College News - November 2008

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RCPE PRESS RELEASE

SCOTTISH DOCTORS TO RECEIVE NEW MEDICAL GUIDANCE, AS LIFE EXPECTANCY IN CHRONICALLY ILL YOUNG PEOPLE INCREASES

Doctors throughout Scotland will today (25 November 2008) be receiving new national clinical guidance aimed at enabling young people to cope more effectively with chronic diseases, including the long-term effects of childhood cancer, as they progress through adolescence and into adulthood.

The new guidance, entitled ‘Think Transition’ [1] has been developed by the Royal College of Physicians of Edinburgh (RCPE) and aims to bridge the gap which can exist between paediatric and adult health care services and to smooth the transition in health care for young people as they become adolescents and start accessing adult services. In addition, it aims to provide new guidance for adult physicians on how best to treat the increasing number of young adults who are surviving serious childhood diseases, including cancer and cystic fibrosis, as a result of developments in medicine, and for whom continuity of follow-up treatment, support and advice is essential.

Why is this guidance needed?

Changing patterns in the survival of chronic childhood disease

Childhood cancer: the five-year survival rate for children with cancer is about 75% and there are now estimated to be over 2500 adult survivors of childhood cancer in Scotland for whom long-term effects of childhood cancer in adulthood include growth impairment, infertility, heart disease and kidney disease.

Cystic fibrosis: life expectancy has improved significantly in recent decades, with an estimated 95% of children with cystic fibrosis surviving their 25th birthday and many living well into their thirties. We are now in the novel situation where there are more adults than children with cystic fibrosis.

The guidance has been heavily informed by the views of young people and reviews and builds on evidence to emerge in the last decade which has found that specially designed services need to be provided for adolescents during this transition period in order to offer them greatest support. Such support is particularly needed at a time when the shift in emphasis on care moves away from being provided by supportive paediatric teams, with whom young people with chronic diseases may have built up a strong rapport, and in familiar surroundings, to accessing services in adult clinics. During this time there is also a shift away from young people having their condition and treatment managed at home by parents or carers to a position where the young person becomes responsible for the self-management of his/her condition.

Against this background, the guidance makes a series of recommendations including –

all hospitals in Scotland should have a transition policy setting down the principles of transition from paediatric to adult health care and should consider the need for a named transition co-ordinator;
transition should not be seen as a single event, such as a simple transfer to adult services, but should be an active process which begins early, is planned and regularly reviewed with the young person;
transition must be age and developmentally appropriate;
the transition process should address not only health problems, illness education and self-management, but also the way these problems affect the young person’s social, psychological, educational and employment needs and opportunities;
young people must be involved in developing their transition programme to enhance their sense of control and independence in their healthcare;
whilst acknowledging that parents too need support through transition, young people should be given the opportunity to be seen without their parents; and
paediatricians and adult physicians should be encouraged to work together to develop new or improved services for young people with chronic illness or disability entering adulthood.

Further recommendations cover areas as diverse as education for young people, patients/carers and health professionals; when to discuss fertility issues with chronically ill young people; and the organisation of transition services in remote and rural areas of Scotland. Detailed disease-specific recommendations are also included for the clinical management of childhood cancer, cystic fibrosis, diabetes and kidney disease during the transition period.

The new guidance is being distributed to every GP, paediatrician and adult physician in Scotland and is available to download from the RCPE website. The guidance builds on earlier draft guidance published for consultation in October 2007 and was informed by the views of approximately 200 doctors, health care professionals and young people who attended a National Open Meeting on this subject at that time. The guidance was developed with the support of a research grant from the Children’s Research Fund.

Prof Chris Kelnar, Chair of the RCPE Transition Medicine Steering Group, said,

“Adolescence can be a difficult time for anyone, but it can be even more difficult for young people with chronic diseases and for whom ongoing treatment is required. Targeted health care provision for young people has historically been poor with a tendency to view this as a simple transfer of responsibility from paediatric to adult clinics and a tendency by the health service to view young people as mini-adults. This is no longer acceptable and we must recognise that adolescents have their own particular difficulties and needs. Similarly, the transition from paediatric to adult clinics must not be seen as a single act, but as an ongoing process which is planned and reviewed and in which young people are fully involved. Only by doing this will we engender the confidence in young people to assume responsibility for the self-management of their conditions in partnership with well-trained, appropriately skilled and empathetic health-care professionals.

“Developments in medicine have also resulted in an increasing number of young people with serious chronic diseases living longer into adulthood. In addition to supporting young people through the transition process, the new guidance will enable adult physicians to better understand the medical needs of young adults with chronic diseases and for whom childhood disease or medical treatment may have given rise to longer-term complications in adulthood.

Cara Doran, Expert Patient Adviser, Cystic Fibrosis Trust, and a contributor to the guidance, said,

"Transition is such a difficult time for young people, as they have so much going on in their lives with school and exams, part-time jobs, thinking of the future, peer groups and social pressures, that dealing with the responsibility of managing their own condition in an adult setting can be very daunting. However, if transition services are organised and structured well over a period of time, everyone involved in the process, especially the young person, should move on to the adult service feeling confident and knowledgeable about who to speak to and what to expect, and take away any fear they may have about the whole process."

