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

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.

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.

Where the NHS stops and online takes over – Chris Allen

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…?”


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.


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 .

Involving people in health research – Why we do it, and why you should too.

Anya De Longh
Anya was named Rising Star in Health Service Journal awards

These are the words from the people who help design, review and take part in health research here in the Wessex region. It’s commonly called Public Involvement or sometimes PPI, but it basically comes down to involving people in research that makes a difference in our community. People become involved for several and varied reasons; as a carer, someone with a health condition or as someone with an interest – what’s important is that they make a difference and we couldn’t be without them.

Anya: “As a patient myself, I wanted research to be aligned with what matters to patients, but with my wider experiences of patient leadership I felt that this was an opportunity to really help shape a programme from an early stage to ensure effective and meaningful engagement is part of everything they do.”

How do you think your involvement helps? “It ensures that conversations are person-centred and rooted in what matters to patients and carers.”

Sally’s view: “Several members of my close family (including me) have long term health conditions which require self management and I also have two recent experiences of end of life care.  As a user of services myself, and as a carer and relative,  I am interested in ways of improving the patient experience and providing the best possible care in challenging circumstances, and especially when the end of life approaches.”

Taken with Lumia Selfie
Sally Dace

“Patients, relatives and carers often come into contact with health services when they are most vulnerable.  Public contributors ensure that any research and subsequent implementation does not lose sight of this and that any changes have maximum benefit for patients and their families.”

Karen Postle got involved by meeting a member of our research staff on a bus, who she described as very persuasive. Karen said: “I have a long-standing interest in involving the public in research because I think we have a lot to offer as ‘experts by experience’. I used to work for INVOLVE so know how important it was for people to be involved and I’ve used health services a lot over the years. ”

Karen Postle

“The work can be very interesting but the amount of time you’ll be needed (and the) nature of your involvement depends a lot on which (research) theme you work with.”



Sandy Ciccognani is a working mum and regularly makes the journey from her home on the Isle of Wight to the mainland to support the work of CLAHRC Wessex.

She became involved because she wanted a new challenge and to represent her community: “In some research, people may be more likely to give honest answers to another member of the public rather than trying to give, what they consider to be the correct answer.”

Sandy carried out research into how the organisations that ‘buy’ health services (CCGs) communicate with the public

“In some ways I think it also helps researchers to be closer to the patients they are researching and reminds them that the subjects of their research are real people with feelings, full lives, etc..”

So what advice would our public researchers give to anyone looking to learn more about health research. Cynthia Russell has been working with our ageing and dementia research teams:

“Your voice needs to be heard in order to improve the healthcare provision not only of your loved ones, but to enhance patients and carer perspectives of health research. This will lead to a better service, a more empathetic service and enhance respect, leading to a comprehensive partnership in research for the future.”

Mark Stafford-Watson is our lead contributor and heads up the Patient and Public Involvement strategy Group called WISeRD. His background is not academic but he recently won recognition from Health Services Research UK for his work with researchers.
“It’s important that we make sure the right research is being done, and that that research is being done right.”

“My advice to anyone is to get involved, go for it. We can bring so much to our community and you never know where it will lead you to.”

Mark Stafford-Watson (left) is the lead public contributor for our work
Marks’s winning poster

If you are interested in being involved in health research email us
or call us on 023 8059 7983

The Recovery College Phenomena – Sandy Walker

I love being a researcher
Sandra Walker is a Senior Teaching Fellow in Mental Health at the University of Southampton

In 2015 I was fortunate enough to be awarded some funding from Solent NHS Trust to explore the networks of people with long term mental health issues. This project looked at how people manage their networks day-to-day and when they are in crisis, looking to see what the differences were between networks and how people negotiate the relationships within them. All the participants were recruited from community groups and many of the participants were students of a local Recovery College*.

As a researcher, I’ll be honest, I am most used to hearing people moan about mental health services so I was really happy to discover that there is a service offered which is widely held in high regard and thought it was worth highlighting that in a blog!

The Recovery College offers a fresh way of working that draws on the experiences and skills of people who have used mental health services and the staff who work in them.

