A message from ARC NWC Director, Professor Mark Gabbay

Greetings and thank you for taking the time to read our latest Newsletter.

I am delighted to invite you to our next hybrid-format ARCFEST, which will be taking place on Tuesday 13^th December 2022 at Chester Racecourse.
 
The theme of the day will be Mental Wellbeing as we hear about the outputs, collaborative work and impact we are making in this area.
 
Our ARCFESTs now alternate between a workshop version, and a theme activity update and planning one. The Chester December meeting is a theme focused one. We will be showcasing examples of our work and hosting individual theme meetings. Therefore, as you register we will ask your preferences for which theme meeting you wish to attend, and whether you plan to participate in ARCFEST via the hybrid option or in-person at Chester Racecourse.  We strongly encourage our members who are working with us on projects in this area to participate and contribute by being part of the sessions throughout the day, recognising that some cannot attend the whole meeting. Please do encourage your colleagues to attend some or part of the day, and register via Eventbrite.

It was a pleasure to join our Senior Research Fellow, Dr Clarissa Giebel, at the Alzheimer Europe 32nd Annual Conference in Bucharest earlier in the month, who was one of the invited plenary speakers. Dr Giebel highlighted the extent to which carers have been neglected, not only during the pandemic but also before it and since with an insight provided into the research she has conducted in this area with various collaborators. Getting our research out there on platforms such as this brings our findings to a global audience and positions us as a leader in this field of research. The conference was an excellent opportunity to co-develop plans for future research and grant applications with International colleagues. We particularly showcased our co-production, equity and health inequalities approach and embedding of public involvement in all of the work, which was much admired.  

On the subject of disseminating our work, I hope next month you can catch up with our public advisers and staff as they take our Health Equity Mainstreaming Strategy and Health Equity messages onto the road and attend locations around the region, as part of the 2022 Festival of Social Science. Details of locations are contained in this month's edition.  

I do enjoy the valuable insights into care received by our Public Advisors via the blogs they submit for the newsletter. This month is no exception and I would urge you to take the time to read them, especially those with an interest in complex care and joining up services.  

Thank you all for your continued support. 

Professor Mark Gabbay
Director, ARC NWC 

Sign up for our December ARCFEST at Chester Racecourse
 

Dates for your diary! 
 

You can view details of our theme meetings, events etc on our event calendar, via our website here. 

Systematic Literature Review Internship
 

We are pleased to announce that we are accepting applications for a research internship to conduct a systematic literature review examining the effectiveness of care plans and their delivery on improving continuity of care for those with multimorbidity.

Working with partners and public advisors, ARC NWC have developed and prioritised this systematic literature review project. Staff employed in ARC Member organisations are welcome to apply for this opportunity to work with our research themes – Person-Centred Complex Care (PCCC) and Methodological Innovation, Development, Adaptation and Support (MIDAS).

Healthcare systems are traditionally designed with single-condition approach to management which is not conducive to the current trend towards increasing levels of multimorbidity and complexity. The need for improvements in continuity of care for complex and multimorbid patients have also been highlighted in the NHS Long Term Plan (NHS England, 2019). Continuity of care can be achieved in multiple ways and there are two main forms of continuity; relationship continuity, where a patient sees the same clinicians and management continuity, where a patient receives seamless care managed across services facilitated by a care coordinator, integrated health records/systems and/or the availability of care plans. It is important to identify whether care plans are effective tools to support continuity of care for patients with complex or multimorbid conditions, before we consider the optimum design and content of care plans for this group of patients.

This internship provides an opportunity to develop skills and knowledge in conducting systematic literature reviews, critically appraising research evidence, and will lead to opportunities for dissemination. ARC NWC will provide funding for salary backfill (up to £6000 available), allowing the intern to be released a day a week for up to one year or equivalent pattern to complete the internship. Please forward this information to colleagues within your organisation who may be interested in applying for this internship. During their internship, interns will receive supervisory and other support from within the ARC NWC.

