A call to action to all our supporters
Achalasia Action has submitted a response to the Government’s welfare reform consultation ‘Pathways to Work: Reforming Benefits and Support’ . You can find an abridged version of the response below. Our original submission also contains personal stories of the experience of people with achalasia in accessing benefits.
MPs will be voting for the first time on the Universal Credit and Personal Independence Payment Bill (which would make the proposed welfare reform legal) on Tuesday 1 July.
We encourage all people with achalasia, their families and loved ones to email or contact their MPs to urge them to oppose the Bill. This is because we are deeply concerned about how proposed changes to Personal Independence Payment (PIP) could unfairly impact people living with rare diseases like achalasia – a chronic and debilitating condition affecting swallowing, nutrition and quality of life.
You can use our submission below in your MP email or letter. You can find your MP contact details here: https://members.parliament.uk/FindYourMP
Achalasia Action’s consultation response
Achalasia Action appreciates the opportunity to respond to the ‘Pathways to Work: Reforming Benefits and Support to Get Britain Working’ consultation. Our organisation supports individuals living with Achalasia, a rare oesophageal disorder, which can lead to significant health complications and be profoundly debilitating. We recognise the government’s intention to modernise the benefits system, fostering economic participation and reducing fiscal pressures. However, it is essential that these reforms remain sensitive to the distinct needs of those living with rare diseases like Achalasia.
Achalasia itself affects roughly 6,000 people in the UK. While this is not a significant proportion of the population, it is important to recognise that collectively rare diseases affect approximately 3.5 million people. Rare diseases, therefore, are not that rare. The cumulative impact of this patient population
should not be underestimated when designing public policy, including welfare reform.
Individuals with achalasia often face significant barriers to sustained employment due to the unpredictable and chronic nature of their condition. Symptoms include difficulty swallowing, severe chest pain, rapid weight loss, and frequent hospitalisations. This is in addition to delayed diagnosis and inconsistent support within the health system, which are common experiences for people with rare diseases, exacerbates these health challenges, which can make consistent participation in employment difficult or impossible.
The proposed tightening of eligibility criteria for Personal Independence Payment (PIP) could adversely affect many individuals with rare diseases, including achalasia. Given the complexity and variability of such conditions, there is a genuine risk that those who rely heavily on this financial support may be disproportionately disadvantaged, increasing their vulnerability and economic hardship. Estimates suggesting that up to 1.2 million individuals could lose significant annual income under revised criteria highlight the potential scale and severity of the impact on vulnerable groups.
We strongly advocate for reforms to be informed by a deep understanding of rare diseases. Enhanced training and guidance for assessors undertaking integrated Work Capability and PIP evaluations are essential. Without such measures, assessments may fail to capture the genuine challenges faced by those with conditions like achalasia, resulting in unfair and damaging decisions. Investment in personalised employment support services, outlined in the consultation, is encouraging. However, to truly empower individuals living with rare diseases, this support must offer flexibility in work arrangements, recognise the unique medical needs of beneficiaries, and include robust mental health support to address the psychological burdens associated with chronic illness.
We urge the government to maintain meaningful dialogue with organisations representing rare disease communities, incorporating patient experiences into policy-making processes. Only through such inclusive collaboration can we ensure reforms enhance rather than diminish the lives of individuals facing significant health-related challenges.
Achalasia Action looks forward to further engagement with policymakers to create a fair and compassionate benefits system.
