Consultation outcome

Macmillan cancer support reponse

Updated 23 March 2020

1. Question 1

Can you tell us about the process? For example:

• how did DWP invite you to take part?

• what information and/or feedback were you asked to give to DWP?

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

• did you find the process accessible? If you requested accessible formats or adjustments were these made available?
• [for organisations] 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.)
• did the DWP provide any comments on the advice or feedback that they received from you?
• please share any other relevant evidence of your engagement with the department.

1.1 Question 1 response

1.1 Macmillan Cancer Support is a registered charity providing information and support to people with cancer, including specialist support to people with cancer accessing the social security system.

1.2 In 2018, Macmillan’s face-to-face benefits advisers reached 140,982 people affected by cancer, and our telephone Support Line welfare rights team supported 25,152 people with cancer.

1.3 Macmillan therefore has a significant amount of insight and information on the impact of policy and process changes made to disability benefits on people with cancer. We share this insight with the Department for Work and Pensions (DWP) on a regular basis through a range of forums and channels.

1.4 Our engagement with the DWP tends to consist of invites to attend stakeholder events, which vary in size and scope depending on the issue. Examples include ad hoc workshops on Universal Credit (UC) – managed migration, consent, service design and communications – Work Capability Assessment reform, and the Health Transformation Programme, and regular stakeholder events including PIP Policy forums and Operational Stakeholder engagement forums.

1.5 We also engage more directly through meetings with officials on specific areas of interest for Macmillan. These meetings tend to be initiated by our team and usually involve us sharing our insights from our services about live issues or providing the perspective of people with cancer in relation to a specific DWP project. Recent examples include, meeting officials leading the evaluation into Special Rules policy, meeting officials leading the Disability Benefits Green Paper development, and meeting senior civil servants within the Universal Credit Programme.

1.6 We have also facilitated visits from DWP Ministers and officials to our welfare rights services, which provides useful insight into the issues faced by people living with cancer in relation to the welfare system, and how Macmillan supports them.

1.7 It is positive that the Department conducts regular engagement with organisations like Macmillan and that officials and Ministers are open to listening to input about how their policies and processes impact disabled people and people with health conditions.

1.8 Our engagement has allowed us to develop a better understanding of the work the Department is undertaking, and to provide insight into the current challenges people with cancer face and how these could be addressed through changes to processes or policy. Sharing this perspective with officials is valuable and should enable them to give consideration to the particular challenges people with cancer face with the welfare system when developing processes and policy.

1.9 There have been some areas where positive tangible outputs have resulted from our engagement with the Department (see section 2).

1.10 There have however been some challenges with engaging, including how the Department has presented this engagement externally. For example, cases where feeding back on an approach or product is presented externally by the Department as Macmillan having endorsed or co-produced it when in fact all our feedback had not been incorporated, or a case where an individual Macmillan employee’s feedback was presented to other charities as representing Macmillan’s corporate view. Presenting engagement in this way erodes trust and implies that engagement is seen by the Department as a ‘tick-box’ exercise.

1.11 The Department has on some occasions requested to speak with people with cancer who are supported by Macmillan, as part of their engagement programme. The most recent example was a request for organisations to coordinate focus groups to discuss proposals for assessment reform, ahead of the upcoming Green Paper. It is welcome that the Department wishes to hear directly from people with lived experience of accessing support from the welfare system.

1.12 To improve this process in the future it would be helpful for the Department to provide further detail to organisations at the outset on the scope, expected content and logistics (desired locations etc.) of engagement with people. This would have two positive outcomes.

1.13 Firstly, it would support the effective coordination and, if needed, facilitation of focus groups by organisations. Macmillan is a large organisation with a network of benefits advisers who have direct contact with people with cancer. Providing as much information about what the Department needs upfront would support us to establish what is possible quickly and work more efficiently with our locally based teams. This may be a less pressing issue for smaller, locally based organisations who have more regular direct contact with the people they support, and we would encourage the Department to also approach these organisations for this type of engagement.

