Information For Social Workers

This information is for all social care professionals. It explains the particular health issues beneficiaries face due to thalidomide that Social Workers and assessors need to understand before carrying out an assessment for the activities of daily living.

It is designed to be read by an assessor before any assessment takes place and by carers before they start to provide care. We recommend that a copy is used during an assessment and that it is included with the resulting care plan.

 

Key points relevant for Social Workers and Carers

1. Condition called Thalidomide Embryopathy or thalidomide damage

Acceptable terms for a person affected by this condition are:
Thalidomide Survivor
Thalidomider

Ask the person which they prefer.

2. Possible types of thalidomide damage

Absent or shortened limbs (it is acceptable to say ‘short arms’ or ‘short legs’)
Hands and/or feet absent or damaged
Missing digits
Missing joints
Spinal damage
Hearing impairment and/or missing outer ear
Sight impairment
Facial paralysis or damaged facial bones
Internal damage to organs, digestive system, reproductive system
Neurological issues such as numbness, pins and needles, loss of grip and strength
Psychological issues such as depression/low mood, anxiety

3. The Thalidomide scandal and background information

It is essential that any assessor or carer is aware of the thalidomide scandal and the effects of this legacy on how people affected have lived their lives.

Thalidomide affected child with upper limb damage writing on a blackboardThalidomide was a significant scandal in the early 1960s and the children born damaged as a result have been in the public eye for most of their lives. As children they were objects of interest and enquiry to medical professionals and social workers. Many were given up by their families on the advice of those professionals and as a result there is a commonly held distrust of scrutiny and assessment. This is likely to lead to thalidomide survivors being anxious or uncooperative during an assessment.

Thalidomide survivors have been trailblazers for independence and achievement in the face of their disabilities. They were told they would not survive childhood, then would never work and not marry or have children. One by one they have defied these predictions and they are fiercely independent. As a result many are unwilling to admit when they are not coping or are finding day to day tasks difficult.

Recognising that the way they usually carry out activities of daily living may now be having a negative impact on their health, and can potentially be unsafe, is really difficult because they may fear the total loss of their independence. They may understate the difficulty or safety of how they have to manage on a day to day basis.

4. Key issues faced dependent on the type of damage

Severe and chronic pain

A level of pain is generally constant due to the damage but flare ups can also occur after activity. As a result this affects the type of activities that can be done and the period of time that they can be done for.

Using the body in ways it was not designed for

People with absent or short limbs develop their own way of doing daily living tasks. This puts a strain on the body resulting in pain and fatigue. For example, to compensate for a reduced reach overuse of the neck, shoulder and spine is needed. Using arms to move around because there are no legs present causes severe stress on the shoulders, hands and/or elbows, resulting in pain, arthritis and joint degeneration. The medical view is that pushing past the pain should be avoided as this damages further the misaligned joints, can cause muscle spasm and can exacerbate the pressure on the normally formed joints.

Social anxiety and stress

Resulting from facial disfigurement.

Psychological stress

Resulting from being stared at due to the thalidomide scandal being a huge public event. This may mean that a person does not want to go out or travel.

Poor body temperature control

Thalidomide survivors often experience hyperhidrosis (excessive sweating) or feel the cold.

Balance and falls

Issues result from pain and fatigue, ear/sight problems, absent or short arms, lower limbs of uneven length and unsteady gait giving a fear of being unable to save themselves when falling.

Prosthetics

People using prosthetic limbs may find they don’t fit well as they have not had a ‘clean amputation’. This gives discomfort and fear of falling.

5. Ageing and the impact of thalidomide damage

Evidence shows that thalidomide survivors’ health has deteriorated gradually over time. Now they are all in their late 50s/early 60s, they are experiencing a number of age-related health issues. These include incontinence, joint problems, severe arthritis and problems with balance. Thalidomide damage exacerbates all the issues resulting in a disproportionate impact on their health and levels of functionality.

6. Common aspects of daily life which can restricted

Food preparation and cooking
Eating
Weight management
Managing therapies and or monitoring a health condition/medication taking
Washing and dressing
Toileting
Maintenance of environment
Communicating
Reading/paperwork management
Engaging with others and a willingness to go out
Mobility – both walking and driving

Mandy using app on her phone to operate OrCam

Kath's kitchen design includes worktops at different heights for both her and her husband to use

7. Awareness of issues that thalidomide survivors may not wish to talk about or may understate because they fear a loss of independence

May be unwilling to admit that they cannot cope with normal daily activities
May understate the difficulty or safety of how they perform daily activities
Level of pain experienced day to day as it becomes the norm for them
Distress and anxiety at the risk of falling and injuring themselves
Any unseen damage
Secondary health issues arising because they use their bodies in ways that they were not designed for, i.e. using arms to move around when no legs are present, puts additional strain on shoulders/elbows/wrists
Toileting
Low mood
Alcohol misuse

8. Suggested communication approach and strategy when assessing care needs

Try to make the person feel at ease:-
Look – is there a hand to shake? It’s ok to ask if a handshake is welcome – don’t assume it is not possible.
Make it clear that the assessor understands the context of thalidomide and that it is not a disease or an acquired condition

Recognise that some people will consider accepting that they need care as a loss of independence and will be anxious, frustrated and fearful of an assessment. Be patient and courteous.

Be open and honest. It’s ok to ask about the extent of the limb damage and any other unseen damage.

Be personable and friendly, but professional in order to provide confidence that you are able to understand the extent of the impact of living with thalidomide damage.

Important - Financial Assessment For Social Care

Funding received by beneficiaries from the Thalidomide Trust is not taken into account when deciding what an individual is required to pay towards the cost of their care and support needs in England, Wales, Scotland or Northern Ireland – this is known as the Social Care Disregard and this applies to both the money received from the Trust in the current year (income) and money received in previous years that remains unspent (capital).

A letter confirming the status of this funding can be provided by the Trust on request.

Download our Social Care Disregard Q&A factsheet for more information.

Social Disregard Q&A Factsheet

Additional information

If you need help with Social Care applications or assessments please contact the Trust on 01480 474074 or email.