- HISTORY
- CURRENT PICTURE
- Nf2
- How can I contact an Nf Advisor?
- Do you have to be a member of the Association?
- Plans for the Future
- QUOTES
- CONTACT US
HISTORY
First established in 1991, the aim of the Nf Specialist Advisor Network is to provide vital support, advice and information to anyone with neurofibromatosis. It is recognized that throughout the UK there are many people who, following their diagnosis, feel isolated and unsupported. The Advisors work together with individuals and families to provide information and support to help them gain a better understanding of Nf and how it affects them.CURRENT PICTURE
The network has grown and developed both in terms of size and knowledge of Nf and the value of the network is demonstrated every day in the unique and specialised work of the Advisors with individuals, families, health professionals, schools, other voluntary organisations and a range of other professionals.All Advisors are highly qualified professionals with a background in either nursing or social work. Working from a base within an NHS Trust and with strong links to the regional genetics centres, they link with the many other professionals involved in the care of anyone with Nf. As well as providing emotional support and information to parents, families and individuals on the many aspects of Nf, the specific role of the Advisor also includes:
- Time to talk about Nf and what it means for the family or individual.
- Support to those who are newly diagnosed or in times of acute need.
- Ongoing contact if and when needed.
- Accurate and up to date written information about Nf1 and Nf2.
- Information on other organisations that may be able to help.
- Liaising with health, education and social services to ensure that the best practical help and support is available.
- Guidance on education problems, including talking to teachers.
- Providing information about events and activity based holidays for children, young people and adults.
- Providing specific information for professionals.
Nf2
Nf2 is rare. Information can be difficult to find and the emotional impact on families can be great. One of the main roles of the Specialist Advisor is to:- Ensure that relevant and up to date information is available for individuals and professionals.
- Promote a better understanding of the effects and uncertainties of Nf2.
- Provide opportunities for people with Nf2 to meet by organising Nf2 weekends, specific workshops at the AGM and attending other social events.
How can I contact an Nf Advisor?
Please contact head office to find out where your nearest Specialist Advisor is based and how to make contact. The NfA now offers a national telephone helpline, staffed by one of our Specialist Advisors. The helpline operates on Mondays and Thursdays from 9 am - 4 pm and the telephone number is: 0845 602 4173 (local call rate).The service of the Advisors is free and confidential. Any information will only normally be shared with your permission. However, on those rare occasions when someone's safety is at risk, it may be necessary for the Advisor to seek advice
Do you have to be a member of the Association?
Access to the Advisors is available to anyone with Nf. However, if you become a member of the Association you will receive a newsletter which will inform you of any research that is taking place, fund raising events, summer camps, local news etc. You will also receive invitations to attend the Annual Get-together/Information Day, which incorporates the Annual General Meeting, and also to other fund raising events at a reduced rate.Plans for the Future
Looking forward there are a number of targets for the network which include:- Continuing to provide high quality support, information and advice to anyone with Nf.
- Securing the future of the network by raising the funds needed for the posts.
- Raising the profile of the network with a range of professionals and the general public. This will not only raise awareness of Nf and the network but will help to reach those individuals and families who have not benefited from contact with a support Advisor.
QUOTES
"It has meant a lot to me that you have been there to listen, give advice and support - and best of all to put our minds at ease and stop us from worrying." parents of a young child
"You gave me that bit of confidence to speak to the Doctor and let him know that I understand about my problems and yes, things have changed since I was diagnosed." 80 year old lady
"Thank you for coming to the school. The staff really benefited from your visit and we were all agreed that your input had been very helpful to us all." head teacher of a nursery school
The NfA is grateful to Northern Rock, the Scottish Office, Southampton University Hospitals NHS Trust, Belfast City hospital Trust, Leeds Health Trust and PPP for their continuing support of the team.
