The Story of the Trust
The Thalidomide Children's Trust was established on the 10th of August 1973, with the object of providing support to those people who had disabilities caused because their mothers had taken the drug thalidomide during pregnancy. A total of 515 people have been accepted by the Trust as beneficiaries to date, but over the same period 50 have died.
While the popular image of Thalidomide damage is of those who have only rudimentary arms and legs (four-limb deficient), there are very many with damaged ears and hearing, and also others with damaged eyesight. A few have brain damage which limits their ability to lead any form of independent life, and this is often coupled with sensory damage. Some, while they have two good legs, have no arms or hands at all, and a large number have arms ranging from half or two thirds of normal length down to only two or three inches long. Very many of those with hands have fingers missing, and no thumbs. Leg damage often resulted in one or both legs shortened (as in the arms), and feet absent or significantly damaged. There was also extensive damage to the internal organs and the entire skeletal structure.
The Trust began operation in 1974, and confronted many challenges, not least of which was finding out in what way effective help and support could be delivered. At this time, most of the children were approaching their teenage years, and many had spent all or most of their lives in residential institutions, such as Chailey Heritage.
They had already been the subject of much professional attention, often well-meaning, but also often very unwelcome. Many had been the subject of series of operations to make them appear more 'normal', such as constructing ears where they had none, or amputating vestigial digits, etc. The drive to find functional artificial arms was very considerable: their experiences with these as children were such that very few are interested in using such prostheses today. Many of those born without arms have become very skilled at using their feet and toes for everyday tasks - but often at the expense of increased stress on their legs, spine, and neck.
The founding staff of the Trust spent a lot of time visiting families, and realised that much could be done to assist family life. Cars, home adaptations, caravans for holidays, grants for clothing all became part of the normal work of the Trust. The Trust supported research and development work into equipment such as typewriters that could be used by the children, and in consequence many of them developed keyboard skills and a familiarity with technology that stand them in good stead today. The work on providing the children with cars adapted for them to drive themselves has resulted in many with very high levels of disability being able to be independently mobile, and also paved the way for the highly successful Motability scheme, which now helps tens of thousands of disabled drivers every year.
A small hotel, Haighmoor House, was purchased on Jersey, and adapted for disabled residents. Here, many children had their first proper holidays. More important, they met others with the same problem as themselves, and they learnt a lot from each other about how to cope with their conditions.
By the late 1980's, the desire for 'communal' holidays had faded, and the hotel was later sold. The present system of allocations became accepted and understood, and the majority of the children had grown into adults who were determined to lead independent lives. The Trust has also worked closely with the various families and institutions caring for beneficiaries who have not and never will be, able to achieve this.
It was during their teens that people realised that the Thalidomide children as a group were exceptionally determined to overcome their disabilities, and they refused to accept the limited lifestyles many then thought appropriate for people so badly disabled. A majority have married, over the years, and between them they now have over 500 children. Many have become highly qualified, and have successful professional careers, while others have built and run businesses, and a large number have regular full-time jobs. One way or another, around half are in employment, while many of those not in employment are bringing up families.
The concept of annual allocations was developed by the late 1970's, and all grants issued to children and their families were brought into individual accounts. This was also necessary to ensure that maximum benefit could be obtained from the limited range of tax exemptions or concessions available for disability-related grants. It was discovered shortly after the Trust had been established that grants which fell outside the specifically exempted applications were subject to a special tax charge, applied to grants from trusts to individuals which were regarded as income. This was initially similar to the tax levied on unearned incomes (as high as 48% in the mid-1970s), but was retained after the abolition of the special tax for unearned incomes, and by 2004 stood at 40%. A Parliamentary campaign, commenced in 2002, and led by beneficiaries eventually resulted in the Treasury introducing a Statutory Order (secondary legislation) which came into effect on 5th August 2004, abolishing the tax. This order declared that all payments by the Trust to its beneficiaries were periodical payments from a scheme for accident damage compensation, and therefore tax-exempt.
The policy in the early years was to build up reserves for the future from the Distillers' covenant, against anticipated greater levels of need in later life. The inflation of the 1980's, however, left the Trustees considering reports by the early 1990s that the Trust risked running out of funds unless extra support could be found.
By the late 1990's, it was also becoming apparent that many of the beneficiaries were encountering health problems including accelerated wear of joints and limbs, which were causing pain and further disability. By the age of 40, a number have had to have hip replacements and even shoulder replacements.
In 1995 and again in 2000, Guinness and later Diageo plc (the companies who had successively acquired the Distillers group) agreed to further covenanted payments to continue up until 2022. A new investment strategy was implemented, and the combined result was that by 2001, the level of reserves exceeded £100 million, and the Trust's actuaries were able to advise the Trustees that there was now sufficient money to maintain the established level of support for beneficiaries for the rest of their lives. The decline in the investment markets following 2001, and the results of studies showing that Trust allocations barely provided half of what beneficiaries needed to cope with the effects of their (worsening) disabilities resulted in further negotiations with Diageo plc, and in December 2005 a further agreement was made. This provided for covenant payments to be increased, and for the payments to be extended from 2022 to 2037. This was calculated on the basis of the money required to double beneficiary annual payments from the 2004 levels by 2022.
Because of the changing health and ability levels of beneficiaries, the Trustees began investigating new ways of providing support. A development project was initiated in 2001 aimed at finding the best ways of using new computer and communications technologies to help beneficiaries cope with everyday life. This led to the proposals for an integrated Health Information Service (as part of a wider Thalidomider Support Programme), the details of which were published in the 2006 Long Range Plan.