Talking to another beneficiary who has had similar experiences can be really helpful and reassuring. The Trust are really keen to encourage and develop this kind of support and to provide an opportunity for beneficiaries to share their experiences, share information and provide support to each other (peer support).
Throughout this website we have provided opportunities to share information with us whenever you come across a good service or product and we hope you will take the time to do this if you can.
You may also be willing to talk to another beneficiary about your own experiences - whether that is a medical condition or a kitchen adaptation – this is invaluable support to someone who is struggling to get information relevant to them as a thalidomide survivor. Please let us know if you are happy to do this by contacting Michelle.
We are also interested in hearing from you if you have skills or knowledge that you would be willing to volunteer to the Trust occasionally. Perhaps you have given up or cut back work and would be able to help out with projects or specific pieces of work.
Health & Wellbeing Volunteers
A number of beneficiaries have been working with the Health & Wellbeing team for many years to provide support, information, advice and guidance to others and to share their own experience, knowledge and understanding of living with the effects of thalidomide.
Many of these volunteers have additional skills and experience and are able to offer help on a range of issues such as:
- support applying for benefits such as PIP
- finding the right equipment or IT solutions
- dealing with social services in obtaining a direct payment
- Providing emotional support and friendship
Volunteers provide confidential and understanding personal contact for those in need of support.
Volunteers are not expected to be a replacement for the professional staff of the Trust but rather to work alongside and enhance the services provided. They are not necessarily trained as counsellors or benefit specialists (although some are) but they can provide practical and essential information and will signpost you to other relevant information or organisations when necessary.
Most importantly the volunteer service is a peer-to-peer scheme and volunteers provide an empathetic insight and understanding of your situation.
How do I get access to a volunteer?
When you talk to our Health and Wellbeing team about any issue, we may suggest putting you in touch with a volunteer. If you agree that you would like to try this, a volunteer will then be put in touch with you.
The initial contact from the volunteer is usually by telephone or email. We usually try to match up a request so that the volunteer has the relevant knowledge or experience of the issue. Geographic location can also play a part, if the volunteer lives in the same region, but this is not essentially important as volunteers are quite willing to travel and often successful contact can be maintained through telephone calls or via e-mail.
Currently we have volunteers in the UK and we also have a small number based in North America.
Some of the Health & Wellbeing beneficiary volunteers have undergone specific training to be able to carry out HNAs. They have been trained alongside Trust staff and are subject to exactly the same rules of confidentiality.
When you are contacted to be offered an HNA you are given the opportunity to express a preference for a beneficiary volunteer to undertake the HNA.
The Volunteer Technology Advisory Group-VTAG
VTAG are a group of beneficiary volunteers who are keen to support other beneficiaries through the use of Information and Communication Technology (ICT). They are able to provide information and support in relation to a range of new technologies and are always on the look out for new equipment that improves independent living. VTAG are regular visitors to a number of key exhibitions such as Naidex and Rehacare and they welcome feedback on events or items that could be of interest to the thalidomide community.