OPINION: Tonight’s movie is a set in a dystopian future and stars your local A&E department. Dr Tom Monks

If you surf to a news website right now or flick on the TV news this evening, you might for a moment think that you watching a bad science fiction movie of a dystopian future starring your local A&E department. Sadly, it is real. The news has gone mad about A&E and the waiting time crisis that it faces. This morning the BBC reported that only 82% of patients are meeting the four-hour waiting time target. It doesn’t make pleasant reading. It also isn’t easy to understand what is happening or why. Terms such as ‘inappropriate use of A&E’ and ‘trolley waits’ are thrown about without much explanation. I am going to try and explain some of the complexity around what is happening in A&E and why I think we are looking in the wrong place for improvement. Hopefully by the end of this blog you will agree with me. But don’t feel you must.

Inappropriate use of A&E

Just to be clear, I don’t particularly like this term, but there is a lot of talk about inappropriate use of A&E. Seven-day access to GPs has been promoted as a solution to inappropriate use. If we look at datasets such as the Hospital Episode Stats, we can see that between 30-40% of patients are discharged from A&E with no treatment or advice only. These are patients that could potentially be seen by an alternative health service such as GP surgery. As a caveat, this figure has been hotly disputed; although I do not know of any public data to support that argument. If you have some then please get into contact.

So, problem solved? Well not really. Out of those patients who inappropriately attend A&E we estimate that between 15 – 25% would be willing to see a GP on a Saturday or Sunday. That is, at best seven-day access has the potential to reduce A&E usage by 10%.  When you do the arithmetic, and add in other potential users of seven-day GPs such as 111 referrals and the odd random walk-in appointment then our estimate falls to a 3% reduction on average. This estimate agrees with work our sister organisation GM-CLAHRC work looking at seven day access. In terms of the what public say that they want from GPs, we can look at the survey of general practice. This found that a ~80% of people do not feel weekend opening is an issue, but that some people such as the young or those that work might find it useful. Opening on a Sunday is unlikely to improve access.

The headline figures are not the full story

When we read about our local A&E we are often presented with a figure such as 80% of patients were seen within four-hours. These figures can be broken into two chunks. Many A&E departments separate patients into two groups each representing a level of emergency. Patients who walk into an A&E are often seen in a ‘minor’ emergency area. The processes here are relatively simple and minor patients have the best chance of being seen within 4 hours. Some patients can also be dealt with outside the A&E in what is called ambulatory emergency care. Minors and ambulatory systems can make efficient use of space and resource. But crucially they have relatively little reliance on inpatient beds that are a very scarce resource within a hospital.

The same cannot be said for major emergences. These are the people who are most likely to wait over four hours. You can see some of these poor individuals in the recent dystopian news stories covering the A&E crisis. This is a depressing picture of people lay on trolley beds in corridors or, even worse, outside in a large ambulance called a jumbulance.   This is happening because the hospital process is gummed up. It is just like when you fill up your bathtub and leave the taps on. To avoid the bath overflowing you need to periodically remove the plug. The same is true for A&E. Typically, between 30 and 35% of major emergencies require an inpatient stay. There needs to be regular movement of these patients from A&E to in-patient beds or else the hospital overflows. And in this case, we are not talking water on your newly tiled floor.

Once we breakdown the results like this we can see that targeting patients with minor aliments is not an answer to the A&E crisis. We need to find a way to help patients in majors.

We have been looking in the wrong place

We need to acknowledge that the A&E crisis is a systemic issue. I recently went to a physio appointment where it turned out the pain in my arm was caused by a problem in my back. Massaging my arm helped a bit, but it just alleviated the symptoms for a short time. The pain was back with reinforcements the following week. The A&E crisis is similar; it is a symptom of wider problems.

At one level, we can consider how an A&E interacts with the rest of a hospital. We know that as hospitals progressively get more full there is an almost exponential increase in admission waiting times and A&E overcrowding. It’s clear then that reducing average occupancy is paramount. To put it another way this means that some of the beds need to be empty for some of the time. This reserve capacity helps absorb the peaks in demand. To free up capacity hospitals are focussed on patients who are in beds who no longer need to be there. We know that this group of patients has grown substantially over the last few years. This brings us to the second level of systemic thinking: what happens outside the hospital affects the number of beds required.

The NHS publishes information on people in beds who no longer need to be there in the delayed transfer of care statistics. The chart below plots the areas where we have seen the biggest growth in delays: the setup of care within patient’s own home and finding a nursing home place. To demonstrate that there hasn’t been growth across all areas I have also plotted patient and family choice. This has fluctuated but not seen growth like the other two areas. Before we jump to the conclusion that this is simply a capacity problem in social care and nursing homes, I want you to think about bath tubs again (sorry). There are two ways to control the level of water in a bath tub, as a bath has taps (inflow) and a plug hole (outflow). Reducing the water inflow by even a trickle can have a large cumulative effect over time. In the case of hospitals, there is always going to be a tipping point where an individual requires a visit to A&E and subsequent inpatient treatment, but we must not forget that it is not just about getting people discharged. I believe that many NHS and social care organisations recognise this, but often the most visible and tangible area to tackle are delayed transfers of care.