To receive an application form, or for additional information please contact ARCNWC@uclan.ac.uk 
Applications must be received by 5pm on Sunday 15th January 2023.

Add your views to the STIMULATE-ICP: Delphi Project on Long COVID
 

Seldom Heard Forum - Refugees and asylum seekers’ wellbeing

Mon, 7 November 2022, 13:00 – 15:00 GMT

Refugees and asylum seekers can have complex health needs. These may be influenced by experiences prior to leaving their home country, during transit or after arrival in the UK. For example, refugees are five times more likely to have mental health needs than the UK population. During this period asylum seekers are at risk of health problems linked to poverty, such as malnutrition. Extended periods of stress and uncertainty can also lead to declines in mental health, including among patients who arrived in the UK in good mental health or who had no previous history of mental health problems.

However, refugees and asylum seekers in the UK often have difficulty accessing healthcare and other public services. In many cases, they may be unfamiliar with the way these services are organised. In 2017, NHS charges for overseas visitors were extended to include some community care for refused asylum seekers. There is growing concern that this will increase access difficulties.

If you would like to join us, please sign up via Eventbrite:

https://www.eventbrite.co.uk/e/arc-nwc-seldom-heard-forum-wellbeing-of-refugees-and-asylum-seekers-tickets-439506464667

Please email any queries to s.m.hassan@liverpool.ac.uk in the first instance and feel free to share the invitation with colleagues, friends or any community groups you may know.

Conference explores dementia care priorities
 

RADOSS (Risk of ADverse Outcomes after a Suspected Seizure)

Why is it that people are taken to A&E when they might not need to go there? When ambulance clinicians respond to calls, they often have to act quickly to help people with complex health conditions. It can be hard for them to know which people will and will not benefit from being taken to an A&E. They may not know the risks of not taking someone to there. This is because they don’t always have the specialist knowledge needed to make such decisions.

To help change things, paramedics have said they want a 'tool' to let them know the benefits of taking a person to A&E and the risks if they don’t. They say they could use it to help them and the patient and their family make personalised care decisions. The RADOSS project is going to see if we can make such a tool. It will involve hospital specialists, ambulance personnel, statisticians, researchers and service user representatives working closely together.

In the RADOSS project we shall focus on making the tool for adults who have had a seizure (‘fit’) and have been seen by the ambulance service. If we can make the tool work for seizures, we could develop it to help with other health conditions too.

Seizures are a good condition to work with because like for many conditions, how helpful it is to go to A&E after a seizure depends on the persons' individual circumstances. For instance, the cause of their seizure, its effects and where they are. Therefore, the care decision needs to be personalised. To develop the tool the RADOSS project will look at the anonymised medical records of people seen by one English ambulance service for a seizure. We will:

· Compare the recovery and health of those who were and were not taken to A&E;

· See how many people were taken to A&E who did not need to be;

· Speak with service users, their family/friends and clinicians to hear what they think could be used to predict the benefit(s) and risk(s) of going to hospital after a seizure. We’ll also ask them about how they want the tool to show the benefit(s) and risk(s).

· See if it is possible, to calculate benefit(s) and risk(s); using information available to ambulance clinicians at the time

· After developing the tool, we will check how good it is at predicting the risk(s) and benefit(s) for people seen by the ambulance during 2021 for a seizure.

Working with Epilepsy Action, there will be lots of patient involvement in the RADOSS project. With the support of the ARC NWC, the project came about after an event with 9 service users, and paramedics from 7 of England’s 10 ambulance services.

