London - HCUK Support Group
London based in University College London Hospital (UCLH)
Jane Bellamy - Chair
This has been an eventful period for the HCUK London Support Group.
We have seen Cyril Cleary stand down after six years of service as our founder Chair. We thank Cyril for all the hard work, energy and enthusiasm he has invested in building up the vigorous Group we have today and wish him well in his new endeavours.
Jane Bellamy has stepped in as Chair and Allan Weaire will assist her with the administration as Secretary.
We are looking forward to building on our valued links with UCLH which have seen Dr David Graham, Consultant Gastroenterologist, deliver a talk on Cryotherapy as a treatment for Barrett's Oesophagus at our recent quarterly meeting. Very briefly cryotherapy shows promise as a means of treating the most difficult cases and as a new frontline treatment with cost-cutting potential.
We intend to make similar talks a feature of our meetings whenever we can since we believe they are welcomed and enjoyed by our members. We are fortunate to be able to invite Dr Rehan Haidry and Sally Thorpe, our clinical nurse specialist, to give the next two talks. Details of these will be sent later. Sally instigated the set up and development of our Barrett’s Oesophagus Support Group at UCLH and we greatly value her ready support.
We have just heard that the surgeons at UCLH are running an oesophageal cancer awareness day on 29 May and Sally will be letting us have an invitation soon.
Now that Sally has managed to secure some suitable accommodation for us, we will be resuming our support for Barrett's patients attending outpatients’ and endoscopy clinics at UCLH. This has had to be suspended for a few months for lack of room. We are most grateful to Sally for this as it is such an important element of our Group’s pastoral care which is delivered by our members.
Since we do not have their postal addresses for confidentiality reasons, we have emailed all our members seeking their consent to continued email contact as required by the new Data Protection regulations. The deadline is fast approaching. The response has so far been very positive. We have taken this opportunity to ask the membership for their views and ideas on how they would like to see our Patients Support Group develop in future. We intend to follow up and develop this member led approach in the coming months.
A very warm welcome to the home page of the London Patients Group , based at UCLH Hospital. Our group was formed in December 2012 , and we now have regular events based at the hospital, designed to inform and support new and existing Barrett`s patients on all aspects of the condition, as well as a keen interest in research, future developments, and lobbying for sufficient resources to meet an ever growing need.
We see our primary purpose as providing pastoral care to patients and carers in the London area, to compliment the exemplary care provided by the medical team at UCLH and the wider HCUK charity network.
Our regular contact currently takes the following forms;
Firstly, all new patients are routinely informed of the existence of our group in the hospital, and are encouraged to contact me by phone, at any time, to learn about the group , and discuss any questions they may have, fellow patient to patient.
Secondly, we attend regular clinics at UCLH on the 1st and 4th Wednesdays of the month, offering the facility to patients and carers attending the hospital to come and have a cup of tea and a a chat with us, again seeking to offer an opportunity to listen to any concerns, and share our practical experience of Barrett`s, which collectively is now a huge bank of practical knowledge.
Finally, we hold open patient`s meetings at the MacmIllan Centre, UCLH, on a quarterly basis, on the 1st Wednesday of the month, from 5 - 7pm, which we have found to be very helpful, friendly and supportive.
We regularly invite guest speakers to these meetings to discuss specific aspects of Barrett`s, including our key Consultants, dieticians, and specialist nursing staff.
Though still a relatively new group, our numbers are growing steadily, and I know we all feel this is proving to be an invaluable new service from which we all learn and receive huge benefits, which ultimately contribute to greater knowledge, and ultimately to better outcomes for ourselves and our families, which is so important for us all.
If you would like to know more, or, even better, come and join us, please feel free to contact me at any time
Jane Bellamy - Chair
02089 774 625
Recent patient Support Group Meeting at the Macmillan Centre, University College London Hospital, Huntley Street, London WC1E 6AG.
We were treated to a very stimulating presentation by Professor Laurence Lovat, Professor of Gastroenterology and Biophotonics, on "The Development of Barrett`s treatment, and patient self-help".
New members are always particularly welcome, and we hope you`ll find the group is a great way to understand more about Barrett`s, share practical advice from our collective experience as patients, and keep up to date on the fast changing developments in research and treatments.
Recent successful publicity and fund raising event held in the Atrium of UCLH.
Why Heartburn Cancer UK Exists
As a recognised and trusted authority in the field of Cancer of the Oesophagus, we know that with your help we can make significant inroads in the Prevention, Detection and Treatment of this disease by focussing on 5 key areas of action:
Education leads to a lasting change. We are working hard to influence public and social policy, to lobby politicians, to campaign for change, to promote greater collaboration amonsgt the medical profession, the public and the government. We are already in the process of developing a network of effective partnerships with businesses, the pharmaceutical industry, medical professionals and other like-minded groups. We intend to affect change and influence how this disease is perceived, detected, diagnosed and treated.
Our aim is to significantly reduce incurable oesophageal cancer in the UK.
Our renowned medical professionals, all experts in the field of oesophageal cancer, will continue to play a key role in research and trials designed to reduce the incidence of this appalling disease.
Early detection rates are vital to ensure a positive outcome. We are creating a communication network to facilitate greater awareness of the importance of diagnosing the disease early, identifying the symptoms associated with the disease and seeking medical help quickly. Oesophageal cancer affects everyone regardless of their race, gender or age.
We will ensure consistent support is available to everyone affected by Barrett’s Oesophagus, regardless of who they are and where they live. Information and advice is available to all those affected by the disease and to the people who support them on our website or by telephone.
We need your help to bring this to the attention of your employees, friends & family or indeed anyone who might suffer from persistent heartburn!
You can make a difference perhaps you know someone who has suffered from persisitent heartburn, Barrett’s Oesophagus or Oesophageal Cancer. Perhaps you run an organisation and would like to help, why not make it your company’s corporate responsibility?
We are not content with standing still, we are determined to develop and grow a sustainable UK charity which continually re-invests to maximise the impact of its resources.
Working with UK businesses and voluntary organisation’s, our outward facing collaborative approach will ensure we are the first place to come to for reliable up to date information about Heartburn, Barrett’s and Oesophageal Cancer.
HCUK - Information Centre
All you need to know about Heartburn, Barrett's Oesophagus, Oesopageal Cancer. If you need support we can offer advice, please contact us on the "Ask our Doctor a Question" form, or you can join one of our Local Support Groups. You can also buy Heartburn Cancer UK Clothing and other HCUK Merchandise to help Raise Awarness and of course we would very much welcome a Donation to keep the charity able to carry on offering free advise and Raising Awareness, Changing the Future and Saving Lives.