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:

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.

Holistic Needs Assessment - Support from Volunteers

Following an HNA you may receive support from a Volunteer. The level and support you will need will be discussed with you during your HNA.

TalkTogether Volunteers

TalkTogether is a new telephone contact service being developed by the Trust to put people in touch with a friendly voice to offer conversation, moral support and understanding. It provides an opportunity for beneficiaries who need a friendly ear to be put in touch with another beneficiary who has the time to listen, the perspective to understand and the right skills to provide support. We are currently recruiting for volunteers. Please see the TalkTogether Volunteer Role Profile

Connect Volunteers

We are recruiting for new Connect Volunteers. This Volunteer role is to help beneficiaries all over the country. The role will be home based.

The role will involve building up a knowledge of local services available in your local geographical area. These services may include:

  • Benefit advice and support
  • Local voluntary service
  • Befriending schemes
  • Knit & natter
  • Gardening clubs
  • Coffee mornings
  • Care & Care assessments
  • Social Services
  • Citizen Advise Bureau
  • Different Health Services
  • Tradesman
  • Cleaners/Gardeners/PAs/Carers
  • Massage centres
  • Mobility centres
  • PAs
  • Physiotherapists, Gym and fitness clubs, Pilates

As a Connect Volunteer, you will be providing vital support to beneficiaries across the UK by connecting them these local services and organisations.

To be able to perform this role from home you will require an up-to-date computer, IT skills, a phone or mobile, and an internet connection.

For more information please contact Michelle Robinson on 01480 474074 or see the role profile please see the following:

Connect Volunteer role profile

LIfTS (Low Mood Improvement for Thalidomide Survivors) Peer Support Volunteers

Low mood, depression and anxiety

We know from our contact with you that from time to time many people experience these problems.

LIfTS (Low Mood Improvement for Thalidomide Survivors) is a pilot project being run for the Trust by the University of York. The project will test whether a simple psychological approach called Behavioural Activation (BA), accompanied by telephone support from specially trained beneficiaries, can reduce peoples’ symptoms of low mood. Peer Supporters will help the beneficiaries taking part in the project work though a six session workbook based BA programme.

We are looking for up to ten people to join us in this important project as Peer Supporters. We would welcome applications from all sections of the beneficiary community, including those with a hearing impairment. You will need to have well-developed listening skills, a non-judgmental approach and a strong understanding of the importance of confidentiality. The team at the University of York will provide full training and you will be supervised and supported throughout the project.

There will be no travelling involved with this role, the support will be provided by telephone. However there will be a 3 day training course which will be held in York on 6, 7 and 8 November.

To find out more about what’s involved in being a LIfTS Peer Supporter, take a look at the Peer Supporter role profile FINAL and Information Sheet for LIfTS Peer Supporters FINAL. If you think this sounds like you and are interested in finding out more about the role and the application process, please contact Liz Newbronner, e-mail liz.newbronner@york.ac.uk  or telephone 01904 321630 to express your interest - there is no commitment at this stage.

To apply for the role please complete LIfTS Peer Supporter Application Form FINAL





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.