Are you aged between 16 and 25? Did you contract encephalitis before you were 16?

Trust-Ed is looking into setting up a new school specifically for children who have suffered acquired brain injury, and would very much appreciate your help with answers to the following questions. The information you provided will purely be used for purposes of advising the charity. Please do not make any mark on the questionnaire that might identify you. If you have further enquiry or would like to be kept informed of the decision regarding the setting up of a new school, please do not hesitate to contact us.

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Carers

A chance for you to tell the Government what it’s like for you as a carer.
If you feel that as a carer you are not getting the help and support you need, or believe that services could and should be improved, you can make your views known by contributing to a questionnaire study that is investigating this very problem.

A team from King’s College London has been commissioned by the Department of Health to carry out this study across the UK as part of the Government's National Service Framework (NSF) for Long-term (Neurological) Conditions.

If you decide to take part the team will post you a set of questionnaires to fill in and return. Most questions involve ticking a box, circling a number or writing a short sentence.

They will then telephone you at a time convenient to you to help with any questions you were unsure about, and to give you the opportunity to tell them about any problems that were not covered.

If you would like to know more, you can:

- Phone Diana Jackson or Dee Howley: 0207-848-5582 or 0207-848-5418

- E-mail the Research Team.

- or download information and a reply slip by clicking the link below.

Kings College Carer Support Research (80 kb)

A research study of memory and language impairments in herpes encephalitis

We would like to enquire whether you would take part in a research study that examines how you understand and use your language and memory abilities. Before you decide if you want to take part, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully. Ask us if there is anything that is not clear or if you would like more information. Take time to decide whether or not you wish to take part.

Purpose of this study

The main aim of this study is to examine how language and semantic memory is stored and processed in the brain. Semantic memory is that part of your memory system which allows you hold on to and later recall different types of information about the world around you (for example, the names of different animals or household objects). By observing the kinds of language and memory difficulties you may have, we hope to be able to increase our understanding of the way language and memory is organised in the brain.

What we will ask you to do

We will measure memory and language by using psychological tests like ones you may have performed in the past. Sometimes the tests will be quite short (about 5 or 10 minutes), and sometimes the tests may be longer (up to an hour). The tests involve doing some very simple tasks. For example, you may be asked to answer some memory questions, to read or repeat words, or name pictures. Your performance on these tasks can help us work out why you find some kinds of material more difficult than others. We would like to run the tests on a number of occasions, each separated by 6-8 months. If you have any questions about what the test session involves, we will be happy to answer them before you agree to take part.

In addition to these tests, we would like you to undergo an MRI scan. MRI stands for “Magnetic Resonance Imaging”. It involves lying still in a tube-like enclosure for 20 minutes to half an hour while an image of your brain is produced. It enables us to understand your performance on the psychological tests in the context of any physical differences which may exist between your brain and that of other people. This, in turn, helps us to clarify the way in which language and memory operate in the brain. The procedure does not involve the administration of any radioactive substance, but works by applying a magnetic field around your head. MRI scans are a non-invasive procedure and are considered to be very safe. There will be an opportunity to learn more about the procedure prior to day of scanning, and you will be able to raise any concerns with a qualified radiographer or clinician on the day itself. If you prefer not to have the scan, you may withdraw at any time without having to give a reason.

What we will not ask you to do

You will not need to change any aspect of your lifestyle if you agree to take part, and we will not ask you to take any additional medication.

What are the benefits in taking part?

Although there will be little personal benefit in taking part, we hope that what we find will be of interest and assistance to people with memory or language problems in general. We still have a lot to learn about how we comprehend and hold on to information about the world around us and we believe that your participation in our research will enable us to address these issues.

Confidentiality

Under no circumstances will your name or personal details be passed on to anybody outside of out research group (the Centre for Speech, Language and the Brain), without your permission.

What happens to the data we collect from you?

We plan to publish our findings in academic journals and we may also present our findings at conferences. Wherever our findings are presented, we will never disclose your name or any other personal details.

Who is organising and funding the research

This research is being carried out by staff in the Centre for Speech, Language and the Brain at the Department of Experimental Psychology, Cambridge University, under the supervision of Professor Lorraine Tyler. It is funded by the Medical Research Council.

Contact details

You may contact Mrs Marie Dixon during office hours on 01223 766458, by fax on 01223 766452 or by email at research@csl.psychol.cam.ac.uk to discuss any aspect of the study. Please send any written enquiries to Mrs Marie Dixon, Department of Experimental Psychology, University of Cambridge , Downing Street , Cambridge CB2 3EB .

Thanks in advance for your participation, should you agree to take part.

Professor Lorraine K Tyler

Aetiology of encephalitis in England: a multi-centre prospective study

In most cases both in this country and overseas, the cause of encephalitis is never found and this makes it impossible to devise new treatments or develop preventative strategies. The Health Protection Agency (HPA) is now embarking on a study of encephalitis to improve the number of people who are diagnosed.

The outline protocol for the study was drafted with help from the Encephalitis Society and the study is being led by Dr. Natasha Crowcroft, Consultant Epidemiologist, who is a member of the Encephalitis Society Clinical Advisory Panel. The aim is to improve the ability to diagnose the cause of encephalitis, to discover new causes and to learn more about how patients are affected by the condition. It also aims to reduce the current level of 2/3 of patients for whom a cause is never found for their illness. They will also store patients’ samples for future use when new diagnostic procedures become available or new causative agents are discovered.”

Natasha said, “Extensive testing, including innovative techniques for new pathogen discovery will be carried out at the national HPA reference laboratories and the National Hospital for Neurology and Neurosurgery to complement local routine tests in ensuring comprehensive investigation.”

Patients will be recruited over a 2 year period from 18 participating hospitals located in three geographical clusters in the North West and South West of England and in London. The study has already started in the South West region.

The study’s findings will aid the development of a standard diagnostic algorithm for the diagnosis of encephalitis. Detailed assessment of risk factors and outcome will also be carried out, so that patients and their families and friends can be given better information about the disease. The HPA is carrying out the study in partnership with the NHS and with the support and involvement of the Encephalitis Society and the Clinical Virology Network.

For more information go to
www.hpa.org.uk/