Monday, 20 November 2017

Seminar: Understanding the role of WSB-1 in breast cancer

The sixth speaker in the 2017 Biomedical Science Seminar Series is Dr Isabel Pires, School of Life Sciences Biomedical Sciences subject group University of Hull.

As part of the BMS Seminar series, the seminar takes place on Wednesday 6th December, 1-2pm Hardy LT2.

Isabel is a cancer biologist, and is particularly interested in how low oxygen (hypoxia) in tumours impacts on metastatic spread and therapy. She is an enthusiastic science communicator, and has given talks in such events as TEDx Hull and Pint of Science. She is the main organiser of Soapbox Science Hull

Thursday, 9 November 2017

Nicki Credland in Brazil

Nicki is in Rio, Brazil addressing the XXII Brazilian Congress of Intensive Care Medicine. Nicki´s paper was on the Recruitment and Retention of Intensive Care Nurses.

Wednesday, 1 November 2017

‘There’s no pill to help you deal with the guilt and shame’

Professor Liz Walker has published:

Walker E (2017) 'There's no pill to help you deal with the guilt and shame': contemporary experiences of HIV in the United Kingdom Health doi: 10.1177/1363459317739436

Embracing mental health and physical health care

Jacquie White has co-authored a chapter in: 

Hardy S and White J. (2017) Embracing mental health and physical health care In Clifton A, Hemingway S, Felton A and Stacey G (eds) Fundamentals of Mental Health Nursing: An Essential Guide for Nursing and Healthcare Students Oxford: Wiley-Blackwell.

Thursday, 5 October 2017

Landmark memorandum on dementia signed

Esme Moniz-Cook, co-Chair of INTERDEM was at the 27th Alzheimer's Europe Conference in Berlin this week where a memorandum was signed with Alzheimer's Europe.

The INTERDEM network of researchers interested in psychosocial interventions also held its Annual Meeting prior to the conference with a record number of close to 100 researchers attending. Alzheimer Europe and INTERDEM used the opportunity to sign a memorandum of understanding highlighting their willingness to collaborate.

In the memorandum, both organisations confirmed that they share a common vision of “changing perceptions, practice and policy in order to improve the quality of life of people with dementia and their carers” and affirmed the following rights of people with dementia: 
·        The right to a timely diagnosis;
·        The right to access quality post diagnostic support;
·        The right to person-centred, coordinated, quality care throughout their illness;
·        The right to equitable access to treatments and therapeutic interventions;
·        The right to be respected in their community as an individual with capacities and limitations.

For further information, contact: 
Jean Georges, Executive Director of Alzheimer Europe

Annual Conference of British Society of Haemostasis and Thrombosis

At the forthcoming Annual Meeting of British Society of Haemostasis and Thrombosis colleagues from Hull led by Camille Ettelaie are presenting 1/6th of posters. This is only behind London, Oxford and equal to Birmingham all of which have multi-centre facilities in this field. Camille is also going to give an oral presentation at this conference.

Tuesday, 3 October 2017


A social work student who is studying at the University of Hull has been selected as a finalist in the Social Worker of the Year Awards 2017 as a result of their outstanding achievements.

Chelsea Higgins has been nominated for the Student Social Worker of the Year prize and will find out if she has won at an exclusive awards ceremony which will take place in London in November. Chelsea is one of 81 finalists across 16 categories and the winners from each category will compete against each other to be named the “Overall Social Worker of the Year 2017.”

The prestigious awards ceremony is the leading celebration of its kind in the social care sector, and recognises the achievements and successes of the profession’s most innovative and dedicated social workers.

Councillor Tim Swift, Leader of Calderdale Council, who are sponsoring the award, said: “This award recognises outstanding practice and someone who has made exceptional progress as a social work student. To reach the finals of the Social Worker of the Year awards is a great achievement and something to be very proud of.”

The awards were judged by leading influencers including the Chief Social Workers Isabelle Trowler and Lyn Romeo and Maris Stratulis (England Manager, British Association of Social Workers).

The Social Worker of the Year Awards are supported by headline sponsor Sanctuary Social Care; corporate partner the British Association of Social Workers, and individual category supporters, Barnardo’s, UNISON, iMPOWER, The Open University, OLM Systems and Community Care. The awards are also supported by the local authorities of Calderdale, Bradford, Devon, Hampshire, Gloucestershire, Kent and Essex as well as the Tees Valley Local Authority Children’s Services – a partnership between the local authorities of Middlesbrough, Hartlepool, Darlington, Redcar & Cleveland and Stockton-on-Tees.

