Consultation outcome

See Me response

Updated 23 March 2020

See Me is Scotland’s national programme to end mental health stigma and discrimination. Our vision is to enable people who experience mental health problems to live fulfilled lives.

We are working to change negative behaviours towards mental health, by creating a movement for change, bringing people together all over Scotland who are all passionate about tackling stigma, to work as one. Currently we have nearly 10,000 people signed up, including supporters, volunteers and champions, who are leading the way in making real changes in communities across the country.

We want to change the culture around mental health so people feel confident enough to speak about how they are feeling and can ask for help if they need it, without the fear that they will be stigmatised and discriminated against. To do this we are targeting key settings where people face stigma and discrimination; in work, education, health and social care, and in their local communities.

1. Surveying people with lived experience of mental health problems

In response to the Social Security Advisory Committee’s call for evidence See Me ran an anonymous online survey between 30 March and 4 April 2020 for people with lived experience of mental health problems to share their experiences to date of engaging with DWP, and offer suggestions for how engagement with disabled people could be improved. Only the most relevant questions were selected to be included in the survey. The survey was disseminated through See Me’s social media platforms and networks, and shared directly with volunteers and partners.

This call for evidence response summarises the experiences and feedback shared by the 83 people that responded to the survey; of which 9 engaged with the Department for Work and Pensions (DWP) in formulating policies and processes.

See Me welcomes the Social Security Advisory Committee call for evidence, but would ask that in the future the consultation period is long enough to ensure that people with disabilities are able to respond, and seek support if they need to. A longer consultation period would allow for other agencies to create the conditions for disabled people, including those with lived experience of mental health problems, to engage in the process in a way that is safe, engaging and timely.

See Me would also ask that disabled people are engaged in the development of consultation documentation, including proposals and questions, as well as processes.
This will ensure that the consultation is designed and implemented in ways that suit people with disabilities, whether these are related to physical or mental health, and minimise any risk of stigmatisation and/or discrimination.

2. Profile of respondents

Of the 83 people that responded to the survey, 16% (13) are currently See Me volunteers (i.e. people with lived experience of mental health problems) and 2% (2) volunteered for See Me in the past. At least 57% (47) of respondents consider themselves ‘disabled’ under the Equality Act (2010), and 31% (26) do not. 10% (8) of participants preferred not to say, and 2% (2) did not know.

In terms of experience of engagement with DWP in formulating policies and processes:

• 10% (8) of respondents have engaged with DWP for this purpose.

• 90% (75) of respondents have not engaged with DWP for this purpose.

If DWP have engaged with you in the past, please answer the following questions:

The following responses are based on feedback provided by 9 participants, including 6 disabled people.

3. Question 1

Can you tell us about the process? For example how did DWP invite you to take part?

3.1 Question 1 response

Invited by third sector organisations to take part in consultation meetings and events, some of which were local and did not feed into national/UK policies or processes.

The 3 organisations mentioned are:

• Scottish Association for Mental Health
• Flourish House
• Stigma Free Lanarkshire

4. Question 1a

What information and, or feedback were you asked to give to DWP?

4.1 Question 1a response

• Information on the importance of tackling mental health stigma and discrimination.
• Mental health, PTSD, Nervous Disability, Rare Sinus Disease.
• About how interviews for health affect disabled people.

5. Question 1b

What were the positives and, or negatives of your engagement with the department? Can you explain why you have this view?

5.1 Question 1b response

Positives

“Everybody was engaged.”

Negatives

“Policies are implemented nationally making some of the work more challenging.” “I do most of the form filling myself. Need a co-worker […] to attend with me assessment interviews as everyone goes through awkward with my nerves.” “Stresses me out, panic that I will lose everything.”

6. Question 1c

Did you find the process accessible? If you requested accessible formats or adjustments were these made available?

6.1 Question 1c response

Only one participant found the process accessible, 2 participants said they ‘don’t know’ and 6 others did not comment.

One participant said that no accessible formats or adjustments were needed, however, 1 participant said that some were needed but didn’t feel like could ask.

7. Question 1d

Did DWP request that they could speak with individuals and/or groups of individuals from, or represented by your organisation, to provide evidence (i.e. interviews, focus groups, etc.)

7.1 Question 1d response

The survey did not include this question.

8. Question 1e

Did the DWP provide any comments on the advice or feedback that they received from you?

8.1 Question 1e response

One participant said feedback was received; however, 2 participants did not receive any comments on the advice or feedback they provided.

9. Question 2

To what degree have there been benefits from engaging with DWP? Have you seen any tangible improvements to policies or practices for disabled people following your engagement with DWP? If so, could you set out what these are? If not, what were the tangible improvements that you expected to see?

9.1 Question 2 response

Of the 3 people that responded to the question, two didn’t know, and one had a positive response saying that tangible improvements “in relation to staff well-being within DWP but only at the sites we work with, not nationally” were seen.

10. Question 2a

Has DWP provided feedback to you on improvements the department made as a result of engagement with stakeholders?

10.1 Question 2a response

Of the 3 people that responded to this question, only one said feedback was provided but did not offer further details.

11. Question 2b

Following your engagement, did DWP give you the opportunity to comment on draft proposals before final decisions were taken?

Three people responded to this question; one respondent said that no opportunity was given to comment on draft proposals before final decisions were taken, and 2 do not remember whether they were given the opportunity.

12. Question 3

Based on your experiences, would you wish to engage with the DWP in future?

12.1 Question 3 response

Three participants agreed that, based on their experience, they would engage with DWP in the future. When asked why, 1 of the participants said: “As we can break down the myths around not believing mental health is a problem.”

13. Question 3a

What do you see as the positives and negatives of engaging with DWP, based on your experience? Would you engage in similar circumstances in future? Could the process of engagement with the department be improved? If so, how?

14. Question 3a response

Three participants thought the process of engagement could be improved, particularly around accessibility of language and format and support mechanisms: “Considering the amount of clients from areas of deprivation with low academic literacy the language used in these kinds of communications is not easily understandable for all.” “More doctors or nurses who understand.”

15. Question 4

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

• please explain the process for this engagement?

• how did it compare with the way in which the department engaged with you? What were the similarities and, or differences?

15.1 Question 4 response

The survey did not include this question.

16. Question 5

In your view, can the DWP’s process of engagement be improved and, if so, why and how?

16.1 Question 5 response

Please refer to question 3.

17. Question 6

Is there anything else you wish to add about this subject?

17.1 Question 6 response

Only 1 participant commented: “The can make me feel like I’m useless and worthless. Wish they would stop judging us on how we look.”

18. Question 6a

If DWP have not engaged with you in the past, please answer the following questions:

The following responses are based on feedback provided by 89% (74) of the participants, including 36 disabled people.

18.1 Question 6a

When asked why they have not engaged with DWP in formulating policies and processes, 85% (44) of respondents said that they haven’t been approached by DWP for this purpose, with 15% (8) of respondents citing other reasons such as: lack of trust, lack of motivation, fear of repercussions, and feelings of dislike.

19. 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 DWP engage with you?

19.1 Question 7 response

Please refer to question 9.

20. Question 8

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

20.1 Question 8 response

48% (25) of respondents that answered this question said that they would wish to engage with DWP in the future:

“to share my views.”

“to work positively to share experience so that it may contribute towards policy-making.”

“if it was an issue I felt I could contribute something to, I’d like to engage.”

“I support women and children through domestic abuse and support them to recover from the severe long term impact this has on their mental health. I feel strongly that they should be supported to let their voice be heard.”

10% (5) said that they would not wish to engage:

“I have no need to engage with DWP.“

“Manager of our project would undertake this.”

“They make me ill.”

“Because I live in Scotland and the Scottish Government will be taking over Disability benefits in September. I am already on the Scottish Social Security panel.”

42% (22) said were undecided:

“I am very cautious about that.”

“Depends on time commitment.”

“Not sure what they will ask you to do or how much commitment is needed.”

“Not entirely sure what that might entail.”

“I work with women within the Domestic Abuse field and have seen the difficulties and distress the current process incurs.”

“I hesitate to say a definite yes because I am sometimes not well enough to keep to commitments. However I think I have enough experience of dealing with the DWP that I might be able to make a useful contribution.”

“Only those who have lived experience can truly comment on the best way to improve situations, circumstances.”

“Only in terms of changing the way they “work.”

“I have major issues with how I have been treated by staff members in the past to the point where I do not sign on even though I am unemployed. My family help support me when they can, which is greatly appreciated but is also very demeaning. I find it far too stressful as it has a major impact on my mental health.”

“I do not know what to say or how to explain myself I do not understand.”

“I work directly supporting people with a disability to access employment.”

21. Question 9

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

21.1 Question 9 response

57% (47) of the participants responded to this question:

“Direct invitation to take part: text, e-mail, phone call, video call, social media calls, etc.”

“By posting information on social media about this. Also, perhaps if DWP has records of disabled people/ people receiving benefits for long-term health reasons, these people can be contacted by email or mail and asked to engage (in the same way that people with certain health conditions were recently sent letters about COVID-19). Engagement would be easiest by online survey and, if more in-depth consultation was required, by phone or video call.”

“Email so I could share with contacts who have lived experience.”

“Ask carers as well as actually talking to people with a disability.”

• Surveys (digital or paper copy)
• “Surveys and notified when they are looking at policies and processes. Not easy to find out about them.”
• Anonymous evaluation forms/questionnaires
• Focus groups
• Interviews
• Workshops

Meetings:

“Having meetings to discuss those policies/processes and in person or online - also in addition using an interactive form online which could get feedback from.”

“More active contact with 3rd sector and independent support agencies along obviously with service users.”

Consultations:

“Community based consultation using plain English and ordinary language…no jargon.”

“Helping me understand what they mean by what they are saying.”

“Send paper copies of proposals they would like me to comment on.”

“Regional Anonymised Consultation Process.”

“More public dissemenation of planning to make changes and consultations.”

Third party invitations:

“Through third party like the doctors and health care professionals and workers and voluntary services, in a survey like this.”

“Further consultation such as this with agencies that work with people who are caught up in having to depend on DWP often due to often no fault of their own.”

“Creating local consultations inviting Women’s Aid organisations to participate and give feedback from our experiences and the families we support. Advocate for families in a non stigmatic or discriminatory way.”

“Through organisations like See Me and SAMH.”

Informed, able and confident staff leading the engagement:

“They could try listening to disabled people. They could also get rid of Atos and the other two companies doing assessments and take notice of what doctors and consultants report. Most of the people doing assessments are not qualified to make an assessment of the conditions they are confronted with. Anyone with any kind of medical qualification and even a few who have failed their finals are employed by these companies. A paediatric nurse is not qualified to judge an older person with any physical disability. And most of them make inaccurate statements anyway.”

“Be human, kind, caring and well trained.”

“To speak to you about it and take your suggestions seriously. Also a change in their attitude regarding the unemployed.”

22. Question 10

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

22.1 Question 10 response

The survey did not include this question.

23. 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: please explain the process for this engagement?

23.1 Question 11 response

The survey did not include this question.

24. Question 12

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

24.1 Question 12 response

52% (43) of the participants responded to these questions and provided the following suggestions:

Involving disabled people from the outset, and maintaining the engagement throughout to show accountability:

“Bring disabled people in right at the beginning. Hold meetings with disabled people.”

“Support with impact on benefits of various activities.”

“Ask claimants opinion and experience.”

“[…] Accountability, i.e. seeing they have actually collated info and made changes, and are intent on making further changes based on published statistics.”

Adopting a person-centred, holistic approach

“Listen to what your claimants tell you. Very few of us lie about our conditions. Take account of all medical diagnoses, when we have multiple diagnoses they impact upon each other frequently but this is not taken into account. A lot of these conditions are not even taken into account at present. Get assessments from patients, GPs and consultants, but remember some of us have been discharged from consultants back to GPs as they can do no more for us at present, or ever. Have disabled employees working on disability benefits up to decision maker level and let the decision makers do the job without strict limits on numbers being allowed. If claimants have to have face to face assessments more of these should be done in the patient’s home. For many of us it is extremely difficult to get to the centres and stress levels go up considerably which has a severe knock on effect for weeks.”

Maintaining anonymity and contact throughout the process

“It has to be totally confidential as trust is a big issue, through trusted third party services. Maybe do it with these surveys.”

“I live in fear of them. They have caused me much unnecessary suffering and, therefore, the process would have to be done anonymously.”

“Maintaining my anonymity as I have found the benefits system punitive in the past.” “To keep in contact by email for surveys etc.”

Social media depository of engagement opportunities

“On top of running individual, time-limited public engagement campaigns for specific policy issues, I think it would be helpful if DWP had at least one social media site where opportunities for engagement were constant. For example, DWP could employ a data analyst to go through comments on twitter and thematically code them to get an idea of what the public actually thinks. This would make the public feel more engaged, as currently, we have to email our MP with no guarantee of a reply, wait for a specific opportunity to fill in a survey, or tweet randomly at politicians in hope that they’ll see. With this new system, we would know where to engage with DWP and be able at any point in time to suggest things decision-makers may not have thought of.”

Focus groups

“If focus groups were created then DWP would know they have committed individuals who have opted into the process. The focus groups could be geographically spread and occasionally they would work with smaller groups within their locale.”

Surveys

“Multiple choice surveys are useful as long as they have additional boxes to put our own thoughts in if the multiple choice does not answer what we want to say.”

Supportive and transparent process

“Using text messaging and email, live online chat - Also create a step in the process where advocates, key workers we use for help can have an active input.”

“Because I have not received benefits in over 40 years, it would be helpful for me to have readily digestible information regarding the aims of the DWP and what it is that they’re seeking to develop with the participation of people such as me.”

“Need more info and time before offering engagement.”

“To be invited to local consultations, forums, meetings, etc. Provide support to woman to enable them to attend.”

“They need to have a way for people to find out and then access where appropriate to help engage. if not for see me I would not have known about this.”

“Send out information about the process and how valuable the input can be.”

Change in attitudes and perceptions

“A major change in their attitude towards people with unseen disabilities and a course on people skills would be a start.”

Disclosure

“Full disclosure of all instructions to staff.”

“Having our experiences of the difficulties and hardships our service user go through highlighted through consultations. This allows real experiences to be highlighted and taken into consideration and policies put in place to address these.”

Engagement with third sector organisations:

“DWP to Target these agencies directly.”

“See Me could develop a panel of representatives from each Scottish region to collate their personal experiences/ideas to decide which topics should be focused on. These topics/questionnaire/survey could then be disseminated through 3rd sector and public sector disability groups/organisations to garner people’s feedback.”

“Be guided by the voluntary sector working with disability especially peer led ones. They will be able to help in designing a process to encourage maximum input from disabled people.”

“To have a third party, like See Me, to facilitate engagement. That would make me more comfortable with it.”

25. 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?

25.1 Question 13 response

51% (42) of the respondents answered this question and provided the following comments:

“I would expect DWP to consult with organisations such as See Me, SAMH, MIND, and also with people like myself with lived experience. Ideally these consultations should take the form of face-to-face meetings but where this is not practicable then some form of online communication would be acceptable.”

“I would like them to issue anonymous but quite wide ranging questionnaires.”

“A percentage cross section of society covering a variety of disabilities.”

“I expect them to consult with me first and also key workers from services (especially charities) that I engage often with.”

“All agencies along with the clients accessing the benefits.”

“They should consult with the people who are the most affected by their decision making and it should be away from any job centre as just being there could trigger anxious and/or negative thoughts & feelings.”

“Minimum expectation is they listen directly to the people affected. Too many national organisations bring seen as the voice if suck a d disabled when there is a conflict if interest for those bring funded by Govt depts… big organisations especially charities are silenced due to them but wanting to risk their funding and paid positions.”

“There’s a saying disabled people use “not about us without us”. All disabled groups and campaigners for disabled rights should be included but the general public should be consulted as many people would answer anonymously that maybe wouldn’t come forward.”

“Regular stakeholder engagement with service users. Regular sampling of the views of service users, say quarterly anonymous questionnaires of 1% of all service users - disabled, unemployed, pensioners.” “To speak to people who have direct experience of using the DWP service or people like myself who have experience of supporting people who have direct experience of using DWP.”

“Consult with people who have lived experience.”

“They should be consulting with the national disability organisations, 3rd sector and public sectors across Scotland.”

“All bodies like charities who represent those whom they are meant to serve, and a large randomly selected number of previous and current beneficiaries.”

“Listen to people that see my difficulties and listen more to medical professionals who know me and my difficulties.”

“Claimants and their support services.”

“Bi monthly.”

“Listen to people with lived experience of mental health problems talk to trusted third party organisations who can consult with higher up members in government like Clare Haughey minister for mental health.”

“I think that the DWP needs to consult with people in every group that either needs/has benefits, or people such as myself, with a disability but not needing benefits at the moment, not hopefully ever!”

“Those who have real experience directly or indirectly of the issues.”

“Mental health organisations who can assist users of their service to respond.”

“DWP should consult with as broad a range of disabled people as possible and not focus on one type of disability for each area. For example, mobility is often confined to those using wheelchairs, but there are lots of people who have mobility issues that aren’t covered by that. Minimum expectations are a realistic timescale for consultation, appropriate methods / venues etc and a clear reporting back strategy.”

“To consult with all those who haven’t been able to gain employment due to health/divisibility related issues.”

“An easy to understand claim form with fewer questions. Presently there is a lot of repetition. Consultations in the claimants home and at a time that is achievable. A 99 am appointment us far too early for some older claimants who have trouble actually moving in the morning. Consult with and take account of gp’s and consultants, which would mean DWP actually contacting these people which they do not do at present unless forced to. It is left to the claimant to get evidence which they can often not afford to pay for. Only use fully qualified doctors with experience of the claimants conditions for any face to face assessments.”

“DWP should first and foremost consult with as many disabled people as possible on policy issues surrounding disability. They should also consult with disability charities and advocacy groups for a more extensive review of the issues.”

“Regular face to face consultations in every locality, they do this to every one of us, published results of questionnaires with follow up action taken, on a regular basis.”

“I would expect DWP to consult locally with agencies that are working directly with people who have mental health conditions. I would expect DWP to consult with individuals directly, who have mental health conditions.”

“They should speak to a cross-section of relevant bodies and people. Having looked at some previous they appeared to only have spoken to a couple of small organisations leaving the majority without a voice. They also seem to miss the lay person in the street.”

“Talk to people that their decisions affect.”

“Consult with service users.”

26. Question 14

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

26.1 Question 14 response

51% (42) of the respondents provided further comments, including:

“Just please that there appears to be consultations taking place. I just hope this is not a boxticking exercise or that it is tokenistic.”

“Listen to us instead imposing from on high come down to our level.”

“The DWP have improved their approach to people with disabilities over past couple of years however the continued use of private companies to complete the medical assessments is a big negative. Despite claims to the contrary these assessments (I have attended dozens of them) or often rushed and dismissive of clients health issues and disabilities.”

“There is far too much I could say so I’ll just say that until attitudes change with regards as to how unemployed people are viewed then I don’t see anything changing, we’re treated as the enemy.”

“Why don’t you engage with grass roots community based charities on the frontline instead of “umbrella” corporate charities??”

“Disabled people should be treated with dignity and respect, not vilified as the press and current UK government are doing.”

“Restructuring Universal Credit to facilitate people getting back into work. At present its’ focus primary focus is to create a job creation scheme to employ low skilled admin officers. The money could be better allocated to increasing benefits.”

“Face to face assessments should be conducted by relevant specialists e.g. mental illness should be assessed by a mental health professional.”

“People struggle with contact due to mental health issues cannot often understand the terminology in letters and are frightened and afraid.”

“I don’t trust the DWP because they have always treated people with mental illness appallingly, it would take a lot for me to trust them.”

“I believe that it’s absolutely vital that agencies such as the DWP have an understanding of the lived experience of people who have benefits. Friends and family in that position have related to me a number of real horror stories about their interactions with the DWP in one context or another. The ways in which some of my friends and family have been treated by DWP employees has been totally unacceptable and this needs to end ASAP.”

“DWP needs to be able to demonstrate that the consultation has impacted on their planning and implementation processes.”

“More work needed to support all who are wanting to work but the facility/system doesn’t support them …eg ESA assessments.”

“I worked for DWP. It is unlikely any of these suggestions will be taken into account. People in Westminster make the rules and lay down strict guidelines on what DWP staff can and cannot do. The people in Westminster have no qualifications whatsoever to make decisions about health matters but they tie the hands of those who do. I live in Scotland and have been on the Scottish Social Security Experience Panel for at least 2 years now. We are consulted and our opinions taken into consideration already, before each benefit is put into place. The English parliament should do the same.”

“They need to be accountable for their actions as much or more so than those on the receiving end of existing policies.”

“The impact domestic abuse on women’s mental health is significant causing PTSD and can take years to recover, if ever. I would like DWP to work in any way they can to engage with people whose disabilities are mental health conditions, in a non-stigmatising and/or discriminatory way.”

“If it was not for organisations like See Me and Mind mental health is missed and appears unsupported by the government and their departments. This is also true of other long term disabilities.”