Managing Complex Needs
Welcome to the community e-newsletter for the National Institute for Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) bringing you the latest news and interesting developments from across the thirteen collaborations and the health service research community. The NIHR CLAHRCs are funded by the NIHR and form part of the NIHR infrastructure. This newsletter looks at the work NIHR CLAHRCs are doing around Managing Complex Needs.
Find out more about the CLAHRC Partnership Programme at www.clahrcpp.co.uk.
NIHR CLAHRC Community e-newsletter- Managing Complex Needs
CLAHRC East Midlands: Online mental health hub evaluated
The effectiveness of a specially developed forum for people with depression and anxiety is being put to the test by a CLAHRC East Midlands study.
Two online mental health support forums will be compared by people in Nottinghamshire as part of the project.
The Big White Wall (BWW) is an online support forum with professionally trained Wall Guides to ensure the safety of all members who may be anxious, stressed, low or not coping.
It will be compared to the NHS Moodzone website which provides information and sources of support to people with mental health difficulties.
Professor Richard Morriss, Professor of Psychiatry & Community Mental Health, at the University of Nottingham and part of CLAHRC East Midlands, said: “We’ve never fully evaluated the reach of BWW to find out how well it works for people with depression and anxiety.”
If the results of the REBOOT Notts Study show that using BWW improves the wellbeing of participants, it will provide key evidence to reassure healthcare professionals that this may serve as a valuable resource to complement existing support.
CLAHRC East Midlands: Group psychoeducation offers ‘early intervention’ for bipolar patients
Structured group psychoeducation sessions could be more successful in treating patients in the early stages of bipolar disorder than standard peer-support offered by the NHS and the voluntary sector, research has found.
The study by academics at The Universities of Nottingham, Lancaster (Spectrum Centre) and Manchester published this week in Lancet Psychiatry, and funded by the National Institute of Health Research (NIHR), found evidence that psychoeducation – in which patients are offered information on their illness and work with family members to develop personalised coping strategies – could potentially offer an effective early intervention for people with bipolar disorder.
They have called for further research to explore whether group psychoeducation could be used preventatively to halt the further progression of the disorder.
Click here for the full story.
CLAHRC East Midlands: Promoting physical activity through group self-management support for those with multimorbidity: a randomised controlled trial (MAP study)
The study is developing a lifestyle and self-management programme in a primary care setting for people with multi-morbidities. Patients with multimorbidities will be recruited from primary care and will be invited to attend a group education programme focused on issues related to multi-morbidity. There will be a focus on physical activity, medication adherence, self-management of health-related conditions and improving lifestyle.
There is an identified need for effective self-management and the promotion of healthy lifestyle pathways in this group of patients. By involving primary care organisations in the delivery of a structured education programme, the study will help empower patients and facilitate active participation in their clinical care.
For more information about our studies, see our Study Portfolio booklet.
CLAHRC East of England (EoE): How can specialist locality-based community teams best support people with intellectual (learning) disabilities and additional mental health and/or behavioural needs?
The Government’s Transforming Care agenda is an acknowledgement that adults with learning disabilities and additional mental health and/or behavioural needs do not always receive the support they require from locality-based specialist community teams (CTLDs). Inadequate support can lead to placement breakdown and the use of psychiatric hospitals for ‘social care’ rather than assessment and treatment. As part of a programme of research into the work of CTLDs funded by CLAHRC East of England, clinical researchers examined team members’ experiences in a service comprising five multi-disciplinary and multi-agency (NHS and local authority) teams (Clare et al., 2016). Team members’ responses (N=71) were very similar regardless of their agency or team: (i) more than half the respondents reported impaired personal well-being; (ii) almost four in ten reported that their team lacked a sense of vision; (iii) the extent of the service’s commitment to quality was uncertain; and (iv) the service culture was viewed as primarily hierarchical. The perceived absence of clarity about the purpose of CTLDs, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises such teams’ ability to respond proactively to the needs of people with IDs, particularly those most at risk of exclusion because of their additional mental health and/or behavioural needs. These findings are being used to inform the development and implementation of the Transforming Care agenda.
For further information about this research please visit the project’s website.
