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What’s this all about?

Welcome to the inaugural edition of ‘Contributor Quarterly’ - or ‘CQ’ for short: NIHR CLAHRC Wessex’s’ very own Public and Patient Involvement (PPI) quarterly newsletter.

Designed to provide a succinct summary of headline news from the

organisation - both within and without PPI - we hope you will find it both

informative and interesting.

Want to contribute to this Newsletter?

Do you have a story you want to share, or a PPI-related achievement

you want to shout about? Please contact Martin Simpson-Scott.

Confusing words?

Are there any words or terms you don’t understand in this newsletter?

Why not see if our Jargon Buster can help?

Not in there? Tell us (anonymously) so we can add it…

Front cover: The neural tracts of the human brain, as revealed by modern 3D computer modelling (DTI tractography).

mailto:mdss1m17@soton.ac.uk?subject=NEWSLETTER%20ITEM%20for%20considerationhttps://app.box.com/s/sdtq2zvum7ew60tr5rbp5ebeh2w28p3lhttps://goo.gl/forms/3GcpPWrJh2gn6Mu83

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Contents

Item

Page

NEWS from the THEMES

3 - 9

o Theme 2 (Ageing and Dementia)

o Theme 3 (Fundamental Care in Hospital)

o Theme 4 (Public Health and Primary Care)

o Theme 5 (Engagement with Self-Directed Support)

o Theme 6 (Complexity at End of Life)

o Data Science Hub

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3 - 4

4 - 5

5 - 6

7 - 8

8 - 9

News from the Central Team

10 - 11

‘A Healthy Distraction’ - just a very small selection of

topical health-related featurettes to pass a few minutes!

12 - 13

Networking & Other PPI Opportunities - current

opportunities for our PPI contributors to get involved

with our, or our partners’ work

14 - 16

‘That’s a Wrap Folks!’ - your chance to tell us what you think about the newsletter

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NEWS from the THEMES

Produced with thanks to both our PPI staff links and Champions, for providing the

updates (where applicable) which follow.

Theme 2: Ageing and Dementia

Theme 2 PPI Champion Cynthia Russell has been accepted as a co-applicant for a

frailty-related research project. As a very new piece of news, the details are still to be

confirmed but the project will run up at Southampton General project. The very best of

luck with this Cynthia!

Theme 3: Fundamental Care in Hospital

Alongside other Theme-based staff, PPI Champion Anya de Iongh, Prof Lisette

Schoonhoven and Prof Peter Griffiths attended the Royal College of Nursing (RCN)

Research Conference in Oxford, in April.

It was a busy conference for Theme 3. Oral presentations were delivered by Chiara

Dall’Ora (‘The Association of nurses’ shift characteristics and sickness cover’) and

Alejandra Recio-Saucedo (factors affecting observations of vital signs in hospital

during the night shift: nurses’ perspectives). Dr Jo Hope delivered a poster

presentation (‘Managing night-time vital signs observations: the conflicting care work

of supporting sleep and preventing deterioration’), and Prof Lisette Schoonhoven

chaired, and also co-presented Symposium S8 with Peter Griffiths, Anya de Iongh,

Jo Hope and Dr Jane Ball (Improving fundamental care in hospitals: how priority

setting drives research).

http://www.clahrc-wessex.nihr.ac.uk/ageing-and-dementiahttp://www.clahrc-wessex.nihr.ac.uk/fundamental-care-in-hospitalhttps://scadmin.rcn.org.uk/professional-development/research-and-innovation/research-events/rcn-2017-research-conferencehttps://scadmin.rcn.org.uk/professional-development/research-and-innovation/research-events/rcn-2017-research-conferencehttps://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/professional-development/research/2017-research-conference/poster-17.pdf?la=en&hash=A46156DD618520A162BC2A142C42CF2DAA48AD67https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/professional-development/research/2017-research-conference/poster-17.pdf?la=en&hash=A46156DD618520A162BC2A142C42CF2DAA48AD67https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/professional-development/research/2017-research-conference/s8.pdf?la=en&hash=41555C227D5FEE20EA2DE0F7DDB97D24485634C3https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/professional-development/research/2017-research-conference/s8.pdf?la=en&hash=41555C227D5FEE20EA2DE0F7DDB97D24485634C3

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With reference to the Symposium, Theme 3 PPI Champion Anya felt the experience

was extremely worthwhile;

“…being able to publically question Lisette and Peter about the work, and

by doing so, show how we use open,

honest questioning in our work was

key. Perhaps the main learning from

the experience was that PPI

engagement in our work requires

complete honesty and openness, but

that as PPI contributors we need to be

aware of all the factors affecting the NHS… policy and PPI may conflict”.

