PIP & Universal Credit Reform Bill Consultation - AIMS' Response

AIMS continues to work with MPs and Ministers to advocate for our community and their place within the welfare system that is an important lifeline to many with MS.

For transparency, here is a copy of our response to the consultation:

I am writing on behalf of AIMS, a national charity supporting people with Multiple Sclerosis (MS) particularly patients who are undergoing HSCT (Stem Cell Treatment). MS is a progressive, incurable illness. It affects memory, speech, vision, movement, continence, and cognition - and often all of these at once. It is unpredictable, exhausting, and, for many, permanently work-limiting. We represent thousands living with these realities every day many will live in your constituency.

Our work particularly provides hope for people diagnosed with MS to have a greater chance of a life well lived by slowing or even stopping the progression of MS. This gives people a greater chance of maintaining the ability to work for longer and be less reliant overall on the benefit system. However, many people with MS are reliant on the support system in place both whilst in work and when the progression means work is no longer a realistic option. 

We are concerned that several elements of the Pathways to Work Green Paper will have a significant and disproportionate effect on the MS community without safeguards put in place in the final delivery of the policy. Our suggestions seek to ensure that after the changes people with MS can still have their legal protections, financial lifelines, and basic dignity within the revised system.

We do advocate for reform in the welfare system to support members of our community to have the chance to receive both the funding and direct support required to remain active whilst possible and comfortable when time comes that they can’t and not being made to feel under pressure with constant reassessment. This proposal does have elements we can agree with including support when seeking work, removal of the work capability assessment in addition to the PIP assessment and the uplift in basic Universal Credit rates, however we are particularly concerned in the following areas:- 

• Replacing contribution-based ESA with a six-month “Unemployment Insurance” model - even for those with no prospect of working again. Particularly for those in the ESA support group who have made often difficult financial decisions to enter medical retirement before they were financially ready within the pension system who face a 6 month limit of support under the proposal.  

• Imposing a rigid “4 points in one activity” rule for the daily living component of PIP;

• Removing PIP eligibility for everyone under 22, regardless of lifelong impairment.

The 4-point rule in particular will adversely affect the MS community in a way we understand is not the intended aim of the policy change. It removes the subtlety in the system to recognise complex, variable and progressive illness. An example of that limitation is below:

⸻

The Real Cost of the 4-Point Rule

Person A: One Clear-Cut Disability

• Condition: Congenital limb difference – born without one hand

• Needs help preparing food – 4 points

• Needs to use an aid or appliance to be able to wash or bathe. - 2 points

• Needs to use an aid or appliance to be able to dress or undress. 2 points.

• Independent in all other areas

Outcome: Total 8 Point: Qualifies for the lower level of PIP Daily Living. 

This person deserves support - and gets it. 

⸻

Person B: Living with Progressive MS

• Needs prompting to prepare food – 2

• Needs help to wash – 3

• Needs help to dress – 3

• Needs help managing medication – 2

• Needs support to manage money – 2

• Needs prompting to engage socially – 2

Total: 14 points - Has sufficient points to qualify for the Higher Rate of Daily living but no single activity scores 4.

Outcome: No support offered, contrary to the current position and seemingly not the intended outcome of this change. 

⸻

Under this proposal a person with a severe, progressive, whole-body neurological condition could be denied support - not because they have fewer needs, but because their needs are too varied to fit into the categories at a more severe level. People with MS often have “higher needs” whilst scoring low across multiple categories in a PIP assessment. 

We propose to mitigate these effects on the MS community a robust re-evaluation of the PIP assessment criteria is carried out that ensures people like this continue to be supported through the welfare system in a way a compassionate society would expect. This would particularly require a change in the assessment score for those with physical disabilities who face the additional cost of equipment and resources. As part of this review we urge the DWP to publish a full Equality Impact Assessment specifically focused on people with MS, whose fluctuating and progressive condition makes them particularly vulnerable to systemic changes in benefit eligibility criteria.

With this change, we can also ensure that PIP remains the lifeline it is that supports many to retain the ability to work longer than without this support. We believe that failure on this point particularly will undo the intent of this policy in reducing the welfare bill, as it will push more of the MS community away from work and onto the more expensive universal credit system, whilst also reducing the tax income from employment. This would undo the progressive intent of this policy change.