CLAHRC East of England (EoE): Transcutaneous vagal nerve stimulation (tVNS) for episodic aggression: A feasibility and pilot study
Repeated aggressive behaviours are a particular problem for adults with the developmental or acquired impairments of cognitive, social and emotional brain functioning that are associated with intellectual (learning) disabilities (ID), acquired brain injury (ABI) or autism Unfortunately, when it comes to treatment, existing behavioural, cognitive behavioural and pharmacological treatment approaches are often inadequate, resulting in a wide range of adverse health, care, social and financial outcomes. Recent research has described relationships between disturbed autonomic nervous system activity and brain processes sub serving social cognition and executive functions that mediate identification of and response to potential threats. Developing an earlier study by Manning et al. (2014) researchers from the CLAHRC East of England are using n-of-1 trial methodology to carry out a feasibility and pilot study of transcutaneous vagal nerve stimulation (tVNS). The model proposed is that in adults with developmental or acquired impairments of cognitive, social and emotional brain functioning and episodic reactive aggression, a relative reduction in the high-frequency component of heart rate variability (HRV), reflecting the limited influence of parasympathetic activity on heart rate, is associated with disturbances of the cortical frontal and limbic processes that are themselves related to executive function and emotion regulation. This leads, in turn, to an exaggerated perception of and response to potential threat. If the pilot trial suggests that tVNS is feasible and acceptable and reduces the frequency and severity of reactive aggression, there is the basis for the development of a new treatment option.
For further information, please see here.
CLAHRC East of England (EoE): Managing complex needs – epilepsy in adults with an intellectual disability
People with an intellectual disability (ID) face challenges across intellectual, communicative, motor and social domains. In addition, approximately 26% of people with ID also have epilepsy. In the past those with ID have often been poorly served by services upon which the rest of the community depend and this has been reflected in observations that their epilepsy outcomes have been worse than those of the rest of the population. People with ID and epilepsy have increased seizure frequency, more anti-epileptic drug side-effects, higher treatment costs and higher rates of morbidity and mortality. Not surprisingly, it has been reported that between 2005 and 2009 the most common cause of avoidable acute hospital admissions for people with ID was seizures associated with poorly controlled epilepsy.
We have therefore developed research that aims to improve these outcomes. The EpAID treatment trial, which is now coming to a close, is a multicentre cluster randomised controlled trial of nurse-led epilepsy management carried out in 17 sites across England, Scotland and Wales. The intervention is based on a competency framework developed by the UK Epilepsy Specialist Nurse Association. It aims to provide a more responsive and tailored approach to managing epilepsy in adults with an ID that is deliverable within current NHS staffing and budgetary constraints.
A paper describing the rationale and protocol for this work is available on the website of CLAHRC EoE.
For further information about this project please contact: Dr Howard Ring: firstname.lastname@example.org
CLAHRC Greater Manchester: Six-month post-stroke reviews with care home residents: evaluation of a revised Greater Manchester Stroke Assessment Tool
Stroke is recognised as a long-term condition, with approximately 11% of stroke survivors transferred to care homes after hospital. Six-month post-stroke reviews, a requirement of the 2007 English National Stroke Strategy, are infrequently provided for care home residents, despite health professionals deeming them important.
The Greater Manchester Stroke Assessment Tool (GM-SAT) was developed by the NIHR CLAHRC Greater Manchester in 2010 to support six-month reviews. The current study involved consulting with a group of experts to adapt the tool to increase suitability for delivery to care home residents. Changes were made including removal, addition and modification of questions. This study aimed to explore the usefulness, acceptability and feasibility of this revised tool.
Analysis is underway with preliminary findings suggesting that: unmet needs are being identified with this tool, some of which could be addressed by stroke specialist training for care home staff; reviews are highly valued; the adaptations to the tool may also be of benefit to those living in their own homes. Results will be published in early 2018.