Above right: (From left to right) Prof Peter Griffiths, Anya de Iongh, Prof Lisette Schoonhoven and Dr Jane Ball presented Symposium S8

Another piece of work presented by Theme 3 at conference was the ‘Improving

Fundamental Care in Hospital Wards’ study. With a primary objective to improve

patient outcomes through making care more patient-centred, the team are currently

looking for people to help with this work; for more information, please see the

‘Opportunities’ section (pages 14-16).

Theme 4: Public Health and Primary Care

Periodically, CLAHRC Wessex makes contributions to research beyond our own

immediate remit. Providing an excellent example of this broad approach, Jackie

Seely (PPI Staff Link) and Karen Postle (PPI Champion) of Theme 4, have been

involved in discussing the role of PPI in the ANCAP (Antibiotic Negotiations:

Conversation Analytic Project) study; a piece of work being conducted by Drs

http://www.clahrc-wessex.nihr.ac.uk/public-health-and-primary-care

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Geraldine Leydon and Catherine Woods of the Department of Primary Care and

Population Sciences. The primary aim is to investigate the communicative

behaviours of GPs and patients, as they discuss the need for antibiotics. Previous

research suggests that ‘open’ and ‘clear’ communication is needed in order to

reduce inappropriate prescriptions for antibiotics, but there is little evidence to

indicate how GPs might achieve this in practice.

A qualitative study using analysis of conversation in GP-patient conversations

(video-recorded) as they discuss whether the patient needs antibiotics or not, the

findings will be used to develop a pilot communication-based training tool, which will

show GPs (in a step-by-step fashion) how to promote appropriate antibiotic

prescribing behaviour.

So far PPI-related discussions have centred on differences between researcher and

public views when discussing video clips, and the time and remuneration required for

effective PPI involvement; the conclusion being that PPI involvement should take the

form of an informal ‘advisory group’, comprising of a small number of patients.

Theme 5: Engagement with Self-Directed Support

GENIE Launch event

While it just slips outside this quarter, the author felt

it worth mentioning that the official launch event for

GENIE ran on March 29, at the Winchester

Discovery Centre on Jewry Street, Winchester.

Hailed a great success by organisers and

participants alike, the event showcased Theme 5’s work around GENIE technology;

a powerful piece of software that helps connect people with chronic conditions to

support services in their area. Follow the following links to read the news story, find

out more about GENIE or visit the GENIE Facebook page.

http://www.clahrc-wessex.nihr.ac.uk/engagement-with-self-directed-supporthttp://www.clahrc-wessex.nihr.ac.uk/news/96/time-to-meet-genie-launch-of-a-new-online-tool-to-help-support-people-living-with-a-long-term-conditionhttps://genie-net.org/https://www.facebook.com/Genietool/

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Hullabaloo

Sandown Bay on the Isle of Wight was the venue for the first ‘Hullabaloo’ event,

which ran on Saturday 12 May. A free arts event organised by Theme 5 PPI

Champion Sandy Ciccognani, and created in association with the Shademakers

Carnival Club, Hullabaloo saw contributions from over 80 local groups and

organisations, voluntary contributions from more than 400 people, and audiences

that were estimated to be between four and five thousand.

Hailed a terrific success, Sandy now hopes to make Hullabaloo an annual fixture on

the local Isle of Wight events circuit. Read the full news article here.