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Fig 1: No. of patients with delayed transfers of care by month. Source. NHS England.

This is not to say that the processes within an A&E could not be improved. Having spent time in A&E as part of a research project, I am convinced that some micro-optimisation can be done and would help alleviate the pressure. But, just like my bad arm, it is a temporary fix that will flare up again in a few weeks’ time. The singular focus is not helpful. We are looking in the wrong place for solutions.

So, what can be done?

Let’s be clear. No one has the answer at this point. So, the first step is to beware of media savvy talking heads selling snake oil. I do believe that we are now able to start to rule out some so-called solutions. Or at the very least to acknowledge that the benefits of some proposals do not include reduced A&E use. This isn’t the same as solving the A&E crisis, but it will allow us to move on and think through what else might help.

Throwing in my two cents, I would say we need to make better use of data and analytics (but then I would say that because that is what I do). I was intrigued to see that a recent report commissioned by NHS England recommended the creation of an NHS DataLab. What a brilliant and exciting idea. Classic improvement work focuses on introducing a new service to solve the problem. This is not sustainable and in my opinion makes the system more complex. A big focus of data science work to alleviate the A&E crisis could be on dis-investment in services and re-investment elsewhere; for example, in managing frailty and multi-morbidity as opposed to single diseases. This won’t be easy, but the reality is that there is no more money.   I would also hope that any NHS data science initiative will not forget mental health, social care, nursing homes, voluntary services and self-directed care.

Sorry for the long blog. It is complicated issue. This is just the tip of the iceberg.

Dr Tom Monks leads the Methodological Hub here at NIHR CLAHRC Wessex –

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Dr Tom Monks

Location, location, location – The social factors making a difference to kidney health.

img_4707Dr Hilda Hounkpatin

Many of us don’t fully understand what our kidneys are for or how they work, but they are important to all of us. A team of us a CLAHRC Wessex have been conducting a big research project to find out more about something called ‘Acute kidney injury’, which is when the kidney suddenly stops working properly. This can make people very ill by causing a build-up of waste products in the blood and upsetting the balance of fluids in the body. As a result, people with acute kidney injury can have longer hospital stays and can experience serious consequences, such as needing dialysis or even dying.

Some people get acute kidney injury while in hospital, for example, following a major surgery or an infection, but most (approximately two thirds) of all acute kidney injury cases start when people are not in hospital. Some of these people may end up going in hospital but some are cared for at home. For these people who get acute kidney injury when they are not in hospital, it can start for a number of reasons such as an infection, but not much is known about who is at most risk of getting it.

We have been using routinely collected health data to try and understand this non-hospital acute kidney injury better. This data contains information on blood tests used to detect acute kidney injury and can be used to identify people at risk.

Our research has come up with an interesting finding. It shows that people living in less affluent areas are more likely to have acute kidney injury than people living in more affluent areas.

Not only that, but the difference between more and less affluent areas most striking for this non-hospital acute kidney injury.

This study helps us understand who is more likely to have acute kidney injury and how best to reduce or even prevent the problem.  Clearly there is more work to be done to understand why there are these differences. Our work suggests that efforts to prevent AKI or reduce its impact might be best focused on socioeconomically disadvantaged areas.

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This research links to work we are doing with GPs and practice teams across Hampshire to help improve the detection and prevention of this non-hospital acute kidney injury. We are also working to develop a tool that doctors and nurses can use to identify people at risk of acute kidney injury that happens out of hospital, with the hope that some cases can be prevented or treated early. This, together with the new national NHS programme of alerts to detect acute kidney injury can reduce the impact of this serious condition.

Using Health Systems Analytics to help the NHS improve the quality and equity of services -Dr Marion Penn, Dr Rudabeh Meskarian and Dr Thomas Monks

In Hampshire, Solent NHS Trust and Commissioners are making use of advanced Health Systems Analytics to visualise their demand, and support their decisions about the how many sexual health clinics should be funded to meet future patient need.

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The logistics and operations of sexual health services

Sexual health care in Hampshire is provided through a network of hub and spoke clinics. The hubs are large clinics that are located within the urban centres.  The spokes are smaller clinics located in more rural areas of Hampshire.  Journey times to urban centres vary substantially across Hampshire.  This can make life difficult for patients, particularly as young adults are often the ones with sexual health concerns. They may have limited access to transport or may be put off from making a long journey to receive treatment or advice. The spokes aim to increase the equity of access to services for patients who live in outside of the major cities.  The more spokes that are in operation the more likely it is that a patient lives near a clinic.  Of course, there are also facility, workforce and travel costs to consider.  More clinics increase all of these costs.  Large networks of services are also incredibly difficult to manage.   A patient who walks to a clinic in the west of Hampshire should receive the same standards of care and access to treatment as patients in the East.

