History of Down’s Heart Group?
Down’s Heart Group was founded in 1988 by Linda Walsh with the support of a group of parents, all of whom felt there was a lack of information specifically relating to congenital heart defects associated with Down’s Syndrome.
It held its Inaugural General Meeting on 3rd November 1990 in Leicester and became a registered charity on 29th May 1992. Initially it acted as a support group mainly putting families in touch with each other, but by 1999 it had started producing information sheets for families and also making them available on its new website.
Prior to 2008, only members of the charity were eligible to serve on the Executive Committee, a member being a direct relative of someone with Down’s Syndrome and a heart condition. At the AGM in November that year, an amendment to the Constitution was adopted that allows for up to 20% of the Committee to be made up by individuals with an interest in the work of the group but who do not satisfy the criteria for full membership. This has allowed us to benefit from a wider range of skills and experience without losing the ethos of the organisation being run by people with personal experience of the issues families face.
The aim of the website is to provide non-medical people in the UK with good quality information about the heart conditions associated with Down’s Syndrome and other related topics. All our information publications have been written by Down's Heart Group from a parent's perspective and as well as being evidence based, ALL items of a medical nature have been checked for accuracy by professionals in the appropriate medical field.
We review Down’s Syndrome, congenital heart disease and other related websites when producing our publications, (links to many of these can be found in the ‘Links’ directory included on this website), but UK sites are the primary source of evidence as we know that there are some differences in practice and treatment in other countries. Despite this, people from outside the UK may also find Down’s Heart Group a useful resource.
This information is provided to assist with understanding only and should never be used as a substitute for professional medical opinion.
Down’s Heart Group makes no charges for membership or using the website and receives no funding from external sources, for example drug companies, which might influence its publications. All costs are funded from donations, grants and fundraising undertaken by the charity and its members.
Down’s Heart Group is not a NHS organisation.
There are some advertising banners on the website which link to sites providing various means of fundraising for the charity. Adverts are provided by external sources and are not endorsed by Down’s Heart Group. All revenue goes to Down’s Heart Group.
Down’s Heart Group has received accreditation from The Information Standard and accepts its aims to improve the quality of health related information provided to the public.
All Down's Heart Group content that has been produced in accordance with the scheme is marked with the Information Standard logo. Any Down's Heart Group content that is not marked with the logo is not included in the scope of the Standard or has not yet been reviewed following accreditation.
Authoring of publications
Publications in hard copy or on the Down’s Heart Group website are written to provide accurate and up to date information content reflecting reliable research evidence, guidance and best clinical practice. Where there are differences of opinion, for example, about the best methods of treatment, the publication will endeavour to reflect all opinions where there is reliable research evidence or recognised clinical practice.
Down’s Heart Group publications are written my Down’s Heart Group staff and must comply with various policies which control their style and content as well as ensuring that they are free from any influence to promote particular research or products. They are reviewed every two or three years as a matter of course. However, the default re-issue period of any article may be changed, where there is a significant change in the understanding of a condition or the way in which it is managed. In this case, Down’s Heart Group is likely to update and re-issue relevant publications sooner than scheduled.
We collect and monitor feedback from users and health professionals concerning the content of our publications and aim to respond to any comments questioning the accuracy of information within 10 days. If investigation proves that changes to publications are of urgent clinical importance we will undertake these immediately, otherwise all feedback will be routinely documented and considered when the corresponding publication is next reviewed.
Publication Creation and Quality Control Process
Our publication process includes proofreading by a designated member of staff for typographic or grammatical errors, consistency of terminology, adherence to house style, etc. as well as review by a medical professional qualified and working in the relevant field. Professional and patient feedback is taken into account during the initial publication of a document and at subsequent reviews.
A database of references is maintained by the staff responsible for writing publications and these are referred to as they write articles. Reference sources include (but are not restricted to) the following:
- Central Cardiac Audit Database (CCAD)
- NHS Evidence
- National Institute for Health and Clinical Excellence
- British Medical Journal
- The Lancet
- Understanding Intellectual Disability & Health
- Patient UK
- National Down Syndrome Cytogenetic Register
- Down's Syndrome Medical Interest Group
- Great Ormond Street Hospital
- Health Protection Agency
- Clinical Knowledge Summaries
- The Cochrane Collaboration
- Children's Hospital Boston
- The Hospital for Sick Children, Toronto
- Guidelines and Audit Implementation Network (GAIN)
- Scottish Intercollegiate Guidelines Network
We also keep abreast of changes to treatments and guidelines through monitoring the internet using Google Alerts and our links and membership of other organisations such as Children’s Heart Federation and Down Syndrome Medical Interest Group.
Information produced will relate to Down’s Syndrome and / or congenital heart disease and other topics that are commonly associated with these subject areas, where families frequently seek information.
All publications will be of a general advisory nature which provides the reader with basic details that they would find on any approved medical site, written using parent friendly language without the use of jargon. Medical terms may be referred to as appropriate and necessary, but will always have an easily understood description with them.
Information will always be produced with reference to current medical sources and DHG medical advisors. In relation to topics where there may be variance in documentary evidence and specific advice from advisors, (such as organ transplantation and changes in the treatment of infective endocarditis), DHG will seek to establish the majority opinion and either reflect this in its publications, or where this proves impossible, to ensure that the different opinions are all included.
The purpose of any new document will be to provide written information for families (ie. non-medical professionals) to provide them with a general understanding of the subject matter in order that they are better prepared to seek advice and ask questions of the professionals involved in the care of their child. They will provide general background information and not provide any specific advice and may include links to other sources of information as appropriate, but only when these are from known trusted sources and will be accessible for the foreseeable future.
As we carry out review of our publications, we will include links to the appropriate reference sources on a ‘Resourcese’ page on the website under subject headings and make these available in print to anyone who does not have access to the internet.
All publications will be reviewed according to a planned review schedule which requires review of all documents every 2 - 3 years, but where new or updated information needs to be included in a publication, review may take place sooner or more frequently.
Links to the websites of other organisations are included to assist our visitors and inclusion of a site does not constitute endorsement by Down’s Heart Group.
Our policy for links is that they:
- Have relevance to Down’s Syndrome and / or congenital heart disease
- Provide accurate information
- Do not offer personal opinion or experience unless it is clear that is what it is
- Do not seek financial support (other than for a charitable organisation)
- Represent an organisation not an individual (except in exceptional circumstance where we feel that the site of an individual provides valuable and balanced information)
Whilst we make efforts to ensure that all links are up to date and working and that linked sites fulfil this basic policy, we cannot regularly monitor the content of all linked sites and do not accept responsibility for any inappropriate or incorrect content. Anyone with concerns over any site that we have linked to can report them to email@example.com
Reviewed 8th February 2011