If any member organisation would like to know more or be kept informed about this initiative please email arcnwc@liverpool.ac.uk

                                     Selection of ARC NWC research published this month

Benedetto V, Filipe L, Harris C, Spencer J, Hickson C, Clegg A. Analytical Frameworks and Outcome Measures in Economic Evaluations of Digital Health Interventions: A Methodological Systematic Review. Medical Decision Making. 2022;0(0). doi:10.1177/0272989X221132741

Newton C, Beaver K and Clegg A (2022) Patient initiated follow-up in cancer patients: A systematic review. Front. Oncol. 12:954854. doi: 10.3389/fonc.2022.954854

Reeves, Matthew J., Clare Thetford, Naoimh McMahon, Denise Forshaw, Chris Brown, Miland Joshi, and Caroline Watkins. 2022. "Life and Leisure Activities following Stroke or Transient Ischaemic Attack (TIA): An Observational, Multi-Centre, 6-Month Follow-Up Study" International Journal of Environmental Research and Public Health 19, no. 21: 13848. https://doi.org/10.3390/ijerph192113848


                                                     Recruitment for Study

ARC NWC PhD student Becca Selby is currently recruiting for her study to explore parent and carer perceptions of public health messages related to infant feeding in the North West Coastal region. Find out more about her study, including how to get involved here.

                                             
                                                        HEMS hits the road
























The ARC NWC Health Equity Mainstreaming Strategy goes mobile over the coming weeks as part of a tour of the 2022 Festival of Social Science. (flyer for past October event above- full report in next month's edition)

Catch our public advisers and staff around the region during November here: 

3/11, Kirkby Town Centre
8/11, Strand by Me in the Strand Shopping Centre
10/11, Health Innovation Centre at Lancaster University

Each session will take place from 12-4pm. 

                                           

Complex Needs and Co-Production 

Robert G MacDonald, PhD. BA, BArch (University of Liverpool). Public Advisor ARC NWC, MerseyCare Service User, Volunteer in Art for Well Being at The Bootle & Southport Life Rooms.   

“Complex care seeks to improve health and well being for people with complex health needs by coordinating and reshaping care delivery at the individual, community and systems levels.” NDIS Complex Support Needs Pathway 

Introduction:
The purpose of the “Side by Side Complex Needs Group” at MerseyCare NHS Foundation Trust is to collectively reimagine support for complex lives so that it puts the well being of the person at the centre and treats people with kindness. There is a need to debate and consider the terms and meaning of complex lives and explore the various journeys and narratives represented by people living with such complex needs.

A Personal Narrative:
“ Complex patients, defined by the Agency for Healthcare and Quality (AHRQ) are persons with two or more chronic conditions where each condition may influence the care of each other condition.”

The Life long Lived Experience of a Mental Disorder and Physical illnesses are complex and go hand in hand, they are inseparable. From the early age it is possible to experience a life time of mental and physical illnesses. They can be complicated and mutually connected and need to be co-ordinated and integrated to achieve well being. Generally, lived experiences indicate that all the complications of treatment have to be well coordinated. Trusted professionals need to coordinate care, share information and avoid gaps at transition points, avoiding duplication and repetition of information.

Personal experience of a complex life can be unique to the person and research into comparable complex needs is limited. For this reason a life long Journey and Narrative was presented to The “Complex Lives Workshop- Co-Production & Engagement ( System P) Microsoft Teams Meeting which was held on 6th October 2022. Hopefully, the objective was to explore and expose the complex needs and highlight the need for more research into this in between area of illness and well being.

Its important that service users are enabled to talk, be listened too and give voice of their lived experiences of complex needs. The presentation was supported by Helen Bennett MerseyCare Participation Manager and and the author Robert MacDonald is grateful to MerseyCare for this presentation opportunity.

Bi-Polar Disorder:
The author has been Bi-polar since the age of 19 and Is now 71. During this time the author has experienced many manic episodes and depressive periods. These include being taken to a low security hospital, hand cuffed in a police car, restrained and sectioned under the Mental Health Act and held in a seclusion suite without a window. His situation was considered by a Mental Health Tribunal comprising a Consultant Psychiatrist, GP, Social Worker and an Independent Pastoral Observer.