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In early 2016 the NHS in Hampshire faced the difficult task of reviewing the provision of sexual health care.  A balance was needed between equity of access, quality of care and costs.  The NHS teamed up with Health System Analytics experts from the University of Southampton to explore how to meet these aims.  The team were part of the National Institute for Health Research’s (NIHR) CLAHRC Wessex. The NIHR CLAHRC programme is a five year £10 million research programme in health funded until 2018.   The Wessex region has developed an Analytics team to support the NHS in complex issues regarding operations and logistics that affect patient care.   The team has experience in analytics for improving the quality and reducing the cost of patient care.

The untapped potential of Health Systems Analytics

Health systems routinely collect a wealth of data about patient usage of services. Records are often kept on patient demographics, referrals, appointments, diagnoses, prescriptions, procedures performed, time spent in hospitals and follow-up actions.  Given financial and time pressures, the NHS rarely exploit such data to their full potential. Analytics offers the NHS a suite of easy to use tools and solutions for data ‘wrangling’ and exploring new ways of delivering patient care.

Analytics can also be delivered quickly. CLARHC Wessex’s Health Systems Analytics team delivered results within two months.

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Potential uses of analytics for health data include building a geospatial understanding of demand for health services; identifying areas with greater care needs; identifying inequities in service provision; increasing the quality of services (such as reduced waiting times or better patient outcomes); forecasting future demand; understanding the causes of poor and good performance; predicting pathway usage and health needs, and identifying safe opportunities for disinvestment.

Descriptive Analytics: Visualising the usage services

Each financial year the Hampshire service collected information on over 200,000 appointments from 28 regularly held sexual health clinics.

To investigate demand, a Geographic Information System (GIS) was used to visualise both the clinic locations and patient population centres.  Population demographic information could also be added to maps to illustrate factors such as deprivation; car ownership; and patient age or gender.  A GIS also provides estimates of car and public transport (bus) travel times between locations.  This enhances the investigation of the equity of service provision.

Example visualisations can be seen in Figures 1-2.

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Figure 1 – Example of GIS visualisation

Figure 1 illustrates a map of clinic hubs and spokes (red dots); demand (blue dots) and car ownership (shaded green) by postcode sectors e.g. SO16 4.  It illustrates that large proportions of the population that live further away from the hubs own at least a single car.  While the population that live in cities near the hubs can rely on more frequent public transport.

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Figure 2: Example journey time visualisation

Figure 2 illustrates car travel time to clinics using a tool called a box and whisker plot.  These are simple graphics to illustrate the spread of data.  The middle line of each plot is the median (50% of journey times lie above and below it).  The shaded box represents the middle 50% of all journey times that patients undertook.  The lines or ‘whiskers’ represent the typical range of journey times seen.  Lastly the dots outside the lines represent the odd few patients who undertook unusually long travel times.

Speedy and Greedy: The Power of Predictive Analytics

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So how do we identify which clinics could be closed and identify if potential new clinic locations provide a better option for patients?

Enter predictive analytics.  These are powerful data centric approaches to ask what if we ran health services differently or what will the population look like in 10 years from now.

If we wanted to minimise both the number of clinics needed and maximise the number of patient journey times within 30 minutes there would be 1.9 x 1040 combinations to explore in Hampshire.  To put it mildly, this is a trifle tedious to do by hand.  Predictive analytics offers the ability to produce good solutions in less than one second using a greedy algorithm.  To explain this approach, you can think of the algorithm as an individual who has the ability do arithmetic very quickly and who never regrets any of their decisions.  Think of the map we saw in Figure 1 as a completed jigsaw where each jigsaw piece represents a discrete geographic region (for example, a postcode sector or a super output area).  Each piece of the jigsaw has a number of patients who live there and a known journey time to every other piece of the jigsaw.  Our person quickly completes a few calculations and removes the jigsaw piece that has the most patients living within 30 minutes journey time of it.  That area is then selected as a location for a clinic. The pieces that are within 30 minutes journey time are also removed.  As our person has no regrets, once a jigsaw piece has been removed it is never returned.  This process is repeated with the remaining pieces until no further pieces of the jigsaw can be removed.

The great advantage of a greedy approach is that it does not rely on complex mathematics.  It also works extremely well for problems on a regional scale when compared to more complex approaches.   The approach is actually part of the wider analytics field of optimisation and heuristics.  These are powerful approaches used to solve complex combinatorial problems.

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Figure 3

Figure 3 gives an example of the greedy algorithm in action.  It illustrates the trade-off in 15 minute journey times versus the number of clinics that are funded. In this case it is possible to reduce the number of funded clinics from 28 to 14 and still have an equitable journey times for 95% of the population.  If 90% were acceptable than only 9 clinics would be needed; although it is advisable to consider the equivalent results that use public transport times.