Contact: Graeme McAlister on 0131-247-3693 or 07808-939395

ENDS

Notes for Editors

[1] ‘Think Transition: developing the essential link between paediatric and adult care', RCPE, November 2008

Issued: 24 November 2008

SCOT briefing on youth smoking prevention

The RCPE is a member of the Scottish Coalition on Tobacco (SCOT) which has just produced a briefing for MSPs and others on youth smoking prevention measures.

Click here to access a PDF of this briefing

Added 20 November 2008

RCPE UK Consensus Conference on Acute Medicine, November 2008

Consensus statement now available here

Added 17 November 2008

RCPE Press Release

MAJOR PROGRAMME LAUNCHED TO WIDEN PUBLIC ACCESS TO HISTORICAL MEDICAL LIBRARY AND PRESERVE RARE COLLECTION FOR NATION

The Royal College of Physicians of Edinburgh (RCPE) is today (4 November 2008) launching a major public access programme aimed at enabling a wider audience to view and benefit from the rare and historically important books and artefacts contained with its Historic Library Collection, many of which have not previously been on public display. An accompanying financial appeal to enable the RCPE to safeguard the Collection for the nation is also being launched, generously started by over £100,000 in donations from individual RCPE Fellows and Members.

The RCPE Library was established in 1682. It was the first Library in Scotland specifically intended for the study of medicine and is now one of the most important historical medical Libraries in the world. The Library was established when Sir Robert Sibbald, the foremost figure in the creation of the RCPE, donated "three shelfes full of books to the Colledge of Physitians." Since then the Library Collection has grown and now contains over 50,000 books and manuscripts, many of which are extremely rare and highlight key developments in medicine during the last 400 years. These works include William Harvey’s De motu cordis (1628), which provided for the first time an accurate description of the heart’s circulatory actions, James Lind’s Treatise on Scurvy (1753) which documented the first clinical trial – the basis of modern-day evidence-based medicine, and Ibn Sina (Avicenna) (1593) the first medical book printed in Arabic using moveable type. Other works and artefacts of public interest within the Collection include the Ripley Scroll (an alchemical scroll dating back to 1640 which charts the necessary steps to be taken for the acquisition of the Philosopher’s Stone (as made famous by JK Rowling’s Harry Potter series of books)), the medicine chest used to treat Bonnie Prince Charlie (as owned by his personal physician Sir Stuart Thriepland), original newspapers reporting the Burke and Hare bodysnatching trial and original correspondence between leading physicians of their time and notable correspondents including Benjamin Franklin, one of the Founding Fathers of the USA.

While the Library Collection has principally been maintained over the centuries for the educational benefit of RCPE Fellows and Members, the RCPE has become aware of the increasing interest in accessing this Collection from a wider audience and also of the cultural importance of preserving and safeguarding this Collection for the nation. In response to this situation the RCPE is launching the Sibbald Library Project. The project, bearing the name of the Library’s founder, will feature a range of public access activities over the coming months and years. Planned activities include –

Library exhibitions (print and online) telling the story of Scottish medicine, as illustrated by books from the Collection
interpretative events (aimed at schoolchildren and others)
lectures (within the RCPE and as part of a range of external events)
Edinburgh Science Festival events
a Jacobean pharmacy website based on Bonnie Prince Charlie’s physician’s medicine chest

Recognising the importance of the Collection not only to the RCPE, but to the nation, and also the increasing costs of conserving and curating such a Historic Collection, the RCPE is also launching a fundraising appeal linked to the Sibbald Library Project. The public appeal has been started with over £108,000 in donations from RCPE Fellows and Members and donations will be sought from the public and commercial sectors in addition to any members of the public interested in contributing to this project. Online Donations can be made by visiting the RCPE website at www.rcpe.ac.uk.

A number of highlights from the Collection of interest to the public will be exhibited in the Library to coincide with the launch of the Sibbald Library Project. Visitors interested in viewing the Collection can do so by appointment between 10.00am and 4.00pm Monday-Friday (tel. 0131-247-3623)

Prof Neil Douglas, President of the RCPE, said,

“For 326 years the RCPE has been the proud custodian of this important Collection containing many extremely rare medical works of historical importance which are likely to be of great interest to the public in addition to those working in medicine. It may not be widely recognised quite how influential Scottish medicine was in influencing the development of international medical practice. This rich tradition of Scottish medicine continues to this day, with many Scottish doctors and researchers continuing to influence international practice in their fields both individually and through the RCPE. The Sibbald Library project will tell the story of Scottish medicine through our Collection and will provide access to many historical texts and artefacts which have not previously been on public display. ”

“While it is a great privilege for the RCPE to oversee this Collection, the costs of conserving and curating a historic collection of this nature are both considerable and increasing. Recognising the cultural and national importance of the Collection, we have therefore decided to launch an appeal to help preserve and safeguard these works and artefacts for the nation. This appeal has generously been started by over £100,000 in donations from our Fellows and Members and over the coming months we will be approaching others to contribute to this important appeal.”

Contact: Graeme McAlister on 0131-247-3693 or 07808-939395