Navigating the crap guide

[C152]

A while ago, I made a joke on here about it being nice if there was a guide to navigating all the crap that comes with your child being diagnosed with cancer. There have been lots of times I've discovered things too late, that would have made life easier if I'd known about them earlier. A friend recently asked if there were any tips I could pass on, which made me think again that perhaps we could share practical things we've found helpful, in case someone needing help comes looking here at 3am...So, whilst acknowledging that everyone's circumstances are different and we all need help in different ways, here are some of the things that sprung to my mind:

INSURANCE POLICIES -

• check absolutely everything to see what support you're entitled to, like a free EAP service or counselling sessions through your work
• critical illness insurance policy (children are sometimes covered under their parent's policy)
• Private medical insurance or health cash plan - these will often include a cash rebate for overnight hospital stays, including a parent staying overnight with their sick child
• Group Income Protection - if these include a mental health section, you should be covered if you or your partner become so unwell with the stress of caring for your sick child that you cannot work

PRIORITY SERVICES REGISTER - www.thepsr.co.uk/ -

get your name on here so that you are among the first the utility providers contact if there is planned work or an emergency that will disrupt gas/electricity/water. They work with other agencies, like emergency services and the Red Cross to ensure you receive the extra support you need in the case of an unplanned power/water outage.

SICK PAY/COMPASSIONATE LEAVE POLICIES - check what your company policies are and, if you have a partner, discuss how the practicalities of supporting your child in hospital will work. Who is going to take time off? Will you take it in turns? For how many days and nights at a time? Who's going to bring the food in each day (don't count on you or your child getting fed in hospital)? Who will attend meetings with the consultant if you can't both be there? If you're both meeting with Drs. who will be with your child etc. Who will look after children/pets/elderly parents at home?

PLEASE OFFER ME A SEAT - get a free badge/card for your sick child from TfL https://tfl.gov.uk/transport-accessibility/please-offer-me-a-seat Since I don't drive, we usually travel everywhere by public transport, and it's useful to have one of these if you need to ask someone to stand up.

SUNFLOWER LANYARD - consider whether this may be useful for your child https://hdsunflower.com/uk/shop/lanyard-packs.html Unless he's in his wheelchair, DS looks like any other kid when he's wearing a hat. We've found wearing one of these in busy places like train stations and airports often means people are more accepting that he can't move fast/sometimes loses his balance and often can't hear what people say to him in a noisy environment.

MEDICAL ID ALERT BRACELET/CARD - https://theidbandco.com/generic-medical-identity-card/ I found it comforting to have the card in DS's bag when he went to school (particularly during treatment, when he still had hickman line etc in), so that if an emergency happened, the school could give the card to the medics and they'd immediately know his condition, that he has a shunt, who his consultant was etc.

ACCESS CARD - https://www.accesscard.online/how-it-works/ - again, consider whether this would be helpful. Not only does it use clear symbols to quickly communicate your child's needs (e.g. wheelchair user, can't walk more than 50m, needs a carer etc), but it is accepted as proof in most venues that you are a carer, offering you free or discounted entry, or access to quieter times at busy venues.

VOMIT BAGS - I bought a box from Amazon. Found it useful to keep one in my bag when we were out.

CHARITIES -

Spread A Smile - https://spreadasmile.org/ set up by two women, one of whom had a nephew treated at GOSH, this is an absolutely amazing group of people. They arrange free days out for children and their families, offer free personalised calls from Santa for kids at Christmas, a free online birthday entertainer, and their volunteers (therapy dogs, magicians, singers, artists, balloon makers etc) visit an increasing number of hospitals. I don't know how they do it, but they seem to take a personal interest in every child.

Cancer Support UK - https://cancersupportuk.org/cancer-kits/order-a-kit/ - will post a free kid's cancer kit to your home address. Ours includes things like warm socks, a notebook, pens, a big soft toy etc.

Cyclists Fighting Cancer - https://cyclistsfc.org.uk/ another really wonderful group of people. They offer the free, long-term loan of bikes to children with cancer, to help them exercise during/after treatment.

BOOKS -
Follow the Child by Sacha Langton-Gilks

Childhood brain and spinal tumors - a guide for families, friends and caregivers (ok, so this is American, but given that the treatment options for brain tumours haven't really changed in decades, I found the info still relevant, simply explained, and I liked that personal stories are scattered throughout the practical information)

What's Up with Rachel - https://www.amazon.co.uk/dp/1906935092?ref=ppx_yo2ov_dt_b_fed_asin_title - I wouldn't say this is good (and I've yet to find a book/video that is actually accurate), but it's the best book I could find to help explain to DS what was happening/about to happen. (I didn't actually read him the book - he wasn't interested - but it helped me formulate child friendly ways to explain what's actually pretty complicated and what I really didn't understand myself.)

YOUNG LIVES vs CANCER - https://www.younglivesvscancer.org.uk/

You can self-refer, but it's better to get your CNS or someone at the hospital to refer you. It depends on the individual assigned to your case but, in general, they're good at dealing with the bureaucratic things, like writing letters of support for getting a Blue Badge or Disability Living Allowance, referring you to other charities who may be able to offer things like days out, practical items to help with schoolwork or keeping in touch with friends (like a laptop or cheap mobile), food banks etc.

MAGGIES - https://www.maggies.org/ I have only ever used them for support applying for DLA, but the chap who was assigned to help me was absolutely amazing. Definitely worth calling them.

HOSPICES - ask to be referred. You'll be incredibly lucky to get any support at all through the NHS. Whilst not all hospices have the same services, and the waiting lists are very long, you may find they can fill in some of the NHS gaps, like offering hydrotherapy, physio, psychological support, art therapy, respite care, as well as end of life support.