Left: Some of the fantastic outfits at the Hullabaloo parade

Right: The ‘DenimDoodle’ Picnic Blanket received some wonderfully creative patch donations

Left: Event Organiser, and Theme 5 PPI Champion Sandy Ciccognani, gets roped into helping the ‘Loose Women Team’ and their red-sequinned boot, in the Soapbox Challenge!

http://www.clahrc-wessex.nihr.ac.uk/news/109/hullabaloo-on-the-isle-of-wight-by-ppi-champion-sandy-ciccognani

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Theme 6: Complexity at End of Life

The signature project in Theme 6 focusses on Treatment Escalation Plans (TEPs). It

aims to better understand, and to identify opportunities for improving patient care

through the use of TEPs. This quarter, the process of extracting relevant data from

patient case notes, for a backward-looking review into the decision-making around

treatment escalation in seriously unwell patients in an acute NHS Trust, was

completed. Analysis of the data is now underway.

The next phase of data collection work for the implementation evaluation will begin

June. Qualitative interviews are planned with relevant stakeholders to identify,

distinguish and explain factors that both aid and hinder the actioning of interventions,

such as TEPs, into routine clinical practice.

Events

TEPs Stakeholder Event (11 May)

As part of the service development element of the TEPs study, the team hosted a

Wessex-wide meeting in May which brought stakeholders together, to discuss

whether the locality should implement the ‘Recommended Summary Plan for

Emergency Care and Treatment’ (ReSPECT) - a process arising from the study,

designed to facilitate the discussing and recording of decisions about a person’s

treatment and care in an emergency situation, when they are not able to make and

express their choices. The event was well-attended

with over 40 delegates, and included a series of

presentations and opportunities for discussion.

Left: Sally Dace (Theme 6 PPI Champion) facilitates group work activities at the TEPs Stakeholder Meeting

in May.

http://www.clahrc-wessex.nihr.ac.uk/complexity-at-end-of-lifehttp://www.invo.org.uk/resource-centre/jargon-buster/?letter=Q

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Sally Dace, PPI Champion for the Theme attended the event as a PPI speaker, and

as a group work facilitator. Her contribution served as a reminder of the importance

of keeping the patient at the centre of all discussions, ensuring their voice is not lost.

PPI Voice: The ReSPECT Process (July 13)

Preparations are well underway for the next Theme 6 PPI event in July, which will

give PPI contributors the chance to ‘have their say’ on the ReSPECT process. The

team are particularly interested in receiving feedback on whether the resources

available to patients and carers on the ReSPECT website meet their information and

support needs, and whether they will help to raise awareness about ReSPECT

beyond healthcare settings; for more information, or if you would like to attend,

please see the ‘Opportunities’ section (pages 14-16).

Data Science Hub

Dr Tom Monks and the NIHR CLAHRC Wessex Data Science Team have been

looking at data modelling and simulation, towards trying to improve the efficiency of

community care. This story was posted to the main CLAHRC Wessex News

webpage - click here to find out more.

Modelling the time to diagnosis in people with dementia

Dr Rudabeh Meskarian of the Data Science Hub has also

been working with NHS England towards developing a

computer-based model of dementia diagnosis in Wessex.

Diagnosis of dementia is a national priority in the UK. The

current target for confirmation of diagnosis in people with

the underlying condition is set at 66% nationally. Most of

these diagnoses occur in an NHS memory clinic, and the

http://www.respectprocess.org.uk/http://www.clahrc-wessex.nihr.ac.uk/data-science/what-we-dohttp://www.clahrc-wessex.nihr.ac.uk/news/103/how-data-modelling-can-improve-the-efficiency-of-community-healthcare-and-cut-air-pollution

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Government has set a target of 6 weeks from referral by a GP, to diagnosis. It is

currently unclear how achievable this target is, given the current resources within the

dementia diagnosis process; for example, are there enough memory clinic

appointments available and is in there enough space at hospitals for detailed

investigations?

The model that the Data Science Team have been developing allows managers in

the NHS to assess whether their memory clinic service will meet the 6-week target

for diagnosing patients. Dr Tom Monks describes it

as functioning “a bit like a map of a road network”. It

allows managers to see where ‘traffic jams’ build up,

slowing the progress of diagnosis. This in turn helps

them to decide where extra ‘road capacity’ needs to

be created to speed the process up, towards

ultimately meeting the 6-week target.

