KiranMumsnet (MNHQ) Mon 26-Sep-16 16:42:39

Guest post: "The financial repercussions of a young cancer diagnosis are huge"

After losing her teenage son to cancer, Allison Barr had to return to work before she was ready - she says more support is needed for families in a similar position

Allison Barr

Posted on: Mon 26-Sep-16 16:42:39

(24 comments )

Lead photo

"The last thing I would've expected to worry me was the financial impact of Jak's diagnosis."

When Jak, my energetic 15-year-old son, first went to hospital struggling with chest pains, I was worried - but I never thought I was going to lose him. It was only when doctors started talking about taking bone marrow that I began to understand that our family would not be leaving the hospital unscathed.

It was cancer. At first they thought it was treatable, then they told me it was a rare, aggressive form that had little chance of a positive outcome. I was utterly devastated.

Through it all, Jak was a true inspiration. He just kept looking ahead and carried himself with such dignity and compassion. I was blown away by him in those moments, and I still am.

Everything was so hard to take in. All my energy was taken up trying to process my emotions and cope day-to-day. The last thing I would've expected to worry me was the financial impact of Jak's diagnosis. All I cared about was being there for my boy.

I had been working as a teacher and had recently moved to part-time while I set up my own business. Following the diagnosis, everything stopped and I focused on being there to care for Jak. I was getting some paid time off, but that didn't last long and was based on my reduced contract. So my outgoings very quickly overtook the money coming in.
The financial repercussions of a young cancer diagnosis are huge, but it's a tidal wave you don't see coming. You just aren't looking in that direction and you don't realise until it hits you.

If I didn't return to work, we would be in danger of missing mortgage payments and losing our home. I had to go back sooner than I was emotionally ready and it definitely took a heavy toll.


We were eventually given the news that, despite the aggressive chemotherapy, Jak's cancer was not going to be cured. I was sitting with the consultant and I asked 'are we talking about months?' and she just looked at me in a certain way. I said 'weeks?' and she gave me that same look. At that moment I realised quite how quickly this was going to happen. I just wanted to get Jak home. He stayed with us for 10 more days before he passed away.

It's hard to describe the grief of losing a child. It's not something you can ever be prepared for. One thing I really wasn't ready for was returning to work. I couldn't imagine being there, working with children, while I was still trying to process my loss.

After Jak's death, I realised I would struggle to pay for his funeral. The costs are huge and I had no savings. Luckily, his football team raised money for us and I didn't have to face that. I just don't know what I would've done. Throughout all of this there was a part of me that just wanted to curl up and grieve, but I had to carry on.

I thought of my daughter and my role, as a single mother, of providing for her. If I didn't return to work, we would be in danger of missing mortgage payments and losing our home. I had to go back sooner than I was emotionally ready and it definitely took a heavy toll.

Throughout this experience, I was helped by CLIC Sargent, a charity that provides support for young cancer patients and their families. Their social worker helped me with the incredibly complicated benefits process and gave me a much-needed grant. Their research shows that during active treatment, parents spend an additional £600 per month on average as a result of their child's illness. Now they are petitioning the government to provide much-needed financial support right from the point of diagnosis.

I know there are other families like mine who are caught up in the whirlwind of childhood cancer. It turns a family's entire world upside down. From the moment he was diagnosed, Jak wanted to help people. Whether it was through his own blog, or just the people he spoke to about his experiences. We formed our own charity to continue his wishes, called Team Jak Hopefully he can inspire more people to take a longer look at the real costs of childhood cancer and see how we can get more support for those families forced into a reality so many people can't even imagine.

September is Child Cancer Awareness Month.

By Allison Barr

Twitter: clic_sargent

BombadierFritz Mon 26-Sep-16 16:48:23

thank you Allison for sharing this. it is just horrific to imagine. I am so sorry you lost your wonderful boy. dealing with the financial stress at the same time is unimaginable.
I will certainly look up your charity and wish you all the best with this. there is good work being done on a small scale by individual charities, like the zak vali foundation that will help to cover the funeral costs, the last thing any parent wants to think of, but you are right, government support is needed right from the beginning
all the best xx

junebirthdaygirl Mon 26-Sep-16 18:26:57

That is heartbreaking and lm so sorry. I totally get where you are coming from financially. Here in lreland one charity that helps families who have a child with cancer is Aoibhinns Pink Tie. They pay bills cover transport costs etc for families. They also plan activities for the family together. It's so so needed. I can't even imagine how people manage. My thoughts are with you.

childoftheeighties Mon 26-Sep-16 18:44:35

I remember seeing your lovely son on the news. I'm so sorry for your loss. It is really a scandal that families like you have the worry of financial hardship to deal with at such a traumatic time. Best wishes to you and good for you for raising awareness of this issue.

