The charity Anthony Nolan, alongside Labour MP Mark Tami, is urging the government to increase its support of patients in need of or recovering from a stem cell transplant during the cost of living crisis – as hundreds of patients reveal they are turning to loan sharks, food banks and are experiencing significant decline in their mental health.
The charity has revealed a series of devastating concerns around how blood cancer and blood disorder patients are coping with the financial implications of a stem cell transplant.
In support of the charity’s call, Mr Tami will be addressing parliament on Monday 12 June to ask the government to consider the charity’s policy asks, which includes an increase in financial support for utility bills and establishing a Patient Travel Fund.
A mother whose daughter received a stem cell transplant and is still isolating, told Anthony Nolan that she made the desperate decision to go against clinical advice because her family is now dependent on foodbanks:
My self-employed husband has really struggled to work as he has to be home with our three younger children. We now rely on foodbanks and gifts from friends. We cannot use the car other than for hospital. Our costs have massively increased, while our income has drastically fallen.
Another parent, whose three-year-old was born with a rare blood disease and has had two stem transplants, wrote:
The rising cost of living has crucified me… I’ve used £145 in gas alone in three weeks... I’ve had to start walking 12 miles a day to take my children to school.
Other patients spoke of feeling like they have no other option than to return to work earlier than they should following their transplant, just to keep up with costs:
I often feel the pressure of having to return to work earlier to make ends meet.
Claire was diagnosed with leukaemia and underwent a stem cell transplant and then received CAR-T therapy after her cancer relapsed. She wrote to the charity:
During my treatment I had to travel hundreds of miles for vital hospital appointments at the huge cost of £160 per trip. Living so far away meant I had to pay for overnight stays in hotels, which was really hard to budget for. On top of that, hospital parking costs for family and friends visiting when I was an inpatient were sky high. There was no financial help for me to pay for transport costs when I most needed it.
Claire, who received CAR-T therapy
Anthony Nolan’s poll revealed that well over half (60 per cent) of stem cell transplant patients struggled to heat their homes last winter with some patients experiencing such severe damp in their homes as a result that they have resorted to sleeping in their cars. On Monday, a key ask from Mark Tami MP will be to extend the Warm Homes Discount to all stem cell transplant and CAR-T therapy patients.
The charity’s poll also uncovered that almost half of patients struggle to afford travel to and from hospital appointments. Shockingly, some patients reported going without food and avoiding putting the heating on just to be able to afford the journey to hospital. Anecdotally, social workers have shared concerns, with Anthony Nolan, that suicidal ideation is on the increase among stem cell transplant patients since the onset of the cost of living crisis.
Because of this, Mr Tami will also back Anthony Nolan’s proposal for a Patient Travel Fund, which would cover all costs associated with safe travel to and from hospital for treatment. The government’s current Healthcare Travel Costs Scheme exists only in England and has a very high threshold for eligibility, greatly limiting the number of stem cell transplant patients who can receive it.
Finally, Mr Tami will call on the government to guarantee that all stem cell transplant and CAR-T therapy patients receive financial benefits on time, such as Personal Independence Payment (PIP).
Henny Braund MBE, Chief Executive at Anthony Nolan said:
The financial assistance currently available to our patients is wholly inadequate and offers minimal support. The government must urgently put in place a financial safety net for clinically vulnerable people, including blood cancer patients, to see them through this unprecedented cost of living crisis.
We encourage anyone who has had a stem cell transplant and is affected by the cost of living crisis to reach out to Anthony Nolan. Our expert Patient Services team offers information, advice, and emotional and practical support for patients and their families. Patients can call on 0303 303 0303.
Henny Braund MBE
The debate in the House of Commons on Monday 12 June will be available for anyone to watch here.