Your algorithm is clever, but I want to do something slightly different…

mr-clever

The great thing about the process of Analytics is that it doesn’t end with a dull report stating “here is the answer”. To support the complexity of decisions in the real world Analytics has to provide adaptable solutions.  In a sense you can think of Analytics as a set of tools to facilitate decision making.  In this case, the NHS are making use of a predictive analytics tool to adapt the ‘solutions’ proposed by the greedy algorithm.  Why is this necessary?  It is because of the ‘we couldn’t possibly put a facility there!’ phenomenon.  There are many reasons why a mathematically equitable solution doesn’t work in the real world ranging from ‘there is no car parking in area x’ to ‘this facility requires expensive renovation’.  Predictive analytics algorithms can be written to take account of such factors, but it is often difficult to (quickly) gather the right data to make it work or indeed include everything relevant.  Worse still, complex models often make it difficult for decision makers to understand and trust results.

The best part is that predictive analytics tool can be implemented in Microsoft Excel which is on the desktop of every NHS employee. The tool, in this case, allows the NHS to use the solution suggested by the greedy algorithm as a starting point. Clinics can then be‘turned on’ or ‘turned off’ to see the impact on travel times.  This flexibility allows for qualitative information about parking, facility conditions or good old fashioned politics to be quickly taken into account.  The tool also provides guidance on capacity requirements as well by quantifying likely shifts in demand on each clinic.

Analytics is making a real impact on the NHS

The financial pressures on the NHS are increasing by the day. Public scrutiny of decisions affecting the equity and quality of patient care is also at an all-time high.   The good news is that Health Systems Analytics is showing signs of making a real tangible impact in the way decisions are made regarding the future of healthcare services in the UK.

“The advanced Health System Analytics work undertaken by the NIHR CLAHRC Wessex Methodological Hub was a key element of our transformation project to review and redesign local sexual health services in response to reducing financial resources and increasing demand.

The analysis gave us a detailed understanding of how far our residents were travelling to access different services within existing clinics and identified inequities in service access in some parts of the county which we have now been able to address. The analysis also enabled us to forecast future demand for services and to model the impact on footfall and operational capacity of introducing alternative models of service delivery, including  home-sampling kits for STI testing.

As a result of the analysis we have a much better understanding of current and future demand for sexual health services and the optimal location of clinics to provide equitable access. This knowledge has informed our recent procurement requirements and provided us with the information and confidence to reduce the number of clinics we require to meet the evolving needs of our population, providing savings in relation to estates, workforce efficiency and travel costs across the local system.”

rob-carroll-cropRob Carroll – Public Health Manager, Hampshire County Council

Marion, Rudabeh and Thomas are researchers who work for NIHR CLAHRC Wessex, Faculty of Health Sciences, University of Southampton. They can be contacted via Thomas.monks@soton.ac.uk

Solent NHS Trust is the sexual health services provider and funded this project

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Dr Rudabeh Meskarian

 

 

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Dr Marion Penn

 

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Dr Tom Monks

Prioritising the fundamentals of care with patients, professionals, carers and the public – Anya de Iongh

As PPI Champion for the Fundamentals of Care theme within NIHR CLAHRC Wessex, I’ve a great experience and opportunity to be an equal member of a team developing the research priorities for this area of work. Crucially, these weren’t priorities that we developed together in a closed room, but rather they were co-produced at several stages.

When looking at other research priority setting work that had been done, we were struck how the ‘patient involvement’ was often limited to a choice of pre-determined items. We likened this process to having to choose from dishes on a menu, and wanted to make sure that in our work, we worked with carers and the public to design the “dishes” to go on the menu that matched their tastes and preferences, rather than just offering a choice from a list of research ideas received from health care professionals.

There is never a one-size fits all way of working with people with health conditions, their carers and the public, so we used a few different approaches.

So those conversations started. But they started with where people were – in two ways. Firstly, instead of requiring the self-selecting interested people to come to a workshop on our terms, we went out to Age UK lunch clubs and day care centres, as well as an Alzheimers support group coffee morning. Being able to have one to one informal conversations with people in an environment that they felt comfortable and relaxed in was important, and the opportunity to talk and hear from people who wouldn’t ever respond to a traditional approach, such as coming to a workshop.

Secondly, aware that priorities and fundamentals of care can be somewhat abstract concepts, we began the conversations by asking about their experiences and rooted the conversation in their stories, and what felt important to them.

This was done in tandem with an online survey to give opportunities to a range of different people, including those from seldom heard groups, across the geographical region of Wessex.

I was surprised, despite having done various bits of work with universities before, just how long it took! I’m very open that I am a rather impatient patient, and the pace of change and action within academia often frustrates me. Taking time to really think through a process and everything surrounding it is important, but it doesn’t get away from the fact that if we’d all just sat behind a closed door and decided the priorities ourselves, it would have taken less time. But we wouldn’t have such robust priorities or insight into the rationale and reasoning of each area – essential to appropriate implementation of research questions that are true to the contributors.

