Making an Impact on the First Ever International Paget’s Awareness Day!

The Paget’s Association declared the 11th January to be International Paget’s Awareness Day to raise awareness of Paget’s disease, both throughout the UK and internationally. We would like to thank everyone who got involved. Scroll down for details of events that took place on the day, a competition and photos. We will be adding to this as information comes in!

Why did we hold a Paget's Awareness Day?

We need to find those who don’t reach medical attention!  Although there has been progress in alleviating the effects of Paget’s disease, much more remains to be done. The Paget’s Association believes that correct diagnosis is the key, as the condition often goes undetected until complications such as fracture, deafness and bone deformity have already occurred. In order to ensure that Paget’s is diagnosed and managed well, we showcased the new clinical Paget's Guideline, which has now been accepted for publication. Members, volunteers, Trustees, employees and many of the staff from the Centres of Excellence, got involved to make the day a success. The mission? To raise awareness of Paget’s disease and increase the number of cases that are satisfactorily diagnosed and referred to a specialist. Several events took place on the day.

Great Yarmouth

The main event was held at the James Paget University Hospital in Great Yarmouth.

YOU CAN NOW WATCH A RECORDING OF THE WEBINAR by following this link.

First Live Online Broadcast by the Paget’s Association - We know that many people from across the world watched in real time. If you were one of those watching, we would very much value your feedback.  Chaired by our outgoing Chairman, Professor Roger Francis, the meeting was the first to be broadcast live online, by the Paget’s Association. Professor Francis said, ‘The Paget’s Awareness Day will hopefully raise the profile of Paget’s Disease of Bone and highlight the work of the Paget’s Association. By broadcasting the meeting as a webinar, we will reach a wider audience across the UK and beyond.’ People also had the opportunity to have their questions about Paget’s disease, answered by the experts. These included questions from Australia and America, as well as the UK.

Support from Brandon Lewis MP

   Brandon Lewis, the Member of Parliament for Great Yarmouth and Chairman of the Conservative Party, also gave his support for the day with a written message and a video message of support. He said, “I am delighted to support the first ever International Paget’s Awareness Day. The 11th January 2019 marks the 205th anniversary of the birth of James Paget, who was of course born and raised in Great Yarmouth, where our local hospital is named after him. Great Yarmouth is rightly proud of this famous son. Sir James Paget was one of the most respected surgeons of his time, regarded as the ‘Father of British Pathology’ and treating significant figures including Queen Victoria and the Prince of Wales. The Paget’s Association does a fantastic job providing information about treatment and diagnosis, giving help and advice, providing newsletters and support for those with Paget's disease of Bone. It is vital that we raise awareness of this disease, which affects the bones normal metabolism and can cause severe pain, fractures and disability. I’d like to thank everyone for taking part in the Paget’s Awareness Day for all that you do to ensure correct diagnosis and treatment for this disease and to wish you all the best for a successful day.”

New Guideline Accepted for Publication

The webinar was a fantastic opportunity to showcase the new clinical Guideline for the ‘Diagnosis and Management of Paget’s Disease of Bone in Adults’. This was commissioned by the Paget’s Association and has been accepted for publication in the Journal of Bone and Mineral Research. We expect it to be published in February.  So that the document is freely available to everyone, the Paget’s Association has provided funds for the document to be made publicly available.  Details will be on our website as soon as we have them. The Association is aware that assisting patients to obtain a correct diagnosis is key to supporting those affected by Paget’s disease, as the condition often goes undetected until complications such as fracture, deafness and bone deformity, have already occurred.  The new Guideline will help clinicians diagnose the condition correctly, facilitate effective management and increase awareness amongst health professionals. We were pleased to have Professor Mike Stone, a Trustee of the Association, in attendance to provide an overview of Paget’s disease and of the new Guideline.

A 205th Birthday Celebration

A retired surgeon from the James Paget NHS Foundation Trust, Mr Hugh Sturzaker MBE, spoke eloquently about the life of Sir James Paget, who was born 205 years ago, on the 11th January 1814, in a house in South Quay, Great Yarmouth. Today, a blue plaque marks his birthplace. Sir James Paget was the first to describe several conditions, including Paget’s Disease of Bone. He was surgeon to Queen Victoria, and indeed, one of the most respected surgeons and pathologists of his time. Sir James knew the importance of bringing science into medical practice and was passionate about excellent patient care. The Paget’s Association is proud to have Sir James Paget’s great, great grandson, Sir Henry Paget, as a Patron and was pleased that he could attend the event, together with his wife, Margrete. In an interview for the Paget’s Awareness Day, he said, ‘We must relieve the suffering of those who are not currently receiving the help they need’. Whilst at the hospital, we were also able to visit the library which contains exhibits regarding Sir James Paget. These are cared for by the library manager, Peter Ransome. A bust of Sir James Paget takes pride of place and this was placed in the meeting room for the duration of our event. All the staff that we met, spoke with pride of Great Yarmouth’s association with Sir James Paget.

