration from her own experience living with dissociative identity disorder (DID). DID is a complex psychological condition caused by many factors, including severe trauma during early childhood. Due to the nature of my studies and our friendship, Rachel approached me for support while putting on her exhibition at the IMH.

Since then I have worked with artists that use all sorts of media; photography, painting, sculpture, ceramics and many other, in artistic ways to share and explore their experiences with mental health. From conditions as common as depression or anxiety to more complex medical conditions like DID or schizoaffective disorder, I have learned that each of us have our own way to overcome and move forward. I have learned that artistic practices help us channel emotions and thoughts, and that helps a great deal in the process of recovery.

This year’s World Mental Health Day fell on the 10th October. To commemorate this we celebrated the launch of the exhibition The Twisted Rose and Other Lives by artist Andy Farr, which will run until the 1st March 2019. I worked with Andy to curate a thought-provoking exhibition focused on post-traumatic stress disorder (PTSD). Post-traumatic stress is more common than we think. Andy claims that his own traumatic experiences were much less severe than those who have suffered abuse or been involved in war conflicts, nevertheless they had a profound impact on his life, leaving his career in marketing research and advertising to become a full-time artist. With help from the IMH Andy has been meeting with other people who have experience post-traumatic stress to create a series of paintings that brings their experiences to life.

Andy says: “My hope with this exhibition is to show what it is like to suffer and recover from mental health problems, to raise awareness and consciousness of the issues surrounding trauma, and to provide positive therapeutic outcomes for those directly involved.”

It’s important to give visibility to artists like Rachel or Andy, and to support the work that organisations like the IMH and many others do in the city, to appreciate the space they provide, because it’s priceless.

While World Mental Health Day is a great opportunity for global mental health education, awareness and advocacy,  we should be listening to those voices every day, in order to break down the social stigma around mental health. Let’s make every day World Mental Health Day.

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If you or someone you know is struggling with mental health, please call the NHS on 111 or visit NHS Every Mind Matters.

 This piece has been reposted with consent after first appearing here

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Community Treatment Orders and Conditional Discharge in the Court of Appeal

Commentary written by professor Peter Bartlett

Sec State (Justice) v MM; Welsh Ministers v PJ, [2017] EWCA Civ 194

 This was the conjoined appeal of two cases, concerning ostensibly similar programmes regarding release from hospital of people with mental health problems who require continued care in the community.

 MM concerned conditional discharge under section 73.[1]  This mechanism affects people detained through the criminal provisions of the MHA (‘Part III patients’) who are subject to a ‘restriction order’ (s 41) – that is, they can only be released by the Secretary of State or, as in this case, a review tribunal.  A conditional discharge may be made when the tribunal considers that the criteria for ongoing psychiatric detention are no longer met, but where it considers that appropriate that should remain liable to be recalled for further treatment.  As the name suggests, the order allows conditions to be placed on discharge – typically determining where the individual will live, that he or she will comply with prescribed treatment, what medical supervision he or she will receive, that he or she will refrain from use of alcohol or drugs, and sometimes that he or she will not meet with former associates, or not go into particular geographic areas (eg., not near the home of a former victim, or not to go near schools, if the index offences involved children).

 The other appeal, PJ, concerned community treatment orders (CTOs) (s 17A-E).  These apply to detained people who can be released directly by their responsible clinicians, that is, people who are civilly detained or detained under Part III patients but not subject to restriction orders.  A CTO can be imposed by the clinical team when person requires ongoing psychiatric treatment, but such treatment does not require him or her to continue to be detained in hospital.  The CTO specifies conditions with which the individual must comply, with a view to ensuring that he or she receives the relevant medical treatment, or for the protection of the patient or broader society.  In practice, the conditions can look very similar to those under a conditional discharge.

