Masters Award 2012
To download a nomination form for the 2012 Keith and Marian Masters award please click here or contact Arlene Smyth at TSSS Head Office.Booking form
Download a booking form for the Irish Open Day.| Medicine and me - Tuesday March 6 |
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Medicine & Me, Turner Syndrome on Tuesday 6th of March 2012 at the Royal Society of Medicine London An introduction to ‘Medicine and Me’ Meetings at the RSM Booking form Attending this conference will offer the delegate the opportunity to learn more about Turner Syndrome[TS] and how it impacts on the lifes of those who have TS. There will be information and tips on how to stay happy and healthy with TS. It is an ideal conference for trainee doctors to attend as it will not only share inmortant medical information, it will be balanced with personal experiences which often prove invaluable in the future. You will also have the opportunirty to learn about the support availbale from the Turner Syndromne Support Socuety[TSSS]. This is a conference that is FREE to Patients/Carers with some of the top specialists in the country sharing their knowledge and experience of Turner Syndrome. Dr Gerry Conway Consultant Endocrinologist, Dr Melanie Davies Consultant Gyaecologist and Reproductive Medicine Specilaist, Prof David Skuse Head of Behaviour & Brain Sciences at Insitute of Child Health, Dr Richard Stanhope Consultant Endocrinologist and Dr Fiona Walker a Cardiologist. Covering a wide range of topics such as How a diagnosis of TS is made, What Turner Syndrome is, Living with Turner Syndrome, Fertility and Heart awareness. With personal experiences from a number of girls, women and parents of those who have Turner Syndrome and the TSSS. ‘Medicine and Me’ meetings are always organised jointly with the relevant patient support group / research charity or charities. Planning for the meetings is coordinated by an appropriately constituted planning group at the RSM, which includes patients and experts nominated by the support group. The purpose is to ensure that the programmes are structured to meet the needs and concerns of patients with the condition in question. A number of meetings have been held over the last five years: • Asthma, with Asthma UK. • Coeliac Disease, with Coeliac UK. • Breast Cancer, with Breast Cancer Care UK • Multiple Sclerosis, the Early Journey, with the Multiple Sclerosis Society. • Renal Failure, with four patient charities: the Renal Association, the National Kidney Research Fund, the National Kidney Foundation and the National Kidney Federation. • Dementia, the Early Stages, with the Alzheimer’s Society. • Thalassaemia, with Thalassaemia UK (held in Leeds). • Asthma Research, again with Asthma UK, focusing specifically on patients’ priorities in research. • Prostate Cancer, with the Prostate Cancer Charity and Prostate Cancer Charter for Action. • Eczema, with the National Eczema Society. • Psoriasis, with the Psoriasis Association. • Sleep Apnoea, with the Sleep Apnoea Trust Association. • Hepatitis C, with the Hepatitis C Trust. • Lupus, with Lupus UK. • Parkinson’s disease, with the Cure Parkinson’s Trust • Allergies, with Allergy UK, Allergy Alliance, Asthma UK and the Anaphylaxis Campaign. • Arthritis, with Arthritis Care. • Chronic Fatigue Syndrome / ME, with Action for ME, the ME Association, the Association for Young people with ME, the Tymes Trust and the 25% Group. • MS, with MS Trust • Living with pituitary disease, with the Pituitary Foundation • Vitiligo, with the Vitiligo Society • Injured in service, with Combat Stress, St Dunstan’s, Battle Back, The Army Benevolent Fund and Soldiers, Sailors, Airmen and Families Association • Ovarian Cancer, with Ovarian Cancer Action • Meningitis, with Meningitis Trust • Living with colostomy, with the Colostomy Association • Prostate disease, The Prostate Centre and Prostate UK • Tinnitus, with RNID, Ménière's Society and the British Tinnitus Association • Brain tumours, with Brain Tumour UK The audience at a ‘Medicine and Me’ meeting will typically comprise patients, their families, carers and advocates, representing about 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other types of health professionals involved in the treatment and care of patients. The format of the meetings we have found to be successful is an afternoon session that includes a short keynote review talk from a leading researcher, followed by 3-4 paired presentations. In each of these, patients speak first, about some aspects of the condition as it affects them. This may be either a presentation by a single patient, speaking from the podium, or a series of edited video clips of interviews with several patients. Both formats have proved to be successful. The patient presentation is followed by an expert clinician, who addresses the issues raised by the patient(s) concerning treatment and research. Each speaker is restricted to 10-15 minutes, leaving time for questions, and the afternoon concludes with an extended panel discussion involving all the speakers and the audience. With the interactive facilities available in the lecture theatre at the RSM, we have found that it is possible for useful discussion to take place even with large audiences. These discussions have often continued for at least an hour. We request feedback from all our meetings, and evaluation forms specifically designed for the ‘Medicine and Me’ meetings are used. There have usually been high rates of return of evaluation forms, which have shown excellent speaker scores together with appreciative and very positive comments about the meetings, often including requests for further meetings. The events have proved to be popular both with patients and their families and carers, and with the patient support groups / research charities. ‘Medicine and Me’ meetings are seen as being complementary to other events organised by the support groups. Future ‘Medicine and Me’ meetings will continue to examine common diseases as well as less common chronic conditions which have a major impact on health. These conferences now form an important part of the Society’s programme of public engagement. April 2011 |