 Keith’s Experience

The patient’s perspective was provided by Trustee, Keith Simpson, who shared his personal experience of Paget’s disease. Paget’s disease caused a traumatic fracture of his leg and whilst this was successfully repaired, he later spent many years in pain, searching for a surgeon who would replace his hip. Through the Paget’s Association Keith was able to find the help he needed and, following successful surgery, he decided to help others by becoming a Trustee of the Association. Keith said, ‘Until I found relief, Paget’s caused me tremendous pain and suffering.  It is imperative that we help those who haven’t yet found the answers and treatment that they so desperately need.

International Reach and a New Research Initiative

Our Specialist Paget’s Nurse, Diana Wilkinson, also gave a presentation and commented, ‘The first Paget’s Awareness Day and this webinar are fantastic ways of letting the world know that the Paget’s Association means business, in the fight against Paget’s disease. Rather than making it a national day we decided to aim higher and so we made it an international event’. Indeed, we know those watching the webinar online included people from Canada, America, South Korea and Australia. In addition, Diana informed the audience about the Association’s latest initiative, a Summer Vacation Research Scholarship, which will encourage medical, science, nursing and allied health professional students to develop an interest in researching Paget’s Disease.

Award Ceremony in Manchester Dr Stephen Tuck, our Vice-Chairman, attended a Paget’s Information Meeting at Manchester Royal Infirmary to present a Centre of Excellence Award to Professor Peter Selby and his team. Our Office Manager, Sue Clegg, was also in attendance. On behalf of the Paget’s Association, Dr Tuck congratulated the team and wished them every success in the future. We will publish further details about the event in our next newsletter.

Information Meeting in Edinburgh Our new Chairman, Professor Stuart Ralston, held a Paget’s Information Event at the Western General Hospital in Edinburgh. Patients and staff were given the opportunity to hear short presentations, by the research team, regarding some of the clinical trials and laboratory research that is taking place from the Institute of Genetics and Molecular Medicine.

Paget’s Meeting at Salford Royal Hospital An event was also held for patients and staff at Salford Royal Hospital, where Professor Terence O’Neill arranged the event to mark the first International Paget’s Awareness Day. We plan to publish details in our next Paget’s newsletter. 

Staff at Hospitals and Universities show their Support On Paget’s Day, nurses in Sheffield produced information for a display and ensured that our leaflets were available to those visiting the hospital. The staff changed their usual uniform for ‘scrubs’ for the day so they could be in blue and green. Sister, Lisa Williams, said, ‘Whist not all staff were available for the photograph, the whole team from the Metabolic Bone Centre supported the day. Researchers at the University of Nottingham held a Blue and Green Day to show their support for the initiative. Professor Rob Layfield said, “On the Paget’s Awareness Day we themed the laboratory and ourselves, in blue and green. The hats and scarves came in very handy as the heating system currently isn’t working properly! It was excellent to watch the webinar, which was very professional and informative. It inspired us in our research aims of trying to make a difference for those affected by Paget’s disease”. On Paget’s Day at the Royal National Orthopaedic Hospital in Stanmore, Dr Richard Keen discussed Paget’s disease and Dr Bubbear reviewed the new Guideline with the Rheumatology team, at their lunchtime education meeting. Leaflets were made available to all those visiting the hospital in Southampton and helped to raise awareness online by placing many very interesting posts on Twitter, some of which showed x-rays of Paget’s disease. At the Royal Liverpool University Hospital, the Paget’s Association’s press release and leaflets were made available in the clinic areas. An information stand, manned by volunteers and arranged by Dr Zoe Paskins, took place in Stoke on Trent. We are grateful to Dr Prashanth Patel who ensured that there was a display of our leaflets at Leicester Royal Infirmary on Paget’s Awareness Day.

Did you wear Blue and Green on Paget's Day? One way we asked for support was to ask people to wear blue and green, the colours of the Paget’s Association’s logo. Do send us your photos.

Enter our Photo Competition You could win a £25 shopping voucher plus a Paget’s Goody Bag by entering our Paget’s Day Photograph Competition. The theme is blue and green, which means that we want you to take a photo of anything, as long as the blue and green theme is adhered to. You could, for example, take a photo of a country scene with blue sky and rolling green hills, or blue flowers in a green vase, or a photo of yourself and your family wearing blue and green. The possibilities are endless! Send your photograph by email or post using the details below. The closing date is the 30th January 2019.Email your entry to - [email protected] Alternatively, post to Paget’s Day Competition, The Paget’s Association, Suite 5, Moorfield House, Moorside Road, Swinton, Manchester, M27 0EW. 

Competition Rules. The competition is for members of the Paget’s Association only. The winner will be selected at random from the correct entries. The Paget’s Association’s decision is final. Winners will be notified within one month after the competition closing date. The prize is non-negotiable, non-transferable and there is no cash alternative. Only one entry per household. The competition is only open to UK residents. The competition is not open to employees or their immediate family. The competition is not open to trustees of the Paget’s Association or their immediate family. The Paget’s Association cannot accept responsibility if emails or hard copies are not received. Incorrectly completed entries will be disqualified. Entries received after the specified closing date will not be accepted. When you enter the competition, you agree to the above rules.

Many of you have been knitting in blue and green for us - thank you! There will be photos in our newsletter. 

ADD THE 11TH JANUARY, TO YOUR CALENDAR EVERY YEAR!