Breast Cancer and Genetics
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Taking Part in Research Stories
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Over 5,000 people take part in research here every year. They help us to continually improve the treatments the NHS can provide and to ultimately improve patient outcomes. We are delighted to share with you some of our amazing volunteers who have shared their research journey with us...
My Role in Research
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Clinical research helps us to find the best possible care options for our patients. Our dynamic research teams include an array of research support staff who help us to deliver over 500 research studies every year. Our 'My Role in Research' series aims to delve a little deeper into these roles...
Dr John Pauling - Rheumatology
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A-Z of Consultants
Related Links - Rheumatology
Pauling
GMC number: 6054876
Year & location of first qualification: 2002, Nottingham University
Specialty: Rheumatology
Clinical interests: Systemic sclerosis & Raynaud’s phenomenon, Digital vasculopathy in autoimmune rheumatic diseases, Connective Tissue Diseases, Interstitial Lung Disease and Pulmonary Arterial Hypertension
Secretary: Pamela Stone
Dr John Pauling BMedSci BMBS FRCP (Rheum) PhD
North Bristol NHS Trust and Honorary Senior Lecturer in the School of Translational Sciences at the University of Bristol
Dr John Pauling is a consultant rheumatologist at North Bristol NHS Trust and Honorary Senior Lecturer in the School of Translational Sciences at the University of Bristol. John was awarded the Arthritis Research Campaign Medal before qualifying from Nottingham University Medical School in 2002. In 2009 he was awarded the Dando fellowship, jointly funded by the Raynaud’s & Scleroderma Association and Royal College of Physicians. His PhD research helped John to develop an interest in outcome measures in systemic sclerosis (SSc) research, particularly in relation to peripheral microvascular dysfunction in scleroderma. He has developed and validated new methods for assessing digital vasculopathy including patient reported outcome instruments and laser-derived methods in Raynaud’s phenomenon (RP) and systemic sclerosis. John is a member of the EULAR Microcirculation study group and has contributed to recent initiatives of the UK Scleroderma Study Group. John has published over 130 peer-reviewed journal articles and several book chapters in the field of peripheral vascular disease and systemic sclerosis (h-index 30). He has presented at multiple international meetings.
Dr John Pauling sits on the executive committee of the Scleroderma Clinical Trials Consortium (SCTC) and leads the SCTC Vascular Working Group that is currently undertaking work to develop novel outcome measures for Raynaud’s phenomenon and digital ulcer disease in systemic sclerosis. He co-chairs the OMERACT systemic sclerosis special interest group. He leads the Raynaud’s taskforce for an NIH initiative to appraise outcome measures suitable for assessment by the FDA when considering clinical trials of SSc-RP. He also co-chairs the SCTC Industry Roundtable bringing together industry representatives and international scleroderma investigators to advance clinical trial design in SSc.
Conservative management of upper limb fractures in frailty
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2021: BGS Autumn meeting platform presentation abstract
805 Clinical quality – clinical effectiveness
L Shaw; T Maggs; P Braude; D Shipway; S Srivastava; M Kelly
Introduction
Upper limb fractures are the second most common fracture requiring admission to hospital after hip fracture [Jennison, 2019]. At 1-year 20.5% have died, compared to 29.5% in hip fracture [Wiedl, 2021]. Local Problems: At North Bristol Trust most patients with upper limb fractures and a Clinical Frailty Score ≥ 5 are managed non-operatively on medical wards. Local service evaluation identified a long length of stay of 23 days. Case note review revealed: ∙ Delayed transfers of care (DTOCs) had been managed non-weight bearing in slings for 4-6 weeks. ∙ Non-weight bearing status resulted in DTOC due to declined access to social care and rehabilitation due to perceived health needs. ∙ A high rate of hospital-acquired complications and failure to rehabilitate. ∙ Breakdown in interdisciplinary communication and ownership across the pathway.
Methods
A multidisciplinary QI project was commenced. Using local data through business analytics, clinician and patient feedback, a new Trust guideline was developed for older people with frailty and upper limb fractures. Data collected determined average length of stay before and after implementation of the service change. A standard process control chart was created monitoring the effect of the changes in the pathway. The multidisciplinary team met regularly to make alterations during implementation. The resulting intervention included: ∙ Removal of functional restrictions; allow free use of limb as comfort permits. ∙ Simplified slings and minimised light weight casts. ∙ Proactive integration of orthopaedic plan into CGA documentation. ∙ Proactive interdisciplinary communication across pathways. ∙ Patient information leaflets.