Bi-Polar is a serious life long mental illness characterised by extreme high manic and low depressive mood swings. It can reduce the life span and longevity by about ten years and manic episodes can seriously result in suicidal acts and self harming behaviour. Bi-Polar can be self managed with medication especially lithium and anti psychotic drugs.

Regular psychiatric appointments are required and adjustments in medication are made by telephone or face to face. During COVID lockdowns face to face therapeutic psychiatric consultations were limited and relied only on telephone consultations which tended to be very confusing.

Diabetic Type 1:
For twelve years the author has been diagnosed Diabetic Type 1. This started with a Diabetic Ketoacidosis DKE Episode when he went into a coma and was hospitalised. It is necessary to learn to manage daily insulin and medication and Diabetic Sensors can now be fitted and connected to a Smart Phone. Regular foot inspections and retinal photography are required.

In addition CKD Chronic Kidney Disease, (which is now a global epidemic of 37 million people) developed.

Diverticulitis:
The Ageing population aged over 60 and 80 are prone to Diverticulitis which is a condition of the lower abdomen. It can be extremely painful and can even involve an emergency hospital visit to an AE followed by long term hospitalisation.

Ageing and Dementia:
Dementia can develop gradually with loss of memory, mobility problems and is now effecting large numbers of individuals nationally and internationally.

Parkinson’s Disease:
The symptoms of Dementia and Parkinson’s Disease can overlap. Parkinson’s requires a medical assessment of mobility, agility and numerical intelligence. The symptoms of both can be similar and might also reveal and show the signs of a ‘stroke’.

Walking and Mobility:
Over a period of time walking can become difficult and the ‘gaite’ becomes quite uneasy. Mobility aids are useful, walking sticks and wheelers all can assist unsteadiness. However, falls can become damaging resulting in hospitalization for hip replacement.

Cataracts:
During the 2-3 years of The Pandemic lockdowns cataracts in both eyes presented problems. The Eye Sight Clinic closed down completely and the author virtually lost all sight until the clinic reopened. Eye surgery and laser treatment enabled better eyesight to be returned and regular visits to the opticians.

Glaucoma:
After cataract treatment long term glaucoma was diagnosed and medicinal eye drops were prescribed.

Dental Treatment:
Ageing brings with it dental problems, painful extractions and fillings.

Conclusions:
Given the complexity of all the different mental and physical needs and conditions there is an important and urgent requirement for integrated and coordinated care.

The GP surgery is very important in this role but there are also many other health care professionals and agencies responsible for health and well being. It is not sufficient to rely on medical and mental health awareness because new ways of training in coordinated care is vital.

Increasingly the self management and therapeutic care of well being is recognized as being important.

The question is can any of the different types of therapy help people experiencing these complex needs and conditions? The MerseyCare NHS Foundation Trust have set up a number of Life Rooms. These include Art for Well Being Classes, Music Classes and Poetry etc. The question is how can better awareness of complex needs be delivered in the context of the life rooms? Perhaps there can be classes and training in complex needs for MerseyCare Staff and Service Users in the life rooms?

LEADING BY EXAMPLE – ENGAGING STAKEHOLDERS IN REVIEWING LITERATURE ON ENGAGING COMMUNITIES IN ADDRESSING AIR QUALITY

The origin of our air quality work dates back to the CLAHRC Neighbourhood Resilience Programme and from group discussions held in early 2020 with residents in three localities in the North West Coast. Disproportionate exposure to air pollution and associated negative health impacts were highlighted as priorities for these local communities. Fundamental to our way of working is support for research that responds to the priorities of local health and care systems, and local populations, by embedding co-production to each stage of the research process.

To address place-based issues such as air quality, we recognised the importance of community engagement to enable those residing in affected neighbourhoods to use their local knowledge to influence decision making processes and the implementation of local solutions. To develop our future plans for air quality work, we reviewed the existing literature to understand ways in which communities have been engaged in addressing air quality.

