Consultation outcome

The Thalidomide Trust response

Updated 23 March 2020

1. Overview

The Thalidomide Trust is a registered charity and discretionary trust providing support to 460 beneficiaries, aged 55 to 61 years, of whom 422 are resident in the four countries of the U.K. Beneficiaries are in receipt of compensation payments administered by the Trust in the form of discretionary annual grants together with a health grant from the Department of Health and Social Care intended to meet the additional health and wellbeing costs that result from living with the effect of thalidomide damage.

In recent years, the Trust has also been taking a more active role in advocacy and non-­‐financial supporting roles. It has held 2 health & wellbeing events bringing together experts in thalidomide impairment with beneficiaries to consult on physio, exercise and diet.

The National Advisory Council (NAC) is a body of twelve democratically elected beneficiaries. Its purpose is to advise the Thalidomide Trust on policy. Whilst the NAC does not represent the Trust per se, it does speak for the beneficiaries. Within our cohort, there is a very wide range of impairments. There are what might be termed the more familiar including blindness, deafness and mobility impairments. Thalidomide damage also includes a wide range of limb impairments; from complete lack of arms to arms shortened to elbow length or much shorter, with reduced digits and in many instances complete absence of a thumb.

As over 85% of those affected by the drug Thalidomide have some form of damage to their upper limbs, the NAC has worked very hard over past decades to have the effect of these particular impairments recognised.

One such example would be the Department of Transport acknowledging that this type of impairment warrants a blue badge, even though the individual may actually be mobile, because of their inability to operate car park and ticket barriers, hold on when using public transport, etc.

It is important to state that though thalidomide survivors are a small and sadly decreasing number of individuals, there are many other groups with upper limb impairments too; including those with congenital issues or traumatic injury (including veterans). The NAC are delighted that, historically, much of our campaigning has benefitted many other groups and individuals.

2. Question 7

In what ways do you think you could have made a valuable and constructive contribution to DWP’s work, and what would be the most effective way for the Department for Work and Pensions (DWP) engage with you?

2.1 Question 7 response

We would use personal experiences to think through how a policy or procedure would affect our lives in everyday terms – a policy maker without specific disabilities or life experience may not realise the specific impact of aspects of the policy or procedure.

We are able to bring a unique perspective and experience to the DWP’s work as we have spent many years understanding the impact of our own impairments and developing ways to address them. This is through our own practical determination to be independent, supplemented by research undertaken by the Thalidomide Trust. In particular, we have lifelong lived experience of how policy solutions for disability need to (and often fail to) take account of the impact of limb difference.

It is always useful to take a layman’s view to ensure that impacts are understood, the reasoning behind policies and ensure procedures are clear.

Engagement

Engagement with the thalidomide community should be through the NAC via Thalidomide Trust who are recognised as the expert organisation. We should be a key engagement partner due to the complex impact of the disabilities across our group and our lifelong commitment to independence. As a unique cohort moving into older age, we have an important perspective to input and a range of evidence and data to bring to the table.

There is a need for a variety of means of engagement to ensure the huge diversity of views from people with disabilities are heard. Ideally there should be disabled people employed within the DWP working and developing the policy itself.

More generally – For each consultation, the DWP need wide reflection on the appropriate impairment groups to be engaged.

All those developing the policy and procedures and all those gathering and consulting with disabled people should receive rigorous disability awareness training prior to consulting. This training needs to be kept up to date (i.e. repeated at appropriate regular intervals e.g. every 2 years)

Views should be taken for each policy by a variety of means:

Focus groups

It needs to be remembered disabled people need good advance notice of anything they need to go to – it is complex to arrange appropriate travel; e.g. If a disabled person needs to travel by train they may need to plan for necessary assistance or a personal assistant (PA) to come with them. Wheelchair users can only travel on certain trains as spaces for wheelchairs are limited. (NB Expenses should be paid for the disabled person and their PA attending the consultation).

Venues need to be suitable and checked by disabled people – for wheelchair access, accessible toilets, lifts, easy / adjacent parking with plenty of disabled spaces, good access to road and rail connections. Accessible taxis need to be available at stations. There needs to be liaison whilst planning an event with each attendee to gain full understanding of their specific access requirements. Sign language interpreters need to be available for hearing impaired individuals who use British Sign Language (BSL).

