The majority of people who have been ill with encephalitis return to the care of their family. Consequently families bear the brunt of the emotional and behavioural changes which can follow encephalitis, often without appropriate information or support. In addition to this Guide, the Encephalitis Society can help with further information, advice and support. The Society operates a linking scheme, linking people in similar situations for mutual support. The Society also organises support meetings across the UK and Republic of Ireland which are free to attend and provide an opportunity to meet with other people and families.

Parents and partners who find themselves having to deal with significant caring issues may benefit from contacting their local Carers’ Resource. The national organisation Carers UK is the leading provider of information on all matters relating to caring.
www.carersuk.org CarersLine on 0808 808 7777

The Encephalitis Society does not have a local support network, but there are numerous HEADWAY groups that can provide this service. Headway is a charity set up to give help and support to people affected by brain injury. A network of local Headway Groups and Branches throughout the UK offers a wide range of services, including rehabilitation programmes, carer support, social re-integration, community outreach and respite care. The services available will vary, depending on local needs and resources.
www.headway.org.uk Helpline 0808 800 2244, helpline@headway.org.uk

Counselling

Being supported emotionally is very important to all of us. Having someone who shares our concerns makes it easier to cope. For some people having a supportive family will be enough. Others may need more professional help.

There are various kinds of counselling services available, their help may be short or longer term and it may be free or involve payment. Counselling isn’t offered routinely and you will have to ask for it. Often the first person to ask is your GP. The British Association for Counselling and Psychotherapy (www.bacp.co.uk) provides a list of local member counsellors.

Managing Stress

Stress can be brought about by the day to day difficulties of coming to terms with the effects of encephalitis. Experiencing stress for short bursts is a healthy way to respond to difficult situations but excessive or prolonged stress can cause illness. These may include physical symptoms - headaches, nausea, indigestion, palpitations, excessive perspiration. Prolonged stress might lead to feelings of anxiety, fear, anger, frustration, and depression. There may be changes in behaviour too - more irritable or tearful, this can affect interaction with others and it may interfere with sleep patterns or sex life.

Regular exercise, rest and nutritious food and water are all necessary in order to live well and withstand stress. Learn to relax by listening to pleasant music or doing specific relaxation exercises that can help you sleep better.

A number of organisations produce a range of helpful information on coping with stress, feelings of anxiety and depression. They include the Mental Health Foundation www.mentalhealth.org.uk and Mind www.mind.org.uk Details of these organisations can be found in the Resource Section at the back of this guide.