Left: Dr Rudabeh Meskarian of the Data Science Hub has been working with NHS England to develop

a computer-based model of dementia diagnosis in

Wessex.

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News from the Central Team

Claire departs for pastures new

As many of you will now know, Claire Ballinger has moved on from her role as ‘PPI

Lead’ with our organisation, to accept a new role as ‘Strategic Lead; Patient and

Public Involvement’ with Wessex PIN. Martin Simpson-Scott has since arrived to

operate in a slightly different role as ‘PPI Coordinator’, and will be supporting our

theme leads in their delivery of PPI into the future.

Claire contributed a great deal in her time with CLAHRC Wessex, and she will be

greatly missed - though still based just up the road at

Southampton General Hospital, I am sure our paths will cross

very regularly! If anyone wishes, Claire can still be contacted by

email. We wish you every success in your new role Claire.

Annual Report (2016-2017)

March and April saw the culmination of many hours of hard work with the production

of our 2016-2017 Annual Report. Scrutinised by the NIHR against both funding

commitments and strategic objectives, the report was submitted in the middle of

May. The Senior Leadership team feel the report reflects the excellent work done by

everyone associated with CLAHRC Wessex over the past year.

PPI Strategy (2017-2018)

The PPI Strategy for the period 2017-2018 was drafted, and made available to view

on our website. It is an item on the agenda at the next WISeRD meeting (towards the

end of June), for consultation with our PPI Champions.

http://www.clahrc-wessex.nihr.ac.uk/central-teammailto:mdss1m17@soton.ac.ukmailto:C.Ballinger@soton.ac.ukhttp://www.clahrc-wessex.nihr.ac.uk/img/pdfs/PPI_Strategy_2017-2018_FINAL.pdf

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New online PPI registration form

The new online PPI Contributor Registration Form went live in April. Hosted on the

new PPI Facebook page and the PPI Webpage, it will make registering with us as a

Contributor even easier.

We are delighted to welcome 3 new PPI members to the programme this period; if this was you, we’re very much looking forward to working with you!

We need YOU! CLAHRC Wessex Facebook page

Last month we launched our first CLAHRC Wessex PPI

Facebook page. Have you visited and ‘Liked’ it yet?

We hope this addition will not only help us to raise

awareness of the PPI work we do in our organisation, but will also provide a

platform through which you - our PPI team - can share your work, achievements

and debate topical applied health research news and stories.

We hope the platform will also help us to grow the PPI Contributor team, allow a

further means of advertising research opportunities when they arise and let you

know about forthcoming events.

New PPI Registrant Welcome Pack

Martin Simpson-Scott (our new PPI Coordinator - he’s the one pointing at you in the

photo above!) has created a ‘Welcome Pack’ to be shared with new members when

they join the PPI Contributor Team. Designed to provide a warm, friendly, down-to-

earth introduction to CLAHRC Wessex, what we do and the critical role the PPI

Team plays in applied health research, any comments or feedback you may have

would be gratefully received (click here to do so).

https://goo.gl/forms/zXNld64S96rFq6jy2https://www.facebook.com/PPICLAHRCWessex/?fref=nfhttps://www.facebook.com/PPICLAHRCWessex/?fref=nfhttps://app.box.com/s/s0f0ellcbex5ihqwvjp43r9r75f53hcohttps://drive.google.com/open?id=1u5HsUi-CMpdj45kXVKLjemnskGfFv6A_H-EFPw6JFGo

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A healthy distraction In each edition of CQ we aim to bring you a couple of health-related featurettes - perhaps topical, humorous or external stories in the media, of particular relevance to our work.

Mental Health Awareness Week

May 8-14 was the 27th ‘Mental Health Awareness Week’

(MHAW); this year’s theme was ‘Surviving or Thriving?’.

A number of organisations - including the Mental Health

Foundation and Mind supported the initiative, designed

to raise awareness of an issue that affects many

people’s lives. This year, MHAW’s profile was raised

even further by the comments of Princes William and Harry, and the Duchess of

Cambridge, as part of the Heads Together #oktosay campaign.

As part of MHAW, the Mental Health Foundation published a comprehensive set of

associated statistics, and several interesting articles to their website, including a

‘Find out your good mental health’ survey and ‘The state of the UK’s mental health’.

