LATE REFERALLS COMBINED WITH A FEAR OF COVID MEANS DELAYED TREATMENT

The impact of coronavirus is being felt acutely by young people with cancer due to late referrals and diagnoses, a leading cancer charity, The Youth Cancer Trust has warned.  The charity also predicts a sharp increase in delayed diagnoses in this age group as a direct result of the pandemic.

As charities begin to evaluate the impact of the pandemic, The Youth Cancer Trust has seen a fear of the disease impacting young people in seeking medical care.  Young people, (14 – 25) have sometimes been dismissed or overlooked when reporting symptoms to primary care however now, along with the fear of the pandemic, young people are even more put off from seeking medical care or are experiencing delays in accessing it.

Studies into the impact of the pandemic on young people have shown a quarter of 25-29 years olds are very worried about the effect that Coronavirus is having on their lives (ONS, n.d.).  Research published in the Lancet (Lancet Oncol 2020; 21: 1023–34), predicts that COVID-19 will increase the mortality rate of cancer patients between 4.8% and 16.6% depending on the type of cancer. 

The Youth Cancer Trust warns young people could be forgotten by healthcare providers and may be diagnosed late.  The trust is calling on healthcare providers to encourage young people to visit their GPs and come forward if they are reporting symptoms in the hope fewer people will be diagnosed late.

“Since the start of the pandemic, Youth Cancer Trust has been working with over 150 young people living with cancer on a safe and secure digital environment. It has become a huge concern to us that many are experiencing severe mental health issues about treatment delays, issues surround loneliness, visiting their GP or consultant, going back to the workplace, finding a job along with anxieties surrounding undertaking simple activities such as going out to get basic essentials due to the fear of catching Covid-19.” Says Georgina Hillman (Manager)

Like many charities, The Youth Cancer Trust has seen a fall in donations.  During the pandemic, the Trust quickly adapted and continued to support young people with cancer by focusing on providing support online with activities and signposting support.  However, the trust is calling for support for cancer charities from Government to help bolster support for young people with cancer.

-CASE STUDY-

1a) What is your full name, age, where are you from and what do you do for work/studies?

  • Jade, 27 – Essex,
  • Working – signed off sick – a nursery practitioner

1b) When were you diagnosed with MDS and what was your reaction when you found out? What sort of symptoms/pains do you live with everyday?

  • Diagnosed when I was 13, the reaction was shock  It was one of the last tests that they did and in my head I was convinced that maybe that was what was wrong because everything else was fine.  Thinking what’s going to happen next.
  • Over the last 2-3 years I’ve noticed that I can’t do as much- I get run down.  My body starts to ache.  Telling me to slow down.

2) How many appointments did you use to go for per week before lockdown? How regular were your appointments? And what sort of appointments did you go for? 

  • Was in contact with my consultant- appointments used to be every 6-8 months.  But I spoke to them on phone on email.  I had regular checkups- some of them to talk about how I am feeling.  I have Blood tests and scans. 

3) When was the last time you went to hospital? How many times a week do you receive phone calls?

  • Last appointment was in January / February
  • I was meant to go in at the end of March but had to have it over the phone. my consultant booked blood tests in but the GP surgery questioned if I needed blood tests – and then my consultant had to intervene and tell them to do it.  This was really stressful.

4) What do the nurses/doctors ask on the phone? Does this help you in any way, or do you think it is not sufficient at all?

  • They ask how I am dealing with it – I wasn’t very good in march.  I cried, I was so up and down- felt like I wasn’t getting any help – I would just keep the nurses updated – they offered some counselling at my GP- which was hard to get.  They sent me a booklet and I work through that- I am basically doing my own counselling.  Apparently there are shortages- but they said do an online course, but I am doing it with a booklet.

Someone was meant to phone me and check on me but they haven’t.

I had to get signed off work as I can’t work in the nursery.

At the end of the day, it is what it is.  I am signed off and I am at home.  It’s not the right answer but there just isn’t enough support out there.  It’s not just me, there’s not enough for anyone.   

5) What scans and treatments have been put on hold for you because of Covid?

 No – just in March I was meant to get the blood tests -but I eventually got them and I think they’ve come back ok.

It was a nightmare to get my blood tests though. 

6) And how has this affected your health? Has your health become worse?

I do think my physical health would be better.  I was independent before the pandemic but now I have become more reliant on your boyfriend – Matthew.  I won’t go to the shops as I am worried about catching covid-19.  I just don’t want to get it.

7) Are you considered a “high risk” group? Have you been completely self-isolating since the start of the lockdown?  

I am high risk- I was doing shielding and then it stopped- but I was still staying in.  I have only recently started going out for walks.  I only go around the block.  I am still worried.  If I have a panic attack I can home.  I get myself into a state. 

8) And how has that made you feel? How have you been dealing with it mentally? Has it been hard? Do you cry about this?

I just feel drained all of the time – I don’t even do that much and I feel constantly sad. I feel like a let down and a failure- I have gone from working full time to not working at all.  I really miss the children and my colleagues. 

9) How has your life changed since lockdown?

Life had changed completely since lockdown- I feel like I don’t know what is going on. 

10) Tell me about the time you felt chest pains and were shaking. Did you experience any other symptoms apart from this? How did you feel when this was happening?

 My chest goes tight , sometimes I faint with them as well –  sometimes I get the feeling it’s going to happen but other times it just comes out of the blue and I don’t see it coming and I’ll jut faint.  I just can’t control it sometimes. 

11) You said your medication has changed. Why did doctors change your medication? What sort of medication are you on now, what medication were you on before?

 I was on a different anxiety medication but I reacted to it –  so I am prone to being allergic to medication.  My new medication is new and fine, I haven’t had any reactions. 

12) Are you afraid to catch COVID?

I am worried that it would affect my bone marrow – people with illnesses don’t survive.  I am worried I would get seriously ill. 

13) Are you married? Do you have a partner? If so, what is his name and age?

 Matthew, 30 – partner not married.

14) Do you two live together and if so, how has he helped you during this time?

 Been together nearly 6 years and lived together for a year -Matthew does the shopping, he will do all the cooking, go to work and try to finish as early as possible.  He’s a lorry driver and does long hours but if I’m not feeling great he will be able to do shorter hours.

15) Who else do you live with?

Just us 2

16) What do you do at home to pass the time?

 I watch tv and I like to do crafting- I do colouring, I like to paint.  I am making Christmas bits.

17) What is the first thing you will do when lockdown eases? Will you go out or will you still remain at home and take your precautions?

Socialising with my friends – I don’t see anyone – not even from a far distance.  No-one wants to give anything to me.  Can’t wait to catch up and meet them.  Even family as well.  My mum is a carer so she can’t really come and see me- I haven’t seen her in a while. 

 Before I go back to work I need to get a social life again-  I am a sociable person.

18) When do you plan to undergo IVF and are you planning to become a mum soon?

 I am on the waiting list for an egg donor.  It was 3-6 months but I know they are trying for this to be quicker.  Hoping to get pregnant late next year. 

19) How are you feeling currently?

 I feel ok today – some days are good and some days are bad. I’ve managed to have a shower and get dressed.  Some days I’ll just laze around in my pyjamas.