Squeegle Mon 26-Sep-16 19:55:14

Thank you for sharing. X

callycat1 Mon 26-Sep-16 20:48:21

How awful for you all, I will donate. Thank you for sharing flowers

YouCanDoThis Tue 27-Sep-16 04:16:38

I am sorry for your loss. It's not just cancer that is financially crippling. My dc recovered from a long critical illness. We are still picking up the pieces financially, emotionally and physically. There has been no help out there at all.

BitOutOfPractice Tue 27-Sep-16 07:50:24

I'm so so sorry for your loss. I cannot find the words to express that any better

CLIC Sargent is indeed a wonderful wonderful organisation. My dear friend's son was diagnosed with cancer nearly a year ago. He needed specialist treatment in central London which was obviously a very expensive time for my friend who, like you, gave up work to care for her son. CLIC Sargent helped all the way, including providing accommodation for her just round the corner so she could stay with her boy while he was in hospital.

PinkSwimGoggles Tue 27-Sep-16 10:52:01

sorry for your loss.

and it's not just cancer, having a child with a chronic disease makes it very difficult to juggle work and all the hospital/therapy/diagnosis appointments as well as trying to have as much normal family life as possible.
I remember a refereal to a specialist hospital 3 hours drive away, which meant a night in a hotel for us. very disruptive and expensive.
no one pays for that. what if you can't? I don't even know if there is a hardship grant available.

namechangealerttt Tue 27-Sep-16 11:06:09

Just for anyone reading this, most Critical Illness policies contain half of the value of your policy capped at £25K which gets paid out if your child has a critical illness as an additional benefit to having the policy.

DrLockhart Tue 27-Sep-16 18:09:34

Sorry for your loss.
CLIC helped a friend of ours and her family throughout diagnosis and their dd's death. I will never forget the support. My DH ran the London marathon last year for CLIC and in memory of their dd. A really great cause.

enolagayits0815 Thu 29-Sep-16 01:49:16

I'm so sorry.
We have had a similar situation, over 12k in medical bills for my Dd.

Toddlerteaplease Thu 29-Sep-16 08:33:11

Families of children with cancer get a lot of financial and extra support that families of children with other illnesses. That are just as critical just don't get. It's very unfair. My local hospital has a house for oncology children to stay in together with their families. Non oncology children can't use it. Drives me nuts.

expatinscotland Thu 29-Sep-16 08:52:44

'Families of children with cancer get a lot of financial and extra support that families of children with other illnesses. That are just as critical just don't get. It's very unfair. My local hospital has a house for oncology children to stay in together with their families. Non oncology children can't use it. Drives me nuts.'

WTAF?! It blow my mind that a) people truly believe this b) are bitter about and jealous of these childrens' families.

Thank you, Allison, for sharing Jak with us.

On 25 November 2011, our then 8-year-old daughter was diagnosed with Acute Myeloid Leukaemia (AML). She needed immediate treatment and we were in patient from that night until 1 February of the next year, most of it in strict isolation.

My husband had to quit work immediately because we had a 5-year-old daughter and a 3-year-old son with autism at home and our daughter had to be treated at the nearest children's hospital which was 2 hours from our home. He was therefore ineligible for JSA. We had to wait 3 months to get DLA for our daughter (ironic because you can apply immediately if terminal, but she died less than 8 months later with no terminal diagnosis - she died of pneumonia following an allogenic stem cell transplant) and then claim gateway benefits.

We experienced financial disaster immediately and no, Toddler, we didn't get a golden ticket hmm. My daughter had to be kept away from other children much of the time due to immuno-suppression. Many of these children are confined to hospital for months on end.

I had to live with her. It cost a fortune. She would take intense cravings and I would do anything to meet them because she was eating so very little as it was and losing weight. I had access to a microwave and kettle for me. So that's how I had to eat every single meal. I had to cart all our clothes to the launderette a mile away. And it was often. She soiled her clothes often due to the drugs she was on.