A key element of our review was the involvement of stakeholders with an interest and/or experience of engaging communities in air quality. Our working group involved two environmental protection professionals (Keith Dooley, Liverpool City Council and Simon Kirby, Blackburn-with-Darwen Borough Council), a representative from a local social enterprise focused on connecting communities to improve their local environment (Ruth Livesey, Regenerus), and two public advisers (Paul Moran and Neil Joseph) as research partners in each stage of the process. The working group met regularly at key points and communicated via email. Stakeholders provided a varied perspective and were involved in: refining review questions; reviewing summaries of the literature identified; deciding what data was important to collect from the literature; checking the accuracy of the data that was extracted from the literature; highlighting themes from the findings that were most important and contributing to the write-up of the review.

This public and professional perspective influenced stages of the review process, from ensuring that review questions were pertinent to local communities and organisations, adding insight into the interpretation of the findings of the review, and tailoring strategies to share the findings. There was real value in involving not only members of the public affected by air pollution, but professionals who are responsible for developing solutions to address air quality. We asked stakeholders to feedback on their experience of being involved in the review process.

“This experience has expanded my knowledge of air quality monitoring approaches and air pollution challenges and also reminded me how much I do know about community led solutions to local issues”- Ruth Livesey, Regenerus

“The research really highlighted the issues air quality causes in my area. I was happy to give my opinion and was surprised how much I could contribute to the working group. I have changed my behaviours now that I understand the impacts air quality has on children and have considered our environment when planning activities with the community group I represent. The research has also given me confidence and made me look into other research across Liverpool and I am now an ARC public adviser and theme co-lead.” – Paul Moran, ARC NWC Public Adviser

“I believe I was most effective in providing technical and scientific advice to the group on air quality, specifically with regards to air quality monitoring, and I was able to provide some insight on how local government tackles air quality and the challenges faced by local councils.” – Keith Dooley, Liverpool City Council

We further describe our approach to stakeholder engagement using the GRIPP2 reporting checklist in our review article.

Engaging communities in addressing air quality: a scoping review.

GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research.

It was September 26th and a small group of public advisors and students met up on zoom for the second NIHR ARC NW Journal Club (JC). The Patient and Public Involvement and engagement (PPIE) related paper that we – Robert MacDonald (public advisor) and Elisa Jones (PhD student) – had chosen was: ‘The Snakes and ladders of user involvement: Moving beyond Arnstein’ by Jonathan Quetzal Tritter and Alison McCallum (2006), from the journal health policy.

See https://www.sciencedirect.com/science/article/abs/pii/S0168851005001314

Why this paper?
Both Robert and myself had read about Arnstein’s ladder and come across it in different places. Robert in his work in architecture, design and art and myself as a research assistant supporting researchers to carry out PPIE in a previous job. We had found that the ladder often pops up in PPIE talks and sometimes in guidelines, but you don’t often hear much critique of it. In their paper, Tritter and McCallum (T & M) bring up a number of interesting ideas: what they think are the missing rungs on the ladder; a discussion on ‘lay expertise’; the different justifications for carrying out participation and what they call the dangerous snakes that might lurk in involvement activities. We thought this paper might be good for a discussion as the public advisors at NIHR ARC NW and PhD students would have a range of different experiences of ‘participation’ which could be drawn upon when we discussed the paper.

What is the paper all about?
This paper takes a closer and critical look at Sherry Arnstein’s ladder of citizen participation. The ladder was devised in 1969 and according to Arnstein was meant to be provocative. It takes a look at the different types of ‘participation/non-participation’ that Arnstein had come across in her work in urban planning/development. There are 8 rungs on her ladder, which are divided up based on the amount of power that citizens are allowed. It runs from Manipulation (at the bottom) right the way through to Citizen Control at the top (You can read more about the ladder here – https://www.thinklocalactpersonal.org.uk/Latest/Co-production-The-ladder-of-co-production/ )

T & M take the ladder of participation and bring it to the context of user involvement in health. They provide lots of background information and history to this kind of involvement, before going on to describe some of the problems they’ve spotted with the ladder. Many found the paper a bit tough and long, with lots of complicated words and jargon in it.