 Neither of these outcomes removes the individual’s right to consent to treatment, but in both cases that becomes a largely illusory right:  the individual can be brought back to hospital in the event of non-compliance with the relevant conditions, and forcibly treated there (s 17E, 74(4) for CTOs; 42(3)-(4) for conditional discharge).  Indeed, the individual may be recalled to hospital, and the discharge/CTO revoked if circumstances warrant, even if he or she has been entirely compliant with the conditions (s17B(7), 42(3)).  A brief recall under the CTO to impose treatment is not subject to review, but full  revocation of the CTO/discharge can be challenged before a review tribunal (s 17G(5), 75(1)(a)).

 The appeals concern the availability of these programmes if the conditions constitute a ‘deprivation of liberty’ under Article 5 of the ECHR.  The issue arises out of HL v UK (2005) 40 EHRR 32, a case concerning an individual admitted to a psychiatric ward with fairly intensive supervision.  If he had made any attempt to leave, he would have been detained under the MHA; but he had a sufficiently profound disability that he was unable to make a decision whether or not to remain in hospital, and so that compulsion was never required. That said, his carers from his community placement were precluded from visiting out of a concern by hospital that if he saw them, he would want to go home with them. 

 The Strasbourg court held in HL that this was a deprivation of liberty triggering Article 5, requiring appropriate safeguards to be put in place, holding in part that ‘the right to liberty is too important in a democratic society for a person to lose the benefit of Convention protection for the single reason that he may have given himself up to be taken into detention’ [HL, para 90].  That creates the issue in the present appeals:  since neither set of statutory provisions expressly allows for conditions that deprive the individual of liberty, can they include conditions of that level of intensity?

 In the PJ appeal, the Court of Appeal decides that CTOs can be used in this way.  It holds that CTOs create a mechanism to provide an option for the individual less restrictive than hospitalization, while still meeting the needs of society:  by ‘necessary implication’ [para 51] the statute must have meant this to include full range of options less restrictive than hospitalization, whether or not they involved a deprivation of liberty.  Procedural safeguards were in place to satisfy Article 5, through tribunal challenges to revocations and, periodically, to the continuation of the CTO itself (s20A(3)). 

 If we are to have CTOs at all – an open question, since their efficacy is hotly disputed – this approach makes sense.  The requirement that the CTO be a less restrictive measure than hospitalization is welcome.  From a human rights perspective, it is disappointing that the Court does not further explore the difficulty that persons subject to CTOs can only challenge the continuation of the CTO as a whole, rather than the individual conditions to which they are subject.  Depending on how litigation flowing from X v Finland (application no. 34806/04, judgment of 19 November 2012) develops, this may prove a serious issue in the future; but overall, the approach to CTOs makes some sense.

 The appeal in MM regarding conditional discharges is profoundly unconvincing by comparison.  It notes that there is nothing in the statutory scheme that would allow the tribunal or the Sec State to detain someone outside hospital (as there is none for CTOs), but it does not explore an interpretation based on ‘necessary implication’.  Instead, it states fairly baldly that since the statute does not provide the tribunal with a power under s 41 to deprive of liberty (unsurprisingly, since the wording of the section significantly antedates the relevant Strasbourg jurisprudence), that is an end to the matter:  the power claimed for the tribunal would otherwise be ‘unconstrained, without criteria, time limits or analogous protections’ [20].  It had been alleged that MM was consenting to the arrangements; but the court doubted that a person in a psychiatric hospital could meaningfully consent in these circumstances, and relying on HL held that rights to liberty could not in any event be given up in this fashion.  Conditional discharges therefore could not include provisions that would deprive an individual of liberty.

 The form of this argument is bizarre.  MM was successful at the Upper Tier Tribunal in getting his conditional release.  Essentially, the Sec State is therefore pleading MM’s Article 5 rights to overturn a case that MM won and the Secretary of State lost, consigning MM to a more restrictive régime in the name of his right to liberty.  The fact that his apparently competent consent is rendered immaterial is the final insult.  The relevant part of the HL decision applies to people who are ‘legally incapable of consenting to, or disagreeing with, the proposed action’ [HL at 90].  MM was apparently neither of these.  It is his Article 5 rights that are at issue; it is highly questionable how this decision can be seen to progress or uphold those rights.