Guided questionnaires over the phone

These would elicit more information than a written questionnaire. Make use of services such as Sign live to ensure views of Deaf people are encouraged and heard.

Written questionnaires

Provide easy read formats for those who have some reading issues/learning disabilities – use of signs and symbols may be required. Braille questionnaires too.

Interview

Consultant visits a certain number of disabled people at home to do face to face questionnaire. Many more disabled people are likely to be able to participate if involved in this way.

The main issue needs to be around planning and giving enough time for any specific consultation. Consultation venues should not all be London based.

3. Question 8

Would you wish to engage with DWP in future? Please provide the reasons for your answer?

3.1 Question 8 response

Yes – impacts of recent benefit changes were not thought through, those liaising with disabled people did not necessarily have the skills and knowledge of impairments – need to ensure this does not occur.

The Thalidomide Trust closely supports over 450 individuals with a wide range of impairments and feels well placed to speak with authority on how disabled people can be best empowered to have their voices heard. Many disabled people have throughout the course of their lives been marginalised and disempowered.

Many disabled people are themselves the best source of ideas for methods that deliver the greatest benefit in the most cost effective way.

4. Question 9

What would be the most effective way for DWP to make sure you could engage with them?

4.1 Question 9 response

A range of approaches – see answer to Q7

Also, at the Thalidomide Trust, our Trust staff and NAC members have worked with the Department of Health and Social Care (DHSC) around the Thalidomide Health Grant.

Beneficiaries have attended meetings and shared their experiences of living with thalidomide-­‐impairments. Impact Reports including case studies and short video footage have been provided to evidence the positive impact of the funding of the Health Grant. As a result, DHSC staff we interact with have a really clear understanding of our issues and challenges and how their work relates to the end users of both policy decisions and administrative processes, including interaction and communication.

Based on this experience, we think there is a case for a wider number of, if not all, staff to benefit from something similar across all types of claimants? For example, in training sessions or resources, short video links to individuals telling their story or showing some practical difficulties they face and how they overcome these, can be included. For senior management or policy makers one might even recommend some claimants attend a training or special meeting to talk to those senior staff then do a Q&A.

We recognised these types of recommendations might add some costs initially, but these would represent an investment in human capital, and definitely improve the quality of the relationships between the DWP, claimants and their various representative organisations.

5. Question 10

Are there any areas or types of engagement that you would not have with the department?

5.1 Question 10 response

No, as far as we are aware.

6. Question 11

Please tell us about other engagement you have had on disability issues with public sector or other organisations outside of DWP? For example: Department for Transport

6.1 Question 11 response

Aviation 2050: The Future of UK Aviation: Consultation (May 2019).

Please explain the process for this engagement?

Written submission in response to on-­line consultation document.

7. Question 12

Do you have any suggestions to develop the process for you to be able to engage with DWP in future?

7.1 Question 12 response

The Thalidomide Trust would be happy to work with the DWP to develop the processes to enable its beneficiary group to be involved in the engagement procedure.

8. Question 13

What would be your minimum expectations of who the department should consult, and how that consultation should take place, to provide reassurance that decisions taken by the Department are well-­informed and credible?

8.1 Question 13 response

• All those leading the consulting process have had advanced suitable disability awareness training (delivered by disabled people) using video stories to demonstrate key issues that different disability groups face.

• Adequate timescale given for the consultation written into policy paper – explanation of why each consultation approach is used.

• A range of approaches are deployed – needs to be clear what the DWP has done to consult in any policy paper or procedure set.

• A range of impairment groups and individuals are consulted – again need to be clear why DWP has chosen to consult with different groups and how many have been consulted.

• Need transparency about what those consulted have said and if given advice has not been followed up, why this was.

9. Question 14

Is there any other evidence on this subject you would like to add?

9.1 Question 14 response

The Thalidomide Trust has produced a Condition Insight Report which has been forwarded to the DWP to inform Personal Independence Payment (PIP) assessors about Thalidomide impairment and its impact. This demonstrates how we have recently worked effectively with the DWP, and therefore are able to contribute constructively to any future consultation or engagement.