Then she died. You know that myth about how all children's funerals are free? It's just that, a myth. Her plot cost £1100. Her headstone cost £1900.

My husband had to go back to work 5 weeks later as debt had mounted and benefits stop in 8 weeks.

It took a huge toll on our already fragile mental health.

I am so very sorry for your loss, Allison. And thank you for bringing awareness to this issue.

Toddlerteaplease Thu 29-Sep-16 09:34:38

Expat. I'm truly sorry to hear about you daughter. I am a paediatric nurse in a large teaching hospital. My point is that there is ( in my hospital any way) a huge amount of extra support and facilities available only for the oncology children. Clic Sargent, Billy's house, teenage cancer unit, etc which are only available to oncology children. Children with CF, short bowel, cardiac problems, CP l, long term vent, etc have to go through the hell of having a sick child in hospital with absolutely no extra support. Some of our kids are in hospital for years.

Amandahugandkisses Thu 29-Sep-16 18:13:14

Thank you for sharing the story of your beautiful son Jak with us. I'm so sorry for your loss and on top of this, the financial burden you had to overcome.

Antiopa12 Thu 29-Sep-16 18:18:50

The financial impact of caring for a very sick child is indeed tremendous, not just the loss of salary but all the additional costs in trying to keep the child as well as possible and trying to keep the family together and cope with frequent hospital admissions
if your child dies there is no way a parent will be in a position to start job seeking as soon as the Government expects you to. At the very least the Government should extend financial help to families either through extending the current paltry run on of Carers Allowance or allowing the person who has given up their job to claim contributory JSA. My son's condition is life limiting , He has done very well to get this far and I have had time to save a bit for his funeral .
Thank you OP for highlighting this subject. I don't know what words to use OP but I am sorry that your darling boy has died. Condolences to you Expat too.

CoteDAzur Thu 29-Sep-16 20:49:39

I remember your DD, expat flowers

Antiopa12 Fri 30-Sep-16 00:33:01

Apologies Allison I should have used your proper name.
It is terrible that families have the added burden of debt on top of the emotional trauma of their child passing away.

MrsDeVere Fri 30-Sep-16 14:30:15

Message withdrawn at poster's request.

expatinscotland Fri 30-Sep-16 14:37:16

Wow, toddler point-scoring using kids with life-threatening illnesses. You should think black-burning shame of yourself.

We got a couple of cheques from CLIC, too, MrsDeVere, and that's it. But hey, toddler seems to believe we were coining it and living a life of luxury.

And works with children! All the powers of light and dark help us if our children are treated by someone with such a sick fucking attitude.

Toddlerteaplease Fri 30-Sep-16 14:55:09

I am not trying to point score. Or play top trumps with any illness. Any illness in children is terrible. All I am saying is that in my experience of working in my own hospital is that the oncology children get much more in the way of support. That other families with chronic illnesses just don't get. This may not be the case in all hospitals though. All families with what ever illness are under similar stresses.

Toddlerteaplease Fri 30-Sep-16 14:57:42

I don't believe anyone is living a life of luxury. No one does with a child in hospital.

Toddlerteaplease Fri 30-Sep-16 15:05:00

I apologise for anyone I've offended. I'm not belittling anyone's Illness or suffering.

expatinscotland Fri 30-Sep-16 15:08:39

Yeah, you are, Toddler (an apt name). And you are using the guest post thread of a bereaved parent to do it. You continue to do so on this thread despite its being pointed out to you what poor taste that is in.

My child's protocol was intense, it had its own sort of stresses - she had 4 rounds of back to back chemo. Each round was all in-patient, 3 or more drugs through her Hickman line, 7-10 days. Strict iso for every single bit of it bar 6 days in the measly 7 months and 29 days she lived after the diagnosis. Because each one of those cycles was actually 4-6 weeks as we waited for her counts to rise again and then hit her with more. Then she had a 5th round of conditioning chemo for an allogenic stem cell transplant. And it killed her. Her blood was like pink water after she died.

Our stresses were different from even other children with cancer due to the nature of her disease and the nature of theirs.

But hey, continue to use the mother of a dead child's thread to keep banging on about your point.

I'm so sorry, Allison. It's a hard road we walk and again, thank you for sharing your son with us. My daughter's name is Aillidh. She was 9 when she died. flowers

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