Leukaemia Care and Leukaemia UK have launched a new support fund to aid leukaemia patients with the cost of living crisis this winter.
The Cost of Living with Leukaemia Fund has been created in response to the financial crisis in the UK, and will help make a difference in the lives of leukaemia, Myelodysplastic Syndromes (MDS) or Myeloproliferative Neoplasms (MPN) patients who might struggle this winter with increased pressure on household bills.
Over the past year, Leukaemia Care has provided over £70,000 of financial support to people affected by leukaemia, MDS or MPN. These grants seek to provide help for those who are struggling with increased bills, hospital travel costs or paying for food.
Leukaemia UK previously committed an additional £20,000 grant towards the cost of continuing Leukaemia Care’s Financial Hardship Fund.
As a result Leukaemia Care has been able to offer 464 grants to families affected by leukaemia, MDS and MDN.
With that funding now exhausted due to high demand, new funding was needed at a time when demand for financial grants has been amplified during the ongoing cost of living crisis.
Leukaemia Care has seen a 400 per cent increase in the number of applications to its existing fund as the country enters a difficult winter where people who were already struggling financially due to their leukaemia diagnosis are now facing additional cost of living pressures.
Around 43 per cent of patients reported a financial impact, either due to an increase in costs or a reduction in income, or indeed both. This increases to 55 per cent for acute leukaemia patients.
To help address this need, Leukaemia Care and Leukaemia UK have now come together to launch this new fund.
Zack Pemberton-Whiteley, CEO of Leukaemia Care said: “We know how devastating the financial impact of leukaemia is to people affected, and the recent cost of living crisis has only increased this pressure further.
“Because of this, Leukaemia Care are pleased to be working with Leukaemia UK to launch the Cost of Living with Leukaemia Fund to provide additional financial support to people affected by leukaemia and other blood cancers.”
Fiona Hazell, Chief Executive of Leukaemia UK, said: “Whilst many in the UK are struggling financially, we know that a leukaemia diagnosis adds extra financial pressures, on top of the emotional and physical challenges.
“Leukaemia UK and Leukaemia Care want to do everything we can to improve the lives of those with leukaemia and so are extremely pleased to be able to launch the Cost of Living with Leukaemia Fund together.”
If you are in need of support, you can apply for the hardship fund here:
Leukaemia Care also has a range of services which can support patients, from counselling to buddy services, which help leukaemia patients at various stages of their journey.
Non-existent awareness of leukaemia symptoms “extremely worrying” – as new figures show people in Scotland don’t know bleeding, bruising, fatigue and infections are a sign of the blood cancer
Leading UK leukaemia charities launch memorable new campaign to get people “parroting on” about the symptoms for Blood Cancer Awareness Month in September
People in the Scotland are being urged to take notice of the symptoms of leukaemia, as new research published today shows that only 1% of those surveyed in the region were able to identify ALL four of most widely reported symptoms – fatigue, bruising, unusual bleeding and repeated infections.
Leukaemia is a form of blood cancer affects people of all ages and 28 people receive a leukaemia diagnosis every day in the UK – that’s over 10,000 every year. Overall survival for leukaemia stands at just over 50% – making it one of the most deadly forms of cancer.
Early diagnosis could saves lives yet the recent public survey by leukaemia charities Leukaemia UK and Leukaemia Care, found that over that nearly half (48%) of respondents from Scotland could not recognise ANY amongst the four most widely reported symptoms of the disease, which kills 5,000 people a year in the UK, and which is often diagnosed too late.
The two charities are collaborating on an important campaign, #SpotLeukaemia, to raise awareness of the symptoms ahead of Blood Cancer Awareness Month in September. Blood cancer is the fifth most common cancer and third deadliest.
In a new film released today Leukaemia Care and Leukaemia UK have called on the expertise of ‘Henry’, a talented Macaw parrot, to try to make the symptoms of leukaemia memorable.
The ad sees Henry using a range of objects to create a catchy and repetitive ‘Spot Leukaemia rap’ featuring the symptoms of leukaemia.
People who are concerned about any of these symptoms– fatigue, bruising, unusual bleeding and repeated infections – are being strongly urged by the charities to contact their GP and request a blood test. More information is available on the Spot Leukaemia website at www.spotleukaemia.org.uk.