Trying to justify the time needs to be done along with justifying and perhaps quantifying the added value that I brought as a equal member of the team designing and delivering this project, and the value added by all the others who were involved as patients, carers or members of the public.

The practical implementation and use of these priorities was always at the forefront of my mind. At one point this presented a real conflict.

I often described the project as “making sure researchers research what is important to patients, carers, the public and staff, and not just what is of interest to them.”

I also knew that in order to research the chosen priorities adequately, it would have be subjects that the team of researchers already had some expertise in… Within the constraints of what was possible to deliver with the team, we still had to keep it open and transparent enough to be a genuine conversation.

As the conversations with patients, carers and members of the public progressed, one of the overriding priorities was that something happened, that this wasn’t just about generating a list to gather dust on a book shelf somewhere, so the priorities of the patients aligned overall with what the team could deliver, and still created additional insights.

With my fears around that allayed, I was still anxious about how the dialogue was maintained as following the prioritization, the research studies to address the priorities were put forward. As with everything, there were many other pressures and influencing factors that determine what gets researched – an eye-opening experience for me, and helping shed layers of my naivety!

There is a very fine line between research that is genuinely informed by the priorities, or are we retrospectively fitting the priorities to research that has always been of interest to the team. My role has been to tip the balance in favour of the former, and challenge times when the researchers lapse into their comfort zones, and simply extend the work they know best.

How can we communicate that commitment to the priorities in a research proposal? I feel really confident and proud of the work that we have done as a team to co-produce the priorities, but have realized that this is just the beginning (albeit the end of the beginning), as it doesn’t count until we’ve developed and undertaken the research to address the priorities, true to the spirit in which they were chosen.

Anya De Longh
Anya de Iongh, PPI Champion, Fundamentals of Care Theme, Wessex CLAHRC

Anya also works nationally as a patient leader and locally in Dorset as a self-management coach with the NHS.

Read Anya’s research paper

www.thepatientpatient2011.blogspot.co.uk

Twitter @anyadei

The hidden role of pets in the management of mental health problems – Guest blog from Dr Helen Brooks

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Dr Helen Books from the University of Manchester

The recognition of the increasing emotional significance of relationships between people and animals takes on particular salience for people living with a long term mental health problem. Demonstrated benefits from pet ownership include reduced stress, improved physical health, increased social interaction and reduced loneliness.

Loneliness and isolation are key concerns for those living with mental health problems and having a support network in place is important for living everyday life. During difficult emotional periods people often report losing relationships with friends and family as well as connections with valued activities which maybe difficult to reconnect with. Emphasis is often placed on the importance of family, friends and interaction with other people. However, the role of pets within this support network is relatively underexplored.

A recently published a study conducted with colleagues from the University of Manchester and the University of Southampton in BMC Psychiatry we examined the role of pets within the personal communities of those living with a mental health problem from analysing interviews with 54 participants, 25 of whom had a pet.

Participants were asked to map personal networks using a diagram, which consisted of three concentric circles. Interviewers started the interview by asking ‘Who or what do you think is most important to you in managing your mental health?’ 

Participants could place network members in either the central circle considered most important, the middle circle, considered important but not as important as the central circle or the outer circle, considered important but not as important as the two more central two circles. Identified network members included friends, family members, health professionals pets, hobbies, places, activities and objects.

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The majority of pets were placed in the central, most valued circle of support within network diagrams. Pets were of increased importance where relationships with other network members were limited or difficult.

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Pets were implicated in the management of mental health through the provision of secure and intimate relationships not available elsewhere. Given the consistency of presence and a close physical proximity, pets were an instant source of calming, therapeutic support for their owners.

So with my pets I suppose although my Mum and Dad are very significant figures they’ve also got their own lives and lots of other things going on so I’m only one aspect of that life and I feel that the pets I suppose they depend on me and also I have daily contact with them and they also give me a sense of wellbeing which I don’t get from any [one else] because most of these interactions with my Mum, Dad, Diane, are all by telephone rather than physical contact and that’s the big difference is the empathetic physical presence. (ID 21, 10 birds, first circle)

Pets helped their owners manage feelings by distracting them from symptoms and upsetting experiences such as hearing voices and suicide ideation and provided a form of encouragement for activity.

But if I’m here and I’m having…having problems with voices and that, it does help me in the sense, you know, I’m not thinking about the voices, I’m just thinking of when I hear the birds singing (ID 2, 2 birds, first circle).

Participants in this study had more difficult relationships with others and experienced greater levels of stigma than those included in studies of the role of pets in the management of chronic physical conditions.