1.14 Giving sufficient notice is also crucial here. There have been occasions recently where we have been notified of engagement events with short notice, which meant that by the time we were able to coordinate a Macmillan benefits adviser to attend the event was full.

1.15 Secondly, it would provide reassurance to colleagues and people with cancer who have less regular engagement with the Department. Whilst Macmillan’s central policy teams have positive working relationships with the Department, this is not always mirrored among our benefits adviser colleagues, or the people they support, many of whom are distrustful of the Department on the basis of their day-to-day interactions when processing claims. Providing detailed information and clarity about the purpose of engagement with people with cancer and how the insights shared will be used would help to build trust and goodwill with local colleagues, and people with cancer, and hopefully facilitate positive future engagement.

2. 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 on 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?

2.1 Question 2 response

2.1 The clearest example of tangible improvement following engagement with the Department is the development of a prototype within the UC programme to improve how people provide third party consent.

2.2 Macmillan, and many other organisations, identified challenges with the existing policies and processes around the explicit consent model within UC, which we fed back to the Department through a range of channels.

2.3 In response to this feedback, and in line with a recommendation made by the Social Security Advisory Committee (SSAC), the Department developed a prototype which will sit within the UC journal and is intended to allow claimants to provide consent quickly and easily.

2.4 The Department has conducted a number of workshops to gather evidence from organisations about the current challenges with the consent process and feedback on the prototype as it is developed. They have also sought to test the prototype with claimants and support services, including officials visiting Macmillan’s telephone support line Welfare Rights service xxxxx xx xxxxxxx.

2.5 We are continuing to monitor the development of the prototype and work with our advice services to understand if this new process would address the challenges faced by people with cancer. While prototype has not been implemented yet, the approach the Department has taken to engage throughout this process has been positive.

2.6 Our experience of receiving feedback from the DWP on changes made as a result of engagement or being offered the opportunity to feedback on proposals is mixed. Often, we receive feedback on the progress of initiatives that we have fed in to, but this tends to be more consistent from bigger programmes of work e.g. the UC or Health Transformation Programmes.

2.7 On smaller, more discreet pieces of work it can be harder to get updates, and, in some cases, decisions are made which change the direction or outputs of projects without us being consulted or informed. An example of this is a recent project we undertook with the Department to improve their communications products for people with cancer claiming UC.

2.8 The initial stages of engagement on this project were excellent. The Department ran two bespoke workshops attended by Macmillan and Maggie’s Centre, which gave Macmillan’s welfare rights advisers the opportunity to share feedback directly to officials about the challenges people with cancer face when making a claim and to work collaboratively to determine where improved communications could address these issues.

2.9 Following the second workshop it was agreed that officials would draft a bespoke product and share with us for comment. However, when we followed up after not receiving an update for a number of weeks, we were informed that the insight shared at the workshops would be incorporated into a broader communications product for people with disabilities and health conditions that was already under development within the Department.

2.10 We understand the rationale behind this decision to be that much of the information provided to people with cancer would be common across other health conditions and disabilities. We were concerned that this decision was made without consultation with us, particularly as the level of detail provided by Macmillan’s welfare rights advisers was unlikely to be included in a more ‘generic’ product. We were given the opportunity to feedback on the broader product but were not given sight of whether our feedback had been taken on board. The guide has not yet been published and we have had no follow up around whether a ‘bespoke’ product could still be developed, so to date it is difficult to say how positive the outputs of this engagement will be.

2.11 These examples illustrate that, broadly, the Department has shown itself willing to listen to claimant representatives advocating process-based solutions to operational challenges. While there have been some challenges around communication on these projects, the willingness of the Department to engage is positive.

2.12 This has not been matched by an equal openness to recommendations for policy change. Our engagement with the Department around policy has not resulted in tangible progress or outputs. Again, the issue around explicit consent is a good example, in that the Department’s response to concerns raised about the policy was to develop a process change to try and mitigate some of the impacts of the policy. There has been no movement on reviewing the policy itself.

