Patient Meetings

Upcoming events

• 28 May 2013

  NET Natter Group - Hull

  Please meet at the main reception desk in the oncology department at Castle Hill Hospital. To find out more, please contact Lesley at

  585767@585767.karoo.co.uk

  Hull

• 3 June 2013

  RCF Patient Empowerment Day

  The Rarer Cancers Foundation is holding a Patient Empowerment Day at The Holiday Inn London–Bloomsbury Coram Street, London WC1N 1HT on Monday 3rd June 2013 10.00am – 3.30pm This rare and less common cancer patient day is an ideal opportunity for patients, carers and their families to gain a better understanding of the care and support that they should expect following diagnosis with a rare or less common cancer. It is vital that patients are confident that they are receiving the best possible service and treatment from the NHS and this conference is designed to inform and empower patients how to take an active/joint role in all decisions made about them. The conference will explore many of the options available to patients such as referrals to expert second opinions, specialist cancer centres, clinical trials, radiotherapy, access to drugs and much more besides. The conference will also include an exciting session which will focus specifically on how you can help to campaign for improvements and better outcomes at both local and national levels for cancer patients. Attendees will be able to participate in a 1 to 1 session with advocacy experts where you will be able to receive individual advice and support to help overcome specific barriers that you may be facing such as how to access latest treatments or drugs, lack of information and support, access to clinical nurse specialists etc. This event is designed to be informative, supportive and inspiring for patients at all stages of their cancer journey. We want you all to have a better understanding of who is involved in your care and how you can have a positive impact and maybe help improve services and support for all rarer cancer patients Please email Debbie de Boltz at debbied@rarercancers.org.uk or telephone 0208 692 2910 and ask for a London Patient Day registration form or download one here.  Places are limited for this event and  will be allocated on a first come first served basis so please register without delay to avoid disappointment.  

  London

• 3 June 2013

  NET Natter Group - Gloucestershire

  The meetings are held at the Maggies Centre, The Lodge, College Baths Road, Cheltenham, GL537QB (Near Cheltenham General Hospital)
  www.maggiescentres.org/centres/cheltenham/home.html
  The sessions are coordinated by Matthew Dicks, clinical psychologist at the Maggies centre  and Donna Norman the Rare Cancer Specialist Nurse. All NET patients and their carers are welcome. Mon April 8th                10.30am until 12 noon.    Sue Griffiths – Fatigue Management
  Mon May 13th               5pm until 6.30pm
  Mon June 3rd                10.30am until 12 noon
  Mon July 1st                  5pm until 6.30pm
  August                      NO MEETING
  Monday September 2nd 10.30 until 12noon
  At the end of each meeting there will be sandwiches and refreshments.Please contact Donna by email donna.norman@glos.nhs.uk or 07554 330251 in advance in order to arrange the refreshments.

  Cheltenham

• 1 July 2013

  NET Natter Group - Gloucestershire

  The meetings are held at the Maggies Centre, The Lodge, College Baths Road, Cheltenham, GL537QB (Near Cheltenham General Hospital)
  www.maggiescentres.org/centres/cheltenham/home.html
  The sessions are coordinated by Matthew Dicks, clinical psychologist at the Maggies centre  and Donna Norman the Rare Cancer Specialist Nurse. All NET patients and their carers are welcome. Mon April 8th                10.30am until 12 noon.    Sue Griffiths – Fatigue Management
  Mon May 13th               5pm until 6.30pm
  Mon June 3rd                10.30am until 12 noon
  Mon July 1st                  5pm until 6.30pm
  August                      NO MEETING
  Monday September 2nd 10.30 until 12noon
  At the end of each meeting there will be sandwiches and refreshments.Please contact Donna by email donna.norman@glos.nhs.uk or 07554 330251 in advance in order to arrange the refreshments.

  Cheltenham

• 15 July 2013

  PLANETS NET Patient Day - South Central

  Please note that time and speakers are to be confirmed.