Results
Pre-intervention average length of stay was 23 days. Post-intervention was 14 days.
Conclusion
Proactive, structured management of upper limb fractures in people with frailty is associated with significant reduction in acute hospital length of stay. Next steps include a business case for a frailty trauma specialist therapist embedded into medicine.
Addendum 2023
Additional thanks for ongoing support from Tahid Alam, Alasdair Bott, Andrew Riddick, Frances Verey, Lynn Hutchings, Nathanael Ahearn
Antenatal Booking: Self-refer your pregnancy
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Please use Badger Notes - Self-refer your pregnancy to BNSSG and complete the form to arrange your first appointment with a midwife at North Bristol NHS Trust.
We recommend you complete the Badger Notes form as soon as you know you are pregnant; it should take approximately 10 minutes to complete.
We will contact you within three working days to offer you an appointment, this will be at the most suitable time to ensure that you are booked for your scan and screening tests within a recommended timeframe.
Appointments are occasionally offered in a neighbouring area to ensure that your appointment is at the optimum time. The first appointment is important and we would appreciate your flexibility to attend the offered appointment.
If you need help completing this form, please contact the booking team, Monday to Friday between 08:00 and 16:00 on 0117 414 6743.
Some pregnant people may require an early appointment:
- Are you known to be a carrier of sickle cell, abnormal haemoglobin or thalassaemia?
- Or have you had a pregnancy confirmed to have been affected by Down’s Syndrome, Edward’s syndrome, or Pataus’ syndrome?
If so, in addition to completing the self-referral form, please contact the Screening team for early screening advice on 0117 414 6739.
You can find more information about Badger Notes on our dedicated page.
Patient Experience Newsletter
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Welcome
Hello, I’m Kerry, the new Head of Patient Experience. I will be here whilst Emily is away. It's an honour to join such an amazing team of dedicated people who are committed to putting patients, carers and families at the heart of everything we do. I'm excited to be part of this journey with you and to support you in continuing to achieve great work in all aspects of patient and carer experience - listening to feedback, collaborating and focusing on what really matters to people in our communities.
We have a lot coming up this spring including national Patient Experience Week at the end of April and national Volunteers Week at the start of June. We have our first Carers Awareness Training Session, Gypsy Roma Traveller History Month and more! From April we will be sharing all our Patient Experience social media content under one account. Make sure you are following: NBT Patient Experience Team (@NBTPatient) / X and North Bristol NHS Trust (@north_bristol_nhs) • Instagram photos and videos
Kerry Than, Head of Patient Experience
Volunteer Services
Bwalya Treasure, Volunteer Operational Lead
Kat Tudor-Thomas, Volunteer Strategic Lead
It’s been an exciting few months, from our wonderful League of Friends funding the purchase of dedicated Carers Chairs, to our volunteers taking part in Learning Disability training. We have also been finalising our Volunteer Services Strategy for the next three years. With a huge amount of input, we will be focusing on ensuring our volunteer offer is welcoming to all. We are excited to launch this.
We are also looking forward to celebrating Volunteers Week at the beginning of June. We are lucky enough to have two UWE photography students doing a volunteer placement with us and taking photos of lots of different volunteers. These photos will form an exhibition in the Brunel building launching during Volunteers Week. This will be a chance to celebrate everything so far, whilst also looking ahead to the next three years!
Guest feature
Ingrid Barker, Group Chair for NBT and UHBW
It was a pleasure to spend some time with the Patient and Carer Partnership Group recently. We discussed how we can support, amplify and act on the voices of the people we serve as we form our Group with UHBW and begin reshaping some of our clinical services under our Joint Clinical Strategy.
The group has championed for patients for over 11 years and they help us break down barriers and make improvements. We celebrated all their achievements so far and how we will enhance this going forward.
It is key, as with everything we do, we ensure we are listening to the people we serve and carers and this group along with our other feedback and outreach, helps to ensure we are moving in the right direction.
Thank you to all our volunteers, experts by experience and carers who support us in delivering an outstanding experience.