2.13 When raising policy issues at one-to-one meetings, officials are often unable to give clear answers about what is possible. Similarly, at larger stakeholder events policy issues raised are often ‘parked’, with officials offering to take the issues away to discuss within the Department.

2.14 To date our experience of this has been that policy issues raised in this way are not followed up on, either to confirm that the issue is being looked at, or to explain that it is not being looked at and why. It is understandable that not all policy issues raised by organisations on the behalf of disabled people can be taken on board by the Department, but the Department could improve it’s engagement in this area by being transparent about why recommendations for policy change are not taken forward.

2.15 While acknowledging the political constraints the Department operates under when developing policy, it is not sufficient to engage disabled people and organisations representing them in the implementation of already agreed policies in isolation. Only by recognising the link between policy and implementation, and tackling both in a coordinated way, can the Department effectively improve the experience of disabled people and people with health conditions.

3. 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 be improved? If so, how?

3.1 Question 3 response

3.1 We will continue to engage with the Department to ensure that the voices of people with cancer are heard. We have built some positive relationships with officials at the Department and are regularly invited to contribute to workshops and forums which are valuable channels through which we can share insights from our services.

3.2 There are steps the Department could take to improve the process of engagement, set out below.

3.3 Expectation management. The Department clearly work within political and practical restraints when developing policy and processes. These constraints are well understood by organisations such as Macmillan who seek to influence politicians and policy development. However, the Department could improve how it explains these constraints when engaging with stakeholders, to more effectively manage expectations.

3.4 There have been occasions when stakeholders have been given the impression that there will be opportunities to co-produce solutions and the design of delivery, but this has not been borne out in practice. For example, when the Department launched the pilot of managed migration to UC there was a very open and honest workshop which raised expectations, but the Department has since failed to deliver in terms of genuine coproduction or meaningful follow-up. The following workshops have mainly consisted of updates, with minimal opportunities to feedback. Setting clearer expectations about the scope and purpose of engagement would help to avoid disappointment or frustration on the behalf of stakeholders who take time to gather and feed in their views and insights.

3.5 Communication. Improved communication within the Department about insight gathered through engagement with disabled people and organisations representing them would be beneficial, both to improve knowledge and understanding across the Department and to avoid duplication. Often, different engagement workshops and events involve stakeholders providing the same information or asking the same questions to different officials, and it sometimes appears that this is not shared more widely internally.

3.6 Consistency. There have been occasions where we have started off with good engagement with the Department on a particular project, and then we seem to drop off the distribution list for updates and are left in the dark about what is happening. Improving the consistency of communication would ensure those engaging with the Department have a better, more joined-up, experience.

3.7 Transparency. Engagement with the Department works best where we have built up relationships with officials. It can however be challenging to establish who is the best person to talk to about a particular policy or process issue, and to understand how different teams relate to each other. Providing key stakeholder groups with high-level organograms and responsibilities of different teams would improve transparency and enable engagement to be undertaken more effectively and efficiently.

3.8 Similarly, while it’s welcome that we are asked to be involved in engagement activities, the Department do not always make clear how the various events relate to each other or what broader projects they are feeding in to. Giving organisations a better idea of the bigger picture would put us in a better position in terms of managing our time and determining who within our organisation is best placed to get involved.

3.9 Trust. The Department must take care to ensure it accurately represents engagement with disabled people, and with organisations such as Macmillan. As highlighted above, it is concerning when the Department seeks to represent engagement as an endorsement of a particular policy or process. This approach is not conducive to effective and rigorous engagement, or to building positive relationships on which meaningful engagement can be built in the future.

4. 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?

4.1 Question 4 response

N/A

5. Question 5

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

5.1 Question 5 response

See above.

6. Question 6

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

6.1 Question 6 response

N/A

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