  Southampton

• 2 September 2013

  NET Natter Group - Gloucestershire

  The meetings are held at the Maggies Centre, The Lodge, College Baths Road, Cheltenham, GL537QB (Near Cheltenham General Hospital)
  www.maggiescentres.org/centres/cheltenham/home.html
  The sessions are coordinated by Matthew Dicks, clinical psychologist at the Maggies centre  and Donna Norman the Rare Cancer Specialist Nurse. All NET patients and their carers are welcome. Mon April 8th                10.30am until 12 noon.    Sue Griffiths – Fatigue Management
  Mon May 13th               5pm until 6.30pm
  Mon June 3rd                10.30am until 12 noon
  Mon July 1st                  5pm until 6.30pm
  August                      NO MEETING
  Monday September 2nd 10.30 until 12noon
  At the end of each meeting there will be sandwiches and refreshments.Please contact Donna by email donna.norman@glos.nhs.uk or 07554 330251 in advance in order to arrange the refreshments.

  Cheltenham

Past events

• 16 May 2013

  NET Natter Group - South Wales

  We were so delighted that the last meeting was such a great success. Thanks to all, especially Sally and Jan. Please note that this May meeting is TBC. Please keep in touch via Facebook or this website for confirmation of the time.

  Whitchurch

• 13 May 2013

  NET Natter Group - Gloucestershire

  The meetings are held at the Maggies Centre, The Lodge, College Baths Road, Cheltenham, GL537QB (Near Cheltenham General Hospital)
  www.maggiescentres.org/centres/cheltenham/home.html
  The sessions are coordinated by Matthew Dicks, clinical psychologist at the Maggies centre  and Donna Norman the Rare Cancer Specialist Nurse. All NET patients and their carers are welcome. Mon April 8th                10.30am until 12 noon.    Sue Griffiths – Fatigue Management
  Mon May 13th               5pm until 6.30pm
  Mon June 3rd                10.30am until 12 noon
  Mon July 1st                  5pm until 6.30pm
  August                      NO MEETING
  Monday September 2nd 10.30 until 12noon
  At the end of each meeting there will be sandwiches and refreshments.Please contact Donna by email donna.norman@glos.nhs.uk or 07554 330251 in advance in order to arrange the refreshments.

  Cheltenham

• 11 May 2013

  AMEND Annual Information Day - London

  A very warm welcome awaits anyone who would like to attend our popular FREE Annual Patient Information Day. You don't have to be a member of AMEND to come along and meet other patients and their families, as well as some of the top specialists in their field for some fascinating talks.

  Our 2013 Programme Includes:

  The Highs and Lows of Calcium: Professor Karim Meeran, Imperial College London The Future for Children with MEN and SDHx: Constantine Stratakis MD DMSci, NIDCH, USA Report on AMEND funded research project, Prophylactic Thyroidectomy for MEN2 in the UK: Mr Tom Kurzawinski, UCLH/GOSH, London The Genetics Department's Role in Talking with Kids: Dr Louise Izatt MA MB BChir PhD FRCP, Consultant in Cancer Genetics, Guy's Hospital, London Current Management of MEN1: Dr Paul Newey, Consultant Endocrinologist, Oxford Centre for Diabetes, Endocrinology & Metabolism (OCDEM) The Fastest Adrenalectomy in the West: Mr Fausto Palazzo, Imperial College London Patient Experiences 'Ask the MDT Live!' and Q&A sessions Display of relevant research posters during lunch Children's Activities: for children over the age of 7 there will be entertaining and educational workshops from the St Bart's and The London Medical School Centre of the Cell team, including 'Test your Neurons' and the gooey world of 'Snot, Sick and Scabs'!  