I think it’s hard really when you haven’t had mental illness to know what the actual experience is for someone who has had the experience. There’s like a chasm, deep chasm between us – a growing canyon. They’re on one side of it and we’re on the other side of it. We’re sending smoke signals to each other to try and understand each other but we don’t always. (ID 1, 1 cat, first circle). 

Pets helped their owners to manage this stigma directly by providing acceptance without judgment.

But he, his [the cat’s] love for me and acceptance of me never changed. (ID 7, 1 cat, second circle)

Participants described the various, different ways that pets connected them to others in, and beyond, their personal networks or to the wider social environment.

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Having two dogs myself, I could certainly identify with the characteristics attributed to pets in our study. I very rarely get down the road now without a neighbor or friendly stranger stopping to ask me about them and it’s true what they say that ‘there’s nothing better to come home to than a dog’s welcome’.

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Dr Brooks and her dog

I was surprised though by the range of roles pets played in the management of mental health problems from the perspectives of participants. Interestingly, for the people included in this study despite their potential value, pets were also not considered or included in discussions about their mental health care.

Given that service users currently feel distanced from healthcare and uninvolved in discussions about services generally, taking more creative approaches to care planning including the use of pets may be one way of addressing this because of the value, meaning and engagement that individuals have with their pets.

We think that our study provides the mental health community with possible areas to target intervention and potential ways in which to better involve service users in service provision through the discussion of valued experiences.


Ontological security and connectivity provided by pets: A study in the self-management of the everyday lives of people diagnosed with a long-term mental health condition.

Authors: Helen Brooks1, Kelly Rushton1, Sandra Walker2, Karina Lovell1 and Anne Rogers2.

1Division of Nursing, Midwifery and Social Work, University of Manchester, UK.

2 NIHR CLAHRC Wessex, Faculty of Health Sciences, University of Southampton, UK.

Corresponding Author: Helen Brooks, Division of Nursing, Midwifery and Social Work, Faculty of Biology, Medicine and Health, University of Manchester, Jean McFarlane Building, Oxford Road, Manchester, M13 9PL. Email: helen.brooks@manchester.ac.uk Tel: 0161 306 7784

Authors’ email addresses:

Kelly Rushton: kelly.rushton@manchester.ac.uk

Sandra Walker: S.C.Walker@soton.ac.uk

Karina Lovell: karina.lovell@manchester.ac.uk

Anne Rogers: A.E.Rogers@soton.ac.uk – See also https://nihrclahrcwessex.wordpress.com/2016/05/16/brief-encounters-by-professor-anne-rogers/

 

 

 

Breathe in the knowledge -by Lindsay Welch

lindsay-welchLindsay Welch is the Integrated COPD Team Lead; Solent NHS Trust and UHS NHS Foundation Trust

COPD or Chronic Obstructive Pulmonary Disease is a preventable disease and is one of the world’s biggest killers – it causes a narrowing of the breathing tubes and air sacs in our chest and lungs, reducing the amount of oxygen we can get into our bodies. There are several causes, air pollution and exposure to dust, but the main culprit is smoking. It is estimated that over three million people with COPD in the UK but only a quarter of those are diagnosed

Lindsay and her colleagues organised an event to coincide with World COPD Day in November 2016. These are her reflections on the day:

Planning a delivering a lung health awareness event, to promote lung health in the Southampton community was definitely a team effort. Previously we have aimed  to continue with the ethos to ‘find the missing millions’, case find, encourage those smokers or ex-smokers with enduring coughs breathlessness and recurrent chest infections, to seek help and get checked.  This year the theme was ‘Breathe in the Knowledge’ – a great opportunity to show case the services the Integrated COPD Team deliver in Southampton city and across Hampshire.

The planning group was made up of clinical and research staff from Solent, UHS, Southern, University of Southampton and NIHR CLAHRC Wessex research themes. Together we all had wonderful patient stories to tell the community, about the work we all do and can do for others.

Mal North kindly took on the task of pulling these ‘snapshot stories together, in a photo journal style. He said: “COPD is the fourth biggest killer in the world and the second highest reason for people to be admitted to hospital –– but around 80% of people aren’t familiar with condition COPD. We all know smoking has a link to cancer, but its link to COPD is just as serious. We have spent years researching the best ways to support and treat people with the condition, and this event shows just how driven we are to get the message out to people.”

The day itself – although in a small area of the front of Southampton General Hospital – was well received and represented across the whole patient journey through COPD.

COPD patient knowledge starts with recognition and help-seeking, the CLAHRC team, and the primary care COPD liaison nurse attended to show case their primary care work. The journey moved to pulmonary rehabilitation, learning and education about treatment, self- care exercise and staying well; teams for 3 trusts delivered a small exercise regime in the foyer.

The patients journey can often take a turn for the worst and they may face hospital admission due to acute episodes , or exacerbations of the disease; the UHS acute community respiratory nursing team were well represented and liaised with colleagues and public about the difficult work they do, taking unwell patients with COPD home from hospital.

