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Meeting held on 10 March 2025: summary and actions (HTML)

Updated 4 July 2025

Meeting summaries outline topics discussed by the Minister for Social Security and Disability and the Disability Unit Regional Stakeholder Network chairs. These summaries do not reflect UK government policy unless specifically stated.

1. Attendees

Minister for Social Security and Disability, Rt Hon Sir Stephen Timms MP

1.1 RSN chairs

• Justin Donne (East Midlands)
• Louise Mckiernan MBE (West Midlands)
• Marc Goblot (Greater London)
• Sam Everard (South West)
• Ali Gunn (North West)
• Karen Hoe OBE (Yorkshire and the Humber)
• Chloe Plummer (South East)
• John McDonald (North East interim chair)
• Carl Suckling (East of England – deputising for Anne Wafula-Strike MBE)

1.2 Also in attendance

• David Bateman, Head of Stakeholder Engagement, Disability Unit (DU) Cabinet Office
• other officials from DU and the Department for Work and Pensions (DWP)

2. Discussion points

2.1 Updates from Minister for Social Security and Disability, Rt Hon Sir Stephen Timms MP 

Minister Timms welcomed the RSN chairs and congratulated Sam (South West) on her Zero Project Award for her charity SAMEE’s Supported Self-Employment Internship programme. 

He thanked chairs for their feedback on the employment support theme at the last meeting on 9 December and the detailed written feedback that was sent afterwards. Minutes from the meeting will be published on GOV.UK once the alternative formats are ready. 

He told the chairs that the government is continuing to progress the commitments set out in the Great Britain Working white paper. Work continues to engage with key stakeholders including Mayoral Strategic Authorities, the devolved governments and employer representatives to collaborate on the design and delivery of the reforms. Trials are being undertaken on the new jobs and careers service, testing impacts of engagement with Jobcentres. Local areas are also being supported to develop detailed and robust youth and inactivity trailblazer plans in readiness for launches throughout spring 2025. Sir Charlie Mayfield’s Keep Britain Working independent review is looking at what employers can do and there will be an interim report published in spring 2025.

The government has announced that 1,000 existing Work Coaches will be deployed in 2025 to 2026 to deliver intensive voluntary employment support to around 65,000 sick and disabled people – helping them to break down barriers to opportunity, drive growth and unlock the benefits of work. 

The government is committed to reforming the system of health and disability benefits and is developing proposals for reform, which will be set out in a Health and Disability green paper in spring 2025. A full consultation will be launched on this and we really want to hear from disabled people and representative organisations on their thoughts on the proposals once out.

2.2 Thematic discussion: feedback from RSN regions on welfare reform

RSN chairs’ meetings with the minister are based upon specific themes, as set out in a forward plan. Minister Timms asked chairs to share feedback from their regions and members on the welfare reform theme. DWP officials were also in the meeting to capture this feedback. Chairs will send more detailed feedback to the DU, which will be fed directly to DWP officials working on the green paper.

RSN East Midlands

Benefit reform speculation is causing anxiety – fear around people being pushed back into work and the risk of losing financial help. Feeling that decisions are often made by people with no real experience of disability. Those able to work (with support) don’t want cuts to Access to Work. Worry that some people would be adversely affected by being pushed into job seeking. The key is to unlock more flexibility in the way benefits are administered and on eligibility criteria. Cliff edge – entering paid employment versus the safety net the benefit system provides. Benefits trap – evidence of young people with complex disabilities undertaking supported internships and finding they are able to work, but their families are discouraging them from finding a job through fear of losing benefits.

Minister Timms commented that the green paper will be published soon, which will give clarity, and that he would be grateful if chairs could encourage their regional network members to let the government know what they think of the proposals as part of the consultation.

RSN West Midlands

General fear around welfare reforms. Need for clarity of Personal Independence Payment (PIP) being a disability rather than work-related benefit – media speculation means there is a fear that this will be lost. Some disabled people report negative and dehumanising experiences of PIP application and assessment processes. The PIP appeals and mandatory reconsideration processes need to be reviewed – many appeals won at tribunals (learnings and savings could be made). Need to stop reassessing claimants with permanent health conditions (remove stress and lead to savings). People being moved onto Universal Credit report that they found the process stressful and feel bullied or forced to apply for unsuitable jobs where no skills matching has been done – many of these organisations aren’t part of the Disability Confident scheme and don’t understand reasonable adjustments. Hopes that the proposed Jobcentres review to look at a careers based service would look to address this. Need to simplify the process to undertake work trials or placements to offer more flexibility and remove barriers.