A growing issue in the UK, the charity states that “mental health problems are one of

the main causes of the overall disease burden worldwide”, with ‘one-in-six people in

the UK experiencing a mental health problem in the last week’. What emerges from

the publicity is that this remains a critically important issue, of which we should all

remain mindful; for both ourselves and others.

Beauty sleep’s a ‘thing’?! Really?!

Are you getting enough shut-eye? In May the BBC highlighted some recent research

into the effect of sleep - or potentially a lack of it - on our appearance. A seemingly

https://www.mentalhealth.org.uk/https://www.mentalhealth.org.uk/https://www.mind.org.uk/https://www.headstogether.org.uk/oktosay/https://www.mentalhealth.org.uk/publications/fundamental-facts-about-mental-health-2016https://www.mentalhealth.org.uk/publications/fundamental-facts-about-mental-health-2016https://www.mentalhealth.org.uk/campaigns/mental-health-awareness-week?gclid=Cj0KEQjwo-XIBRCOycL7hsuI_NoBEiQAuS6HtOdtAm0VaUUPAA8Jj-hvBLjsZdqnJrjE5t4W85Gj2lIaAqL38P8HAQhttps://www.mentalhealth.org.uk/your-mental-health/good-mental-health-surveyhttps://www.mentalhealth.org.uk/publications/surviving-or-thriving-state-uks-mental-health

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light-hearted look at the ‘social benefits’ of a good night’s sleep, the article concluded

that… ahem… “We want our partners to be attractive and energetic”, and that “this

study is a good reminder of how important sleep is to us”.

I don’t know about you, but it’s an early night for me tonight then!

Left: The author’s cat; bias is clearly at play, but she certainly

gets enough beauty sleep!

COPD and nutrition

‘Independent Nurse’ published an article

in May that highlighted the importance of

good nutrition in patients with COPD -

the condition of primary focus in our

Theme 1 research. The article detailed

how the healthcare costs associated

with malnutrition in COPD patients can

be great, and that as many as one in five COPD patients are potentially at risk. It

also stated the importance of appropriate screening for malnutrition in this patient

group, the role that community nursing has to play.

If you are interested and want to learn more; to read the full article, you will need to

subscribe to Independent Nursing (which is free).

http://www.bbc.co.uk/news/health-39933232http://www.independentnurse.co.uk/http://www.independentnurse.co.uk/clinical-article/integrating-nutrition-into-pathways-for-patients-with-copd/155179/http://www.independentnurse.co.uk/register/

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Networking and other PPI opportunities

Could you help Theme 3?

Theme 3 presented their work on the ‘Improving Fundamental Care in Hospital

Wards’ study at the RCN Research Conference (Oxford) in April. The primary aim of

the work is to improve patient outcomes, through making care more patient-centred.

The Theme 3 team is currently looking for PPI contributors to join their group

discussions, to tell them about their experiences of patient care. Expenses will be

covered, and contributors will also receive vouchers in return for taking part. If you

have been in hospital at some point over the last six months, and if you live in the

Hampshire area, please contact Dr Jo Hope (j.l.hope@soton.ac.uk / (02380) 595292

to find out more.

Theme 3 Event: ‘The Fundamentals of Hospital Care: Revisiting Research for getting Nursing Right’ (June 19; 9.00am - 5.00pm)

Theme 3 are running a one-day fundamental care summit on June 19, at Highfield

House Hotel in Southampton. The event is your opportunity to introduce your views

about the quality of nursing care in the Wessex region, and to contribute to a debate

that may influence the development of future research around nurse staffing.

Click here to book your ticket, or to request more information about the event.

https://scadmin.rcn.org.uk/professional-development/research-and-innovation/research-events/rcn-2017-research-conferencemailto:j.l.hope@soton.ac.ukhttps://www.eventbrite.co.uk/e/fundamental-care-summit-tickets-34273862044?aff=ehomecard

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ANCAP Study: Theme 4 are on the look-out for PPI help!

