BEHÇET’S SYNDROME SOCIETY

Leaflets

• General brochure about the Society
• A fact-sheet about Behçet’s disease
• A general patient’s guide
• Eyes
• Nervous system
• Headaches
• Info carry-card
• Diagnostic guidelines
• Fund-raising - information leaflets for the public
• Fund-raising - sponsorship forms
• Effects of Behçet’s disease for professionals associated with health-care and social work and for benefits appeals and tribunals
• Technical articles and papers for health professionals

The Society has some information in

• French (Français)
• Spanish (Español)
• Turkish (Türkçe)
• Persian

There is no charge for any of the leaflets. To get them, please phone or write to the Society at the contact address.
The Arthritis Research Campaign (arc) have produced a booklet on Behçet’s Syndrome. To get a copy write to:
arc Trading Ltd, James Nicolson Link, Clifton Moor, YORK, YO30 4XX
or order online at www.arc.org.uk

Newsletters

These are issued to members, usually twice-yearly. They have contributions from members and items and announcements of general interest.
The Society welcomes anything from members or carers, friends or family that they would like to see published.

Telephone Helplines

The Society provides 3 help-lines. These are available in social hours eg 9.00 am to 9.30 pm every day. Because the helplines are in peoples' homes and are run by volunteers who have jobs, answerphones are provided for ALL messages. These messages are put in a queue and our aim is to respond within a few days. Callers are contacted as soon as possible at the Society's expense.
Please note that we do not deal with emergencies. Go to your doctor or contact NHS Direct.

Personal Information Service

Confidential information about symptoms, treatments, centres of expertise and availability of experts can all be given to people individually and privately either by the telephone help-lines, by e-mail or by letter.
These are some of the sorts of problems we can probably help with:

• Do I have to take any medication? Why?
• What does my medication do? How does it work?
• What are the side-effects?
• Are there any other sorts of medication that could help?
• Are there any complementary therapies that help?
• What are the symptoms?
• Is this a new symptom? Is this a side-effect?
• Is this symptom or side-effect common? Should I see my doctor right away?
• How can I or my GP find an expert in Behçet's?
• How does the NHS system work? How can it help me?
• What can I do if it is letting me down?
• Have I filled in my benefits application form effectively?
• Is it safe to have a baby when I have Behçet's?

If you have questions like these phone or write to the Society. It is there to help you.

Counselling

The Society does not provide trained counsellors, but the help-lines provide a listening and discussion service.

Financial Aid

The Society will provide grants to help people who are in hardship because of Behçet’s disease.
Grant applications have to be considered by the whole committee and cannot be given quickly for emergencies.
To provide a grant the Society will need evidence of the amount needed such as a written estimate, a bill etc. and evidence of need, for example evidence of being on benefit, a letter from a social worker, doctor or other appropriate authority.
Grants are considered on the basis of being of direct help over a reasonable period of time to the member.
Grants applied for must be a one-off item, regular payments of any sort are not considered.
There is a flexible upper limit to grants. Sums can be put towards other money collected for more expensive items.
Examples:

• Prepayment certificate for drugs
• Help with travel to hospital
• Household bills
• Help towards computer with reading aids/voice recognition if you are visually impaired
• Aids or other equipment not available on the NHS to help if you are disabled
• Washing machine

Contacts

Members who wish to be put in touch with others can be given address lists of people in their area. Members who do not want to be on lists can be excluded - just let the Society know. Telephone numbers are not released and ex-directory numbers are particularly strictly withheld.

Local Groups/Branches

The Society encourages the formation of local groups. If anyone wants to set one up, the Society can help with names and addresses and initial postage.

Help with applications for Social Security Benefits

Members are encouraged to use agencies such as Citizen’s Advice Bureaux, Welfare Benefits Advisors and so on, for information and help with benefits applications. The Society is happy to discuss effective ways to fill in forms and the sort of words to use. It can provide appropriate technical leaflets about Behçet’s disease to go with forms or to appeals or tribunals.
Please note:- the Society cannot obtain or fill in forms for people.