For more information about the Social Worker of the Year Awards please see

1)    The Social Work Awards Ltd is a charitable organisation seeking to improve the awareness, understanding and reputation of the social care sector. The registered charity number is 1144458

2)    The Board of Trustees is made up of: Peter Hay CBE (Chair), James Rook (Managing Director of headline sponsor Sanctuary Social Care), Ruth Smith (Publisher, Community Care), Beverley Williams (Founder), Joanna Nicolas (Child Protection Consultant and Author), Ana Popovici (Deputy Director Children's Services, London Borough of Hillingdon), Jenni Randall (Independent Social Worker) and Rob Mitchell (Principal Social Worker, Bradford Council)

3)    The awards are open to qualified practitioners throughout England with a range of individual and team categories for those working in both children’s and adult departments.

4)    The sponsors for the Social Worker of the Year Awards 2017 are as follows:
a.    Sanctuary Social Care – Headline Sponsors (Overall Social Worker of the Year, Best Social Work Employer of the Year)
b.    The British Association of Social Workers – Corporate Partner (Lifetime Achievement, Newly Qualified Adult Social Worker of the Year)
c.    Devon County Council – Category Supporter (Adult Social Worker of the Year)
d.    Hampshire County Council – Category Sponsor (Mental Health Social Worker of the Year)
e.    Calderdale Council – Category Sponsor (Student Social Worker of the Year)
f.     The Open University – Category Sponsor (Practice Educator of the Year)
g.    OLM Systems – Category Sponsor (Creative & Innovative Social Work Practice)
h.    Kent County Council – Category Sponsor (Team Leader of the Year, Children’s Services)
i.      Gloucestershire County Council - Category Sponsor (Team Leader of the Year, Adult Services)
j.      UNISON - Category Sponsor (Team of the Year, Adult Services)
k.    Barnardo’s - Category Sponsor (Children’s Social Worker of the Year)
l.      Community Care - Category Sponsor (Outstanding Contribution to Social Work)
m.  Bradford Metropolitan District Council – Category Sponsor (Raising the Profile of Social Work)
n.    Essex County Council in partnership with Servelec Corelogic – Category Sponsor (Championing Social Work Values)
o.    iMPOWER – Category sponsor (Team of the Year, Children’s Services)
p.    Tees Valley Local Authority Children’s Services – Category Sponsor (Newly Qualified Children’s Social Worker of the Year)

5)    For more information about the Social Work Awards, visit

Dr Sandra Jones elected Fellow of the Physiological Society – Congratulation

Dr Sandra Jones has been elected a Fellow of the Physiological Society 

Thursday, 14 September 2017

Clinical Psychology Research Conference

Final year clinical psychology doctorate trainees showcased their thesis projects at a celebratory end of training research conference in the Brynmor Jones Library. A diverse range of topics included: dementia; intellectual disabilities; interpreters; army veterans and voice hearing.

Peter Draper in Belfast

Professor Peter Draper delivered a staff development day at Stranmillis College in Belfast. It included a keynote entitled 'Growing into academic leadership: observations from another place'.

Thursday, 7 September 2017

Peter Draper at Cambridge

Professor Peter Draper led a workshop on creative approaches to teaching in health and social care education, at the NET (Networking for Education in Healthcare) conference, held at Churchill College, Cambridge, 5-6th September 2017

Investigating the use of an electronic hand hygiene monitoring and prompt device: inflence and acceptability

Judith Dyson has co-authored:

Dyson J and Madeo M (2017) Investigating the use of an electronic hand hygiene monitoring and prompt device: inflence and acceptability, Journal of Infection Prevention, doi: DOI: 10.1177/1757177417714045

Wednesday, 30 August 2017

The Development and Initial Validation of the Perinatal Mental Health Awareness Scale in Student Midwives

Julie Jomeen has co-authored:

Martin CR, Jomeen J, Jarrett P (2017) The Development and Initial Validation of the Perinatal Mental Health Awareness Scale in Student Midwives Journal of Midwifery and Reproductive Health doi: 10.22308/JMRH.2017.9251

Professor Julie Jomeen in China

Our Dean Professor Julie Jomeen has been in China, in Suzhou, to address an international conference on humanistic nursing hosted by the University of Soochow.