  London

• 10 May 2013

  Anne Edgar Charitable Trust Patient Forum - Scotland

  Our next patient forum sees a return to the Royal College of Physicians in Edinburgh, on Friday 10^thMay.  Full details and invitation letters will be issued approximately six weeks ahead. In the meantime, though, we hope our list of Guest Speakers will include:
  • Dr Mark Strachan and / or Dr Lucy Wall, from the Edinburgh Western General
  • Robert MacPhail, who will share his experiences being treated  at London’s Royal Free hospital
  • A specialist speaker to suggest strategies for keeping spirits up in challenging times
  • Anne Hand, carcinoid patient and Trustee will be talking about her treatment experiences
   

  Edinburgh

• 18 April 2013

  NET Natter Group - Gloucestershire

  The meetings are held at the Maggies Centre, The Lodge, College Baths Road, Cheltenham, GL537QB (Near Cheltenham General Hospital)
  www.maggiescentres.org/centres/cheltenham/home.html
  The sessions are coordinated by Matthew Dicks, clinical psychologist at the Maggies centre  and Donna Norman the Rare Cancer Specialist Nurse. All NET patients and their carers are welcome. Mon April 8th                10.30am until 12 noon.    Sue Griffiths – Fatigue Management
  Mon May 13th               5pm until 6.30pm
  Mon June 3rd                10.30am until 12 noon
  Mon July 1st                  5pm until 6.30pm
  August                      NO MEETING
  Monday September 2nd 10.30 until 12noon
  At the end of each meeting there will be sandwiches and refreshments.Please contact Donna by email donna.norman@glos.nhs.uk or 07554 330251 in advance in order to arrange the refreshments.

  Cheltenham

• 16 April 2013

  NET Natter Group - Hull

  Please meet at the main reception desk in the oncology unit in Castle Hill Hospital

  Hull

• 25 March 2013

  PLANETS Patient Meeting - Eastleigh

  PLANETS are happy to announce their first Patient Support Meeting for NET patients at the Concorde Club, Eastleigh on Monday March 25th starting at 9.30am. To secure your place or for further details please e-mail Emma Ramsey or call on 02380 795753.  A NET specialist will be available for a 1 hour Q&A session and coffee, tea and biscuits will be served throughout.

  Eastleigh

• 2 March 2013

  North & North East Patient Meeting at Pontefract Racecourse

  Don’t miss this exciting event. Come and meet some of the experts in the field of neuroendocrine tumours, and share your experience with others who are affected by NETs. This will be a great opportunity to find out more, ask questions and perhaps meet other patients and carers who live in your area. Presentations will cover topics such as the treatment and management of neuroendocrine cancers, and diet and nutrition in NETs. Other topics to be confirmed. Doctors attending will include Alan Anthoney, Jonathan Wadsley, John Newell Price, Mussawar Iqbal and Anthony Maraveyas. The event will run from 1 – 4pm, with registration from 12. Snacks will be available, as well as tea, coffee and cakes. Venue:Pontefract Racecourse, Pontefract Park  Park Road, Pontefract, Wakefield WF8 4QD  http://www.pontefract-races.co.uk To register, please email us at hello@netpatientfoundation.org or call us on 0800434 6476  

  Pontefract

• 28 February 2013

  South Wales NET Support Group meeting - CHANGE OF VENUE

  If you're interested in coming along, you can get in touch via the South Wales forum at http://www.netpatientfoundation.org/forum/13_1.html or at the South Wales facebook page at http://www.facebook.com/WelshNets

  Whitchurch

• 4 December 2012

  UKINETS

  The UK & Ireland Neuroendocrine Tumour Society is holding its annual meeting on 4th December. The NET Patient Foundation will be presenting a poster showing the results of our survey. NB: this event is for registered healthcare professionals only.

  London

• 3 December 2012

  Patient Support Meeting Gloucestershire

  NET patient Peer Support meetings are held monthly for NET patients and their families/ carers at The Maggies Centre, Cheltenham.These are held on the 1st Monday of the month 1.10.12 11am-1pm5.11.12 11-1pm3.12.12 11-1pm Light refreshments are provided Please contact Donna Norman, Rare Cancer Specialist Nurse 07554 330251 for more information.

