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.

online-support-chat

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
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.”

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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:

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“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.”

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Mark Stafford-Watson (left) is the lead public contributor for our work
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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.

TINY PIC NURSE

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

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