Person-Centred Complex Care currently has three sub-themes. Find out more about them below.

• Neuropsychosocial outcomes following paediatric epilepsy surgery (EpiSafe)
The EpiSafe project, funded by the National Institute for Health and Care Research over five years, will create and trial an evidence-based, personalised care bundle specifically designed for pregnant women with epilepsy. The team of researchers, led by Professor Shakila Thangaratinam from the University of Birmingham and other UK organisations (including the University of Manchester and Liverpool among others), will provide healthcare professionals caring for pregnant women with epilepsy, the tools and guidance they need to streamline the care they provide and allow for shared decision-making with women regarding their epilepsy and pregnancy. The EpiSafe project will also study the long-term effects of newer anti-epileptic drugs (AEDs) on children’s development. 

• ACTIVATE: Angina Controlled Trial Investigating the Value of the ‘Activate your heart’ Therapeutic E-intervention
Chronic stable angina is common and disabling. Cardiac rehabilitation is routinely offered to people following myocardial infarction or revascularisation procedures and has the potential to help people with chronic stable angina. However, there is insufficient evidence of effectiveness and cost-effectiveness for its routine use in this patient group. The objectives are to compare the effectiveness and cost-effectiveness of the ‘Activate Your Heart’ cardiac rehabilitation programme for people with chronic stable angina compared with usual care. Recruitment will be from primary and secondary care centres in England and Wales. The primary outcome measurement will be the UK version of the patient-reported Seattle Angina Questionnaire (SAQ-UK), physical limitations domain at 12 months’ follow-up. Secondary outcomes will be the remaining two domains of SAQ-UK, dyspnoea, anxiety and depression, health utility, self-efficacy, physical activity and the incremental shuttle walk test. Concurrent economic evaluation will be cost-utility analysis from a health service perspective.

See protocol published in BMJOpen here

• Service delivery interventions for people with epilepsy and for people with epilepsy and intellectual disability
This Cochrane programme grant was for the update of four Cochrane systematic reviews. Two (adults and children) assessing behavioural and psychological interventions for people with epilepsy, one assessing pharmacological treatments for people with epilepsy and intellectual disability, and a second assessing non-pharmacological interventions.

• Renal HF: personalised renal function monitoring and interventions in people living with heart failure
Almost one million people in the UK have heart failure. Heart failure and kidney function decline are closely linked, with hospital stays due to chronic kidney disease accounting for just over 1% of the NHS budget. Even a small reduction in admission would create significant savings.  

The Renal-HF programme examined past UK patient data to identify which changes in routine blood tests identify patients that are at risk of chronic kidney disease.  This information is presented to GP practices so guided monitoring and medication changes can prevent or avoid an estimated 1,375 admission to hospital annually.  Heart failure patients are co-creating a care pathway – encouraging regular blood tests to promote optimal health for heart failure patients. This results in better patient health and reduced hospitalisation.  

Going forward we aim to introduce our tool to more GP practices allowing early review of at-risk heart failure patients.  

• RADOSS: Supporting the ambulance service to safely convey patients to hospital by developing a risk prediction tool
Ambulances frequently respond to epilepsy cases, transporting individuals to hospital A&E departments, despite limited benefits as most patients are already diagnosed and in non-emergency states. To address this, NHS organizations want an alternative care pathway for paramedics.

We collaborated with stakeholders to develop a patient-centred, NHS feasible pathway, incorporating input from patients, carers, and healthcare professionals. Surveys and workshops identified potential pathways considered by NHS organizations. Interviews with people affected by epilepsy provided valuable insights. Using Discrete Choice Experiments, preferences for different care packages were then gathered. Results showed a consensus among participants for a distinct care approach not currently available. Workshops involving paramedics, epilepsy specialists, and managers indicated the feasibility of the proposed alternative pathway within the NHS.

The next steps involve implementation and evaluation to optimize epilepsy care based on user preferences.

• REFLECT: A collaborative qualitative exploration of the experiences of paediatric rheumatology juvenile idiopathic arthritis (JIA) remote consultations
The COVID-19 pandemic prompted a swift transition to virtual outpatient consultations (VOPC), previously rare in paediatric care. This study aimed to understand the perspectives of clinicians, parents and children & young people (CYP) regarding VOPC for juvenile idiopathic arthritis (JIA) and to create resources for better virtual appointments. Methods included observations of VOPC and interviews with participants.  

Results showed that VOPC followed a structured approach similar to face-to-face consultations (F2F), which was generally well-received. However, differences between VOPC and F2F consultations influence the overall experience. An animation, and information leaflets to improve experiences of VOPCs were co-created in a workshop with CYP and their families. 