  Cheltenham

• 10 November 2012

  NET Cancer Day Patient Event at Ascot Racecourse

  Come and join us for a special patient education meeting to mark the 3rd World NET Cancer Awareness Day.   Agenda:   11:45 Registration, tea & coffee (there will be a sandwich bar where you can buy soup/sandwiches) 1pm - Welcome   Talks to cover topics such as: Diet and Nutrition in NETs, by a dedicated dietician from the Royal Free Hospital, London Other talks to cover new advances in the treatment of NETs, including surgery. We will also be joined by A.M.E.N.D and there will be a nurse booth, where specialist nurses will be happy to talk to you.   3 - 3:45 Q& A Session: Bring your questions and ask the experts about all aspects of living with NETs.   NB: The final agenda will be posted on our website. Please note also that this event will be filmed, and all presentations will be made available online after the event.   If you would like to attend this meeting, please contact us on 0800 434 6476 or at c.bouvier@virginmedia.com  

  Ascot

• 5 November 2012

  Patient Support Meeting Gloucestershire

  NET patient Peer Support meetings are held monthly for NET patients and their families/ carers at The Maggies Centre, Cheltenham.These are held on the 1st Monday of the month 1.10.12 11am-1pm5.11.12 11-1pm3.12.12 11-1pm Light refreshments are provided Please contact Donna Norman, Rare Cancer Specialist Nurse 07554 330251 for more information.

  Cheltenham

• 11 September 2012

  Anne Edgar Charitable Trust meeting in Glasgow

  The Anne Edgar Charitable Trust is a new charity, registered in Scotland, dedicated to the provision of practical assistance to those living with neuroendocrine tumours. Their first meeting in the west of Scotland will be held on: Tuesday 11th September 2012 11:00 - 15:30 The Royal College of Physicians 232-234 St Vincent St, Glasgow G2 5RJ For more information, please email daviddrummond@blueyonder.co.uk

  Glasgow

• 16 July 2012

  PLANETS NET Patient Day

  The long awaited 1st PLANETS NET patient day will take place at Chilworth Manor Hotel justoutside Southampton on Monday 16th July 2012.
  NB: Time of event to be confirmed
  To see the agenda, please click PLANETS NET AGENDA FINAL Poster
  This will be a great opportunity for patients to get together as well as having talks from some of the most influential consultants in the field of NETS.
  The even will run all day and include refreshments and lunch - all at no cost !
  Spaces are limited so it will be strictly on a first come first served basis.
  Please contact Layla at layla267@aol.com to book a space! www.planets-carcinoid.org
   

  Southampton

• 20 June 2012

  Essex NET Patient Meeting

  6.00pm Registration and Refreshments 6.15pm Introduction & welcome: Dr Mary McStay, Consultant Gastroenterologist & Mr Allan Silver, Chairman of South Essex Patient Support Group 6.25pm Targeted treatments for Neuroendocrine Tumour Dr John Buscombe, Consultant in Nuclear Medicine, Addenbrookes Hospital, Cambridge 7.10pm Questions 7.30pm Round table discussion and buffet dinner

  Chelmsford

• 26 May 2012

  Liverpool Patient Meeting

  Save the Date! We’ll be holding a patient education meeting at Aintree Racecourse on Saturday 26th May between 1 – 4 pm. This will be a great opportunity to hear from some of the top specialists in the world of NETs and to ask them any questions you may have. It’s also a chance to meet other NET patients living in your area. If you’d like to register for this event, please email us at info@netpatientfoundation.org or call us on 0800 434 6476  

  Aintree

• 19 May 2012

  AMEND Patient Day

  Come and join us from 9:30am to 4:30pm for this FREE popular and fascinating day.  Listen to world-class medical expert speakers, meet other patients and AMEND volunteers, and explore all that AMEND has to offer.  Patients (both members and non-members), their families, friends and interested health professionals are all welcome.  Book your place now using our booking form. For more information see: http://www.amend.org.uk/2012AGMInformationDay_000.asp