CLAHRC Greater Manchester: Investigating complex wound care in the community
In July of this year, the NIHR CLAHRC Greater Manchester worked with its partners in East Lancashire Hospitals NHS Trust to carry out a second wave of its wound care audit, investigating complex wound care in the community. This audit was conducted across all community services that deliver wound care in East Lancashire with a view to finding out the number and nature of the complex wounds being cared for, who they were being cared for by, and how they were being treated. During the two-week audit period, detailed information in relation to 674 patients with complex wounds was collected and this data will be used to work with services in East Lancashire and undertake new research and implementation projects with the goal of improving care. This work follows on from the CLAHRC’s previous audits that were carried out across four of its partner trusts in Greater Manchester in 2015.
CLAHRC North Thames: Linking data to track patient journeys
In England, more than 15 million people have a long-term condition such as diabetes or atrial fibrillation – accounting for 70% of health and social care spending. This figure is set to increase, particularly for those people with 3 or more conditions at once, who require care and support from multiple agencies across several sectors.
A CLAHRC North Thames project is investigating how linked data can be used to investigate patient pathways that span these care sectors and organisations. Researchers are analysing patterns of hospital care and how long-term conditions are recorded in hospital care data.
Early findings suggest long term conditions are not consistently recorded in routine secondary (hospital) care data. Analyses also suggest an association between better performance on GP indicators (such as GP patient survey results) and fewer outpatient attendances, A&E visits and emergency admissions to hospital.
Contact Andrew.Hutchings@lshtm.ac.uk for more info.
CLAHRC North Thames: Evaluating welfare “hubs” in GP surgeries
General Practitioners (GPs) are concerned with the health impact of debt and financial insecurity on their patients, and such issues can take up much GP staff time. Local authorities are piloting co-locating welfare advice in GP surgeries to advise and assist patients worried about such matters. A CLAHRC North Thames project is using an “embedded researcher” model so researchers can work alongside council staff while evaluating the impact of this initiative on patient’s health, consultation rate, and GP staff workload.
Initial findings suggest that the service design and how well integrated it is with the surgeries is likely to influence whether or not it reduces GP consultations and staff workload. Next steps will be to compare information provided by people accessing the service and a group who did not, to see if there is evidence the services improved peoples’ health and service use.
CLAHRC North West Coast: Care after presenting with seizures
More than 50,000 attendances at Emergency Departments in the United Kingdom each year are with a seizure and of these, half are admitted. Many patients attend multiple times and yet the National Audit of Seizure Management in Hospitals (NASH) shows that many are on suboptimal therapy and that only a minority reach the specialist service that could prevent further seizures, and implement strategies to avoid hospital attendance should seizures occur.
The Cheshire/Merseyside data show that only 8% of people with first seizures meet the NICE (National Institute for Health and Care Excellence) recommendation of a specialist review in two weeks. The Care after Presenting with Seizures (CAPS) project aims to find out if actively helping patients to attend an early two-week appointment will make the changes that reduce readmissions, re-attendances and improve quality of life.
The research means we will set up a dedicated nurse in each of three hospitals in Merseyside, who will identify all who attended the Emergency Departments in the previous 24 hours with a seizure (regardless of whether or not they were admitted) and offer an appointment at a seizure clinic within the next fortnight.
CLAHRC North West Coast: Transitional Care for Young Adults with Long Term Conditions
Young people with long-term health conditions remain under the care of children’s health care services until they are approximately 18 years old. At this point in their life, they need to move into the care of providers of adult health services. This important period, and the care provided, is usually known as ‘transitional care’. It is a time in the life of a person which is particularly important in their future development, in terms of their health and their future life time opportunities, including education, employment prospects and general wellbeing. This can sometimes involve a period of ‘shared-care’ between providers of children’s and adult services. However, our group’s and other groups’ previous research has shown that the organisation of transitional care (model) varies considerably between health conditions and within different parts of the UK. Young people often feel a sense of abandonment when leaving children’s services and services are often organised around the needs of healthcare professionals rather than the young person and family.