They offer the opportunity to learn about mental health recovery and hope to inspire their students to take control of their lives. Many of those who attend this college have long term mental health conditions.

Students can attend a variety of courses, from one off sessions offering tasters for longer term courses on topics such as Mindfulness or education sessions about conditions, to skills for life which is a longer term programme which does what it suggests on the tin and teaches coping strategies and other skills to help students deal with what life throws at them. Students are people living with mental health issues, staff working in local health services and carers who are helping those living with mental health issues in the community.

One outstanding feature of this college compared to others that exist across the country is that it is situated within a local further education establishment, not within a mental health setting.

So what is so good about it?
Participants from my study (total number 25 with more than half being students at the college) suggested many things. The first that struck me was from someone who didn’t even attend the college at the time, she was already hopeful that it was going to be helpful and this optimism is an important issue in mental health work. Keeping hope when all appears to be lost is no mean feat, and it appeared that the reputation of the college itself was cause to believe it would help her. She said:

“I’m not actually starting until the New Year but that is something that I think is going to be really helpful to me.”

Other participants found the knowledge they gained about different mental health conditions useful, illustrated here:

‘It gives you an understanding which nobody had ever explained to me anything about any mental health illness’

They went on to say that this understanding gave them some comfort when considering how they were feeling. Also there was a sense of being seen as a valid individual, deserving of a good service:

“You feel like you are valued because they are offering this to you.”

The social element of the college was a key point raised by most who mentioned it:

‘‘The Recovery College is actually quite an important thing at the moment it’s just a way of again getting out, going somewhere that’s not medical and learning something and meeting people.”

“Having an institution specifically geared to being a space where people have mental health problems are normal that has been huge”

“I think just that acceptance without feeling judged or anything is just great for recovery, absolutely tremendous for recovery.”

Many had started their own support netwA young man suffering from depression sits and consults with hisorks comprised of those they had met on the courses, some of which had carried on long after the group themselves had ended:

“The friends that I’ve made while on a course at [the Recovery College] and we’ve got a little network’.
The implications in terms of long term support for these individuals is huge, especially in the current financial climate where long term support is a difficult thing to provide. The Recovery College appears to be helping people to provide it for themselves, at no cost. In these days of limited resource this is surely one area of mental health care that must survive.

*The Solent NHS Recovery College was co-designed and continues to be co-delivered by patients with staff support

Creating Clinical Academic Leaders in Nursing, Midwifery & the Allied Health Professions in Wessex: A Collaborative Training Programme – Dr Greta Westwood

In April, on behalf of the NIHR CLAHRC Wessex, Portsmouth Hospitals NHS Trust, the Faculty of Health Sciences University of Southampton and our Wessex NHS partners I had the privilege of presenting at the 6th NETNEP International Nurse Education Conference in Brisbane, NSW, Australia. I demonstrated how our collaborative training programme is creating clinical academic leaders in nursing, midwifery and the allied health professionals (NMAHP) in Wessex. I focused on developing the critical NHS engagement with both the NIHR CLAHRC Wessex and the faculty needed to advance the agenda. The presentation demonstrated the benefits and impact for all organisations, our NMAHP workforce and our patients.
The conference focussed on transforming education through scholarship, development of academic leadership and evaluation research. Approximately 400 delegates attended from across the world including USA, New Zealand, Netherlands, Denmark, Canada, Singapore, Sweden, China, Finland, Pakistan, Norway, Hong Kong, Japan and 23 UK universities (Edinburgh Napier, Huddersfield, Coventry, Manchester, Glasgow Caledonian, Chester, City London, Stirling, Nottingham, Birmingham, Salford, Bournemouth, Birmingham City, Keele, West of Scotland, Oxford Brookes, Surrey, Cambridge, Glyndwr, Belfast, Huddersfield, Kings College and of course Southampton).

Professor Lisa Bayliss-Pratt, Director of Nursing, Health Education England, presented the development of the Associate/Assistant Nurse role as recommended in “The Shape of Caring” publication following the Willis Report. As a call for action, Lisa has now established an international community of practice (CoP) to consider how this role has developed across the world and learning that is applicable to the English model.