  Warwickshire

• 15 March 2012

  Ann Edgar Inaugural Patient Forum - Scotland

  Introducing the Ann Edgar Charitable Trust “Providing practical support in Scotland for patients living with carcinoidand other neuro-endocrine tumours”. The Trustees of The Ann Edgar Charitable Trust are pleased to announce the formation of this new charity, registered in Scotland, dedicated to the provision of practical assistance to those living with carcinoid, or other forms of NET (neuro-endocrine tumour). The charity’s founder, Ann Edgar, was herself a patient, diagnosed with Carcinoid Syndrome in 2005.  Very sadly, Ann was lost to us in August 2011, but not before she had seen the fruition of her final wish – the birth of her new charity to help others cope better with the stresses of living with cancer. To help explain more about TAECT and what we aim to achieve we are delighted to invite you, and a guest, to attend our inaugural meeting, which will be held on Thursday 15^th March 2012, at The Royal College of Physicians, 9 Queen Street, Edinburgh. The meeting will start at 11:00am and will close at approximately 3:30pm.  A buffet lunch will be served during the meeting. Directions to the venue are shown overleaf. The agenda will include:
  • An introduction to Ann Edgar, her inspirational life and her story
  • Information on The Trust, our aims and objectives, and how we can provide patient support
  • Speakers from the NET Patient Foundation, our partners in the provision of support to patients, and from Maggies, based at Edinburgh’s Western General
  • A chance to hear from medical specialists in the field of carcinoid and NETs
  • An opportunity for you to voice what you would like from The Trust – how can we help you?
  The Trustees will be delighted to see you there and we hope very much that you will be able to attend. It will greatly assist administration if you could, please, complete and return the enclosed registration form if you will be joining us. (Or, if you are unable to attend on this occasion but would like to be kept informed of future events please tick the relevant section of the form and return it to me - we will be pleased to add your details to our records).   We shall look forward to seeing you on 15^th March. In the meantime, if you would like any further information please contact me at the above address. David J Drummond Treasurer, For the Trustees of The Ann Edgar Charitable Trust.
   

  Edinburgh

• 10 November 2011

  World NET Cancer Awareness Day 10 November- SAVE THE DATE!

  The NET Patient Foundation will be supporting a range of events to mark the 2nd World NET Cancer Awareness Day on Thursday 10th November. We will host a Patient Education Meeting at the Bicester Hotel, with expert speakers from NET centres around the UK. This central location is just 60 miles from London and Birmingham, and easily accessible by car or train. If you would like to attend this meeting, or if you would like to show your support by organising an event or selling our lapel pins, please contact us on 0800 434 6476 or at hello@netpatientfoundation.org  

  Bicester

• 18 October 2011

  Annual Hammersmith HPB Symposium

  Patients are being invited to attend a session on 'Neuroendocrine Tumours - what are the treatment options?' given by Rohini Sharma from Imperial College. The session begins at 2.45pm. Venue: Wolfson Lecture Theatre III Wolfson Education Centre Hammersmith Hospital Du Cane Road London W12 0HS For further information: Catherine Ranwashe NET Clinical Trial /Research Nurse PA to Professor Andrea Frilling Department of Surgery and Cancer Imperial College Healthcare NHS Trust Hammersmith Hospital Du Cane Road London, W12 0HS, UK Telephone: +44 (0) 2033133941 Fax: +44 (0) 2033133963 Email:catherine.ranwashe@imperial.nhs.uk Admission free  

  London

• 15 October 2011

  Cork Patient Meeting

  Please note, the Dublin meeting that we had scheduled for the 8th October has been cancelled, and replaced by this meeting, which will coincide with a medics' meeting. More details to follow... Please note: We sponsor a number of patient meetings that are planned by local NET teams. We will attend the events and try and ensure that we are aware of all of the agenda and venue details. If we cannot answer queries about meetings then we will put you in contact with event organiser

  Cork

• 8 October 2011

  Dublin Patient Meeting - MOVED TO CORK! - see below

  Please note that this meeting has been moved to CORK, and the date has been moved to 15TH OCTOBER. More details to follow. Please note: We sponsor a number of patient meetings that are planned by local NET teams. We will attend the events and try and ensure that we are aware of all of the agenda and venue details. If we cannot answer queries about meetings then we will put you in contact with event organiser
   

