Thyroid Eye Disease in the 21st Century – Newcastle upon Tyne

Friday 16 / Saturday 17 May 2014

Newcastle upon Tyne – a centre of excellence for thyroid eye disease (TED) – hosted a two-day event in May that brought together leading European and British experts on TED. The event provided a unique opportunity for patients with TED, their families and carers, and members of the public to meet with the experts to find out about the latest advances and together be involved in discussions about the priorities for future research into TED. Medical students, consultant endocrinologists and ophthalmologists, sixth formers interested in a career in medicine, nurse specialists, optometrists and scientists were also invited to take part. Six patient representatives with TED were involved, including Janis Hickey and Peter Foley from the British Thyroid Foundation (BTF), Gillian Barron and Sue Devine from The Thyroid Eye Disease Charitable Trust (TEDct), Sian Gray – a GP, and Peter Howe, who had been treated in Newcastle for TED. It was particularly appreciated that two Thyroid Federation International (TFI) members made the journey to be involed in the event: Beate Bartès, Founder/Director of Vivre sans Thyroïde, France, and Dr Nancy Hord Patterson, who developed TED in 1987 and is founder of The Graves' Disease Foundation in the USA.

On day one students heard talks explaining endocrinology presented by experts in the field. They were then joined by patients and the public. A welcome address by Sir Leonard Fenwick, Chief Executive, Newcastle upon Tyne Hospitals NHS Foundation Trust preceded a presentation by Dr Petros Perros, the main organiser of the event, about thyroid eye disease. Four fascinating talks about unmet needs of patients with thyroid eye disease followed in which the patient representatives talked about the struggles they had faced and highlighted the improvements needed:

 

• Gillian Barron – My journey from developing an overactive thyroid to living with TED
• Sue Devine – Double vision as an early symptom of TED
• Sian Gray – GPs get TED too!
• Peter Foley – Feedback as a BTF telephone contact for TED

This was followed by a lively discussion involving medical professionals and patients in the audience. Medical professionals acknowledged patients' contributions to the success of the event and expressed concern over many aspects of information shared by patients.

The event was an opportunity for TEAMeD (Thyroid Eye Disease Amsterdam Implementation Group UK), of which BTF and TEDct are members, to distribute its Executive Summary Report, highlighting the work it has undertaken on TED since 2010 (see our TEAMeD page). One aspect of TEAMeD's work is involvement in discussions about Commissioning of Specialised Services for TED. A session on Commissioning took place for medical professionals, chaired by Professor Geoffrey E Rose, BTF Trustee, in which the challenges of commissioning were presented and discussed. TEAMeD members gave presentations, Professor Colin Dayan – '"Critical mass makes best service" – how many tertiary care centres should there be?', Dr Petros Perros – 'Is there any point in Combined Eye/Endocrine clinics when local physicians/eye doctors choose to ignore advice?' and Janis Hickey – 'Would patients realistically prefer local care (with its convenience) or tertiary care (with its greater experience)?'.

Day two comprised a seminar 'Of Eyes, Mice and Dice' sponsored by the Society for Endocrinology in which presentations took place from leading UK and European researchers on recent advances in: pathogenesis of TED; disease assessment; therapeutics; and, epidemiology, psychology and health economics, providing an insight into the fascinating studies that are taking place.

On both days break-out sessions took place. In 2012 priorities for TED research had been set in the Sight Loss and Vision Priority Setting Partnership, in which Janis Hickey, Peter Foley and Mr Dan Ezra, Consultant ophthalmic and oculoplastic surgeon at Moorfields Eye Hospital and member of TEAMeD had participated. These priorities were discussed in a breakout session on day one, the remit being to translate the priorities into specific research questions.

On day two the break-out sessions involved translating the research questions formulated on the previous day into study designs.

The meeting was a joint venture between the European Group on Graves' Orbitopathy (EUGOGO) and the Thyroid Eye Disease Amsterdam Declaration Implementation Group UK (TEAMeD UK). The patient and public engagement component on the 16th May attracted 140 attenders of whom 54 were patients and public. The attendance on the 17th May was 132 and included delegates from a wide range of backgrounds (23 basic scientists, 78 consultants, 29 trainees and 8 patient representatives, managers, health service researchers, specialist nurses, orthoptists, psychologists, medical physicists), from 3 continents and 13 countries. One of the outcomes was the formulation of 6 major potential study proposals for basic and clinical research in this field, some of which will hopefully be taken further. There was a great sense of teamwork throughout the meeting and a desire for patients and professionals to build on the Newcastle experience and continue to work together. Feedback about the event has been positive with participants saying how helpful they had found the sharing of information to be.

In his closing remarks, Dr Perros thanked in particular the patient representatives for attending and said their involvement had greatly enhanced the quality of discussions.

Janis Hickey, Founder of the British Thyroid Foundation and a member of the event organising committee:

'We have Dr Perros to thank for his vision that patients with ted can make a positive contribution to such events. Working together with medical professionals and researchers to take matters forward and bring about improvements is a big step in the right direction. We are very grateful to Dr Perros for including us'.

Petros Perros, Consultant Endocrinologist, Newcastle upon Tyne; President European Group on Graves' Orbitopathy; Member of TEAMeD:

'Barriers between health professionals and patients have always existed. Sometimes unfortunately they become impenetrable and a source of discontent, or even turn into a battleground. In most cases the culprit is poor communication.  The optimistically predisposed will highlight a clear trend for more patient engagement, shared decision-making encapsulated in the "no decision about me without me" motto, championed by the British National Health Service recently. However, beyond the rhetoric and political correctness, good examples of this philosophy are hard to come by.

'The event in May 2014 in Newcastle was rather different from other meetings, because it set out to challenge the sceptics about the usefulness of engaging patients, their families and the public as equal partners. The outcome was the formulation of three proposals for clinical studies, an important foundation on which applications for funding can be built. At a personal level, the highlight was simply the presence of patients and their families in the proceedings, which inspired and motivated the audience. May 2014 was a landmark when a wall between patients with thyroid eye disease and professionals most emphatically came tumbling down, right here in Newcastle'.