Colleagues from Bournemouth University, Professor Steve Tee and Dr Sue Way were also present.


Sue presented the work of a Portsmouth NHS Hospitals Trust Clinical Doctoral Midwife Research Fellow, Dana Colbourne “Leading with a SMiLE: Exploring a Student Midwife Integrated Learning Environment”. Our own Dame Professor Jill Macleod Clark also attended, a great support for me and provided current NMC nursing curriculum plans.

A thoroughly enjoyable 3 days in sunny, beautiful Brisbane. It was a great chance to network with colleagues and develop those important relationships. I feel terribly honoured to have presented our work to this international audience. I so was exhausted after I treated myself to a weeks leave in the totally beautiful North Queensland, careful of course of the saltwater crocs!

Reshaping the workforce to deliver the care patients need

Yesterday saw the release of the Nuffield Trust’s report on “Reshaping the workforce to deliver the care patients need“. Asked to respond to news headlines that reported on this I responded to headlines that framed the reports conclusions as a solution to junior doctor shortages, for example on the BBC news. Of course, there is a […]

via Reshaping the workforce to deliver the care patients need — Workforcesoton

Brief Encounters – By Professor Anne Rogers

Primary care professionals have contributed a lot in recent years to meeting the medical needs of those with diabetes and other chronic illnesses. However, despite being viewed  by commentators as the big hope for progressing patient education and self-management support our most recent paper suggests otherwise. We might need to think again whether it’s a good thing to use GPs and practice nurses more in this area.

Our research undertaken with *Greater Manchester CLAHRC shows that in terms of ‘work force’ that non-health professionals provide more valuable support to people’s self-management than primary health care professionals.

Partners and spouses provided most support in terms the amount and intensity of illness, emotional and every-day work whilst most support provided in primary care professional input is work related to illness specific management (medication etc.). The provision of emotional support in Primary care is lower than that obtained from other network members (family, spouses, friends, groups and pets)


The intensity of support was also found to be  less than that received from other social network members. Primary care professionals can be described as providing essential but ‘minimally provided support’. This reinforces limited expectations and value about what primary care professionals can provide in terms of support for long-term condition management.  That needs to be taken into consideration in looking at how we might look outside professionally dominated networks to think more imaginatively about exploring how extended self-care support could be enhanced out-with primary care.

A lot of unrecognised, imaginative and effective work is undertaken by the lay work force regarding long term condition management. Unlike the professional workforce it seems to operate with a positive care law – expanding and reacting to the changing needs of people.

untitled-infographic_block_2So thinking about building, valuing and engaging a network to mobilise resources for self-management support. We should look to open settings and the broader community rather than assuming that more has to be done by professional health care workers.

Anne Rogers professional 1 30PC smaller4147 - NIHR-stamps-senior

Anne Rogers is Professor of Health Systems Implementation and Research Director CLAHRC Wessex at University of Southampton.

*Collaboration for Leadership in Applied Health Research and Care (Wessex) or CLAHRC Wessex is one of a network of research organisations supported and funded by the National Institute for Health Research  which is the research arm of the NHS.


Hepatitis C – How many cases are out there?

Dr Ryan Buchanan

Ryan Buchanan is a specialist registrar doctor in liver disease and a PhD student supported by CLAHRC Wessex.

In my previous blog I described how a novel, award winning case-finding initiative was identifying some of the estimated 200 missing cases of Hepatitis C on the Isle of Wight and linking them directly to specialist care. The second part of this project, which I describe here, is an attempt to establish a more accurate estimation of the true number of missing cases in order to guide future service design and inform best practice elsewhere.

The main risk factor for Hepatitis C is injecting drug use and therefore we focused our survey on people who inject, or have ever injected drugs on the Isle of Wight. This as you can imagine is a difficult group to survey with people unwilling to come forward due to issues surrounding privacy, stigma and the illegal nature of drug use.

Other researchers have addressed these challenges by undertaking surveys in locations where people who have injected drugs frequent regularly and feel able to participate – for example, drug support or needle exchange centres. However, we chose not to do this because survey designs such as this only sample people who going to support services and are therefore likely to have different characteristics to those who are not. The results of such a survey would therefore not be a true representation of the whole local population of people who inject drugs.