Group photograph; Julie is 13th from the right!

Tuesday, 29 August 2017

New external role for Professor Peter Draper

Peter has  been appointed as a ‘member’ of the Yorkshire and Humber Cooperative Learning Trust, which is a local multi-academy trust.  The schools in the Trust include Newland School for Girls, Kelvin Hall School, and four local primaries.  The role of the members is to set the strategic direction for the Trust, and offer the most senior level of oversight.  

Thursday, 24 August 2017

Students train with Paralympian medallist Martin Mansell

As a follow up to attending the recent Special Olympics GB National Games in Sheffield - reported here - a group of students completed Sainsbury’s inclusive community training on Friday 18 August 2017 in the University Sports and fitness centreWe were incredibly fortunate that the facilitator assigned to us was Martin Mansell who won multiple medals swimming for Great Britain in the Paralympic Games, notably gold in Seoul 1988.  Having competed at elite level, his enthusiasm for developing inclusive sport at grass roots level was infectious with year three student Karen Normington commenting:

“… thank you for giving me the opportunity to spend the afternoon in training lead by Martin.  What an inspirational passionate guy he is, certainly left me with lots to think about and not just in a sport capacity.” 
The three-hour practical workshop was supported by an online Module, workbook and was provided by Sainsbury’s in conjunction with the English Federation of Disability Sport (EFDS).  It focused on using the Inclusion Spectrum (open, modified and parallel activities) and STEP, an acronym for Space, Task, Equipment, People.  We also experienced the rigour of sitting volleyball and - the more sedate but competitive - boccia.

For more information please see and/or contact Debbie Crickmore.

Thursday, 17 August 2017

Syrup Trap City - a novel by Penny Grubb

Penny Grubb, our resident crime writer, has pubished her 7th crime novel Syrup Trap City – set in Hull in the city of culture year. 

Professor Roger Watson inducted to Sigma Theta Tau International Researcher Hall of Fame

SSTI Presents 2017 Nurse Researcher Hall of fame inductees

The Honor Society of Nursing, Sigma Theta Tau International (STTI) inducted 23 nurse researchers into the International Nurse Researcher Hall of Fame at STTI’s 28th International Nursing Research Congress in July

Professor Roger Watson inducted to the
 Sigma Theta Tau International  Researcher Hall of Fame

Created in 2010, the International Nurse Researcher Hall of Fame recognizes nurse researchers who have achieved significant and sustained national or international recognition and whose research has improved the profession and the people it serves. The honorees’ research projects will be shared through STTI’s Virginia Henderson Global Nursing e-Repository, enabling nurses everywhere to benefit from their discoveries and insights. The award presentation is sponsored by Wiley.

Congratulations Professor Roger Watson, Phi Mu Chapter #490 from all of your colleagues at The University of Hull.
Posted by Lizzie Ette

Wednesday, 16 August 2017

Sport teaches us

If you blinked during coverage of the recent World Championships in London, you may well have missed any mention of the concurrent Special Olympics GB National Games in Sheffield.  This movement, founded by Eunice Kennedy Shriver in 1968 enables athletes with learning (intellectual) disabilities to compete at national and international levels (there are limited events in the more well-known Paralympic Games).

A group from the pre-Registration Learning Disability Nursing Programme within the School of Health and Social Work attended the opening ceremony on Tuesday 8th August 2017 at Sheffield United’s football stadium Bramall Lane where 2,600 athletes from England, Scotland and Wales took part in the parade, witnessed the arrival of the Flame of hope which had passed through Hull a few days earlier and took their oath:

"Let me win. But if I cannot win, let me be brave in the attempt."

Students Gemma Bellerby, Toni Boyne and Abby Downs write
“This was an incredible experience which allowed us to see the athletes being celebrated prior to attending their events.  Unfortunately due to the torrential rain it did put a slight dampener on the event but everyone made a fantastic contribution and kept up the team spirit.” 

Hayley Sharp and Ed Jones agreed:

" was such a shame about the weather but I believe we all still really enjoyed the evebing regardless!"

 “I really enjoyed it. It is great to celebrate the talents of people with learning disabilities.” 