Minister Timms asked for any case studies of Jobcentres forcing people into unsuitable work to be sent in their detailed feedback.

RSN Greater London

Concerns about signalled PIP cuts and links between PIP and the ability to work or care – cost of living concerns. Being able to report changes of circumstances (not needs) is really difficult – only via phone which can take forever, especially when there are rules about how long people have to report. Issues with people with life long disabilities (who will never be able to work in a regular way) being reassessed – stressful and a huge waste of money. Some disabled people report the feeling of constantly having to prove your disability and needs – there should be a passport to evidence conditions that won’t change that can be used across the government. Concern around overlapping benefits for disabled people who are also carers with direct payments perhaps involved. Issues around unpaid carers. Eligibility for Carer’s Allowance isn’t designed for self employed disabled people or carers (who often chose self employment to offer flexibility). 

Minister Timms said work is happening on avoiding overpayments of Carer’s Allowance. The self employment point should also be looked at.

RSN South West

Some members didn’t want to attend the regional meeting due to the stigma and fear around this subject. People shouldn’t need to be reassessed when they will never get better (for example, if blind). Universal Credit coaches have a lack of knowledge around the daily challenges faced and people feel wary of trying to explain things to them. Issues with backpayments impacting benefits. People worried about redundancies and getting benefits if needed. Blue badge end dates match PIP assessment end dates, but PIP delays cause issues and long processes for blue badges. Worry over whether PIP will become means tested and impact those working. Some DWP forms are difficult for people with learning disabilities to fill in and some people report that they are having to pay privately for someone to fill in forms on their behalf. Unable to access some forms on screen reader, which is a problem if blind.

RSN North West

Concerns around what the proposed changes may mean due to media coverage. PIP assessments don’t acknowledge fluctuating conditions. Reassessing those whose condition hasn’t changed isn’t a benefit to anyone. Forms are not always accessible, especially for those with learning disabilities – support is needed. Parents of children with complex or life limiting conditions find the PIP process complex and worry about any transformation into new benefits – they want an easier process to get the support they need.

RSN East of England

Stress caused by media speculation – people live in fear of receiving a letter about life changing benefit cuts. The media uses words to weaponise – disabled people are often portrayed as “shirkers or spongers who play the system”, which is incredibly unfair – counter messaging is needed. Challenges in completing benefits forms (especially if poor literacy) – need to increase advocacy support (for example, from charities), but it’s hard for them to keep up with demand. Application processing or assessments waiting times delays – Access to Work can be 30 weeks and payments take 20 working days or often longer. The assessment process is depressing – disability is complex, conditions can be worsening or can be for life and people feel they have to tell the same story again and again to emphasise how difficult life is and what they can’t do rather than what they can. Continued support needed for the vital role of unpaid carers. Disability can come suddenly to anyone – support is needed for employers to be equipped. Wide ranging issues with moving people from benefits into work – there isn’t one fix for all. Access to Work has enabled Carl himself to work for the last 15 years and his experiences with staff have been positive, apart from delays. 

Minister Timms would welcome ideas on how to make the processes less traumatic for people. Access to Work delays are due to a huge surge in applications and although some work has been done to respond to this, we need to look at the scheme.

RSN Yorkshire and the Humber

Issues with the Universal Credit migration process – lack of staff experience, empathy or knowledge of complex multiple disabilities – also language barriers if English isn’t a first language. Lack of continuity of employment support with a high staff turnover (having to repeat things can impact people’s mental health) – extra Work Coaches being deployed soon is welcomed. Unfair assessment processes where medical evidence is provided showing incurable or life limiting permanent conditions and some conditions not being recognised by NHS guidelines. Fear of assessment processes – fear of letters arriving and the overwhelming potential impact both emotionally and financially of having to go through the processes again can be traumatic. PIP – there are millions of disabled people in work, but it is different being well enough to work versus people facing extra costs to maintain this work – employers need to be better at recruiting disabled people and need educating to understand that disabled people want to work but may need assistance to enable this. 