We would propose, as one example amongst others, that within the system any use of “an aid” or “requiring help” whether that's a walking stick, prosthetic limb, wheelchair someone to help you wash etc is uprated to a minimum of 4 points to ensure those with clear physical disability that has a cost to the individual are not excluded with the new system. 

We would also like to see PIP assessments reflect the worst day a person suffers as it is this day that limits a person's ability to work and requires support to be available at all times, with the associated cost.

PIP is also seen as a “gateway benefit” that unlocks access to other disability support such as Blue Badge, Council Tax reduction, travel discounts etc. We urge that those who meet the qualifying total points but don’t meet the “4 point rule” are awarded PIP at a nil rate in order to continue to access these ancillary benefits and support. They should also have access to rapid reassessment in the case of progressive conditions.   

Related to this we are also concerned over the removal of PIP for those under 22. Young people diagnosed with MS often have some of the most aggressive forms of the illness and they are much less likely to be diagnosed at a stage in life where they have the security of housing, savings, a National Insurance Record or private pension. We ask you to advocate that those who have significant, permanent or life-limiting conditions are exempted from this age limit as they will never be able to integrate with the work support being offered in other cases.

With regards to those on ESA in the support group we ask that you seek to ensure that this group currently in receipt particularly don’t lose out, as they will have already made long term financial decisions that are potentially irreversible, based upon the certainty of this income for life. We urge that if this group is moved into a different system, their income is protected - either through a guaranteed uplift or, as seems to be proposed, a “health premium” that reflects the current system. If moved to another system it is important this group continue to receive full National Insurance credits to ensure that they are able to access a full state pension which will have formed part of their financial planning for retirement. It would be a very unintended consequence of this policy if it left this group poorer both now and again in the future. 

Going one step further, we expect to have MS recognised as complex condition and one that - once diagnosed by a Neurologist (which is in itself a complex process), based on clinical evidence - would be sufficient for a patient to automatically qualify for both PIP, Universal credit Health Element and any “Health Premium”, as long as they meet the relevant other criteria such as means testing. We also expect that MS would be exempt from reassessment when assessed to receive the higher rate of PIP as there is no prospect of recovery of function. However at lower levels we would expect sufferers to have access to rapid reassessment so that they can receive the right level of support as their condition progresses. MS is often not recognised in this way in other circumstances (i.e. free prescriptions - even though many MS treatments are analogous to cancer treatment). This clinical diagnosis would be far more appropriate for a complex and variable condition than a non-specialist PIP or WCA assessment and would save significant administrative costs.  

We are very supportive of the proposal to increase resources in encouraging employment. Many in our community, particularly after diagnosis, undergo a change in career to better reflect their ongoing abilities. Sadly, there are those who would still find dignity in work who find it difficult to make this change. So whilst we support the principle of the change, it's very important that this service has the flexibility to see the individual and help them make an appropriate change for their circumstances, abilities, capacity, flexible needs and support them in skills training to meet the needs of their new career. This is likely to need specialist advice on access to work and suitable work sectors and must be led by specialist careers advisors with the time and capacity to take a tailored approach to the individual.              

In summary we request the following changes:

1. Ensure that MS is a recognised “very severe condition”, so that initial assessment requirements are reduced and ongoing assessment is not required - rather than undergoing non-specialist  PIP assessment. This reflects the intensive clinical assessment they will have already received. This diagnosis should already be recorded in the person's NHS record. This also applies when considering awarding the proposed “additional premium” for Universal Credit.

2. PIP assessments are re-evaluated to ensure the 4 point rule does not adversely affect those with multiple, low level support needs, or variable conditions, whom the policy is intended to support.

3. Call for the protection of PIP-linked entitlements (Blue Badge, Carer’s Allowance, Council Tax reductions), even where the new 4 point threshold removes PIP cash payment. We would support a nil rate award for this purpose.

4. Ensure those currently in the long term ESA support group are not adversely affected by the changes, having already made long term financial decisions based on this support and national insurance credits. This means ensuring that those who cannot work are not negatively affected by the new Unemployment Insurance, either with a similar system to the support group or cover within the wider system for non means tested support to those permanently unable to work.   

5. Advocate for the DWP to have a statutory safeguarding obligation in line with other areas of the state. 

And support the following that is already proposed; 

1. Ensure continued improvement to NHS waiting lists. Early diagnosis and treatment of MS has a dramatic impact on patient outcomes.

2. Support the employment, health and skills support work to ensure those who need to change careers due to health related reasons are appropriately supported, based on their skills and abilities, aspirations and goals, and not just a one size fits all approach.  