  Dublin

• 10 September 2011

  East Anglia Patient Meeting

  This meeting will include talks on "What nuclear medicine is planning to offer the NET patient" by John Buscombe. Full programme to be confirmed shortly. If you'd like to register for this meeting, please call us on 0800 434 6476, or contact us at hello@netpatientfoundation.com For directions to Newnham College, go to: http://www.newn.cam.ac.uk/about/about_find.shtml NB: Parking is available at the Sidgwick Site car park which is right opposite the college's Porters' Lodge on Sidgwick Avenue Please note: We sponsor a number of patient meetings that are planned by local NET teams. We will attend the events and try and ensure that we are aware of all of the agenda and venue details. If we cannot answer queries about meetings then we will put you in contact with event organiser

  Cambridge

• 5 September 2011

  NET Support Group - Gloucs, Worcs, Herefordshire

  Do you have a sarcoma or neuroendocrine tumour, including carcinoids and would like the opportunity to meet other people with a similar disease? Patients and their carers in Gloucestershire, Worcestershire and Herefordshire who have been affected by sarcomas or neuroendorcrine tumours are invited to attend a support group in Cheltenham on the first Monday of each month. It will be an opportunity for you to talk about your experiences, ask advice, seek support and learn more about your condition. The group is intended to be helpful and supportive in a relaxed and safe environment. The group will be facilitated by Donna Norman, Macmillan rare cancer clinical nurse specialist and Rachel Holland, clinical psychologist at Maggie’s; both who have many years experience of supporting people affected by cancer. Dates & times for 2011 - NB Please check dates and times before you come! July 4th August 1st September 5th October 3rd November 7th December 5th 5-7pm 1-11pm 5-7pm 11-1pm 5-7pm 11-1pm Come and join us at Maggie’s, The Lodge, College Bath Road, Cheltenham, GL53 7QB. Light refreshments provided Please contact Donna Norman, Macmillan Rare Cancer Clinical Nurse Specialist on 07554330251 if you would like to be part of this group.
   

  Cheltenham

• 20 July 2011

  Patient Meeting Essex

  The South Essex Neuroendocrine Patient Group cordially invite you to attend a meeting on Wednesday 20^th July 2011 6.00pm to 7.00pm in the Highwood Room at the Best Western Ivy Hill Hotel, Margaretting.  Professor Martyn Caplin, Lead Clinician at the Neuroendocrine Unit, Royal Free Hospital will be speaking to the group about new treatments for neuroendocrine tumours. The Best Western Ivy Hill Hotel is located off the A12, near Chelmsford.  The address is:   The Best Western Ivy Hill Margaretting Chelmsford Essex    CM4 0EH Light refreshments will be provided.  Please feel free to invite a family member or friend (up to a maximum of two per attendee please). If you are able to attend or have any queries please contact my secretary on (01206) 745210 or by email, Jennifer.lancaster@colchesterhospital.nhs.uk . Yours sincerely Dr M. McStay Consultant Physician & Gastroenterologist http://www.netpatientfoundation.org/wp-content/uploads/COLMAP.pdf    

  Chelmsford

• 9 July 2011

  Wales Patient Meeting

  Programme: 10am - Tea & coffee 10.30 - Welcome Cathy Bouvier, NET Patient Foundation 10.40 - The NET service in Wales and overview of advances in the field of neuoroendocrine cancer Dr Aled Rees 11.15 - Diet in NETs: the common questions and answers Sister Philippa Davies, Royal Free Hospital 11.35 - Q & A Session 12.15 - Close Dr Aled Rees If you'd like to register, please email us at hello@netpatientfoundation.com or call Cathy on 0800 434 6476
   

  Cardiff

• 19 February 2011

  South West Patient Meeting

  Due to lack of interest, the Plymouth meeting has been postponed until further notice. For more details, please download the information (PDF).

  Plymouth PL6 5US