The ad focuses on the top four symptoms. Other symptoms of leukaemia include fever or night sweats, bone or joint pain and swollen lymph nodes.
The charities are now calling on people to start “parroting on” about leukaemia and its symptoms, share the video (https://youtu.be/UMRTMKVvYhQ) with friends and family, and visit the Spot Leukaemia website for more help and advice.
Awareness of the symptoms of leukaemia is low in Scotland
Only 9% of respondents across Scotland recognised that repeated infections – one of the most common symptoms of leukaemia – are a symptom, only 31% said unusual bruising is a symptom and only 17% said unusual bleeding is a symptom. Only 39% of respondents were not able to recognise fatigue as a symptom – which is often the most likely symptom to be identified by those later diagnosed with leukaemia.
Case study:
Melissa McNaughton, 33, from Bridgeton, Glasgow, felt tired, something she attributed to working too hard. So, it came as a shock to Melissa when she was diagnosed with chronic myeloid leukaemia. Here, she talks about her diagnosis and her life since.
“I was diagnosed 12th June 2018 and I am not yet in remission. I am now on my fourth chemotherapy drug. Looking back to just before my diagnosis, I felt tired, but other than that, nothing.
“I have had quite bad health most of my adult life, so I am in and out of the doctors a few times per year. I just put the tiredness down to working too much as I run my own business.
“I popped into the doctors for my blood test (every few months) to check my iron levels. My GP told me to go to hospital the following day – I knew what hospital and what ward I was heading to. My GP is absolutely amazing and has been very supportive throughout the journey.
“So, I arrived at the hospital, headed to the second floor and walked through the doors. I was surrounded by posters that were all about cancer and effects of chemo, support groups, giving blood, wig makers, etc. I felt ill with fear, and I had no clue what I was going into.
“I sat down and one of the nurses came up to me and said, “Are you here for chemo today?” I said, “I have no idea why I’m here.” And ran away into the toilet and had a panic attack. I was meant to see a consultant first. I then went in and they said there was a 99 per cent chance I had chronic myeloid leukaemia (CML).
“Sitting in the consultant’s room with my mum, dad and husband, I was in my own little world. I heard a few words and could see the consultant’s mouth moving but nothing coming out. I just heard the words “cancer” and “leukaemia”. A million questions were going through my head: what’s going to happen to me? What will my life be like? Am I going to die? How long will I live? Can I have children?
“It’s so strange all these things go through your head that you have never thought of before. I was looking around at my mum and dad and they were asking questions; my husband was just in a daze. It wasn’t nice to see the fear in their eyes. I’m such a happy, bubbly, positive person and I snapped myself out of the daze and said, “What’s next?” completely interrupting the consultant.
“He said the next step was to do a bone marrow biopsy and he could get me in next week. I asked if I could just have it done today. I was then taken into another room and had my back injected to make it numb to do the biopsy. Then it began; it was a horrible pressure pain and I was crying.
“But the song from The Greatest Showman ‘This Is Me’ was playing in the background and I focussed on that – I feel it’s now became my theme song! I was back in the hospital on Friday. I was told the results were back and I had CML. Everything was going to change.
“Again, I tried not to let all the thoughts come into my head and I asked to start the treatment straight away; I was not waiting around. Off to the pharmacy I went and collected all my pills. I then went back to work the following week – this was not stopping me.
“The first generation of the TKIs were awful, I couldn’t get through a full day, I could only get up for about an hour or two at a time. I was sick, weak, bone pain, muscle pain. It was horrible! I’ve never cried so much. I lost so much weight, I was so weak I could hardly use a knife and fork. I tried to keep going with work, but it was all too much. I had to cut my hours right down.
“I have never felt like this in my life, it got me really down for a while. But my inner warrior was not going to let that happen for long. I tried to power through. I was then taken off these tablets and moved onto another generation. I am still on them now, but I was covered from head to toe in a rash, and my bones in my legs were so sore and weak they felt like they were going to snap.
“Fast forward to today. I have had my “cancerversary” of four years living with cancer. Every day is still a struggle and some days are worse than others. I’m getting there.
“Cancer will just have to get used to living with me because I am in no way going to let it beat me. I’m still smiling and not stopping. My blood levels are steadily going down which is great. I have not hit my target yet, but everything is moving in the right direction.