 The Court’s reading of the statutory framework is not convincing.  The obvious intent of the conditional discharge provisions is to allow a phased move from the intensity of inpatient services to freedom in the community, presumably as a joined up process.  It is not credible to say that the legislature intended to insert a chasm in that, so that people are required to go much closer to ‘cold turkey’ when they leave (sometimes very controlling) hospital settings.  Such an approach would be setting people up to fail, and particularly if failure may mean the repetition of some of the rather serious crimes that got the individuals onto restriction orders in the first place, it is difficult to imagine that this was the intent of the legislature.

 The Court is certainly right that the safeguards surrounding conditional discharge should be strengthened.  For example, if the conditions imply a deprivation of liberty, the fact that two years may pass between challenges to the conditions will constitute an ECHR violation: Herczegfalvy v Austria (1992) 50 EHRR 437 at para 77.  The response to that must be to insist on human rights compliant safeguards, however, rather than hospitalization, since the hospitalization creates new and different ECHR violations.  It is now clear that detention under Article 5 must be the least restrictive option that meets the individual and social interest:  Tupa v Czech Republic Application no. 39822/07, judgment of 26 August 2011, para 48.  Insofar as the deprivations of liberty under conditional discharges are less restrictive than compulsory hospitalizations, it is difficult to see that this requirement will be met.

 Lurking in the background of MM is the question of what constitutes a deprivation of liberty.  The Court adopts Cheshire West and Cheshire County Council v P [2014] AC 896 on this point, and that case in turn adopts a test of whether the individual is ‘under continuous supervision and control’, and ‘not free to leave’ (Cheshire West para 49).  Cheshire West is a case in the post-HL jurisprudence, and in that context makes good sense:  when the individual’s actions are controlled for example by a guardian, and there is no formal order or other legal control directed to the individual’s control by the State, this jurisprudence determines when Article 5 be understood to engage.

 It is fair to ask whether the same test is appropriate when the individual is already squarely controlled by law relevant to Article 5, as here:  prior to discharge, MM was subject to formal detention under Part III of the Mental Health Act, and the conditional discharge is very much part of that overarching scheme.  For Article 5 purposes, can a staged release such is at issue here really be separated off from that original detention?  The overarching purposes of Article 5 is, after all, to ensure that state actions relevant to liberty do not occur in an arbitrary fashion: see, eg., Medvedyev v France (Application 3394/03, Judgment of 29 June 2010 (GC), para 73).  Conditional discharges are legal orders that set conditions which, if breached, can result in the individual being locked up and forcibly medicated.  Intuitively, the establishment of those conditions are precisely the sort of thing that require guarantees against arbitrariness.  Indeed, the overarching power of the Secretary of State to revoke the conditional discharge even if no conditions are breached places the individual in a position of vulnerability at the hands of the state which surely also should be subject to protections from arbitrariness, and therefore raise Article 5 issues.  This reading is entirely consistent with, for example, Ashingdane v UK (1985) 7 EHRR 528, for example, where a psychiatric patient was within the scope of Article 5 even though on an open ward and free to leave hospital as he pleased from Monday to Wednesday as long as he returned at night, and free to leave the hospital entirely from Thursday to Sunday – hardly the ‘continuous supervision and control’ of Cheshire West.  It is also consistent with the approach of the UK courts regarding control orders under the Prevention of Terrorism Act:  see Secretary of State (Home Department) v JJ [2007] UKHL 45.  If this is correct, it may well be the case that a considerable proportion of people – conceivably all – who would be considered for conditional release will be deprived of liberty within Article 5.  The Court of Appeal decision would have a very broad effect indeed. Again, it is difficult to imagine that this can have been the intent of Parliament.