Clinical deterioration of COPD and the end of life in COPD is a part of the pathway we should not overlook, further support such as oxygen therapy, or Non-Invasive Ventilation may be required to support patients to breath in the later sections of their disease.

Dr Havelock the Consultant from Southampton Respiratory centre and Lead for the Oxygen service attended for the day – along with nurses from UHS and Southern Health supported discharge teams, who often manage these acute phases of the disease in patients’ homes.tom-havelock

He commented “How great it is for patients to be able to have all of these services working together.. This way we can support the patient on their illness journey through the right services at the right time, and in the right locality.’’

World COPD Day was a well-received public awareness event in which clinical experience could be shared and knowledge gained as well and achieving the aim of giving public knowledge of COPD.

  • 20% of COPD is not smoking related
  • COPD kills around 30,000 people a year in the UK, second only to lung cancer at 35,000 people a year
  • Around 3 million people in the UK have COPD, but 2 million are undiagnosed
  • Up to a quarter of long-term smokers will go on to develop COPD

More information on COPD from the British Lung Foundation

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Denise Burgess from Hythe near Southampton has been living with COPD for 15 years, and benefits support from NHS specialists working with her GP “Life’s much better. Things are so much brighter now I can breathe. I know there’s no cure but I can live with it now.

My husband Brian and I can walk for miles now. I couldn’t make it down Lymington High Street before but now I can walk and just keep on walking. We had a party earlier this year for my daughter and I got up and danced. She said she hadn’t seen me do that in years!

My next target is to get to West Quay to do the Christmas shopping for everyone. It’s something I could never have done before. Then the next big thing is to fly to San Francisco next year to see my daughter and grandsons.”

Denise was diagnosed just after her daughters wedding in 2001 when she was just 52. She started to be sick from the build-up of mucus in her lungs. “It was those stupid cigarettes” she adds.

What’s at stake with Kidneys – Dr Simon Fraser

sf1z07_jpg_sia_jpg_fit_to_width_inlineDoctor Simon Fraser is part of a team conducting the Hampshire Acute Kidney Injury study which is part of the Public Health and Primary Care theme of NIHR CLAHRC Wessex. He writes:

Kidneys are incredibly important to the human body. Among other things, they deal with fluids that we drink and help to regulate important functions like blood pressure. Acute kidney injury is a term that means, simply put, that the kidney stops working properly over a matter of hours or days. It can lead to serious health effects and longer hospital stays. This can happen for a variety of reasons. Sometimes it can happen in hospital, for example following major surgery, or if someone has a significant infection. Quite a bit of research has gone into working out how to detect and prevent this hospital acute kidney injury.

However, it is thought that as much as two thirds of acute kidney injury happens to people who are not (or not yet) in hospital. It can happen to people who become unwell with an infection at home, for example. Less is known about who gets this kind of acute kidney injury and how best to prevent it.

Acute kidney injury can be detected by changes in quite commonly used blood tests. Our research has been using information from those routine blood tests to find out more about this ‘community’ acute kidney injury. The aim is to provide information for people who might be at risk of acute kidney injury and for doctors and nurses looking after them.

We have found that about two thirds of all acute kidney injury first arises in people when they are not in hospital. We have also found that about a third of all people with the problem are not admitted to hospital and are looked after in the surgery or at home by their GP and community nurses.

As part of this research programme we have therefore been working with kidney experts and GPs across the region to remind everyone involved in caring for people out of hospital of the importance of looking after peoples’ kidneys, to learn about acute kidney injury and how to prevent it. Often it is down to simple things such as people who become unwell remembering to drink enough fluid. Sometimes it requires making careful judgements about whether to stop certain medications or to use particular antibiotics. It has been a great experience to work with our excellent clinical teams across Wessex and to share our research on this important area.

Contact Simon by email S.Fraser@soton.ac.uk

 

COPD WING takes off – a report by Mal North

The inaugural meeting of COPD Wessex Integrated Network Group (COPD WING) took place on the 9th November 2016 in Southampton.

The group has been set up to bring together people from across the Wessex region who has a vested interest in Chronic Obstructed Pulmonary Disease.

Health care professionals and patient groups attended the evening along with representatives from local Clinical Commissioning Groups, South Central Ambulance Service, smoking cessation services and the Wessex Academic Health Science Network.

The event chaired by Professor Tom Wilkinson started with poster presentations describing how individual services and work groups within Wessex are involved in the COPD patient pathway and Networking.

This was followed by an inspiring presentation by Dr Nick Hopkinson, Consultant Chest physician from the National Heart Lung Institute and a member of the London Respiratory Network who talked about some of the successes of their network group and some lessons learnt .  This was followed by a presentation from Dr Rachel Summers who spoke about her experience of setting up the NEWER group, a network group set up for Physiotherapists in the Wessex area. The delegates at the meeting then broke off into break of groups to discuss how the group could influence education, areas of research and collaborative working in Wessex and the future development of the COPD WING. So far feedback from the event has been extremely positive and constructive and will be taken in to consideration for future meetings.