Fresh Arts
Art on wards
Donna Baber, Fresh Arts Manager
In summer 2024, Fresh Arts commissioned Jennifer Mills, a visual artist who works with collage and sewing, and Claire Williamson, a creative writer and poet, to collaborate with patients, visitors, and staff on a series of workshops. The aim was to create inspiring and healing artwork for individual bedrooms on ward 26A.
Themes began to emerge around calming images that can soothe patients; these included a lighthouse, water, beach, and park scenes. Jennifer created four sample images and Claire asked staff to create original words to pair with the images to make each final design unique. In addition to these patient-focused designs, two further artworks were created for the staff rest room which incorporate imagery and text that celebrate the team’s work and culture.
The artworks were installed in January 2025. Sonia, a patient on the ward, was delighted that the artwork was installed while she was there. She said, “it was an utter joy for me to have the artwork installed in my room. I now have a picture of the beach; the colours of the sea, the sky, the sand are all my favourite colours. I’m using it for meditation and visualisation to help heal and get better. It incorporates everything that is ‘me’ and that would be the place that I would go to; the beach is my happy place. It really is so special to me. It couldn’t have been better timing and it has been a lifeline.”
Photo: First Avenue Photography
Patient Feedback & Engagement
Hearing all voices
Troy Crompton, Patient Experience Manager
Whilst we have many ways patients can provide feedback such as the Friends and Family Test (FFT), the Patient Advice and Liaison Service (PALS), complaints and other surveys, we also actively engage with patients to ensure we speak to and hear all voices.
A few areas we have been focusing on recently include;
- outreach with our Gypsy, Roma, Traveller communities including bringing a patient story video to Trust board of their experiences
- patient conversations on wards and over the phone, recent focus on speaking to people with a learning disability and/or autism
- gaining feedback on access from people experiencing homelessness
- outreach to local visual loss groups with a survey on our work so far
- understanding the experiences of those who do not speak English
The feedback and insights are shared with the respective areas and steering groups to shape and drive improvements to patient and carer experience.
Spiritual, Pastoral and Religious Care (SPaRC)
Chaplaincy Volunteers Training Course
Mack Kholowa, Team Chaplain
One of our aims for 2025 is to be more inclusive and diverse in our volunteer recruitment. Supported by the chaplaincy team, I (Mack Kholowa), ran a 4-week SPaRC training course in January and February. This was attended by nine new volunteers, all from a range of faith, cultural and ethnic backgrounds.
In March, the volunteers will undertake accompanied ward visits for 3 weeks where they shadow a chaplain and are then observed and supported in their own role. The Volunteers have been allocated to visit Elgar 1, Elgar 2, 25A ,27A, 28B, 6B and Rosa Burden wards. We hope volunteers will start their roles in April 2025.
The SPaRC Chaplaincy team is hopeful that the new volunteers will support our commitment to providing the best patient experience. By having a wide range of volunteers this will help us support all our patients.
Time-to-Transition - Participant Information
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Would you like to take part in a study about planned caesarean birth?
If you are pregnant with one baby and have chosen to have a caesarean birth at Southmead Maternity Unit, you may be able to take part.
If you would like to request a pdf version of our study information, please email the Study team at: TTT@nbt.nhs.uk
Summary of the study
This study is trialling a new method of caesarean birth called “Time-to-Transition". “Time-to-Transition” involves a slower caesarean birth, allowing the baby time to start breathing before it is fully delivered. We propose that this may reduce the chance of babies developing “wet lungs” which can cause breathing difficulty just after birth. We will film the births so we can learn from them. We will collect information about you and your baby, from your medical records.
We will ask you to complete some questionnaires about your birth experience and whether you or your baby have had any extra healthcare in the first month after birth. If you have a birth partner, they will also be invited to complete questionnaires about the birth.
We would like to invite you to take part in the Time-to-Transition Caesarean Birth Study. Please take time to read the information and discuss it with your friends and family. A member of the research team will be happy to answer any questions you may have.
Why is this study being done?
This is a small-scale “feasibility” study, to help us test how the study will run, and to learn if a larger-scale study would be possible.
This study is testing the Time-to-Transition Caesarean Birth method (explained below), which has been developed by Obstetricians and Neonatologists at Southmead Maternity Unit.
Why have I been invited to take part?