 Both MM and PJ have been appealed to the Supreme Court.   Perhaps surprisingly, given the similarity of the issues and the joint decision of the Court of Appeal, they were not heard together:  MM was argued in July 2018, and PJ will be argued in October 2018.  

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[1]All citations in this note are to the Mental Health At 1983, as amended.

Peter Bartlett is a Nottinghamshire Healthcare NHS Trust Professor of Mental Health Law.

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The Elder Interview: Dr Neil Chadborn, Research Fellow, University of Nottingham

Integrating Care: Finding Commonality Between Organisations to Implement Best Practise

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Neil Chadborn, Zvezdan Bozinovski Photography.

Neil Chadborn’s research focuses on inter-professional and inter-organisational aspects of integrated care for older people. He is currently involved in the PEACH project, to understand how a Quality Improvement Collaborative (QIC) can help organise healthcare services in care homes – and has an Alzheimer’s Society Knowledge Exchange Fellowship, exploring how services within a community can work together and with people living with dementia. We talked to him about the challenges of providing truly integrated care and why networks may provide a more inclusive way to enable people to access support according to their needs.

Why are the inter-professional and inter-organisational aspects a key research focus for you?

My background is in public health research, and that gives me a certain independence – doctors and nurses, for example, come at research from within a tradition of their profession, and this professional perspective shapes their analysis and interpretation. I aim to take the individual person’s perspective (along with that of the family or carers), to understand health issues.

As I am a ‘step away’ from the professions, I can explore how the different agencies interact to provide team-based care – and how this is shaped to the individual needs of a person.

I am constantly on the look-out for how professionals put into practice the notion of ‘person-centred care’. There is often a gap between the ambition of policies and how an individual person experiences this.                                                                                             

While members of the public may be participants in our research, we are also keen to invite people to have an input in the design of the research itself. This includes inviting them to the university to have meetings with us to discuss the research process, involving them in conducting the research itself, or even involve them in helping us to do the interviews rather than being interviewed themselves, or interpreting the data.

Spending time researching technical questions about organisations may lead to losing focus of the end goal of improving the care of people. The importance of this ‘patient and public involvement’ approach is that it avoids this academic bubble – by involving people from the outset, there is a real emphasis on doing research that will have a practical impact and will be relevant to today’s problems.

What does this independence bring to your research?

In PEACH study, the care homes research I am doing, I am looking at the problem of continuity of care – and it’s an excellent example of the benefit of independence as a researcher.

There is currently a national policy drive to improve healthcare in care homes, which has previously been of variable quality. One of the problems is that a person with complex needs may require input from several professionals; geriatrician, social worker, physiotherapist and GP.

We are investigating how best to coordinate the activities of these different professionals. While each professional could conduct research on this problem, they each bring their own perspective – the geriatrician may have a hospital perspective, the physiotherapist may not have expertise in medical conditions.

As a non-clinical researcher, I try to consider the perspective of the person and their experience of being cared for by several professionals. I aim to understand how to take the best from each of those professions, to coordinate around the needs of the individual.

But this has to work at the care home level too – you can put time and resources around one individual, but somehow you also have to make that work for the whole care home to make it practicable, so there’s another level of organisation and facilitation that is needed.

Is there still a silo mentality in health and social care that prevents real integrated care?

Yes and no. Words like ‘silo’ and ‘culture’ are easy to use as blame words, which doesn’t help us to progress or improve things. In a care home, there may be up to four or five different organisations involved in the care of one resident, and we can’t avoid that – we just have to make it work.

Technology is one way that we can help address this, for example – a significant problem is that each organisation has its own database and system.

In Nottinghamshire, there is an NHS organisation that is drawing together the different systems so that this data can be shared across all these different organisations. That is a way of bridging those silo boundaries and enabling team-based work to be efficient.