The physical, psychological and social benefits of participation in sport are no secret.  We will complement and consolidate this experience with Sainsbury’s inclusive community training on Friday 18th August 2017, exploring creative ideas to support disable people to take part in physical activity and sport, learning about practical tools to support inclusive delivery. 

For more information please see this link or this one or contact Debbie Crickmore.

Fathers in the birth room: choice or coercion? Help or hindrance?

Dean Professor Julie Jomeen has published:

Jomeen J (2017) Fathers in the birth room: choice or coercion? Help or hindrance? Journal of Reproductive and Infant Health 35, 321-32

Friday, 11 August 2017

Amanda Lee in Malaysia

Amanda Lee was in Malaysia last week to discuss opportunities for collaboration with Health Campus Universiti Sains Malaysia. Professor Lim Boon Huatt the deputy Dean, kindly arranged a full day of meetings to discuss potential research and studentships across the two universities.

Pictured aboveare:

Yvonne Tee ; Few Ling Ling, (Coordinator, MSc (Biomedicine) Mixed Mode Programme;
See Too Wei Cun, Shaharum Shamsuddin (Biomedicine Programme Chairman)
Wan Rosli Wan Ishak, (Deputy Dean of Academic, Student Affairs and Alumni)
Amanda Lee Associate Dean (International) University of Hull
Lim Boon Huat (Deputy Dean of Postgraduate Studies, Industry, Community and International Networking); Noor Izani Noor Jamil ; Wan Nor Amilah Wan Abdul Wahab;
Wan Amir Nizam Wan Ahmad; Khairul Ithma Mahdi (Senior Assistant Registrar)

The meetings were extremely productive. There are many opportunities for joint research collaborations and grant applications with the British Counsel who are actively encouraging joint Malay/UK projects. If you are interested, please contact Amanda Lee.

Amanda also visited the Ministry of Health in Kuala Lumpur to discuss medical and nursing program provision in Malaysia.

Thursday, 10 August 2017

• Evidence-based combined health and psychosocial tailored programmes for carers supporting people with dementia and clinically significant distressed behaviours show promise, but services struggle to provide effective responses

·       Separate service pathways for families and care homes, with skilled workforces for each of these, may enhance the efficiency of delivery of interventions for carers facing clinically significant challenges in dementia.

The findings from a large-scale programme on the Management of Dementia with clinically significant challenging behaviour at home and in care homes led by the University of Hull and Humber NHS FT  is published today (August 11  2017). The research was funded by the National Institute for Health Research (NIHR), Programme Grants for Applied Research (PGfAR).

Over 5300 home-dwelling people and their families referred for specialist help were screened across England, and 61% of those with dementia and clinically significant challenging behaviour had a mild dementia.  Practitioners did not always recognise what constituted clinically significant challenging behaviour in dementia; and over a six month period, they did not manage to reduce the challenges faced by these families. Families bore most of the care costs of dementia with challenging behaviour, and many were unaware of the evidence, guidelines and scope for trained therapists to support them with timely individually-tailored effective responses to their challenging circumstances.

Over 2300 residents living in 63 care homes which were rated as ‘good’ or ‘excellent’ on the then CQC website across Hull, the East  Riding of Yorkshire and York were screened for clinically significant challenging behaviour.  A trial of e-learning and online therapist-assisted intervention involved 832 residents and 632 care staff. Despite offering high levels of IT support and resources from a trained dementia therapist, the care home industry in this part of North East England was on the whole not ready to embrace online training with individually tailored interventions.  However smaller homes with less hierarchical management were more ready to engage in innovation to improve the care of people with dementia and challenging behaviour, including uptake of e-learning opportunities. Using an in-depth qualitative process evaluation, a tool-kit has been developed for specialist care home liaison teams to assess the readiness of a care home to collaborate with health and psychosocial interventions for clinically significant challenging behaviour in dementia, and to assist care homes who have real practical difficulties in delivering collaborative specialist interventions.  This evidence based e-learning and individualised intervention is appropriate for the training and support of specialist care home liaison teams and hospital staff .

These in-depth studies of people with dementia and challenging behaviours living at home or in care homes, also noted that prescribing practices were sub-optimal.

