Consultation update and invitation to further discussions.
Latest news : 7 August 2019
Moorfields and its partners, the UCL Institute of Ophthalmology and Moorfields Eye Charity, are proposing to build a new centre bringing together excellent eye care, with ground-breaking research and education. The preferred location is a site that has become available at St Pancras Hospital, just north of King’s Cross and StPancras stations in central London.
The proposal, called Oriel, is the subject of a public consultation from 24 May to 16 September 2019. For more information, please visit oriel-london.org.uk.
This is the original message received from Moorfields in July:
As important members of the Moorfields community, you will know that our hospital at City Road has been at the forefront of providing the highest quality eye care for over a century.
The way we provide eye care now is very different but our surroundings have remained largely the same. We want to continue our legacy of providing the cutting-edge treatment and care you need, but there is very little space to expand and develop new services in our current hospital.
By 2026, we want to build a brand new centre on land that has become available at the St Pancras Hospital site, just north of King’s Cross and St Pancras stations. Our aim is to create a world-leading centre for the prevention, diagnosis and treatment of eye disease by bringing together excellent eye care, ground breaking research and the world’s best education in ophthalmology – but we cannot do this alone.
A public consultation on our proposal is now open until 16 September 2019 and we want you to get involved. Whether you are a regular patient, a carer or a member of staff, we need you to tell us what you think of our plans and how they could affect you.
You can find out more about the proposal at www.oriel-london.org.uk and you can share your views by completing the survey available here. Alternatively, you can send an email to email@example.com or phone the team on 020 7521 4684 to request these materials in a different format.
We look forward to hearing your views on this next stage in our development.
Some of you will remember that the KC Group donated 4K to the Moorfields team, headed by Mr Stephen Tuft, researching the genetics of KC to enable them to do some additional analysis of the data. You may also have read the summary of the talk given by Professor Alison Hardcastle at our AGM earlier this year in our latest newsletter. Her talk gave an outline of the results of that analysis. A scientific paper giving detailed results has now been published.
In sending us the above link, Stephen Tuft wrote “The results of the work have given us some clues as to the genetic causes of keratoconus. In addition, this work will complement a very large study into the genetic basis of keratoconus that we hope to submit for publication in the next few weeks. The Keratoconus Group has helped us recruit for this study, and we are grateful for that.”
He also asked us to thank our members and tell them that their support at an early stage of this work helped move the research forward at an important time.
Quite a few of our members took part in the very large study that Mr Tuft mentions, so we will obviously let you know as soon as we have details of that publication.
Researchers at the University of Southampton and clinical partners across England are leading a new project aimed at helping to tackle a shortfall in the number of people willing to consent to eye donation.
In partnership with NHS Blood and Transplant (NHSBT) service – with £720,000 funding from the National Institute for Health Research (NIHR), researchers at the University will investigate the viability of approaching patients in specialist palliative care settings or hospices, who may be willing to donate their eyes after they die.
Eye tissue is needed to treat a variety of eye conditions and to aid research into new sight saving therapies. However, currently there is a lack of eye tissue available to combat eye diseases which can lead to sight loss. NHS Blood and Transplant eye banks are around 20 percent below the level needed to supply hospitals. In April 2019 there were 279 corneas available, with a store of 350 needed at any one time to satisfy demand for the treatment of patients.
Lead researcher, Dr Tracy Long-Sutehall comments: “Understandably, people can hold very strong feelings about donating their eyes or those of a loved one – from concerns about disfigurement to cultural or religious considerations.
“Most people who die in the UK may be eligible to donate their eyes, but people are unaware that they could potentially donate, and we know that health care professionals can be reluctant to start conversations about the subject with patients or relatives for fear of causing upset or offence. Our study will tell us if donations could be increased if carefully managed approaches are made to patients and their families during hospice and palliative care.”
The researchers will review the medical records of 1,200 deceased patients who died in three specialist palliative care settings and three hospice care settings to assess how many of these patients would have been eligible to become an eye donor and how many were referred to NHS Tissue and Eye Services for assessment.
Uniquely, current patients receiving care in palliative and hospice care settings will be asked to share their views about eye donation and their thoughts on discussing the issue of donation as part of end of life care planning. Carers and health care professionals will also be interviewed so that their concerns and views are gained.
The study will underpin future planning by NHSBT as they develop strategies to increase eye and tissue donation and develop an intervention that will ensure that the potential to donate is part of care planning conversations with patients and their family members across the palliative and hospice care sector.
Helen Gillan, General Manager for Tissue and Eye Services at NHS Blood and Transplant, said: “Our eye banks are currently well below the level we need to be able to restore the sight of everyone who could benefit from a corneal transplant. We are delighted to be working with the University of Southampton on this study which could help to increase the number of corneas donated, providing hope for many people waiting for a transplant.
“We need more donors who can help give the gift of sight. Through approaching more families and patients in hospices and palliative care, we hope to start having conversations around cornea donation.”
The Sight Advice FAQ answers questions about living with sight loss, eye health or being newly diagnosed with a sight condition. This includes those who are supporting people through their sight loss journey, including parents, partners, carers and friends.
It contains a search box and menu to find what you’re looking for.The site has been built by RNIB, Guide Dogs, Visionary, VICTA and Fight for Sight, working together in partnership. Click here to visit the site
Fight for Sight is working to raise awareness of the importance of eye donations after research has found that eyes are the organ that people would be the least likely to donate following their death.
The eye research charity has highlighted that there is currently a shortfall in corneas that can be used for transplant, with statistics released by NHS Blood and Transplant this month reporting that there are currently 279 corneas in eye banks, despite the target being to have around 350 at all times.
Our well attended, AGM was held on 23rd March 2019.
Three new committee members were appointed namely, Batcho Notay, Caroline Condillac and Jacqui Thomas. Moira O’Brien resigned for health reasons. The meeting paid tribute to Moira who has been a supporter of the KC group since its inception. Click here to see a full list of officials.
The meeting was followed by a fascinating talk by Alison Hardcastle, Professor of Molecular Genetics at the Institute of Ophthalmology Faculty of Brain Sciences, who spoke about the Moorfields genetic study.
To read the research summary published by UCL INSTITUTE OF OPHTHALMOLOGY- click here
This is an interesting article published by the National Keratoconus Foundation in America:
For many years, it’s been long stated that keratoconus occurs in one person in every 2,000. In an article published in March 2017, the American Journal of Ophthalmology, Dr. Daniel Godefrooij, from the University of Utrecht, refines our understanding of incidence and prevalence of KC(2).
The analysis that KC occurs in 1 in every 2,000 people was derived from a patient registry that was initiated in part by NKCF, over the span of fifty years from the 1930s to the 1980s. Some early supporters of NKCF likely participated in the voluntary survey. Read More…
We had another great 14 mile walk through London. Not as green as last year but architectural interesting and physically challenging, walking to Islington, Camden, then looping past Hampstead Heath, up to Belzise Park and Primrose Hill. The second half took us around regents Park then through Hyde Park and St Jameses Park. We finished with refreshments in the old County Hall building.
Join us in 2020
Registration opens September 2019. However if you would like to pre register please do give Moorfields a call on 020 7521 4614 or 020 7566 2565 during office hours of 09.00-17.00hrs or alternatively email firstname.lastname@example.org.