The need to develop good models of transitional care has been identified as a priority in a government report from the most senior doctor in the UK. Our previous research has identified a number of models of transitional care and has enabled young people and healthcare professionals to give detailed feedback on their knowledge and experience of transitional care. This has allowed us to identify things that do or don’t work well and to understand what young people and healthcare professionals believe will make a good experience during transitional care. Our aim is to select the important things that we think will have the biggest impact on improving transitional care. In this study we will focus on two long-term health conditions, epilepsy and arthritis, but we expect the results to be relevant for other long-term health conditions. Read More
CLAHRC North West London: Non-Invasive Ventilation project
In Northwest London, under the direction of Imperial College Healthcare NHS Trust, the important work of improving patient and carer interaction is underway in CLAHRC NWL’s Non-Invasive Ventilation project. Many care plans and physical and mental maladies present complex care circumstances, whether it be in terms of treatment, maintenance of care, or a multi-symptom scenario. We have chosen to focus on the NIV project because of the pervasive complexity and fatality of COPD related illnesses.
In the United Kingdom, 3 million people have COPD and it is the 5th leading cause of death. Type 2 respiratory failure in late disease causes significant morbidity and mortality. Non-invasive ventilation (NIV) is the best treatment we can offer these patients, reducing mortality by fifty percent. Unfortunately, NIV is stressful and frightening. The projects goal is to improve this experience and the outcome for patients with severe COPD. Read more here
CLAHRC Oxford: Improving the management of depression for patients at the end of life
Depression is likely to affect both quality of life and healthcare costs in the last year of life, but there has been little research into effective interventions for depression that are integrated with palliative care services.
This CLAHRC Oxford project aims to first identify the nature, prevalence and current management of depression in patients being treated by a specialist palliative care service for one or more chronic medical illnesses, including cancer. It will then find out how well these psychiatric needs are currently being met and the barriers to achieving this by interviewing staff and patients.
Based on these findings, and on our previous research, together with Oxford University Hospitals Foundation Trust’s Psychological Medicine service, we will develop a new approach to managing depression that is integrated with palliative care. This new approach in palliative care will then be piloted and refined.
Finally, a randomised controlled trial will be used to evaluate this new approach to care on quality of life, cost of care and place of death compared with that achieved by usual palliative care for patients with depression. More here.
CLAHRC Oxford: Optimising Treatment for Mild Systolic Hypertension in the Elderly (OPTIMISE)
People are living longer. As a consequence, the number of people living with age-related chronic (long-term) diseases such as diabetes, kidney disease and dementia is also rising. Typically, people will have more than one age-related disease requiring treatment – ‘co-morbidity’. Treating patients with co-morbidity can be complex, requiring many different drugs for each condition.
Patients and carers can find this ‘polypharmacy’ complicated to manage and stick to. One difficulty, for example, is correctly managing which tablets to take at what time. Polypharmacy also increases the risk of side effects, harmful drug interactions, or drugs undermining one another’s therapeutic effect.
Polypharmacy can also lead to the prescription of even more drugs. For example, a doctor may not realise a patient’s symptoms come from a drug’s side effects or interactions, and unwittingly prescribe new drugs to counter these.
Of all the chronic conditions older patients tend to suffer from, high blood pressure is the most common. This condition increases the risk of heart attack and stroke. More than half of patients aged 80 years or older will have high blood pressure, many of which may be taking two or more different drugs to control it.
This new CLAHRC Oxford project aims to:
- safely reduce the amount of blood pressure medication taken by older people using self-monitoring of blood pressure
- see if reducing the amount of medication taken by older people results in fewer falls or other harmful events and side-effects and
- see if reducing the number of blood pressure lowering medications can improve the quality of life of individuals entering older age.
CLAHRC South London: Making self-management accessible for stroke patients with complex needs
Bridges self-management is a social enterprise which provides bespoke training and consultancy services to health and social care staff, to enable patients with long-term conditions to better manage their condition and live well. They also work with patients and their families to develop self-management tools and resources.
A CLAHRC South London funded study aimed to find out how to make the Bridges Programme accessible for stroke survivors who have cognitive, communication or mood difficulties. The research team have found that this group of patients are less likely to gain access to any self-management programme despite potentially having the most to gain.
The study involved observational work and surveys of stroke teams who use Bridges and those that don’t. Researchers explored the views of stroke survivors who have cognitive, communication or mood difficulties, their family members and the health and social care professionals who support them.
This research will inform adaptations to both the workbook and the training to help professionals understand how to support people with these complex needs. The adaptations will be developed in collaboration with stroke survivors and will then be evaluated by re-interviewing and re-observing.