Minister Timms commented that DWP has made some progress with reassessments with light touch, 10 year reviews offered for some people and so would welcome case studies when detailed feedback is provided. DWP officials said that the first light touch 10 year reviews are starting and they would welcome feedback on these.

RSN North East

Real sense of fear – public narrative around potential cuts and being forced into work – adding “for those who are able” into wording about getting people back into work would really help. Access to Work reviews have cut support significantly. There is a feeling of uncertainty about getting back to work around benefits and support available. PIP form deadlines are 4 weeks but it takes 2 weeks for the forms to go out from DWP, so this can feel overwhelming, especially for those with neurological conditions. Providing medical evidence can be hard as medical professionals are often not showing the extent of conditions or deterioration of conditions in their letters.

Minister Timms commented that he knows that there are a lot of people who would love to work if they can get support on health and disability grounds, and that it isn’t about forcing people as the focus will be on supporting people.

RSN South East

Had a lower than usual turnout at the regional meeting as the topic causes stress. Speculation in the media and uncertainty about PIP proposals has caused huge anxiety and it is often forgotten how anxiety makes other conditions worse. Historical problems moving people from Disability Living Allowance (DLA) to PIP still need to be ironed out before further reform takes place. Benefit application delays mean knock-on impacts on other support processes – for example, blue badges. The media often focus on the medical model of disability rather than the social model, with disabled people seen as the issue, rather than tapping into the reasons why people face difficulties in everyday life. Link with employment support – PIP in particular needs to be looked at hand in hand with support into employment – Chloe herself wouldn’t have been able to maintain successful employment without PIP. There’s a huge group of disabled people who want and are ready to be in work but there are conflicts with levels of earnings, benefits and support holding them back – fear if they work too many hours they may lose benefits – vital support for daily life taken away would mean they can’t get to work in the first place. PIP review discrepancies by assessors – for example, a carer for 2 family members with the same inherited genetic condition and needs being offered different support.

2.3 Next theme, any other business, and Minister Timms’ closing summary

Minister Timms thanked the RSN chairs for their very useful feedback and asked them to send more detailed feedback via the DU. He reiterated that he is keen for the RSN to contribute to the green paper consultation once it opens.

The theme for our next meeting on 2 June will be assistive technology. He said that this area of work has a lot of potential, with a fair amount unrealised currently, and he looks forward to meeting the chairs about this subject. The DU will work with chairs ahead of this to give them a steer on any areas we would want them to focus on gathering feedback on in their regions.

Future themes for the remainder of the year (September and December meetings, which aren’t yet set up in the diary) need to be agreed in due course. Minister Timms asked chairs if they had any suggestions on potential priority topics.

North West

Interested in social care given the Casey review, and also housing and transport.

Greater London

Interested in care first (social care and unpaid carers, but said we would need to focus on the urgent parts as care is very broad), and then housing. He also noted the social care link with health.

South East

Social care, housing and transport, but also said that many members are parents or carers so special educational needs and disability (SEND) is a priority topic.

Minister Timms said that social care could be a good topic to cover and perhaps Baroness Louise Casey could be invited to a future meeting. He also said that more will be coming on SEND reform so again this could be a theme to cover at a future meeting. It will be useful to think about timings for future themes to ensure they fit with timings to influence the government, which DU will consider.

Minister Timms said we’re recruiting for a North East RSN chair and are grateful if chairs can share it with their networks (closes 25 April). 

North East

John commented on the medical and social model of disability clash and said it’s probably time for a new model that encompasses both aspects as one. Also his disability employment support organisation is working with the local Jobcentre to hold a conference in June to help more local businesses be Disability Confident and link up disabled people and the employment sector.

Minister Timms said that in the future it would be good to discuss Disability Confident to get more feedback about making it more robust.

Greater London

Marc said that it would be good if we can allow time at meetings to update on the impact of RSN feedback on previous themes, such as employment support, so that chairs can share anything with members.

Minister Timms commented that RSN feedback on employment support was helpful in shaping thinking on this work, and that the same will apply for the benefit reform feedback, but that he appreciates that it is useful to respond on any specifics where possible in the future.

Minister Timms thanked the chairs and asked them to pass on his thanks to their members.

3. Action points

1. RSN chairs to send detailed feedback on welfare reform to the DU for DWP.

2. DU to work on future meeting themes (September and December).