Consultation outcome

Motor Neurone Disease (MND) Association response

Updated 23 March 2020

If the Department for Work and Pensions (DWP) have engaged with you in the past, please answer the following questions:

1. Question 1a

Can you tell us about the process? How did DWP invite you to take part? How did DWP invite you to take part?

1.1 Question 1a response

The DWP has usually invited the Association to engage with it through being on several stakeholder email lists. However, this approach has not always led to consistency in being invited to things of relevance to us.

There have been occasions where we have had to fight to be a part of something with direct relevance to Motor Neurone Disease (MND). One such example was not initially being invited to take part in a stakeholder group to develop the Employment and Support Allowance (ESA) severe conditions exemption, which MND was a key condition for. We felt we had to really push our way onto that stakeholder group.

We are regular attendees of DWP stakeholder forum meetings and receive invites to those via the relevant forum inbox.

2. Question 1b

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

2.1 Question 1b response

We are typically asked to give feedback on proposals that have been drawn up by the DWP, based on our understanding of the needs and experiences of people living with MND. Some of the engagement meetings we have been to relate to higher-level discussions, such as Green Papers, and we have been asked for our input into the broader direction of travel in the welfare space. Most recently, we have been engaging with the Universal Credit (UC) stakeholder engagement team to provide feedback on their Move to UC proposals and UC service design more broadly.

3. Question 1c

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

3.1 Question 1c response

The positives generally tend to hinge on whether the engagement we have had leads to a positive outcome for the people we represent. For example, through engaging with the DWP on developing the ESA severe conditions exemption we now have a system that works for people with MND, meaning they will not have to undergo repeat Work Capability Assessments.

However, sometimes the engagement process itself is less than ideal. For the example above we were asked to sign a non-disclosure agreement. This meant that we were not able to consult further with our supporters and people living with MND to see if what was being developed by the DWP would meet their needs.

This form of engagement directly contradicted our own values to put people with MND at the heart of everything we do. It also implied a complete lack of trust. At the same time, crucial papers would be held back from being released to stakeholders such as ourselves until the very last minute before they needed to be discussed.

There were instances where the relevant papers were not released to us until after working hours had ended, the evening before a meeting to discuss the proposals was due to take place.

A more recent example of negative engagement with the DWP comes from not having been consulted on key changes that were made to the UC application process for terminally ill claimants, which would directly impact on people with MND.

The DWP changed the wording of the application question used to indicate whether a claimant has a terminal illness to one we believe is far more restrictive and very few people with MND would answer, despite living with a terminal condition. Although we have engaged extensively with the Department on the issue of terminal illness, they only consulted with cancer charities on the change of question.

This was incredibly disappointing, particularly because a question change was made and implemented in May 2019 and we did not find out about this change until December 2019. In the meantime, we believe people with MND have not been able to indicate they have a terminal illness when applying for UC.

Although the DWP agreed to meet with us to talk about the reasoning behind the change, there was no commitment to make the question better suit the needs of people with MND. We are now unsure of whether any change to the new question is likely to happen at all.

Going forward, we believe it is crucial that the DWP engages more broadly than with the bigger and more well-known organisations and condition groups, especially if the change they are working on has a wider impact.

4. Question 1d

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

4.1 Question 1d response

There have been occasions where accessibility standards have not been adequate. We have been present at a number of meetings hosted at the DWP, in Caxton House, where some attendees who were hard of hearing could not follow the meeting due to lack of working microphone. This has happened on multiple occasions.

5. Question 1e

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.)

5.1 Question 1e response

There has been a recent occasion where the DWP has asked specifically to engage with people living with MND directly, as part of the review into how the system treats people with a terminal illness. This was an incredibly welcome step and we are very pleased this happened.

However, we were disappointed that the DWP were only willing to hold a single meeting in London i.e. requiring people with MND to travel across the country if they wanted to participate. This took a lot of organising on our part in order to facilitate attendance.

6. Question 1f

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

6.1 Question 1f response

We have generally found this varies depending on the meeting and who we have engaged with. We do sometimes get the feeling that comments and feedback are collected and then we are not sure what happens following that.

On the other hand, there are quite clear examples of when we’ve given feedback and this has led to positive change.

7. Question 2a

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?

7.1 Question 2a response

There have been a few improvements for people living with MND following our engagement with the DWP. The most notable are the ending of repeat Work Capability Assessments for people with severe and progressive conditions, having participated in the severe conditions exemption stakeholder group.

Another is the introduction of ongoing PIP awards with a light touch review at the 10-year point, following our engagement with DWP officials on this issue as part of our Scrap Reassessments campaign for people with MND.

8. Question 2b

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

8.1 Question 2b response

Yes. Most recently the DWP has been good at providing feedback to stakeholders on their plans for the Move to UC process. There has been a much more formalised process of collecting feedback from stakeholders and then giving us feedback at a later point.

9. Question 2c

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

9.1 Question 2c response

This has tended to vary from one experience to the other. The most positive example of this recently has been in the Department’s engagement activities for the Move to UC programme, where they are now setting up an online platform for us to be able to comment on their prototypes and proposals.

However, there have bee other occasions where changes to service design have been made, that will directly impact people with MND, that we have not been made aware of until they have already happened. These instances have been incredibly frustrating.

10. Question 3a

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?

10.1 Question 3a response

For the Association the positives of engaging with the DWP tend to lie in being able to get up to date information on policy and service design. Through engaging, we also get to establish positive working relationships with civil servants and ultimately bring about positive change for people with MND. The negatives tend to be that engagement meetings are for a long duration and can take a lot of time out of our capacity.

From a reputational perspective, by engaging with the DWP we are sometimes accused of being fully supportive of the DWP and current welfare policy, which is not the case. For us there is a balance we need to strike in advocating for significant policy change, but also working to make the system as it currently is better for people with MND in the meantime.

11. Question 3b

Could the process of engagement with the department be improved? If so, how?

12. Question 3b response

As long as it is accessible, we believe there could be increased use of webinars as a mode of engagement, especially in instances primarily involving information sharing. This may also go some way in alleviating the difficulty of only having a limited amount of space for face-to-face meetings.

We also believe there could be improved mechanisms for reporting on how the feedback from stakeholders has been used and actioned. There may be learning from this to be had from the Move to UC stakeholder engagement activity.

We also believe there should be significantly increased efforts from the Department to engage with people with MND and other conditions and disabilities directly.

Contact: xxxxxx xxxxxxx xxxxxx xxxxxx xxxxxxx

13. About MND

Few conditions are as devastating as motor neurone disease (MND). It is a fatal, rapidly progressing disease of the brain and central nervous system, which attacks the nerves that control movement so that muscles no longer work. There is no cure for MND.

While symptoms vary, over the course of their illness most people with MND will be trapped in a failing body, unable to move, talk, swallow, and ultimately breathe. Speech is usually affected, and many people will lose the ability to speak entirely. Some people with MND may also experience changes in thinking and behaviour, and 10-15% will experience a rare form of dementia.

MND kills a third of people within a year and more than half within two years of diagnosis, typically as a result of respiratory failure. A small proportion of people experience slower progression and live with MND for longer, but survival for more than ten years is highly unusual.

A person’s lifetime risk of developing MND is up to 1 in 300. It can affect any adult but is more common in older people: it is most commonly diagnosed between the ages of 50 and 65. There are about 5,000 people living with MND in the UK, approximately 250 of them in Wales.

13.1 About the MND Association

The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer-led branches and 3,000 volunteers. The MND Association’s vision is of a world free from MND. Until that time, we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.