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Guy’s Hospital NF Centre Coffee Meetings

31 January 2023

The Guy's Hospital Neurofibromatosis Centre will be holding coffee afternoons on the third Wednesday of each month during 2024. 

The coffee afternoons are open to all people who come to the NF clinics (patients and their family/ carers) and are a chance to meet other people in a similar situation, to get some relevant information, and chat about the information and their experiences in a group. People can attend face to face or virtually. We meet in our MDM room (in the NF department, 1st floor, Southwark Wing, Guy's Hospital, Great Maze Pond, London), and have a chat over a tea or coffee and some biscuits.

Please note, this coffee afternoon is only available for patients currently under the Neurofibromatosis Centre at Guy's Hospital.

If this applies to you and you are interested in attending, or would like to be added to the coffee club mailing list, please click the link to register.

The deadline to register, for virtual or in person attendance, is the day before the coffee meeting, ie please register by Tuesday 16th April for the Coffee Club meeting on Wednesday 17th April.

Rona and Isha 

Photo on left: Isha (Specialist Social Worker) and Mary (NF Lead, Advanced Nurse Practitioner)

Photo on right: Susie (Highly Specialist Clinical Psychologist) and Rona (Clinical Nurse Specialist)

2024 Meeting Outline

January: Postponed Christmas party
February: Sleep hygiene
March: Itch and skin care
April: This month we will have a talk from one of our patients about her NF journey. 
May: NF awareness with Nerve Tumours UK
June: Physiotherapy and how to be active
July: Medi cinema
August: Benefits and employment support
September: NF updates and research news
October: How to think about pain
November: Mindfulness

2023 Meetings

January: Choosing art for the waiting room.

You can see Richard's work here: https://www.flickr.com/photos/richieephotos/ 

"Our first coffee afternoon and patient and staff forum of 2023 was great - thank you to everyone who came along. Over a hot (or cold) drink and biscuits, we chose some art for our waiting area. One of our patients is a photographer and he kindly picked a selection of his photos for us to look at so we could choose our favourites for the waiting area. As we looked and talked about the photos, it inspired some of our other patients to share their beautiful artwork too. We hope to be able to change the art in the waiting area from time to time to include as many pieces as possible. After the coffee afternoon some of the staff joined us for the forum where we talked about some of the plans for the department and some changes coming to the Trust. It’s a great chance to get involved with what is going on in the department. "

– Rona, Clinical Nurse Specialist

February: Visit from Nerve Tumours UK 

"This month Markus from Nerve Tumours came to chat to us while we enjoyed birthday cake and doughnuts with our tea and coffee. Then we were joined by NF staff for news and updates about our department and the Trust and we welcomed our newest nurse specialist to the team! Next month Millie, our physiotherapist, will pop along to our coffee afternoon to give us some tips on staying active."

– Rona

March: Physiotherapy and how to be active

Millie visited our coffee club this month. She talked about the importance of keeping active and set us a challenge for NF awareness month! Millie encouraged us to do one or more of the following over the month, either all at once or spread over a week or the month:

• 26 sit to stands

• Walk 26.2 miles or km

• Be physically active outside for 26.2 minutes

• Do 26.2 minutes of any physical activity

 

April: Introduction to genetics 

We had a fascinating talk from Andrew, one of our genetics councillors, over cake and biscuits this month. Andrew gave us an introduction to genetics from DNA to family planning. 

 

May: What is pain management?

Dr David Pang, one of our pain consultants who supports some of our patients, came to speak to the group this month. As well as telling us about pain, when pain is normal and helpful, and when it goes wrong, he shared some great resources with us including the pain tool kit and flippin' pain.

 

June: Our patient coordinators will be talking about their role and how they can support our patients

July: Film screening

August: Navigating the NHS and benefit advice (Rona and Isha)

September: NF updates from CTF conference (Mandy and Professor Ferner)

October: Fundraising ideas and news from Nerve Tumours UK. Nav will update on MyChart

"It was great to meet the NF group at Guy's and St Thomas at their monthly coffee social meeting and see their interest in fundraising for Nerve Tumours UK and raising awareness for the wider community across the country. It was also good to catch up in person with the specialist team of Medics and Nurses and those attending the session."

– Markus Bell, Marketing and Operations Manager, NTUK

Are you interested in fundraising for the NF community? Do you have any questions or suggestions? Contact fundraising@nervetumours.org.uk 

November: Susie joined us to discuss mindfulness and lead us in a short mindfulness exercise. Please see her slides or follow these links for more information

December: Christmas party on 6th December 

Sadly, there are train strikes scheduled for 6th December when our Christmas party is planned so we will not be able to meet face to face. It is very short notice to change the date so we thought we would try an online Christmas quiz on 6th December. We will also have a New Year party in January. January is always a long dull month so a bit of delayed Christmas sparkle may be just what we need.  

If you would like to join us for our online Christmas quiz use this link from 1pm on Wednesday 6th December.  Have a wonderful Christmas and New Year if you are not able to join us online. See you in 2024!

Rona and Isha 

Come along and meet other NF patients for an informal chat at 1pm on the 3rd Wednesday of each month

If you have any questions about these coffee afternoons, please contact the NF team at Guy's via email: gst-tr.guysnfnurses@nhs.net  

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK