Consultation outcome

Multiple Sclerosis (MS) society response

Updated 23 March 2020

1. Introduction

Multiple Sclerosis (MS) is the most common disabling neurological condition affecting young adults, and new data from Public Health England shows that more than 130,000 people in the UK have MS, the equivalent of one in every 500 people as a UK average and this number steepens to one in every 300 in Scotland.

MS can be relentless, painful and exhausting. It’s a condition which damages nerves in your body, making it harder to do everyday things like walk, talk, eat and think. Symptoms can fluctuate, making life unpredictable. They can include loss of balance, stiffness, spasms, speech problems, fatigue, pain, bladder and bowel, and vision problems.

Living with MS is expensive. It costs, on average, an extra £200 a week to live with a neurological condition like MS. Most people are diagnosed between the ages of 20 to 50. We estimate that 130 people are newly diagnosed each week with the condition – totalling 6,700 people each year. MS affects three times as many women than men, and typically starts affecting people at pivotal times in their professional and personal lives.

The interruption to a person’s professional and personal life, coupled with the additional costs of a condition like MS means some people will need social care and welfare support to continue to live well independently. As a result, people with MS are often required to interact with the Department for Work and Pensions (DWP) to get the support they need.

We estimate the UK government spends over £1bn on various forms of support for people living with MS. Yet many people with MS don’t get the support they need from the NHS, social care or disability benefits to live independently, putting them at high risk of being shut out of society and making them harder to reach, engage with and listen to.

HM Office for Disability Issues recognises that ensuring disabled people can take part in research improves data quality; that failing to involve disabled people in research that concerns their experiences or to communicate research results in an accessible way could mean research alienates disabled research participants; and that it can be exploitative, if data is collected from disabled people, using pre-determined research questions that do not address the key issues they face.

Well thought through consultation and interaction methods that proactively engage and listen to people living with a long-term condition like MS are vitally important. To ensure government systems don’t fail the people they have been designed to serve and the issues people living with a disability face, don’t go unheard.

1.1 About us

The MS Society is the largest charitable funder of MS research in the UK and our goal is to see a world free from the effects of MS. We provide support and information for people affected by MS, and campaign for positive changes to welfare, social care, access to medicines and health services, more generally.

We are led by insights from people affected by MS and coproduction of our work with our community is at the heart of what we do, putting diversity and inclusion front and centre; making the most of digital, data and tech; and creating new ways of engaging and involving MS communities.

1.2 Our response

Our response is embedded in the views of the MS community. We shared this consultation through our social channels and with our ‘Experts by Experience’ group, all of whom live with MS, to give them an opportunity to provide their own responses.

Our responses below are set out on behalf of us as an organisation and are based on our experiences of involving our community in DWP engagement. We have answered the questions where we feel it is appropriate for us, as an organisation, to do so.

2. Question 1

Can you tell us about the process?

• How did the DWP invite you to take part?
• What information and feedback were you asked to give to DWP?
• What were the positives and/or negatives of your engagement with the Department? Explain this view.
• Did you find the process accessible?
• Did DWP request that they could speak with individuals and/or groups of individuals from, or represented by your organisation, to provide evidence (interviews, focus groups etc.)
• Did the DWP provide any comments on the advice or feedback that they received from you?
• Please share any other relevant evidence of engagement

2.1 Question 1 response

As an organisation the most common way we are asked to engage with the DWP is via consultations. It’s important that our submissions to consultations represent the views of people with MS and we feel it’s important to include case studies to illustrate the points we are making. However, properly consulting people living with MS takes planning and time to execute on a large scale, which does not lend itself to short periods for response.

The biggest consultation we took part in recently was the 2017 ‘Improving Lives: the future of work, health and disability’ green paper. We conducted an online survey that had 1,399 responses. This is a large number for us, which shows the strength of feeling around these issues. We also conducted in-depth interviews with people with MS to gather more information and case studies.

Our understanding is the overall response from those it affected, to this consultation, was not deemed significant in number and we weren’t consulted any further on this green paper. We would say that for such a large-scale exercise of engaging with charities and disabled people, the DWP failed to provide an adequate response to the submissions.

The knock on effect of this is that it becomes less meaningful for us as an organisation to consult with our community again on what might seem like a very similar issue to them, like the upcoming disability benefits green paper, as past interaction has shown a lack of recognition for their willingness and goodwill to engage and could appear tokenistic.

Other ways we are asked to engage/provide evidence is via stakeholder engagement groups e.g. Personal Independence Payment (PIP) Forum, Operational Stakeholder Engagement Forum (OSEF), Work Capability Assessment (WCA) reform and the Health Transformation Programme (HTP). For some of these, the DWP invite disabled people, but more often than not its charities that are asked to participate on their behalf. Most of our work involves presenting the DWP with evidence we have gathered from people with MS ourselves.

We find that the more we engage with the DWP on people’s behalf, the more we are invited to participate. For example, we will receive more invitations to smaller meetings with civil servants. This can be to push our specific recommendations with them or to help them by providing insights on people’s experiences with specific proposals e.g. WCA reform. Increased invites to participate have come from building a reputation on an issue and from building relationships with civil servants.

Without us having the capacity to engage, we are not aware of how the DWP would be ensuring the voices of people living with MS would be heard in their consultations.

On occasion the DWP contact us and ask us to help them get in touch with people with MS. Recently this has involved sharing details of workshops in specific areas, but the notice given by DWP is too short. The feedback we get from people with MS is that there is no way they would be able to attend with such short notice, but that they would really like to. There is no other option than face-to-face. The DWP could do much better at offering other channels of engagement, which would mean more people could participate, especially disabled people.

Additionally, when going ahead with face-to-face meetings, the DWP should always be mindful of the time of day of those meetings. Often, people who rely on a carer to get out of bed or to travel anywhere to participate in a meeting, may not be able to attend early morning meetings and are shut out of participation because of this.

More recently, ambitions around engagement do seem to be improving. We have a direct stakeholder engagement contact who we are able to meet with for updates and clarity on issues when there are no DWP events planned. We have also been asked to share details of our local groups and local staff who may be able to help facilitate workshops and focus groups around the country for people affected by MS with DWP.

This is a different approach – with disabled people saying when and where they can engage. However, we would still say that engagement directly with people with MS is low and doesn’t appear to be a priority.

It could be assumed the DWP trust us to represent people with MS with no ulterior motive than to act on what we hear from our community, meaning they get a wider representation than interviewing a smaller number of individuals. However, we would say that engagement should be both with individuals and with organisations like us.

3. 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?
• Has DWP provided feedback to you in improvements the department made as a result of engagement with stakeholders?
• Following your engagement, did DWP give you the opportunity to comment on draft proposals before final decisions were taken?

3.1 Question 2 response

The nature of our relationship with the DWP means conversations between us and various internal and external arms of the DWP take place regularly and sometimes includes having an opportunity to comment on proposals, but not as often as we would like to.

The benefit of engagement is the recognition that you are knowledgeable of people’s experience in an area and are then approached by others to engage in separate work on similar issues, perhaps to give evidence and/or attend more focused meetings that could have positive tangible outcomes.

We have seen engagement lead to tangible improvements to policies and practices, for example we have been instrumental in changes to PIP guidance and training, through regular meetings with civil servants.

Engagement and subsequent recognition that we are a voice in DWP policy areas has also meant we have been able to meet with the Minister for Disabled people on a number of occasions and to understand the Government’s position on policies that we want to see changed.

There have been occasions where no matter how much you engage on an issue and present the experiences of people with MS, there is little appetite for change or review. This can be difficult to understand for us and for our community. If the DWP is unwilling to accept strong and continual negative experiences of disabled people as evidence for change, it can be counteractive to a willingness to participate.

There are positive tangible outcomes of engagement, where the DWP is willing to allow that.

4. Question 3

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

• 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 by improved? If so, how?

4.1 Question 3 response

We are lucky to have resources at our disposal to ensure our responses to DWP engagement opportunities are robust. For example, we have access to evidence from reports and large surveys, as well as mailing lists of thousands of people living with MS, who we know want to engage with opportunities that might result in them getting the support they need.

However, a negative of engaging with the DWP can be the lack of trust for the DWP that exists within our community and with others. Engagement is a reputational risk that we have to balance, as we have in the past been told we are ‘selling out’ or having ‘too close a relationship with the DWP’. Working to influence or improve a proposal from the DWP so that it better reflects the needs of disabled people can sometimes be difficult to support in its final form, if it doesn’t go as far as we would have liked to see to protect disabled people.

Similarly, it can sometimes be difficult to put a face to the issues that DWP policies cause. A lack of trust has an understandable impact on people’s willingness to publicly act as case studies and present the reality they face. People often report living in the fear that if they say something critical of the DWP they may have their benefit award reduced or taken away at their next assessment, or before then.

This lack of trust has been compounded by recent reports of the DWP asking for the National Insurance numbers of case studies we have put forward in evidence to support consultation responses or in the press. For people who are struggling to get by, being open about their experiences is too high a risk and as a result, the DWP doesn’t get all of the feedback they otherwise would. This is not conducive to the development of evidence-based policy and accountability.

When we respond to consultations or enquiries we try to engage as many people with MS as possible and through giving them the option to respond to us, we can protect their identities. We aim to give people as much time as possible to share their experiences with us, and we try to find time to interview people, hold focus groups and find case studies. If we are able to do this and understand the benefits of doing so, we believe the DWP should be able to find ways to do the same.

We share surveys and consultations via our various channels – email, social media and in regular magazines – as one of the main issues for people with MS is a lack of awareness of DWP engagement. If the DWP is relying on us to share opportunities with our community, then we must be given more notice of when they are going to be launched, so that we can better prepare. This would allow us to offer other ways for people to participate, to share as widely as possible and to plan our own interviews and focus groups. We also require strong commitments that engagement won’t negatively impact the financial security a person with MS is receiving.

5. Question 4

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

• 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?

5.1 Question 4 response

We often respond to Work and Pensions Select Committee inquiries, as well as other arms-length bodies like SSAC consultations and National Audit Office (NAO) consultations. These opportunities are important ways to get our recommendations and the views of people with MS across.

For many of these, we use existing evidence and the expertise and knowledge we have built up through research and talking to people with MS. Where the timeline allows, we will contact our community for further views and insights. When a consultation clashes with another major consultation that involves the views of disabled people, it can force organisations like us to choose which one we should give priority to engaging people on. Whilst we will always share consultations with our community, we are aware that it can leave people feeling ‘not listened to’ when contacting them on similar topics in a short time frame.

The way we engage with arms-length bodies is similar to how we engage with DWP – it’s developed over time through relationship building and reputation. However, with Committees in particular, we are involved earlier in the process through relationships with Committee Clerks. This can mean we are able to help shape possible future inquiries and because committees are cross party, there are more avenues to raise an issue that people with MS tell us is important to address. In a sense, the government line isn’t the final say on what the Committee will look at, allowing for a more open accountability.

Similarly, we use the All-Party Parliamentary Group (APPG) for MS to draw attention to issues or begin inquiries on issues that aren’t being given air time through engagement with the DWP. We sometimes do this in partnership with other APPGS and will submit evidence to other APPG inquiries, which also benefit from having cross party representatives.

More should be done to co-ordinate consultations across government and arms-length bodies to avoid consultation clashes and repetition. And, more should be done by both the DWP and arms-length bodies to invite disabled people, in their own right, to respond to consultations and to give oral evidence on issues affecting them.

6. Question 5

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

6.1 Question 5 response

As mentioned above, some people with MS don’t trust the DWP, especially where there may have been past issues with their claim. This can mean they are reluctant to speak to them directly. This is a real barrier for the DWP in their ability to talk directly to people with MS. It also means that those they do speak to are more confident and are perhaps the least vulnerable, skewing the information they get.

Perhaps with the small improvements the DWP are making in bringing engagement out to people around the country this could change, but this will be a difficult issue to overcome. Having people that are trusted in the room will be essential, as well as some guidelines from DWP around how they will treat information shared in these sessions.

7. Conclusion

We are grateful for the opportunities that we have to engage with the DWP and believe that past engagement has had real positive outcomes for people living with MS. But, the DWP could go much further to ensure that engagement is always accessible, including by making the change to good virtual engagement systems that can be used instead of disabled people having to travel to participate. These systems should be tested by disabled people to ensure they are truly accessible and reasonable adjustments should be made to allow people to engage.

The DWP has been working to improve trust among people who need to interact with them, but there is a long way to go. The DWP should stop asking for National Insurance numbers of people who have come forward as case studies as it can be hugely scary for them and put’s the DWP in danger of losing the honest feedback that is vital to improve services and the lives of people living with a disability. The DWP should operate a policy that prevents insights drawn from consultative processes being considered in an individual’s claim or personal engagement with the DWP.

The DWP could give better warning of consultations and announcements, allow longer periods for people to respond, and give more insight in feedback around why they have or have not taken recommendations forward. This would improve our ability to engage on similar, but different, issues with our community in the future and for us to build the evidence that the DWP would choose to recognise, when experiences are not enough. This greater transparency of process and decision making will also facilitate better trust in the consultative process.