Professor Esme Moniz-Cook  who led the research, with Professor (now Emeritus) Peter Campion and Drs Ivana Markova and Andrea Hilton at the University  Hull; and with  Cathryn Hart (now Assistant Director of R&D) and Angie Mason (Nurse Director - now retired) Humber NHS FT who sponsored this programme, said:

 ‘Older people with dementia in the early stages of the condition can have clinically significant distressed behaviours, and they and their families can remain undetected until it is too late to provide effective interventions for them at home.  Our programme of work has developed simple but valid screening tools to capture the currently undetected clinically significant challenges in both family care and care homes. These can be used by stakeholder providers across primary and secondary care, to detect clinically significant challenging behaviour and monitor the effect of support programmes over time.  We have also developed evidence-based e-learning and tool-kits to be translated for dissemination amongst stakeholder providers who are commissioned to provide services such as care homes dedicated to challenging behaviour in dementia care or care home liaison teams; and workforce training for staff in hospitals and teams dedicated to serve families who support home-dwelling people with dementia and distressed behaviour. 

The majority of older people with dementia live at home and those with distressed behaviours and their families are the most vulnerable of this group.  Our aspiration is to disseminate work from this programme and support commissioners and stakeholder providers across Hull and the East Riding of Yorkshire and beyond.  The first step is to  facilitate the balance of primary, secondary and hospital practice from early diagnosis of dementia, to early recognition of challenging behaviour within two focussed pathways for post-diagnostic dementia care, and to train practitioners in timely evidence-based health and psychosocial tailored practices within each of these pathways.’

Key Collaborators included the universities of Bangor (Wales), Kings College London, East Anglia (UEA), Swansea (Wales), Nottingham and Bradford; and Northumberland Tyne and Wear NHS FT and BUPA. This summary has been prepared by the Chief Investigator and does not necessarily reflect views or opinions of the NIHR, collaborating institutions, the NHS or the Department of Health

Contact: Professor Esme Moniz-Cook

Stressors in nursing students in Pakistan

Salma Rehman and Roger Watson have co-authored:

Ali R, Watson R Rehman S (2017) Stressors in nursing students in Pakistan International Nursing Review doi: 10.1111/inr.12392

Friday, 21 July 2017

One social hour a week in dementia care improves lives and saves money

Person-centred activities combined with just one hour a week of social interaction can improve quality of life and reduce agitation for people with dementia living in care homes, while saving money.

The findings from a large-scale trial led by the University of Exeter, King’s College London and Oxford Health NHS Foundation Trust were presented today (July 16) at the Alzheimer’s Association International Conference 2017 (AAIC). The research was funded by the National Institute for Health Research (NIHR).

The trial involved more than 800 people with dementia across 69 care homes in South London, North London and Buckinghamshire. Two “care staff champions” at each home were trained over four day-long sessions, to take simple measures that involve talking to residents about their interests and decisions around their own care. When combined with just one hour a week of social interaction, it improved quality of life and reduced agitation.

Importantly, the approach also saved money compared to standard care.  Researchers say the next key challenge is to roll the programme to the 28,000 care homes in the UK to benefit the lives of the 300,000 people with dementia living in these facilities.

Professor Clive Ballard, of the University of Exeter Medical School, who led the research, said: “People with dementia who are living in care homes are among the most vulnerable in our society. Incredibly, of 170 carer training manuals available on the market, only four are based on evidence that they really work. Our outcomes show that good staff training and just one hour a week of social interaction significantly improves quality of life for a group of people who can often be forgotten by society.”

Dr Jane Fossey, at Oxford Health NHS Foundation Trust, said: “Taking a person-centred approach is about really getting to know the resident as an individual - knowing their interests and talking with  them while you provide all aspects of care. It can make a massive difference to the person themselves and  their carers.. We’ve shown that this approach significantly improves lives, reduces agitation and actually saves money too. This training must now be rolled out nationwide so other people can benefit.”

The results are the findings of the Improving Wellbeing and Health for People with Dementia (WHELD) trial, the largest non-pharmacological randomised control trial in people with dementia living in care homes to date.

The project included collaboration from University College London, the universities of Hull and Bangor, and Alzheimer’s Society.