“I try to keep doing everything I would normally do weekly but just a bit slower and sometimes it’s quite difficult. I try to carry on as normal as possible, but this is my new normal! I try to pop make-up on and look a bit more like myself. I am a hair extension master and I had to close down my salon of 10 years due to the pandemic so I have started a new business from scratch, IvyHQ where I for hair extensions and I have developed my own line of hair and training.
“When I had my own salon we did a charity karaoke night to raise funds for Leukemia Care. In my spare time, myself and husband love travelling around Scotland with our new puppy, Hope.
“I have heard a few times that if you’re going to have cancer, this is the best one to have. Really? Did you actually just say that to me? Nobody will know how it feels unless they are going through it. Some other cancers you have to go through the horrible process of being injected with chemo, losing your hair and being weak, but when you come out the other side of it that can be you “fixed”. Whereas with me I will have to be on tablets for life. It’s very different.
I’ve also had, “Is that you cured now?”, because I’ve done my hair and make-up and managed to get out in high heels for an hour. Just because I look ok doesn’t mean I feel it. I try not to talk about it too much, so when someone asks me how I am I always say I’m good!
“I’m not going to go into detail with them by saying, “Oh, today’s been a bit hard, it took me two hours to get out of bed and I needed help getting out of the shower today as my legs went into a cramp.” But these are things I have daily and I just carry on with a smile on my face as I’m so lucky to be able to have this treatment.
“And hopefully, in time, these will all ease off. I have kept working as much as I can all the way through, as having my own business, if I don’t work, I don’t get paid. I have also made up my own hashtag #mycmljourneydiary online as I felt it’s good to keep a wee diary to look back on.
“Also, if someone is going through the same thing as me and if I can help in any way at all, that will make me feel good that I can help. It’s got the good, the bad and the ugly. All “keeping it real” posts. Spot Leukaemia is so important to raise awareness as I had no idea what leukaemia really was until I had it. It is so important to me as getting the word out there will hopefully make someone go along for a blood test!”
Melissa’s only symptom of leukaemia was fatigue, but there are other signs which include:
Bruising
Bone Pain
Repeated infections
Are you currently experiencing similar symptoms to Melissa? Request a blood test from your GP. For more information on our Spot Leukaemia campaign, our goal and how to get involved, head over to our official Spot Leukaemia website at www.spotleukaemia.org. Early diagnosis saves lives. #SpotLeukaemia
Nationally, those who are over 55 also underestimate their risk, thinking that leukaemia is a childhood disease. Only 11% of over 55s thought that they had the greatest risk of leukaemia, whereas in reality cases rise sharply after the age of 55 and 38% of all new cases occur in the over 75s.
Fiona Hazell, Chief Executive of Leukaemia UK said, “It’s extremely worrying that less than 1% of Brits are able to identify the most common symptoms of leukaemia, when 28 people are diagnosed each day in the UK.
“People underestimate their risk by thinking that leukaemia is a childhood disease. In reality, both incidence and mortality rates rise sharply after the age of 55. Raising awareness in this age group is critical in order to treat it early and effectively; and ultimately to improve survival rates overall.”
A lack of awareness of which age groups are most at risk from leukaemia is also concerning, with 43% of respondents thinking that leukaemia is most common in the under 24s.
Whilst it is true that leukaemia is the most common type of childhood cancer, leukaemia incidence rates rise sharply after the age of 55 and 38% of all new diagnoses occur in those over 75. The survey found that only 2% of Brits think that leukaemia is most common in those over 75. The Spot Leukaemia campaign particularly wants to increase awareness among those who are over 65, as this age group is the most likely to be diagnosed with leukaemia.
Zack Pemberton-Whiteley, Chief Executive of Leukaemia Care said, “To hear that less than 1% of the UK public are able to identify the four most common symptoms of leukaemia is extremely worrying.
“Early diagnosis of leukaemia can improve survival. With over 10,000 people being diagnosed every year with a leukaemia, this shows just how important it is to continue to raise awareness of the signs and symptoms and how much work needs to be done.
“We know that our new Spot Leukaemia video may ruffle some feathers but in order to raise awareness we needed to create something that will fly. It’s crucial that if you think you have fatigue, bruising or bleeding or repeated infections that you contact your GP and ask for a blood test. It’s as simple as that and we will continue to parrot-on about it.”