3. Support the legislative changes proposed that trying work will not lead to reassessment 

4. Support the scrapping of Work Capability Assessment (WCA).

We are pleased with the recent announcement that existing claimants will have their income protected and increased with inflation, However we are deeply concerned that this will create a 2 tier system where people with identical needs would receive very different levels of support. 

Our organisation differs materially from the MS Society. While they represent a broad MS population, AIMS works at the frontline of urgent care advocacy, particularly supporting patients pursuing HSCT and navigating extreme disability at a younger age. We engage with individuals who often fall through the cracks of standard care pathways and require sharper systemic protection.

AIMS formally requests to be included in all future stakeholder consultations and advisory groups related to welfare reform. As a national, patient-led MS charity, our insight is grounded in lived experience, with a specific focus on people facing rapidly progressing MS and the impact of benefit reforms on treatment access, dignity, and survival.

Yours sincerely,

Dr Alexander Parker 

Trustee AIMS Charity (Auto-Immune and Multiple Sclerosis)

www.aimscharity.org

Q1. How could we make sure the benefit system supports people to try work without the worry that it may affect their benefit entitlement?

People with MS may want to try work often part time or in a different field but the risk of losing benefit entitlement acts as a major barrier. We support a guarantee that testing work will not trigger reassessment. There should be specific protection for people with progressive

conditions like MS who may experience cycles of stability and decline.

MS should be included on any statutory list of exempt conditions from mandatory work-focused conversations, work preparation requirements, and health-related benefit conditionality. The variability and severity of the condition make blanket requirements inappropriate and potentially harmful.

Q2. What support do you think we could provide for those who will lose their Personal Independence Payment entitlement as a result of a new additional requirement to score at least four points on one daily living activity?

This proposal will hit people with MS hard without significant changes to the PIP criteria. The

condition often results in multiple low-level needs that don't pass a single 'four-point threshold' 3 but collectively create a serious disability. This approach completely ignores the cumulative effect and it's people with MS who will be acutely affected who use the funding to support remaining in work. This has the potential to mean fewer early progress sufferers with MS will have the ability to stay in work resulting in increased uptake of Universal credit which is the opposit of the intended aim of the policy. 

We propose - Scrap the 'four-point' minimum requirement or, if retained, offer transitional support to those who don't meet it but score significantly across multiple areas.

Allow PIP to continue acting as a gateway to other entitlements, even if the financial award

is reduced to zero with a “Zero rate” award which allows access to associated support services too.

Q3. How could we improve the experience of the health and care system for people who are claiming Personal Independence Payment who would lose entitlement?

Removing PIP may also strip away access to transport, care, blue badges, and equipment. These changes could be devastating unless carefully managed. Particularly anyone with a motability vehicle should be enabled to finish the term on the vehicle as they may have made an upfront payment they are expecting to share over a 3 to 5 year period. Access to a BLue Badge can be an important tool in allowing someone to continue working. 

Q4. How could we introduce a new Unemployment Insurance, how long should it last for and what support should be provided during this time to support people to adjust to changes in their life and get back into work?

If this system is being designed as a short-term bridge, then it must not be a replacement for long-term support such as the ESA support group where individuals have made long term decisions based on receiving that support. A similar scheme that has no time limit for claiming for “severe conditions” that protects current income should be considered.  

People with MS often face work-ending disability earlier than expected and for many, six months of support won't even scratch the surface of what's needed to manage an effective career change.

Q5. What practical steps could we take to improve our current approach to safeguarding people who use our services?

People with MS and others with cognitive or fluctuating conditions are at real risk in a system

that doesn't understand or accommodate their needs.

We believe DWP requires a statutory duty similar to that given to other government departments. This would see training rolled out for staff and proper consideration given to the way individuals are dealt with by the department. 

As part of this statutory safeguarding duty the DWP must adopt internal protocols for identifying and protecting people with progressive neurological conditions, especially those experiencing cognitive dysfunction or vulnerability during assessment or reassessment.

All DWP staff involved in assessment, reassessment, or benefit entitlement decisions must complete accredited training specific to MS and other progressive neurological conditions. This must cover relapse, remission, fatigue, cognitive impact, and the cost of managing unpredictable decline.

Q6. How should the support conversation be designed and delivered so that it is welcomed by individuals and is effective?