This project was funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (grant: RPPG-0608-10133). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. NIHR | National Institute for Health Research

For further information:
Press and Media Manager
University of Exeter Medical School
+44 (0)1392 724927 or 07768 511866

Thursday, 20 July 2017

A dissemination event for the joint CCG funded project ‘Service Users’ Perspectives on Accessing Type II Diabetes Mellitus Services in Hull and The East Riding of Yorkshire’

Professor Liz Walker writes:

This project (a research partnership between HYMS and the School of Health and Social Work) explored the experiences and views of people living in Hull and the East Riding of Yorkshire who have type II diabetes.
The project team of Professor Thozhukat Sathyapalan, Professor Liz Walker, Janine Keating and Lisa Baldwin delivered a joint dissemination day to the service user participants and to clinical colleagues from across both regions.  For those people who contributed their time and experiences to the project, the event offered an opportunity to explore some of the project’s key findings, which focused on the facilitators and barriers to effective management of type II diabetes.
The morning session (for service user participants) was particularly well attended and generated interesting debate about the ways in which service development in Hull and the East Riding of Yorkshire could be further improved.
As the project reaches its conclusion, the team would like to thank everyone who contributed time and effort to participate in the project and the University of Hull for hosting the dissemination event.

The full report will be published in September 2017. A link to the text only of a service user feedback brochure can be found here. For a copy emial Liz Walker.

Brochure link

A Summary of Service Users’ Perspectives on Accessing Type 2 Diabetes Mellitus Services in Hull and the East Riding of Yorkshire.
The Hull and the East Riding of Yorkshire Clinical Commissioning Groups, who are responsible for the planning and commissioning of health care services for your local area, funded the University of Hull in order to find out the experiences and views of people living in Hull and the East Riding of Yorkshire who have type 2 diabetes. We did this by interviewing 10 senior care home staff, 11 groups of service users, a total of 48 people, across the age ranges of 18-39, 40-64; and 65+, and 5 individuals who had been recorded as not attending some appointments. We then used what people with type 2 diabetes had told us to develop a questionnaire. The findings from the questionnaires were combined with the findings from the interviews to create a better understanding of the barriers people with this condition face when accessing services. This research study was sponsored by Hull and East Yorkshire Hospitals NHS Trust and the research team consisted of Professor Sathyapalan, Professor Walker, Janine Keating and Lisa Baldwin. We would like to thank everyone who was involved in this research study and we are pleased to share a summary of the interviews with you.

The Impact of Type 2 Diabetes on Daily Life.

When people were first diagnosed as having type 2 diabetes some were shocked and surprised, or frightened, whilst others talked about their disbelief at first followed by a sense of denial. Some responded with urgency initially, which lessened over time, whilst others did not understand the seriousness of being diagnosed with type 2 diabetes. Some people completely changed their lifestyle; their diet and the amount of exercise they did, as a result of being diagnosed.
People spoke of the symptoms associated with type 2 diabetes that they had experienced, such as mood swings, thirst, tiredness (which often led to sleeping throughout the day), problems with nerves (neuropathy), excessive sweating, difficulties with their mobility and vision, tooth loss, amputation of toes, and an increased need to go to the toilet. These symptoms were sometimes intrusive and disruptive, and impacted negatively on the individuals’ ability to participate in social events and do other activities, such as driving long distances. This often led to feelings of loneliness and isolation:
“. . . but the reason why I don't go out because it's a bit embarrassing that you're always off going to the loo, er.”

Poor mental wellbeing was a significant issue for people living with type 2 diabetes. Depression, anxiety and fear were commonly experienced, for example, as a result of worrying about becoming hypoglycaemic. Low self-esteem, self-consciousness, embarrassment and shame were experienced too, particularly around weight gain, social isolation and tooth loss. Type 2 diabetes was sometimes overwhelming and viewed as burdensome and something which prevented the participant from moving forward in their life.
Not working, which sometimes led to boredom and isolation, was hard for some participants to manage alongside their condition. For some there was a loss of independence due to no longer being able to drive as a result of their type 2 diabetes and sadness was felt at not being able to do things that were once possible, such as playing with children and grandchildren. There was a worry and a fear of what a future living with type 2 diabetes would hold for themselves and their livelihood, such as the loss of a driver’s licence or complications leading to amputation:
“It does worry me, you know, worries me for my family at times as well, you know, we, what, how bad I'm going to get but nobody there seems to have an answer, you know and like I say it's a big worry, especially with a family and I don't want to die young, I want to see my kids grow up.”
In order to protect loved ones, some people with type 2 diabetes did not want to share their anxieties or distress with their partners and other family members.
Some of the participants cared for children, parents and partners, some of who were unwell or had disabilities themselves. Type 2 diabetes made these caring responsibilities more challenging. Those in the groups aged between 18-39 expressed a determination to live differently and make different choices around food, compared to what their parents had done, or still continue to do:
“my parents are both type two diabetics and in their mid-sixties, erm, and they have not made good choices, changes, they’ve not made changes to their diet, they’re still eating high level crappy carbs, big massive meals…. I’m shocked on reflecting that they have not made better choices before now because I didn’t really understand what diabetes was before….. who knows maybe I wouldn’t be sitting here right now…… I’ve got to stop the circle being repeated.”

