Rose Kindred, a 26-year-old woman from Ipswich, has a chronic pain condition known as hypermobile Ehlers-Danlos Syndrome (EDS). This condition affects her body’s collagen, resulting in joint hypermobility, poor balance, and coordination.
As the BBC writes, she has been deemed unfit for work by the Department for Work and Pensions (DWP) and receives £405.40 in Personal Independence Payment (PIP) each month and £809.64 in universal credit every four weeks.
Living With Financial Constraints
Rose wants to move in with her partner of five years, Denis Gibbons, but the current benefit rules impose significant financial restrictions. If she moves in with Denis, who earns around £30,000 annually, she would lose her universal credit payments.
This would leave her with only £405 a month, which is insufficient to cover her living expenses and the cost of private physiotherapy sessions that the NHS cannot provide.
Rose finds it “nonsensical” that while her parents’ income is not considered in her benefit calculations, her partner’s income would directly affect her benefits.
This situation forces her to choose between living with her partner and maintaining her financial stability.
Challenges Compounded by Policy Changes
Rose has voiced her concerns about proposed changes to PIP by the Conservative government, which could alter the way these payments are made.
The charity, Ehlers-Danlos Support UK, echoed these concerns. They highlighted that EDS is often misunderstood, and obtaining a diagnosis can take decades. This makes it difficult to prove the daily challenges faced by individuals with this illness.
The charity has received an increased number of requests for help through their Advice Line, indicating escalating issues for people with EDS in the UK.
They have also encouraged their members to participate in consultations regarding the proposed PIP changes to ensure their voices are heard.
Rising Issues and Support Needed
This situation is part of a broader struggle faced by many disabled individuals in the UK. Balancing personal relationships and financial stability under the current benefits system is becoming increasingly difficult.
The current system seems to create barriers, making it hard for those with chronic conditions to live independently while being in a relationship.
The personal experiences shared by Rose and others highlight the urgent need for a more compassionate and understanding approach to disability benefits.
It’s essential for the system to recognize the unique challenges of chronic illnesses and adapt to support those who live with such conditions every day.
What the Parties Say
The Liberal Democrats plan to give disabled individuals and organizations a stronger voice in shaping benefits policies. They aim to bring work capability assessments in-house and make PIP assessments more transparent.
They also intend to stop unnecessary reassessments and end the use of informal assessments.
The Greens want to increase disability benefits by 5% immediately. They will reform intrusive eligibility tests like PIP and aim to stop unfair targeting of carers and disabled people.
In the long term, they propose a universal basic income to provide everyone with financial security.
Labour aims to create plans with local areas to help more disabled people and those with health conditions find work. They will provide funding to local areas for a coordinated approach to work, health, and skills.
They also promise to address the backlog of Access to Work claims, but do not mention benefits such as PIP.
Reform UK advocates for face-to-face PIP and work capability assessments. They will require independent medical assessments to prove eligibility for payments.
People with severe disabilities or long-term illnesses would be exempt from regular checks.
The Conservatives intend to reform benefits to prevent an increase in PIP payouts. They pledge to make the assessment process simpler and fairer for those with severe conditions, but details on changes remain unspecified.
They stress a “more objective” assessment of individual needs.
