Guy’s Hospital NF Centre Coffee Meetings
30 June 2024
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 20th August for the Coffee Club meeting on Wednesday 21st August.
Rona and Isha
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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
Presentation: - Thank you to Karen, Nerve Tumours UK Charity Director, who came along to talk to us about Nerve Tumours UK and the wonderful work that they are doing to raise awareness of the condition. Karen also talked about the ‘Shine a Light’ campaign, with 17th and 22nd May being the international days of awareness. NF awareness adverts would be displayed in 27 train stations.
• 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/
– Rona, Clinical Nurse Specialist"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. "
February: Visit from Nerve Tumours UK
– Rona"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."
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
– Markus Bell, Marketing and Operations Manager, NTUK"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."
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
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