Type 2 diabetes, as well as having to monitor the condition, often became central to people’s lives and thoughts, sometimes even dominating and controlling:
“And it has took over my life and you do become obsessed but you become obsessed to the point that you can cope with it easier, because at first it is upsetting that you're not going to eat stuff like you used to eat, you know, I mean even now, I can walk past a baker's and think God, I could die for a piece of that bread with butter but do you want to live healthy or do you want the bit of bread?”
“There's a point where diabetes takes control of you.  I think once you get to know that, and you have your blood machine as well. That controls me, my blood machine controls me. Tells me what to do.”

However, participants also spoke of trying to remain positive and not to let diabetes dominate their lives:

“My life is my, diabetes is mine, I don't allow it to own me, that's the big thing with my opinion and I try to look for the positive sides on everything, even if that water was to fall, fall over and go over there the positive side, it didn't get me. Don't, life, I don't let the diabetes rule my life.”

Career and work was often disrupted and often challenging to manage alongside type 2 diabetes. In some cases, certain types of occupations were seen to contribute to the condition, for example, gaining weight whilst doing a non-active job or missing meals, not eating at set or regular times, or eating in a hurry, whilst doing shift work or doing jobs which involved driving:
“I used to drive taxis for a long time and weight creeped on, eating junk food and, and stuff like that, snacking, sat down for long periods, no exercise.”

Management and Maintenance of Type 2 Diabetes:
‘We are coming more and more our own doctors’

Participants spoke about relying on their own intuition and what their bodies were telling them, alongside weight watching and monitoring themselves;
“every single day I do my blood sugar first thing in the morning, I do my blood pressure first thing in the morning, I then always have my breakfast and I know in my own feeling whether I'm, whether I'm okay or not.”
Self-management required hard work, commitment, and a knowledge of, not just of type 2 diabetes, but of the self, their own body and how to navigate through the healthcare system. Some felt confident and supported to do this, whilst others were left feeling bewildered, confused and wanting more information and support. For example, despite receiving a blood glucose monitoring machine from their GP practice, some participants had not been shown how to use it or knew what the numbers meant:
“I was given a blood monitoring machine. But the nurse was too busy to show me how to use it, so they told me to go to the chemist, that the pharmacy would teach me but the pharmacist had to Google it to get it on YouTube to see how to do it, so the.. Then she, a young girl just told me to go away and I still don’t know the numbers. So I don’t use it. Because I don’t know what number my blood is supposed to be.”
All the groups who were interviewed discussed not receiving, or not understanding, the results from their blood tests. Self-monitoring however was seen as important to many participants and a way they could maintain control of their condition:
“It's been really empowering because it puts me in control of my blood sugars and I get a reading every single morning and they're stabilising now…”
The inconsistency in services, particularly in primary care, for example GP practices, created obstacles when it came to people effectively managing their type 2 diabetes. There is a need for people with the condition, their families and relevant health services to work well together, to listen, value and support each other in order to better help the individual to effectively manage their condition. There was a need for more information and access to a structured education program about type 2 diabetes, especially when someone was first diagnosed, because for some this was missing;
“They called me in, says you're diabetic, that was it, finish, other than that, say the courses the, I've had none of those, none whatsoever.  I had to find out myself for the, what you could have and what you couldn't have.”

When there was no or little professional advice and information, some participants supported themselves, for example, by finding information online:
“See all the information I’ve got I got myself though, I haven’t been told by the NHS. I was left to struggle, to learn alone”.
Coordinating and organising medication was central to managing type 2 diabetes well, but other conditions that also required medication, such as high blood pressure and arthritis, made this more complicated. Taking lots of medication, the pain experienced whilst injecting insulin, side effects and fitting medication around daily life was sometimes challenging and at times awkward:
“Because I just don't want to hulk this bloody great bag about if I'm honest, I just don't want to cart it about, you know. Yeah, well it, it's just awkward isn't it?”