The ‘Antibiotic Negotiations: Conversation Analytic Project’ (ANCAP) study is

investigating communication behaviours between GPs and patients, as they discuss

the need for antibiotics. A qualitative study within Theme 4, using video-recordings of

GP-patient consultations as the need for antibiotics is discussed, the findings will be

used to develop a training tool to promote appropriate antibiotic prescribing

behaviour.

Are you - or do you know anyone else - who might be interested in forming part of an

informal PPI ‘advisory group’? Contact Jackie Seely (J.Seely@southampton.ac.uk)

for more information.

Theme 6 PPI event: The ReSPECT process (July 13)

Theme 6 are running an event in July which will give PPI contributors the chance to

feed their views back to researchers, on the ‘ReSPECT’ process; a process

designed to support discussion and recording of patient decisions about their

treatment and care in emergency situations, when they are unable to do so

themselves. The research team in particular are interested in hearing from PPI

contributors about whether they feel online ReSPECT resources are fit-for-purpose.

The event is being held at the Freemantle and Shirley Community Centre in

Southampton, on Thursday 13 July (1.15pm - 4.00pm). Lunch and light refreshments

will be provided. If you would like to attend, or want to know more, please contact

Michelle Myall by email: CLAHRCTheme6@soton.ac.uk.

mailto:J.Seely@southampton.ac.ukhttp://www.freemantlecommunitycentre.co.uk/mailto:CLAHRCTheme6@soton.ac.uk

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NIHR Dissemination Centre opportunity

In May, we promoted an opportunity to get involved with the NIHR Dissemination

Centre via our Facebook page:

The NIHR Dissemination Centre aims to put good research evidence at the heart of

decision-making in health and social care. The centre critically appraises the latest

health research to identify the most reliable, relevant and significant findings. It then

shares these findings in 3 main ways:

• NIHR Signals - The latest important research, summarised

• NIHR Highlights - Conditions, treatments and issues explored using NIHR

evidence

• Themed Reviews - Bringing together NIHR research on a particular them

The opportunity that we were asked to share with you related to the work on

SIGNALS. Alison Ford (Head of Engagement at NIHR Dissemination Centre) has

produced some more information relating to this opportunity, that includes what you

would be asked to do and how to sign-up. Click here to take a look.

THE NIHR DISSEMINATION CENTRE ARE LOOKING FOR A FRESH PERSONAL, PUBLIC PERSPECTIVE ON THEIR ‘SIGNALS’ (REGULAR SHORT SUMMARIES OF HEALTH RESEARCH, RECENTLY PUBLISHED IN PEER-REVIEWED

JOURNALS) - CONTACT A.R.FORD@SOTON.AC.UK FOR MORE INFORMATION.

https://www.facebook.com/PPICLAHRCWessex/http://www.dc.nihr.ac.uk/https://discover.dc.nihr.ac.uk/portal/homehttp://www.dc.nihr.ac.uk/highlights/http://www.dc.nihr.ac.uk/themed-reviews/http://bit.ly/2ryyGv4mailto:a.r.ford@soton.ac.uk?subject=NIHR%20Public%20Contributor%20Opportunity%20-%20I'm%20interested!mailto:a.r.ford@soton.ac.uk

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That’s a wrap folks! Want to let us know what you think?

Thank-you for reading this quarter’s edition of CQ; we hope you found it

both informative and interesting. If you have any feedback, please direct

to Martin Simpson-Scott by email.

If you would like to offer anonymous feedback, please click here.

Want to contribute to this Newsletter?

Do you have a story you want to share, or a PPI-related achievement

you want to shout about? Please contact Martin Simpson-Scott.

Confusing words?

Are there any words or terms you don’t understand in this newsletter?

Why not see if our Jargon Buster can help?

Not in there!? Tell us (anonymously) so we can add it…

mailto:CLAHRC-WessexPPI@soton.ac.uk?subject=CQ%20NEWSLETTER:%20Feedbackhttps://goo.gl/forms/u9N0dXJpQFQUDukL2mailto:mdss1m17@soton.ac.uk?subject=NEWSLETTER%20ITEM%20for%20considerationhttps://app.box.com/s/sdtq2zvum7ew60tr5rbp5ebeh2w28p3lhttps://goo.gl/forms/3GcpPWrJh2gn6Mu83

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