CLAHRC South West Peninsula: Chronic viral hepatitis in ethnic minorities
Chronic viral hepatitis, which is at least 10 times more prevalent in the immigrant population than the general population, leads to cirrhosis of the liver and in some cases death. PenCLAHRC’s operational modelling team, PenCHORD, are supporting this NIHR Programme Grant-funded project, which aims to investigate whether screening immigrants for chronic viral hepatitis in primary care is feasible, acceptable to the communities at risk and cost effective. It will also look at whether therapy for viral hepatitis in primary care is achievable, and both clinically and cost effective, as well as whether community treatment improves engagement and increases the number of patients who access effective therapies that are NICE approved. More here
CLAHRC South West Peninsula: Support project for prisoners on or near release who have mental health problems
PenCLAHRC is supporting a team of researchers from Plymouth University Peninsula Schools of Medicine and Dentistry and the University of Exeter, with colleagues from the University of Manchester and University College London, on a project called ENGAGER 2. This five-year programme is investigating the issues faced by prisoners with mental health problems near to and after release. The project aims to develop and evaluate a way of organising care based on an integrated approach involving therapy, medication, housing, training and employment, and ensuring that care continues after release.
CLAHRC South West Peninsula: PARTNERS 2 – Development and Pilot Trial of Primary Care Based Collaborative Care for People with Serious Mental Illness
PARTNERS2 is a five-year National Institute for Health Research (NIHR)-funded research programme. It is a multi-site project which is being conducted by a national team of experts, led by Professor Max Birchwood and hosted by Birmingham University and Solihull Mental Health NHS Foundation Trust. There are three research sites at Birmingham, Manchester and Devon. From PenCLAHRC Professor Richard Byng is leading the research at the Devon site, with Professor Nicky Britten leading development and formative evaluation of the intervention.
The PARTNERS 2 team are focussing their research on enabling primary care (GP) and secondary care (community based mental health services) to work more closely together, by developing an evidenced based model of collaborative care to support individuals diagnosed with schizophrenia and bipolar disorder. An experienced mental health worker, or care partner acts both as overall coordinator (supporting individuals to access other services and activities), as well as providing coaching to support achievement of the individual’s social, emotional or medical goals. The intervention is being piloted and further developed this year.
This trailblazing research is innovative in terms of its Public and Patient Involvement (PPI), as people holding lived experience are interwoven across all aspects of the study. Service User Researchers are part of the research team: in Devon Laura Gill is working alongside Cathy McCabe, Ruth Gwernan-Jones and Elina Baker.
At the end of the five-year programme, after the randomised controlled trial (2017-18), the team will know if collaborative care for people with schizophrenia and bipolar disorder in England is likely to work, based on how well people are feeling in themselves, the quality of their lives, how many feel they are more recovered, and what the system costs to run. More here
CLAHRC South West Peninsula: DeCoDer – debt, depression and anxiety
Many patients seen in general practice who present with depression and related anxiety, also experience debt and prolonged absences from employment. Evidence suggests that there is a relationship between being in debt, depression and the risk of self-harm. A nationwide team including experts from Plymouth University Peninsula Schools of Medicine and Dentistry, supported by PenCLAHRC, are exploring whether debt advice, provided by Citizens Advice Bureau counsellors for patients with debt and depression, accessed through general practices, makes a difference to their recovery. More here
CLAHRC West Midlands: Comorbidities in patients with gout prior to and following diagnosis: case-control study
Gout is the most common inﬂammatory arthritis worldwide, with a UK prevalence of 2.49%. Gout is associated with a number of important comorbidities that impair wellbeing and reduce life expectancy, including metabolic syndrome, cardiovascular disease and chronic renal impairment. Current guidance typically focuses on comorbidities that are seen as ‘complications’ of gout. However, many patients with gout suffer from comorbidities that are not necessarily directly related to gout, making management decisions difﬁcult due to a lack of guidelines for such scenarios.
A new study, led by researchers at the University of Nottingham and collaborating with Professor Christian Mallen (CLAHRC WM Theme 4 (Chronic Disease) based at Keele University), used a large primary care database in the UK to compare the burden of existing comorbidity at diagnosis in patients with gout with matched controls, and to estimate the risks of developing new comorbidities following diagnosis.
