virusThalidomide Trust Covid-19 Response

There was very little opportunity to prepare for the start of the UK Covid-19 lockdown.  For the Thalidomide Trust’s 460 beneficiaries, lockdown was likely to present a range of practical problems.

Read how the staff, Trust supporters and beneficiaries have taken action to help to maintain the wellbeing of their community.

Author: Simone Illger (Trust beneficiary and NAC member)  Contributors: Katy Sagoe (Health & Wellbeing Director), Karen Sayer (Trust beneficiary), Emma Medus (Personal Trainer)

The Trust and its beneficiaries

The Thalidomide Trust is a registered charity that supports this unique community of people who are living with disabilities as a result of their mothers taking the drug, thalidomide, during the first three months of pregnancy.

Now all aged between 57 and 62 and spread throughout the UK - with a small number (39) living overseas, the group is affected by a myriad of impairments.  Many have upper limb impairments (either absence of upper limbs or shortening of limbs, missing digits), others have mobility problems as a result of lower limb and / or hips having been affected by the drug, or significant wear-and-tear damage - having used lower limbs throughout their lives to carry out everyday activities that would normally be accomplished with hands and arms.

Other disabilities caused by thalidomide include hearing and vision impairment, facial disfigurement and palsy, and internal abnormalities affecting major organs.  A small number have learning disabilities affecting their cognitive functions.

The Trust beneficiaries, all being around the same age, are now experiencing a very real and measurable decline in their health, their quality of life, their ability to remain independent as well as increasing and significant levels of pain.  Many are dependent on support from other people to live safely and independently. Therefore attempting to self-isolate when you have personal care needs presents a very real problem.

The Thalidomide Trust offers a wealth of support to this group.  Every beneficiary receives a Holistic Needs Assessment visit from a member of the Trust staff at least once every three years.  The purpose of these visits is to ensure the Trust fully understands and is able to respond to the needs of the beneficiaries individually and as a group.

Issues that beneficiaries faced due to lockdown and social distancing

Katy SagoeKaty Sagoe, Director of Health & Wellbeing at the Trust, noted that “as soon it became clear that Covid-19 would mean severe restrictions on everyday activities, we knew we would have to move quickly to make sure that we could stay in touch with everyone, who would understandably be very anxious about the situation and help them get access to the care and help they needed from day one. As well as practical support we knew emotional support would be key as we are aware that the levels of anxiety and low mood are high amongst people living with disabilities caused by thalidomide and that this would only be exacerbated by the lockdown”.

Once the lockdown had been announced, staff at the Trust began to work out how they could offer a similar level of support to the group. They immediately identified those who might be most vulnerable because they lived on their own or had been experiencing a level of anxiety.  The Trust staff, now all working from home, started to call those beneficiaries on their list to ask how they were coping and whether there was anything they needed in terms of support.

The thalidomide community begins a programme of support activities

At the same time, the Trust’s team of thalidomide volunteers swung into action.  A regular rota of “virtual coffee breaks” via Zoom, hosted by a volunteer, were arranged.  Beneficiaries have been able to choose which date and time suit them best and then call in to enjoy interaction with others.  These have proved very popular. One afternoon “break” had beneficiaries join from Jamaica, Canada, Ireland, Southern Ireland, Scotland and throughout England. Conversation flows, people are connected and mutual empathy, ideas and support given.

Zoom coffee break

 

Meanwhile on Facebook, another mutual support group established over two years ago following a successful “Fit for the Future” event, was gearing itself into action.  Moving from the regular monthly ‘weigh-in’ and article / information sharing activities that the group members found useful, a regular weekly ‘catch up’ Zoom call was arranged.  “It’s been really successful…” explains Simone Illger who hosts these sessions. “A trained physiotherapist, who has attended our two “Fit for the Future” events and has worked with the group  to understand our unique problems, has joined the weekly call. They have been able to offer lots of practical advice around dealing with pain and suggesting exercises or equipment that might help.  As most of us aren’t able to have our regular massage, acupuncture and other pain-relieving treatments we are learning of other ways to keep on top of the pain”.

Exercise is important for thalidomiders to increase activity levels and strengthen muscles

Also joining the calls has been Emma Medus, a personal trainer, whose mother Louise, sadly died in 2018. Louise was one of the Trust’s volunteers and worked tirelessly to support her community despite her own high level of impairment.  Emma had provided sessions at the “Fit for the Future” events in 2016 and 2017, sharing ideas and practical information with thalidomiders on how they could exercise safely, both to increase activity levels, and help strengthen muscles and bones.

lady taking part in online exercise classEmma has devised a weekly Zoom fitness class, which provides a series of exercise workouts that are suitable for the range of impairments held by those who participate.

“Devising the class to suit all levels of fitness and mobility has been challenging but really rewarding. It’s been great to get a group together focusing on areas the participants have said they want to strengthen or stretch.  It's also been a great way for everyone to catch up and motivate from afar,” explained Emma.  “My Mum was passionate about her involvement with the Thalidomide Trust and I’m really happy to be able to continue that in her memory.”

Thalidomide community has become closer

During this challenging time, when so many communities are being forced apart, the thalidomide community is being brought even closer together.

Karen Sayer, one of those who participated in one of the “Coffee Break” on-line events explained:

beneficiaries at a thalidomide trust open day event to meet others and share information“The Coffee Breaks have been one of the few positive things to come from the current emergency. Living by myself and only becoming part of the Trust family in late 2018, our recent gatherings have opened new doors for me.

For the first time in my 60 years I have met women, in our all-female group, who have experienced similar things to me during their lives. Things that most non-disabled people know nothing about or understand. I just didn’t realise how emotional, yet supportive, this could be. It’s really good to be part of such a welcoming, inspiring and lively group of women.”

Join the Zoom events

We'd love to see you at our Zoom events - coffee breaks, Fit For The Future sessions or fitness classes. Everyone is welcome.

Get in touch and join us - 01480 474074 or email

 

Learn more about the work of the Thalidomide Trust

This video was made with the support of Diageo to highlight the important work at the Trust and the difference it makes to the lives of our beneficiaries.

Online support for beneficiaries

In addition to the remote personal and group support activities, the Trust has a wide range of online information. This includes the Thalidomide Community Forum where beneficiaries can connect to each other, as well as advice and guidance on wellbeing.

Connect with other beneficiaries

beneficiaries at a thalidomide trust fit for the future event focusing on keeping active

 

Visit our Forum to join in the conversation and share experiences with other beneficiaries

Protect your mental health during isolation

mindfullness

Guidance on supporting your mental and psychological wellbeing during the Covid-19 crisis

Become a Trust volunteer

 

volunteers team

Read about the opportunities to become a trust volunteer and how you can help others