Some key things from the paper that popped out to us:
Missing rungs on the ladder
– Different patients or public will require different methods (e.g. some people may not have the time to be a patient partner in a project, but might be happy to have a one-off chat with a researcher)
– If power is transferred then the workload and responsibility for the project would also need to be transferred, the paper asks is this realistic?
– T & M also discuss the tension of involving some people intensively and involving many people in a limited way.
– They write that Arnsteins ladder is too simple, that it implies that PPI should be aiming for ‘citizen control’.
The dangerous snakes of involvement
If citizens get control over the health care system, this could lead to what T & M call ‘the tyranny of the majority’. This Citizen control will lead to service provision that meets the needs of some groups more than others. It could start a new class of ‘user’ elite (E.g. Only those users who have the time, skills and motivation to be involved will be able to).

Here are the questions we discussed during the meeting:
1. Had you come across Arnstein’s ladder before? Do you have any views or thoughts on the ladder? Do you have any views or thoughts on Tritter and McCallums ‘new approach’? (e.g. the mosaic)
2. Have you been involved in different projects in different ways, where do you think they would sit on Arnstein’s ladder?
3. Have you thought about ‘power’ before in your PPI work and who has ‘power’? Is this important to think about? Does transferring power to public/patients lead to better involvement? (e.g. is co-production better than consultation?)
4. What justifications are there for PPI? What do you think of the justifications offered by Tritter and McCallum? (e.g. accountability; funding; consumers)
5. Have you come across any ‘dangerous snakes’ in PPI? Are the dangerous snakes that Tritter and McCallum discuss ones that you have seen or think could happen if citizens have shared control?
6. Are there any differences between ‘lay expertise’ and ‘professional expertise’? Do you have any views or thoughts on this? Can a public contributor be ‘too expert’ or become ‘too expert’ over time?

Reading and discussing this paper provided an opportunity for us all to reflect on our own motivations for carrying out PPIE. Some public advisors voiced that they did not want to reach the top of the ladder of having ‘citizen control’, that aiming for collaboration was what was important to them. One advisor stated they felt it was about having a collective aim or understanding about where you are going and that everyone plays their own part in achieving that.
Some expressed feeling that they were are on a moving machine of carrying out lots of involvement everywhere and it was hard to stop and take time to think. Is it important to build in more reflection time into our PPIE practice?
The paper inspired us all to take a step back and consider not only the usual question of ‘Is our involvement working? But perhaps more importantly: What are we even trying to do when we carry out involvement?

Selina Wallis, Public Involvement Manager at ARC NWC said: "Having the time and space to discuss research and involvement/coproduction with PhD students who are starting out in their research careers and public advisors is a wonderful opportunity to get beyond research abstracts and get into the detail of how research is planned, enacted and disseminated. Hearing differing voices, respectful disagreement and combining lived experience from both sides is both challenging and fun. Journal clubs have been used across many settings to improve critical appraisal and build leadership and presentation skills but in a setting with differing stakeholders, have been found to generate culture change and build relationships, it's that that we are hoping to achieve here, especially as we move into the final years of the ARC where we hope to co create ideas on how we can reshape the dominant narratives around research creation with collaboration and coproduction as a focus."

There was interest on twitter about the club with tweets reaching over 1250 people. @unlockingbirth @arcnwc

See:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9278475/
https://onlinelibrary.wiley.com/doi/full/10.1002/jmrs.569

The next journal club in Nov/Dec will be announced soon. Contact the PPI team for info
selinaw@liverpool.ac.uk