Participants wanted the option to choose between F2F and remote consultations, emphasising shared decision-making among clinicians, parents, and CYP. Future steps include sharing the learning and ensuring resources created are implemented across the Trust and the North-West. 

• Remote consultations in primary care during COVID -19: views and experiences of healthcare professionals and patients and the impact of digital health
inequalities
COVID-19 has resulted in challenges to healthcare delivery previously unseen. In primary care most consultations are now conducted remotely in the first instance. This study will examine the impact of these changes on those delivering them and on those for whom they are intended. Using questionnaires over three time periods, each three months apart and a number of healthcare professional and patient interviews after survey completion. We aim to explore the benefits and challenges within different populations, such as the elderly, ethnic minority groups and those with long-term conditions. Healthcare professionals will specifically be asked about their reach into populations without access to, or familiarity with, technologies and stable telephone or IT access. We aim to identify how this approach to accessing primary care will affect patient and professional engagement and identify opportunities and challenges to inform long-term plans for the future equitable provision of remote consultations in primary care.

• DynAIRx: AI for dynamic prescribing optimisations and care integration in multimorbidity
DynAIRx aims to develop new, easy-to-use, artificial intelligence (AI) tools that support GPs and pharmacists to find patients with multimorbidity (two or more long-term health conditions) who might be offered a better combination of medicines. These tools will be developed to combine information from electronic health and social care records, clinical guidelines, and risk-prediction model, ensuring clinicians and patients have the best information to prioritise and support Structured Medication Reviews. We will calculate risks of hospital admissions and other adverse outcomes, for people at high risk of rapidly worsening health.

We will develop visual summaries of patients’ journeys, showing how health conditions, treatments and risks of future adverse outcomes change over time. These will be tested in general practices across northern England and improved based on feedback from clinicians and patients.

• Multimorbidity clustering to inform more equitable health and social care
Multimorbidity is one of the biggest challenges facing healthcare systems. The Academy of Medical Sciences outlined these challenges in its 2018 report on multimorbidity within the UK. The Academy indicated that individuals from deprived backgrounds experience multimorbidity at an earlier age, suffer worse health outcomes and use more health service resources than any other demographic. Additionally, research had indicated that multimorbid individuals have higher emergency department attendance and hospital admission rates than non-multimorbid individuals.

Our study has:
• Outlined the social determinants of multimorbidity associated within emergency hospital admission.
• Defined multimorbidity within emergency hospital admission research to improved comparability within the field.
• Created the UKs first small area multimorbidity indicator aimed at identifying areas within the UK with high multimorbid admission burden.

• Strategic Partnership: Learning disability and autism programme
This partnership with academic partners, health care organisations and voluntary sector partners has led to development of a number of projects: Learning Disability Mortality Review programme (LeDeR) Programme: This aims to improve the quality of care people with a learning disability (LD) receive given previous research shows that, on average, people with a LD die earlier than those without. Over a five year period, the project team will co-ordinate data analysis and deep dives of NHS England’s LeDeR programme to produce a yearly report, and make service recommendations to the NHS to affect change, address health inequalities, and improve care and health outcomes. Further collaboration led to a project exploring health inequality for people with LD from minority ethnic population groups. The Patient Safety Centre through co-production with people with lived experience, is exploring new models of care for improving healthcare.

• Decision making for older people with head and neck cancer
Treatment for advanced head and neck cancer can result in significant short-term and permanent side effects, impacting patients’ quality of life. With over 12,500 new cases annually in the UK, primarily affecting those over 65, older adults face additional health challenges that complicate treatment decisions. Most patients have advanced disease and a survival rate of less than five years. The choice between aggressive treatment for potential life extension and palliative care for symptom relief is complex, and it is imperative that patients are involved in making decisions about their treatment. Our research found that patients may select less aggressive treatment if offered – however clinicians may favour more aggressive approaches. This work has underpinned a NIHR HSDR funding application to develop a shared decision-making intervention to better meet patients’ and families’ needs, and improve care and healthcare use.

• OSCAR: Optimising structured medication reviews – a real time observation cohort study with integrated qualitative evaluation
Structured medication reviews are when a pharmacist or GP meets with a patient and goes through their medication considering this in the context of the whole person. They aim to target people with several different medical conditions, people on many different medicines, and people who are frail or who live in care homes. While they seem sensible, little is known about what they achieve. So far we have found that between 2020-22, about 1 in 6 eligible people received a review after which there was an overall reduction of 5% in most prescriptions. Most reviews were by telephone with little opportunity for patient preparation. Planned medication changes often needed additional information. Patients appreciated being able to discuss and learn more about their medicines. Overall, structured medication reviews seemed to influence prescribing but there was considerable variation. Further work will provide additional insights for their use in the NHS.