At what level does change have to happen when we look at developing more integrated, multi-disciplinary care?

We can think about three levels of change; policy, organisational processes and the care of an individual and it’s helpful to look at it in that way. Every practitioner across the board will agree with the aim of improving care for the individual – so that is a commonality.

“We know from implementation research that if you have a strict policy implemented nationwide, it often fails.”

Understanding the great variety within communities – whether that is ethnicity or gender, or geographical factors – implies that services should be developed according to these local factors. So that is a driving factor for these professionals and organisations to think, ‘how do we meet the needs of the individuals?’

So starting from that level of the individual we can then extend out to the care home –  to ask how do we meet the needs of everyone in this care home? Individual- to population-level focus is a way of trying to find commonality between professionals and organisations as a way of prioritising how different agencies work together.

In the PEACH study, we’re using an approach called “Quality Improvement Collaboratives”. Within a geographic area, we’ve got together the different organisations and professionals who work in care homes; the NHS managers, GP, care home manager, social worker, a geriatrician and not forgetting family members of residents.

They discuss how they can work better together – whether new processes or technologies are required. Within the study, we’ve then brought together four of these geographic areas into a “collaborative” so that they can share their best practice and key findings with similar groups in other areas.

While they work on these challenges, the additional benefit is that some of these silo boundaries automatically break down; so the meetings may be strategic, but the team-spirit that develops may filter out to the real-world practice in the care homes – ideally alongside ‘technical’ solutions.

It’s a bottom-up, organic approach and there is a real benefit to this – because we know from research that if you have a strict policy implemented nationwide it often fails because one particular idea either doesn’t fit a locality or different organisations have different priorities and can’t quite address the policy at that time. This is a flexible approach that addresses that local buy-in and allows for local priorities and challenges.

“By involving people from the outset, there is a real emphasis on doing research that will have a practical impact and be relevant to today’s problems.”

Complexity is the big challenge, and appreciating this is the first step to understanding where we can best focus resources. It’s also about recognising what is currently working.

Again a fundamental problem with trying to implement one strict policy is that it doesn’t recognise the strengths or benefits of what is already working well; it’s either trying to duplicate, replace or change those beneficial assets or relationships.

Are there any unique challenges when it comes to providing integrated dementia care?

I work at the Centre for Dementia within the University of Nottingham – and the work I have been doing recently with an Alzheimer’s Society Knowledge Exchange Fellowship is about trying to improve coordination of care to improve support for people living with dementia in the community (see blog article).

In The Netherlands, they are developing a network approach that brings together all the practitioners in the community to support those with dementia.

Together with a colleague in Nijmegen, Marjolein van der Marck, I’m looking at how all the different community services and resources (including charities as well as NHS and social care) can be part of a network of knowledge and support.

In turn, can general services for older people be adapted to be more inclusive of people with dementia? How might this approach be implemented more broadly in the UK?

In this country, this kind of network is more reliant on the third sector at the moment (charities and informal organisations). The Dementia Action Alliance, for example, is bringing together these kinds of support organisations and doing the work of building those networks to make connections more visible. If we ask “how can we make our community dementia-friendly?” I think local networks are the best approach.

The most significant challenge in care homes, as well as communities, is that people don’t have the information to access services or find out whether a service is right for them. A network could help people to find the services that are right for them – to meet their individual needs.

There’s a lot of talk in health and social care about pathways at the moment as maps to enable people to be able to access help and support and that is great. However, a ‘pathway’ will only be focused on one thing – you might be on the dementia pathway but if you also have diabetes, should you be on a diabetes pathway as well, or instead?

Where pathways might not deal well with the diversity of people’s needs or community, working to develop networks may, in the end, be a better and more inclusive way to enable people to access the right support according to their needs.

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By Anna Melville James, feature writer for The Elder Magazine.  You can find the original article here.

For sources of information and support you may find this living with dementia guide helpful.

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