We have used a survey method called respondent driven sampling. In this method survey participants are asked to invite two or three of their friends and associates, who might also be at risk of Hepatitis C, to come forward to the research team. In this way we are potentially reaching more of a cross-section of people who inject drugs and can therefore make a better judgment about how common Hepatitis C is in this population as a whole.


Diagram showing how respondent driven sampling works, participant 1 (green) is asked by the research team to invite friends and contacts to take part (blue), if these attend then that are also asked to invite friends to take part (orange). The survey continues in this way until a sufficient number of people have taken part to give meaningful results.

Respondent driven sampling has been used successfully before in people who have or are currently injecting drugs, usually as part of research looking at HIV. However, it has only been used in rural communities a handful of times and this brings unique challenges.

Our survey has now started, we began with a carefully selected sample of participants who were able and enthusiastic to take part in the research and thought they had friends who were also willing to do so. These initial participants have gone on to invite these friends to take part and these have gone on to invite others and so it has continued. We have faced challenges during the process particularly posed by the rural nature of the Island community where people who are eligible to take part often live a long way from their friends and the survey centre.

It is hoped that on completion of the survey we will have a better idea about how many cases of Hepatitis C are actually missing on the Isle of Wight and importantly the characteristics of those that are missing. This will allow us to tailor our case-finding initiative for Hepatitis C so that it is accessible to the people that really need it.

Dementia care at meal times in acute hospitals – Naomi Gallant

Almost a year on from my last post here and I’ve done a lot of work on my developing my research proposal – reading, learning, literature reviewing – but sadly not a lot has changed for people with dementia in acute hospitals. My desire to improve the quality of care, especially at meal times has certainly grown.


As part of my research training I have had the privilege of completing some observations for another large study in an acute setting. This involve observing acute hospital wards at different times of day – not specifically meal times, but some of my slots covered that period.

Why a privilege? Because it is so rare for anybody actually working on the wards to stop and watch for a prolonged period. It isn’t until you pause and observe that you realise the extent of the problem.

My observations and reflections:

  • Lack of meaningful activity or social stimulation is visible to a much greater extent than I realised. Sitting in a bay for 2 hours mostly produced results of very few staff interactions often lasting less than 1 minute.

  • The routine and culture is mostly task focused, allowing little flexibility from the rigidity of the organisational structure. I say “allowing” because I know there are thousands of nurses out there who are fantastic, who wish they could do more but are restricted by various pressures of the acute setting and the NHS.

  • Again, I noticed how staff pressures result in inadequate assistance at meal times: people with food they cannot reach, sat in awkward positions in the bed unable to bring the food to their mouth, struggling with packets and wrappers eventually giving up, asleep throughout the whole period. People with dementia were seen to be particularly vulnerable at this time, often ignoring the food for whatever reason or not getting the assistance they needed meaning full or half empty plates taken away when the staff were scheduled to take it away.

The resounding complaint of being “short staffed” is constantly ringing in my ears – yes it is highly likely this does contribute to quality of care at meal times.
Is it going to change? I don’t know.

What I do know is, there is scope for better quality within what we already have– what I really want to do is work within our restricted, stretched, task focused, short staffed system and see how we can change with the resources we have.

So, here’s the summary of what I plan to do:

  • Observations of meal times using Dementia Care Mapping. This will be used to measure people’s well-being and engagement during the meal time, and to gather and in-depth picture of what may influence the meal time experience. What a great opportunity to stop and stare.

  • Build a model of areas which influence the eating process for people with dementia on acute hospital wards. This will aid in conceptualizing the problems. I hope it can be used to improve care through education and training for health care staff.

  • Interview staff about the tools currently used to encourage eating and drinking, and what they see their roles as in this process. I look forward to developing from there.

Next step… ethics approval.

Naomi is a NIHR Clinical Doctoral Research Fellow in Dementia Care and Occupational Therapist supported by NIHR CLAHRC Wessex

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This Blog has also been published on the UK care guide website 

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