The study revealed that the prevalence of a number of conditions, including hypertension, cardiac arrhythmias, hypothyroidism, osteoarthritis, depression and anaemia were all signiﬁcantly higher in patients with incident gout than controls. In addition, all-cause mortality was higher in patients with gout. Overall, the burden of comorbidity is very high at diagnosis of gout and the risk of developing new comorbidity is also higher in patients with incident gout than in the general population. The authors recommend that a thorough search for a broad range of comorbidity and subsequent vigilant observation should be considered for all patients with gout from the date of ﬁrst diagnosis.
Kuo, C-F; Grainge, MJ; Mallen, C; Zhang, W; Doherty, M. Comorbidities in patients with gout prior to and following diagnosis: case-control study. Annals of Rheumatic Disorder. 2016;75:210-217.
CLAHRC West Midlands: HECTOR – Heartlands Elderly Care, Trauma & Ongoing Recovery Project
A service-level evaluation of a hospital enhanced care package designed to improve outcomes for older patients sustaining trauma injuries.
People over 65 now account for around two-thirds of hospital admissions. This patient group are particularly vulnerable to trauma and it is well documented that older patients, especially when faced with trauma, have increased levels of mortality and often present with complex needs that require careful management.
The HECTOR pathway is a service-led intervention being undertaken at Birmingham Heartlands Hospital and it is designed to improve the outcomes of older patients, (age 65 years and over), admitted to hospital with significant traumatic injuries. The intervention utilises integrated care pathways and holistic patient-centred assessment on the back of a structured teaching programme to deliver enhanced care to this patient group.
Theme 4 of CLAHRC West Midlands are undertaking an evaluation of this care pathway utilising mixed methods to ascertain the impact of an enhanced care-pathway (HECTOR) for older trauma patients treated at Birmingham Heartlands Hospital and assess the feasibility of rolling out the pathway across other trauma units.
The pathway was implemented in September 2014 and the results from the evaluation should be available in early 2017.
Contact: Dr Sarah Flanagan CLAHRC West Midlands (Theme 4 – Chronic Disease) email@example.com
CLAHRC Yorkshire and Humber: Evaluation of Mental Health Nurse Triage for Ambulance Service Patients with Mental Health Problems
The NIHR CLAHRC YH Avoiding Attendance and Admission in Long Term Conditions Theme including Rachel O’Hara, Andy Irving and Maxine Johnson at ScHARR, University of Sheffield, in collaboration with Angela Harris, Yorkshire Ambulance Service undertook this evaluation.
The aim of this evaluation was to explore the impact, perceptions and experiences of implementing mental health nurse triage in the Yorkshire Ambulance Service Emergency Operations Centre. This entailed interviews with twelve staff and analysis of computer aided dispatch (CAD) data. Preliminary impressions from the evaluation indicate that the triage nurses are increasingly managing patient issues over the phone to deliver ‘hear and treat responses’. Analysis of CAD data for calls categorised as ‘overdose/poisoning’ and ‘psychiatric/ suicide’ showed that rates for ambulance dispatch were lower for calls triaged by the mental health nurses. Perceived effectiveness of mental health nurse triage was attributed to the nurses’ established contacts and their ability to communicate inter-professionally with mental health services. Further evaluation and research is needed to examine this intervention in more detail, including service user experiences and the cost-benefits of implementing mental health nurse triage.
Report available here.
CLAHRC Yorkshire and Humber: Prison Network
Jo Cooke and the Public Health and Inequalities (PHI) theme of NIHR CLAHRC YH have worked with Nat Wight (honorary GP Consultant for Rotherham Doncaster and South Humber NHS Foundation Trust) in developing a research network establishing pathways into prisons in order to undertake research. This is in recognition of the ingrained health inequalities of this cohort.
This culminated in an inaugural network meeting held on 22nd March 2016 attracting 60 participants. Our findings were then presented at the Prison Health Symposium in Glasgow on 18th May 2016. We have been invited to lead on the offender health theme of the national Contact, Help, Advice and Information Network (CHAIN) network.
Please contact Caroline.Temperton@doncaster.gov.uk if you have any queries regarding this on-going work.