We are offering participation in this study to all women who are:
- having a planned caesarean birth at Southmead Maternity Unit
- pregnant with one baby
- and if the baby is in the “head down” position
Why are you testing a Time-to-Transition Caesarean Birth?
Whilst in the womb, a baby’s lungs are filled with fluid, which helps them grow and develop. During labour and birth, most of this fluid goes away, as the baby transitions from life in the womb to breathing air. Some babies might take longer to clear this fluid after they are born, so the lungs can remain “wet” for longer, making it harder to breathe until the fluid clears. When this happens, babies breathe faster and shallower, a condition known as Transient Tachypnea of the Newborn (TTN) and they often need some additional help with breathing, antibiotics to prevent or clear infection, and sometimes a stay in a Neonatal Intensive Care Unit.
TTN is twice as common in babies born by planned caesarean than those born vaginally, as at caesarean births, babies are typically born very quickly and have less time to clear this fluid and transition to breathing air.
In this world-first study, we aim to assess a new way to perform a planned caesarean to increase the time that babies have to transition: a ‘Time-to-Transition Caesarean Birth’.
What is a Time-to-Transition Caesarean Birth?
Rather than being born rapidly after opening the womb, the doctor will deliver the baby’s head and keep the body inside the womb until the baby starts to breathe or to cry, up to a maximum of 2 minutes, before delivering the baby fully. The birth will be filmed using two Hospital cameras. We will ask for your consent to be filmed. If you say no, we can film the birth in such a way that you will not be visible. You can still be involved in this Birth Partner study if you say no to being filmed.
What does Time-to-Transition mean for me and my baby?
Most of the preparation and aftercare of you and your baby will be the same as in a routine caesarean birth, but there are some important differences.
- During the caesarean birth, your doctor will deliver your baby’s head and shoulders as normal. Then, instead of immediately birthing the rest of the baby’s body, the doctor will wait up to two minutes to allow the baby to start breathing or to cry in their own time. The doctor will then deliver the baby’s body and continue care in the normal way. This will make birth of the baby more alike a vaginal birth (where the baby’s head is typically born with one contraction, and then the body is born up to three minutes later with the next contraction).
- Your baby’s birth will be filmed using two hospital cameras so we can check the method afterwards
- There may be extra Hospital staff at your baby’s birth: a Research Midwife to help with research paperwork and the cameras, and a research Neonatologist to monitor the procedure.
You can still have skin-to-skin and delayed cord clamping if you would like to. As with any caesarean birth, the mother and baby will be closely monitored and if there are any concerns the baby will be immediately delivered. Everything else about the birth and recovery afterwards will remain unchanged.
What are the potential benefits of taking part?
We don’t know if this new method is better than a routine caesarean birth. We hope that the Time-to-Transition birth will reduce the chance your baby will have wet lungs and are less likely to need help breathing, antibiotics, or a stay in NICU. But we can’t be sure. This study will help us find out.
For that reason, we don’t know if there will be any direct benefit to you or your baby, but you may be helping families in the future once the results of this study are known.
Are there any risks?
We don’t expect the Time-to-Transition birth will be riskier to you or your baby. You will both be monitored very carefully during, and after the birth. Your baby will be birthed immediately if there are any concerns about you or your baby.
What will the study involve?
We have designed the study to take as little extra time as possible. If you decide you would like to take part, this is what will happen.
The day you have your baby
- You will come to Hospital as normal, on the day you are booked to have your baby
- You will have all the normal checks before you go to Theatre and your care team will prepare you in the normal way
- You will also be asked to confirm you’re still happy to have the Time-to-Transition caesarean birth
- We will ask you to complete a "Consent to Filming" form so we can film the birth
- You (and your birth partner if you have one) will be taken to Theatre where the usual Theatre team will be waiting for you
- There may also be a Research Midwife and a Neonatologist present.
- The Doctor will deliver the baby using the Time-to-Transition method. You and your baby will be monitored throughout in the normal way.
- After the baby is born, you will be cared for in the same way.
The day after your baby is born
- A Research Midwife will come to see you on the ward before you go home.
- We will ask you to complete a short questionnaire about your baby’s birth. It takes about 5 minutes to complete.
- We will collect some information about you and your baby from your Hospital record.
A month after your baby is born
- We will contact you at home and ask you to complete the questionnaire again.
