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We need a benefits system that supports, rather than vilifies, those with disabilities.

In its Autumn Statement, delivered on Wednesday 22nd November, Government set out its plans to 'get more people on disability benefits back to work'.

These plans include changes to the work capability assessment (WCA), so that if people are declared as fit to work but don’t look for jobs, they will face sanctions.

We have written an open letter to Jeremy Hunt, Chancellor of the Exchequer, calling for an urgent re-think of these damaging reforms - and reinforcing the need for a benefits system that supports, rather than vilifies, those with disabilities. The letter, sent to Government on 29th November, can be read in full below.

Dear Jeremy Hunt,

Re. Your grossly unfair plans to reform the Work Capability Assessment, and the impact on people with chronic illness

I am writing to you as Chair of the Pulmonary Hypertension Association (PHA UK), a national charity representing people with the rare and incurable health condition pulmonary arterial hypertension (PAH).

This chronic disease affects the lungs and often causes heart failure, and those living with it endure many challenges and restrictions. This is an open letter to express our dismay over the changes you’re planning that will make their lives even harder.

In your Autumn Statement, November 2023, you highlighted plans to reform the Work Capability Assessment (WCA) so that if people on disability benefits do not look for home-based jobs, they will face sanctions. The aim of this correspondence is to challenge your decision and call for urgent reconsideration.

PAH shortens lives and carries a high symptom burden, including severe breathlessness and debilitating fatigue. For the majority of patients, these symptoms make working in any capacity a distant dream. In fact, in research carried out by us earlier this year, 79% of people with PAH said the condition impacts on their ability to work or attend education.

Your department believes that working from home is the answer to “helping people with health conditions find jobs. However, it’s important to understand that not all chronic illnesses tend to be a ‘steady state’ (an assumption often made due to unhelpful stereotypes of disability by people who do not understand).

In truth, like many conditions, PAH is very changeable, meaning symptoms vary from day-to-day and even from morning to evening. There is often limited stability and no consistency – meaning these patients are commonly overlooked when it comes to employment opportunities. Therefore, they are immediately hugely disadvantaged when it comes to applying for jobs, even if they were able to do so. This instability and lack of consistency means that simply preparing for an online interview would be beyond many people with PAH.

There was a shift to home working for many employees during the COVID-19 pandemic, but we challenge the projection that there are thousands of work-from-home jobs available for disabled people. Where is the evidence for this, when ONS data shows that just 16% of working UK adults now work from home?
I believe that your plans are therefore unrealistic, and extremely damaging to many people living with chronic illness.

You make the point that the WCA reform will only affect new claims – however, people on Personal Independence Payments (PIP) are forced to re-apply and be re-assessed regularly, despite having a lifelong condition. Your plans will cause untold worry and anxiety amongst people already hugely impacted by their disease.

The benefits system should be an investment in people, and in the case of PIP, it should help them maintain independence. Your reforms will simply create more dependency. Plus, the announcement of your intentions comes amid a cost-of-living crisis – and there is no doubt that this will have a significant impact on the mental health of those already struggling.

Many people with PAH have worked all their lives and paid taxes before illness set in, and as a Consultant Nurse in the NHS, I hear time and again about the anguish it causes patients to cease employment because of their condition. There is a dangerous stereotype that prevails, painting those on disability benefits as lazy, but for the vast majority this could not be further from the truth.

These are individuals whose hopes and desires for the rest of their lives have been robbed of them due to illness. What most people take for granted in life has been taken away, and although this is something we all felt to some extent during the COVID-19 pandemic, the key difference is that there is no vaccine for PAH.

On behalf of the PHA UK, and all who are affected by chronic disease, I urge you to re-think your reforms to the Work Capability Assessment. The benefits system must meet the needs of disabled people, rather than vilifying them. I ask you to show some humanity and consider the impact of these plans upon vulnerable people.

Finally, I would like to draw your attention to the words of Aneurin Bevan, founder of our treasured NHS, who said: “Illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community.”

The penalities threatened in your reforms fly in the face of Bevan’s pioneering work to protect the most vulnerable in our society, and it is shameful that Government is taking this route.

Yours sincerely,

Dr Iain Armstrong PhD FRCN
Chair of the PHA UK and Consultant Nurse in Pulmonary Vascular Disease