However, for others taking medication gave them a sense of control, and was something that made them feel they were helping themselves:
“It makes you feel better don't you?  You feel as though you're helping yourself.”

For many people, self-management was the most effective, and for some, the only way to successfully manage their condition. But by patients, health professionals and clinical systems working together in partnership with one another, this would further help to achieve both the person with type 2 diabetes’ and the health services’ desired outcomes.
There was a number of barriers to the management of type 2 diabetes. Participants spoke of conflicting and inconsistent advice, information (especially around food choices), guidance and care, especially in primary care, which led to frustration:
“It’s like God, all I want is a bit of advice.”

GP and other services, such as dieticians, physiotherapists and podiatrists, were hard to access and difficulties were encountered when those with type 2 diabetes tried to getting an appointment with a GP, for example, having to wait a long time, or managing the receptionist to get one. There were also inconsistencies in how often people with type 2 diabetes received check-ups, how long their appointment lasted, and where they received foot checks;
“Once a year, and it's supposed to be everything, you know, that she discusses everything supposedly with you, so that, she's too busy with one, she decides on one condition that you're in with, each, each time, it seems, she does the basics with the diabetes,… … and then she'll sort of rush you, because she's always so busy,..”

The general information about type 2 diabetes was often seen as negative, threatening, restrictive and mostly about what ‘can’t be eaten or done’. Public perception of those with type 2 diabetes was sometimes judgemental and stigmatising:
“but new people who meet you and they, and you discover that first of all [you have diabetes], they have that same kind of recoiling action.”
“And I think there is this kind of blame as well of sort of, you know, you've brought this on yourself, so what do you expect, you know?”

There were many participants who experienced very good services, which help to control and manage type 2 diabetes. These included weight loss programs, getting repeat prescriptions and appointments online, and working in close partnership, sharing results, and making decisions jointly with their GP and diabetes / practice nurse. The group interviews that took place in this research study highlighted how valuable it was for those with type 2 diabetes to talk to others who shared the same condition. They were able to offer and receive peer support by sharing information, particularly on food, giving advice and using their own experiences to help, support and reassure others.

Suggestions for Service Development and Improvement

Participants highlighted a number of areas services could develop or improve. These included the need for;

·       Clear support and guidance at the point of being diagnosed with type 2 diabetes, which could involve the individual’s family.
·       Consistent and up to date information on self-care, screening checks needed, food choices, healthy weight management, medication and the services that are available to someone with type 2 diabetes.
·       Easily available support and informed advice.
·       Better access to specialist services, such as podiatry and dietetic services.
·       More regular and frequent, more than once a year, checks and monitoring.
·       Automatic feedback on blood tests and a clear explanation of the results.
·       The use of technology, for example, making appointments online and the use of emails rather than letters.
·       Coordinated and joined up care; a one stop shop, especially for those who have more than one health condition.
·       A focus on people with type 2 diabetes who are aged between 30 to 40, as they tended to pay the least attention to their health.

An improvement in all of these areas could help to maintain people’s overall health now and in the future. Participants identified a number of other areas which could help them maintain or improve their overall health:

·       Group / social peer support, and the choice to have this support face to face and / or online.
·       Organised exercise groups, such as a walking group, which would have both a physical and social benefit.
·       Reduce priced gym memberships.
·       Services and support for emotional and social wellbeing, for example, a mindfulness course.
·       Supported self-learning and ‘understanding yourself’ to help manage type 2 diabetes.

Good self-management and taking responsibility helps to control type 2 diabetes, but this can be a potential burden on the individual with this condition. A lack of coordinated health and social care can further increase this burden. With better structured and coordinated services, along with the support of the individual’s family and their communities, those with type 2 diabetes can be supported to successfully manage this condition. Those we spoke to identified new areas which could better meet their needs and which took into account their own individual lives, including their work, and how this affected their own management of type 2 diabetes
Listening to those who do did not access services, it was clear that many had complications with their health and faced challenges in their lives, such as difficulties with their mobility, managing their weight and mental wellbeing. This meant they found it difficult to access services, which resulted in a negative effect on their own health and the healthcare they received, which then lead to additional complications. This cycle was both complicated and had many sides to it, highlighting the complex nature of living with type 2 diabetes.