- We will also ask you some questions about whether you or your baby have had any extra care such as GP appointments, or Hospital appointments.
Can my birth partner be involved?
If you have a birth partner, they can be present at your baby’s birth, just as they would if you weren’t part of the study. We will ask them for their consent to being filmed during the birth. If they say no, we will film the birth in such a way that they are not visible.
We would also like to invite them to be a part of the Birth Partner study which involves them completing the questionnaire about birth experiences after your baby is born. If they say no, you can still be involved in this study.
Can I have a copy of the video?
Yes, if you would like it, you can request a copy. You can still bring your own camera to take your own pictures on the day.
What is the recovery time?
We don’t think your recovery time would be any different to if you were having a routine caesarean birth.
You will be cared for in the same way after the birth. More information about Caesarean birth and recovery can be found at
Caesarean Birth | North Bristol NHS Trust
(nbt.nhs.uk) or by watching this video
https://youtu.be/WEwH5WwMjoE
Who is doing the study?
This study is being carried out by staff at North Bristol NHS Trust and the University of the West of England.
How is this study funded?
This study is funded by donations made to the Southmead Hospital Charity.
Who has reviewed this study?
The Health Research Authority and South Central Berkshire Research Ethics Committee (B) REC: 23/SC/0228 IRAS project ID: 325202 have reviewed and agreed to this study.
What happens next?
If you are eligible and interested in learning more, a Research Midwife will talk to you and help you decide if you'd like to take part in this study. If you would still like to take part, they will ask you to complete a consent form.
What if I change my mind?
You can change your mind and withdraw from this study at any time and without giving a reason, but we will keep information about you that we already have. If you do not want this to happen, tell us and we will stop. It will not affect the care that you receive, nor that of the person you are birth partner for.
We will ask you to let us know your preference by completing a study withdrawal form.
We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the research data we hold about you. If you agree to take part in this study, you will have the option to take part in future research using your data saved from this study.
How will my information be used?
All research in the UK, which uses patient information must follow UK law (the Data Protection Act) and GDPR* rules.
North Bristol NHS Trust (UK) is the Sponsor for this study. This means we are responsible for looking after your information and using it properly, according to the rules and law.
In this questionnaire study we will need to use some information about you. This information will include your name, contact details and some basic information such as your age and ethnicity. We will use your contact details to get in touch with you by phone, email, or text.
We will keep all information about you safe and secure. People who do not need to know who you are will not need to see your name or contact details. Your data will be given a code number instead. We will write our reports in such a way that no one can work out who took part in the study.
Once we have finished the research study, we will keep some of the data so that we can check the results. We will store study data for up to 5 years after the end of the project, as per standard protocol at North Bristol NHS Trust. We will write our reports in such a way that no one can work out who took part in the study.
(*GDPR stands for General Data Protection Regulation)
Where can I find more about how my information will be used?
North Bristol NHS Trust is the sponsor for this study. You can find out more about how we use your information at:
Patient Data & Research Privacy Policy | North Bristol NHS Trust (nbt.nhs.uk)
www.hra.nhs.uk/information-about-patients.
You can also:
- Ask one of the research team
- Contact Helen Williamson (Head of Information Governance) at helen.e.williamson@nbt.nhs.uk or by calling 0117 4144767
What if there are any problems?
NHS-sponsored research such as this study is covered by NHS indemnity (the same indemnity that applies to any patient in the NHS). In the unlikely event that you feel you have been adversely affected by taking part in this study, you should contact the research team as soon as possible.
Should you wish to complain about any aspect of the way you have been approached or treated during the study, the normal NHS complaints mechanisms are available to you.
Please visit www.nbt.nhs.uk/patients-carers/feedback for further information about how to make a complaint or contact the North Bristol NHS Trust Hospital Patient Advice and Liaison Service (PALS): Telephone 0117 414 4569. PALS can also provide confidential advice and support to patients, families, and their carers.
Who should I contact if I have any questions?
The study is being led by Dr Joanna Crofts at Southmead Hospital (North Bristol NHS Trust). If you have any questions about the study please contact Dr Joanna Crofts, Consultant Obstetrician, Southmead Hospital either by:
The Study Email address: TTT@nbt.nhs.uk
Telephone: 01174146764