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Constitution and policy:-
- 1 - The Charity was constituted by a Deed of Trust dated 10 August 1983 (Registered Charity No. 288064) with the object of providing funds for research into the cause, treatment, cure and prevention of Reye's Syndrome and Reye-like illnesses, to inform both the public and medical communities and to provide support for parents whose children have suffered from these diseases.
- 2 - The National Reye's Syndrome Foundation of the United Kingdom was founded because there was a need in Great Britain for research into Reye's syndrome - principally a children's disease that affects the liver and brain.
The Foundation has endeavoured to make the general public aware of the disease and the need for early diagnosis. The Foundation also provides support for parents whose children have suffered from Reye's syndrome. The administration of the Charity is undertaken entirely voluntarily.
Notable achievements:-
Informing the public and medical communities:
The Foundation's most recent venture was to fund a Workshop in March 2002 at which invited experts considered various aspects of RS and Reye-like illnesses with a view to developing national guidelines on the diagnosis and management of these conditions. The proceedings of this Workshop will be available later in the year on this website. Brief details about this Workshop are also given in the Trustees Report for the year to 30 September 2002.
In the 1980's the Foundation produced a poster, which was circulated to all hospital paediatric departments throughout the country. This aimed to heighten diagnostic awareness of RS and to outline initial investigation and treatment. The Foundation also produced leaflets "Your child and Reye's Syndrome- the facts the dangers" and "After Reye's Syndrome" designed to educate and inform parents, the public and the professional bodies. These are available from the Honorary Administrator. (How to contact us).
Research:
The principal aim of the charity is to provide funds for research into the cause, treatment, cure and prevention of RS and Reye-like illnesses. For example, the Foundation funded research undertaken at The Queen's University of Belfast culminating in the publication of a paper entitled "The mechanism of inhibition of BETA-oxidation by aspirin metabolites in skin fibroblasts from Reye's syndrome patients".
In 1998 the Foundation part-funded a feasibility study of a surveillance scheme to monitor the effectiveness of tandem mass spectrometry screening for inherited metabolic disorders (IMDs).
Arising directly from the Workshop (see previous sub-heading) the Foundation is funding a project costing £96,000 at the University of Nottingham undertaken by Professor Terence Stephenson. The project will result in the production of a national clinical guideline on the management of children with an altered conscious level. Reye’s syndrome and Reye-like illnesses often present with altered conscious level, whether that be confusion, drowsiness or in a deep coma. As Reye-like illnesses are very rare, many health professionals will not have seen such conditions and may not think to look for them. A guideline which gives advice on what tests to perform and what treatments to start will improve the ability of doctors and nurses to manage altered consciousness in children, including Reye’s syndrome and Reye-like illnesses, appropriately.
Producing a national clinical guideline is a major undertaking. Doctors and nurses who have managed clinical problems one way will not change their practice just because a new guideline has been published. The guideline has to have been produced to very high standards for it to be accepted nationally. To produce a national clinical guideline to high standards many different professionals need to be involved to discuss the key clinical questions which need answers and guidance. The guidance which is given needs to be based on the best evidence from clinical trials and research. To find the evidence many hundreds of journals and many thousands of scientific papers need to be searched to help answer the key clinical questions. Once the evidence has been found a recommendation can be made based on what the evidence suggests is the right thing to do.
Often, there is no evidence available to answer each specific clinical question. At this point expert opinion is required to help agree on further recommendations, which will help to bridge the gaps between the evidence-based recommendations. Here again, this process has to be thorough and incorporate as many views as possible from differing specialities, so that these recommendations are acceptable to all those involved in managing children with altered conscious level.
Once the guideline has been produced with all the recommendations agreed upon, it will be sent to the Royal College of Paediatrics and Child Health and other professional bodies so that they can validate the guideline. Hopefully, because the guideline is being developed in this robust way, these regulatory bodies will endorse the guideline and recommend that their members follow its advice.
Each hospital, each doctor and each nurse will then have access to the guideline so they may use the recommended management plans on the children they next encounter with altered consciousness. This will help standardize practice across the nation and improve the recognition and treatment of the rarer conditions such as Reye’s syndrome/Reye-like illnesses.
The guideline will be published in 2005.
To review this process in more detail, please visit www.nottingham.ac.uk/paediatric-guideline and feel free to comment on the guideline and what you feel should be addressed. To see the previous national guidelines produced by Professor Stephenson’s team visit www.pier.shef.ac.uk (filed under “Children Nationwide” in the Guidelines by organisation menu).
Surveillance:
The Foundation has funded Surveillance of Reye's Syndrome since 1995 (Trustees' Report Extracts). Surveillance of Reye's syndrome via the British Paediatric Surveillance Unit www.bpsu.inopsu.com/Complete.htm#Reyes of the Royal College of Paediatrics and Child Health www.rcpch.ac.uk ceased in April 2001.
Fundraising:
Members of the Foundation have played significant role in providing funds for the Charity to enable it to carry on its work. An example of such activity is shown in the picture below.
 Please continue to support the work of the Charity. All donations will be gratefully acknowledged.
Organisational Structure of the Foundation:
Trustees:
Julian R R Ebsworth MA (Cantab) (Chairman)
Ian Brown
Gordon H Denney, FCA (Hon Administrator & Treasurer)
R David Fulford
Dr John F T Glasgow, BSc, MD, FRCPCH, FRCP, FRCP(I), FFAEM, DCH (Chairman Medical and Scientific Advisory Board)
Medical and Scientific Advisory Board:
Dr John F T Glasgow, BSc, MD, FRCPCH, FRCP, FRCP(I), FFAEM, DCH (Chairman)
Prof A Aynsley-Green, MA, DPhil, FRCPCH, FRCP, FRCP (Edin), FMed Sci
Dr Martin H Bellman, MD, FRCPCH, FRCP, DCH
Dr Jim R Bonham, BSc, MSc, PhD, FRCPath
Dr Mike Champion .BSc, MRCP, MRCPCH
Prof Dame Barbara Clayton, DBE, MD, PhD, FRCP, FRCPE, FRCPath, FRCPI
Prof Frank A Fairweather, QHP, BSc, FRCPath, FIBiol, FFOM (Hon)
Dr Susan Hall, MSc, FRCP, FFPHM, FRCPCH
Dr Colin R Kennedy, MD, FRCPCH, FRCP
Mr Charles Pascall, FRCS
Prof M Stuart Tanner, MSc, FRCPCH, FRCP
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