Blood cancer: Thousands of patients struggle for food and medicine

The signs and symptoms of blood cancer

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Myeloma UK chief executive, Laura Kerby told Express.co.uk that according to the Myeloma UK Freedom Day Snapshot Survey, many myeloma patients have been left feeling frightened to leave their home and let down by the system following the government decision to lift social distancing rules and wind down emergency COVID-19 support schemes, including access to priority supermarket delivery slots for at-risk groups.

Myeloma, a form of blood cancer impacts your bone marrow. Bone marrow is the spongy tissue at the centre of some bones that produces the body’s blood cells.

Unlike other forms of cancer, myeloma does not usually cause a lump or tumour. Rather, it damages the bones and affects the production of healthy blood cells.

In the early stages, myeloma may not cause any symptoms. It’s often only suspected or diagnosed after a routine blood or urine test. According to the NHS, eventually, myeloma causes a wide range of problems, including:

• Persistent bone pain, usually in the back, ribs or hips
• Tiredness, weakness and shortness of breath – caused by anaemia
• High levels of calcium in the blood (hypercalcaemia), which may cause symptoms including extreme thirst, stomach pain, needing to pee frequently, constipation or confusion
• Weight loss
• Blurred vision, dizziness or headaches – caused by thickened blood (hyperviscosity). 

Kerby explained to express.co.uk that patients with myeloma, which affects 24,000 people in the UK, have a higher risk of severe illness due to COVID-19 and are much less likely to get protection from vaccines than the general population.

A staggering third of the survey’s 1,733 respondents expressed serious concerns about food shopping and picking up prescriptions, particularly in England where wearing face masks is no longer compulsory in enclosed public spaces or on public transport.

The five-question poll was carried out over the Freedom Day transition weekend back in July.

Myeloma UK explained that these results are even more concerning in light of the government’s decision to formally end the requirement for centralised guidance and close the shielding programme for clinically extremely vulnerable patients last week, which had been on pause since April 2021.

Myeloma UK are calling on the government to reinstate social distancing rules, make face masks compulsory in enclosed public spaces across the country, resume food and medicine delivery schemes and offer financial and care support to those most at risk of contracting COVID-19 and experiencing severe symptoms.

Myeloma UK Head of Patient Advocacy, Shelagh McKinlay, told express.co.uk: “Removing the protection and support offered as part of the shielding package has led to uncertainty and hardship for thousands of clinically extremely vulnerable myeloma patients across the UK. While patients are unable to receive medicine deliveries and no longer have the option to book priority delivery slots at the supermarket, the burden to ensure they have access to basic necessities now falls to their family and friends.

“For those without the option to call upon a close support network, the picture is much bleaker. We must ensure immunocompromised patients are not left to fend for themselves by investing in practical support.”

Around 93 percent of the Freedom Day Snapshot Survey’s respondents said they would continue to wear a face mask both in enclosed spaces and outdoors.

Kerby, said: “There is a clear need for a better understanding of vaccine effectiveness in myeloma and other blood cancers. Patients should understand what level of protection they receive from vaccination.

“The government needs to commit to a sustained programme of vaccine effectiveness research, including studies that look at the best way to measure the level of protection vaccines provide to blood cancer patients. Without this, patients will continue to be uncertain about their level of risk and the measures they need to take to protect themselves.”

Matthew Gill, 53, from Redditch was diagnosed with myeloma in 2018.

Despite the end of social distancing rules, he continues to wear a mask, avoids supermarkets and public transport and rarely leaves his home.

He told express.co.uk that: “There should be some kind of [routine] blood test to work out levels of antibodies to see how effective the first and second vaccines are for people who are ill.

“There are people out there who are potentially walking around with two jabs who don’t have any antibodies. That could be me. That’s why I can’t take any risks.”

According to Myeloma UK, 74 percent of people diagnosed with the disease every year are over 65. With COVID-19 impacting the elderly more than the rest of the population, it is clear why blood cancer charities are calling for more to be done to help shield the vulnerable.

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