People with MS will only welcome a support conversation if it feels supportive, not performative. The conversation must recognise the lived complexity of fluctuating conditions, and not be used as a pretext to trigger reassessment or obligations. The support conversation needs to be separate from people directly making decisions over benefits/sanctions so that a level of trust can be established. For those with severe conditions the conversations should be optional. There should be flexibility in where conversations take place including, home visits, online options, and breaks when symptoms flare.

Q7. How should we design and deliver conversations to people who currently receive no or little contact, so that they are most effective?

Many people with MS receive little contact from the system and often, that's a relief. Contact is only helpful if it's genuinely supportive and not a trigger for reassessment.

Q8. How should we determine who is subject to a requirement only to participate in conversations, or work preparation activity rather than the stronger requirements placed on people in the Intensive Work Search regime?

People with MS especially those with fatigue, cognitive challenges, or invisible symptoms often fall between categories. Requiring them to engage in any mandatory work preparation without clinical oversight risks real harm. MS as diagnosed with a NHS doctor should be added to the list of conditions with automatic exemptions. 

Q9. Should we require most people to participate in a support conversation as a condition of receipt of their full benefit award or of the health element in Universal Credit?

Absolutely not. Making support conversations mandatory for benefit entitlement turns help into a threat. Support conversations should be conducted separately to discussions on payments or sanctions. For people with MS, who may be too unwell to attend or too anxious to engage, participation should be voluntary.

Q10. How should we determine which individuals or groups of individuals should be exempt from requirements?

People with progressive and fluctuating conditions like MS need clear, automatic exemptions from mandatory requirements after clinical diagnosis. Use clinical evidence to determine exemptions.

Q11. Should we delay access to the health element of Universal Credit within the reformed

system until someone is aged 22?

Delaying access to the health element until age 22 is discriminatory. Young people with MS or other serious conditions may never be able to work and still need help in setting up their lives to have security needed to thrive.

Q12. Do you think 18 is the right age for young people to start claiming the adult disability benefit, Personal Independence Payment? If not, what age do you think it should be?

For many young people with MS or similar conditions, waiting until 18 is too late. Support

should be based on need, not an arbitrary age. Some will require the same help at 16 as they do at 18 and making them wait does unnecessary harm.

Q13. How can we support and ensure employers, including Small and Medium Sized Enterprises, to know what workplace adjustments they can make to help employees with a disability or health condition?

Employers want clarity and disabled people need consistency. Right now, many with MS face misunderstanding, discrimination, or endless delays in getting basic accommodations. Access to and employers advice service would ensure consistency between employers in accessing requirements and government support available. This is particularly important for small employers. 

Q14. What should DWP directly fund for both employers and individuals to maximise the impact of a future Access to Work and reach as many people as possible?

Access to Work is one of the best tools we have but right now, it's too slow, too complex, and too narrow in scope. People with MS often face delays that stop them working altogether.

Provide upfront grants for common adjustments (home working kits, ergonomic seating, transport) without the need for long waits or assessments. Extend Access to Work to cover pre-employment support so people with MS aren't stuck waiting until they have a job offer to apply.

Access to Work must be modernised with a digital dashboard allowing claimants to track applications in real time, upload supporting evidence, and receive direct updates. Delays in the current system are a barrier to employment for people with MS.

Q15. What do you think the future role and design of Access to Work should be?

The future of Access to Work must be personalised, preventative, and responsive.

For people with MS, that means understanding the long- term, variable nature of our needs and being reactive if the condition changes.

Q16. How can we better define and utilise the various roles of Access to Work, the Health and Safety Executive, Advisory, Conciliation and Arbitration Service and the Equalities and Human Rights Commission to achieve a cultural shift in employer awareness and action on workplace adjustments?

Create a unified employer-facing resource hub that combines Access to Work, HSE, ACAS, and EHRC guidance in one place backed up with tailored advice and guidance.

Establish a shared enforcement framework with accountability when reasonable adjustments are not made.

Q17. What should be the future delivery model for the future of Access to Work?

Access to Work should move from being a reactive scheme to a proactive one. For people with MS, delays in delivery often mean lost jobs or missed opportunities. With portable support packages not tied to a specific employer or location and available pre-employment it would help avoid job loss during transition.

Offer fast-track access for people with clinically confirmed progressive or fluctuating conditions. Introduce "portable" support packages that move with the person not tied to a single employer. Include more flexible delivery routes, like digital self-management, portals for routine claims and renewals.