IMAGE DESCRIPTION: An image of UK Parliament with a circular image of MP Fleur Anderson. The title reads: Cost of Living: Financial Support for Disabled People. The ME Association logo (bottom right)

Parliamentary Debate on Cost of Living: Financial Support for Disabled People

Yesterday, there was a parliamentary debate about the Cost of Living: Financial Support for Disabled People discussed in Westminster Hall with Sir Robert Syms in the Chair. MP Fleur Anderson, Labour MP standing up for Putney, Southfields and Roehampton spoke on behalf of disabled people and especially those with ME/CFS. Fleur Anderson is also a member of the APPG on ME and spoke about the APPG on ME report ‘Rethinking ME‘.


MP Fleur Anderson said:

“It is a pleasure to speak in this debate and serve under your chairship, Sir Robert. I thank my constituency neighbour, my hon. Friend Marsha De Cordova, for her very powerful opening speech, in which she set out many of the issues faced by thousands of people across this country, including in my constituency of Putney. I thank Rachel, Abigail and Katy for starting the petitions and enabling thousands of people to say that not enough Government time is spent in this place debating these issues on behalf of the people who are affected by them.

“I want to highlight the difficulties faced by three groups of people who have come to me in my constituency: young people with cancer, people who have myalgic encephalomyelitis or chronic fatigue syndrome, and people who have had stem cell or bone marrow transplants. All of them face unique situations. The cost of living crisis is worsening people’s physical and mental health conditions and driving them into poverty. These situations are also faced by many other people with long-term illnesses and disabilities.

“Research suggests that tens of thousands of 18 to 39-year-olds with cancer are struggling to pay basic living costs. More than half of the 18 to 39-year-olds with cancer surveyed by Macmillan and Virgin Money said they needed more financial support to manage the rising cost of living. One in four young people are getting further into debt or have fallen behind paying their rent or energy bills because of increased living costs, according to a survey of 2,000 people. The research found that almost three quarters of younger people with cancer were worried about the cost of food over the next 12 months. It is hitting them particularly hard at a time of life when they have not been able to save up and do not have a safety net of their own to fall back on. They were looking forward to a different kind of life from the one they are suddenly facing. More than a tenth of those surveyed said that they have to delay or cancel medical appointments because of the rising cost of petrol to get to those appointments. That is a false economy: people will be iller for longer because of the payments that they are not receiving.

“People with cancer already face significant extra costs of nearly £900 when they are diagnosed—for example, for buying extra clothes or food or because of increased heating costs—but now inflation has driven those costs up. Macmillan has seen a surge in demand for its means-tested financial grants to help cancer patients with costs. Macmillan and Young Lives vs Cancer are calling on the Government to give more financial help to cancer patients. But this is not just about money. Macmillan has found that delays in the payments are also causing financial crisis. Surely that can be rectified. There is on average an 18-week wait to claim a disability allowance that could help young people with travel and heating costs. The money is there; they are just not able to get it because of that 18-week delay. Macmillan is asking the Government to take “urgent steps” to reduce those delays.

The second group of people that I want to highlight is those who have ME or CFS. I am a member of the all-party parliamentary group on myalgic encephalomyelitis, which has produced a report on this issue, which I recommend to all hon. Members and all those reading the record of this speech. It is clear from the evidence presented to the all-party group that too many people with ME are being refused the payments that are being allocated to others. They are being refused PIP by the DWP. They can decide to appeal, and many people with ME who have taken that action have gone on to win their case, but that indicates that there are flaws in the system. However, many are not able to go through the appeals process, which is complex and requires a considerable amount of preparation by the claimant, which would exacerbate their symptoms. As a result, many people with ME are existing without the financial support that they need.

“There are some issues with the welfare assessments that are particular to the condition of ME. As the condition is variable throughout the day, a snapshot can sometimes not be applicable to people’s general circumstances. The next issue is the length of time for which an activity can be maintained. People with ME are often scored by assessors as being able to carry out a task even though they would not be able to carry it out for a long time because of their fluctuating symptoms. Also, there are after-effects from carrying out tasks. People with ME may be able to carry out a task for an assessment but then have extreme post-exertional malaise following the completion of that task, but that does not get assessed as part of it. And people with ME are being pressured by their private health insurers to undertake a course of graded exercise therapy, or GET, in many circumstances – despite detrimental effects for many – in order to keep their insurance-based health and disability payments.

“There are many recommendations from the all-party group, which I urge the Minister to look at, in relation to the ways in which people with ME are assessed and whether they are receiving the payments that will allow them to meet their needs in the cost of living crisis.

“The third group of people that I want to highlight is made up of those who have stem cell therapy or bone marrow transplants. A recent survey by Anthony Nolan found that two thirds of people who have had stem cell therapy struggled to heat their home. More than half struggled to afford food. Half struggled to afford travel to hospital. Half have taken on debts or had to move home because of this. Three quarters have had to give up work or cut their hours because of their stem cell therapy, but then are not able to get back into work. Ninety per cent. say that their physical health has worsened as a result of the financial problems that they are facing.

“Often, people who have had stem cell therapy have to have very regular check-ups—once a week—after the original operation, and they may have to go further away to specialist hospitals as well, so they incur greater costs. One parent of a stem cell transplant patient said:

“The rising cost of living has crucified me…I’ve had to walk 12 miles a day to take my children to school.”

“That was because she was not able to afford the transport. There is a healthcare travel costs scheme for certain patients, but it has a very high threshold for eligibility. As well as increased heating costs, this group of people highlights increased travel costs. A patient travel fund for stem cell patients—there are about 4,000 a year in the UK—has been recommended, as has the extension of the warm home discount. They also highlight timely access to benefits as one of their top three financial problems with the cost of living crisis.

“People being on long-term sick leave presents a cost to our economy and a personal cost to people with disabilities and their families. The Government need to understand the needs and extra costs incurred by people with disabilities and the physical and mental health results of those, which drive more people into poverty.

“To conclude, will the Minister meet with me and the affected groups of people with additional needs who are facing the cost of living crisis? Will the Government review the impact of the cost of living crisis on people with disabilities, which is highlighted by these petitions and so many others? Will the Government increase travel and heating payments in the short term to alleviate the current crisis, but in the long term will they overhaul the social security payment system to put the needs of people with disabilities at its centre?”

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