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Professor Tom Wilkinson, leads on NIHR CLAHRC Wessex Integrated Respiratory Care Research said “ It was really exciting to see so many people from a range of  disciplines attending the evening  and making such  an active contribution to the network launch. It is about time we came together as a community to co-develop plans: to improve care for patients with COPD, to prevent the disease and to lobby for appropriate resources. We have made a great start and hope that future events will attract even more members from the Wessex area “

The next meeting date has yet to be organised however should take place early in 2017

If you would like information or to attend future meetings contact Helen Kruk on Helen.kruk@uhs.nhs.uk or 023 81 20 8633

This week also marks World COPD day for more information see and read Denise’s storydenise

 

Are some social networks better for self-management than others? Dr Ivaylo Vassilev, Senior Research Fellow

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The everyday management of a long-term condition is almost never done by individuals in isolation from others. The networks of relationships around people may include family members, friends, neighbours, colleagues, health professionals and even pets all of who play an important role in the management of long-term conditions. This is through, for example, their knowledge, support, help with accessing services, resources and valued activities.

But are some types of networks likely to provide better support for long-term condition management than other network types? Are for example networks with lots of support from family members or those where there is frequent contact with network members better for managing illness? Or is there a particular combination of network characteristics that is most likely to be optimal?

In order to answer this question we analysed survey data collected from 1682 people with type 2 diabetes in six European countries: Greece, Spain, Bulgaria, Norway, United Kingdom, and the Netherlands.

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We found five network types that combined different network characteristics: restricted networks, minimal family networks, family networks, weak ties networks, and diverse networks. People with a ‘restricted’ network were the least likely to manage their condition well. These were people who had very few social network members and were likely to only be in contact with a partner and/or a live-in child. People with restricted networks were highly isolated, received limited support from members of their network, and had poor self-management skills.

It was people with a diverse network who were the most likely to manage their condition well. These were people who had many and varied types of network members (not just family, but also friends, activity groups and acquaintances) and who were in frequent contact with all of them. People whose networks were primarily constituted of family members were not managing their illness as well as those with diverse networks. This was the case even when they had many family members around and were in frequent contact with them. 

The findings from this study suggest that increased social involvement with relationships beyond the family is linked to greater self-management capacity. It is networks where there is a diversity of types of relationships that constitute the optimal network type for the management of long-term conditions.

Read Ivo’s latest paper on how people manage chronic illnesses in UK and Bulgaria

Where the NHS stops and online takes over – Chris Allen

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Chris Allen is a Research Fellow and a nurse in Southampton

There comes a point in everyone’s life when they get news that changes their life…of course it’s not always bad. Think “you’ve got the all clear” or “you’re going to have a baby”.

But what if that’s not so good. “You have diabetes” or “you have developed COPD”. In those cases firstly you might ask the doctor or nurse- “what can you do?” and “how is it going to affect me?”

So after a chat with your doctor or nurse, you may wander out of the room thinking “What’s COPD/Diabetes…?”

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The NHS is very good at telling you what’s wrong or right with you, and offering a treatment. But how well is it able to tell you how to live with it?

People may have questions such as: “how can I go out drinking with my friends?”, “which tube stations are wheelchair accessible?”, “should I tell a prospective employer about my condition?” Such questions may be better answered by people who have experienced these specific problems themselves.

At this point many people turn to the internet for answers. This can be through formal internet sites such as those run by the NHS or charities or through less formal ones such as Health Unlocked, to connect with those who have similar problems.

At NIHR CLAHRC Wessex we are looking at how people’s social networks and their communities support them to manage a long-term condition (That’s an NHS term for something like diabetes or kidney disease – so called LTCs.)

New technologies give us the opportunity to connect with others with similar interests, needs or concerns. Before the internet, it would have taken a long time to find someone who has experience of managing diabetes, whilst training for a marathon. But in these networked times it’s very easy to find someone who has encountered that very same, specific problem.

That ‘learning how to live with’ approach to a condition is often called self-management.

Until recently, research hasn’t specifically explored how social contacts online may support self-management.

There is a need to look at how online support may compliment traditional offline support from healthcare professionals, friends and family. More specifically, when such support becomes useful.

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This is where our research comes in. We’re speaking to people in Hampshire, the Isle of Wight, Dorset and Wiltshire, who use online communities for help and advice in managing their condition.

We ask people how they ended up using these communities? How people online have supported them in managing their condition? And – Where this support fits in with the rest of the support that they get from people offline such as their doctor, friends and family?

Essentially we are interested in finding out more about the types of support that online contacts provide and how this is different to other forms of support.

We look forward to letting you know how we got on .

This site promotes independent research by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Funding Scheme. The views expressed in this blog are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health