EDUCATION -

• tell the school and check to see whether your local council will provide a private tutor/teaching resource while your child is in hospital. (My local council do provide that for a small number of hours, but I didn't know about this until it was no longer of any use.)
• Also get the EHCP ball rolling as soon as possible.
• Ask what educational resources the hospital has (e.g. UCLH has a hospital school, which we found brilliant; GOSH does not, and what little teaching support there is, is only available to patients in hospital for more than 7 days)

OUTSOURCE RESPONSIBILITIES / ACCEPT HELP - this is not a short journey. This is your life turned upside down for an unknown length of time and there is a finite amount of time and energy you have. Make your life as easy as possible, as you'll need all your strength. Who else are you responsible for that you may, in reality, no longer be able to support? Are you currently caring for elderly parents as well? What other support can you get in place for them so that you can care for your child? A small thing, but I gave up 'tough' washing up. If I needed to cook something in the oven, I'd use single use foil containers and chuck them out once used. I didn't have the energy to be scrubbing baking dishes. I also got over the embarassment and took friends' offers of help at face value. When they asked what they could do to help I said, 'I need someone to drive me and DS to the hospital on this date'. Another friend didn't take no for an answer when I said I wasn't hungry and made me regularly come to her house for dinner. My friends have also sat with my child in hospital and read to him or watched crap on his tablet with him so I could go home and take a shower and grab 2 hours sleep. My ex-boss said he didn't know what to do and thought sending me an email with lots of links in it would probably just make me feel overwhelmed, so he called Maggies on my behalf, gave an outline of the issue and got the name and contact details of someone who could help and said, when I was ready, this man was expecting my call. Most people will want to help you but won't know how. If there is something specific you need, ask.

I hope this helps someone else out there. Anyone going through similar, feel free to add to this.

@C152 this is such a helpful, kind and pragmatic post for anyone on this crap journey.

Exams and access arrangements

For those with a DC in an exam year ask the school to make sure they apply to JCQ for access arrangements, this means extra time, a separate place to sit exams, rest breaks etc if needed. It also means that if they are not well enough to sit exams etc they can receive a grade based on their attainment and staff predictions. DS’s nurse from Young Lives v Cancer organized all of this and liaised with the school on our behalf.

Free audio books - Calibre audio

This is a great lending service for those who find reading print difficult due to visual impairment, or other physical or neurological conditions. It's free to those under the age of 25, there are lots of different ways to listen and there are a wide variety of books for children, teens and adults.

DS finds traditional reading tiring and quite taxing on his energy levels, so this has been a welcome alternative.

https://www.calibreaudio.org.uk/services

Brilliant @C152. I would add:
-double check your appointments. Eg for a scan does your child need a cannula and has a separate appointment been made for that?
-if you need to use hospital transport make sure you have the contact details and do not just assume it will turn up. And I would suggest the return trip being later than you think as clinics often over run and the drivers won’t always wait.
-Bol ready meals are the best of a bad bunch in my view- available in chilled section is supermarkets and has actual
vegetables in.
-ask if the discharge letter can be emailed to you. Many hours wasted waiting for paperwork when desperate to leave.
-ask if your school has or will get an AV1 ‘robot’. Allows remote access to the classroom from hospital. Helpful staff at AV1 themselves- some LAs will fund or loan them.

I expect I have more 😉

Uh oh am having a name change fail🤣

Those are great tips @Oxonc3 . Thank you for adding!

Check everything- don’t assume anyone is doing their job properly. This includes getting print outs of all blood tests, scan reports etc. We have been badly let down by well-respected experts in their field.

Ask for a second opinion if you are in any doubt.

Join social media groups and charitable organisations dedicated to your child’s particular cancer (especially important if it is a rare cancer/a cancer rarely found in children.

Search up national and international guidelines/recommendations on the treatment of your child’s cancer and ask why they are not being followed if your team deviates from them (assuming the cancer doesn’t have an established care pathway).

Get PALS involved as often as you need to.

Don’t worry about whether consultants like you - good ones don’t take offence at being questioned.

When I’ve got the energy, I’ll start a thread that details the s**t-show that has been our cancer journey, but thank you to everyone who has shared their experiences in other threads - I only discovered this group last night, and I already feel better (that’s obviously a relative term).

I would second @Seeingred70 advice to check everything and to become "that parent" and step in when people are making mistakes (like not washing their hands before touching your child's line, for example).

Also, I take photographs every single time they weigh DS/check his height, and I take a photo of whatever info they post outside his room (not all hospitals do this, but GOSH has an A4 sheet of paper stuck to each patient's door with their height/weight and other details) and all drug bottles/blood/platelet bags. Multiple times the hospitals have failed to take down admission information, and have given incorrect dosage of medication, causing a severe reaction, so a photo gives me dated evidence.

If your child is on regular, prescribed medication, do not surrender your child's drugs if you're admitted to Kings! Keep them with you, in the room. If you hand them over to the nursing team, you will never see them again and your child won't receive their medication during their stay (which is a particular problem when some medications need have a weaning off phase...).

If you are told that the treatment being given is the best, don’t assume that is correct. Tired though you will most certainly be, check check and research it yourself.

Another book, although there's a free PDF copy online: https://www.acco.org/wp-content/uploads/2025/03/ECWC-2027_PDF_Complete.pdf

Not great for UK posters, as it's very USA centric, but I really like the parent experiences scattered throughout, and they gave me some ideas I hadn't thought of e.g. searching for adaptive sports lessons, like skiing.

It's also validating to read about others who have been through the same or similar, particularly when medical professionals deny your child's experience.

If you have other children who attend a different school, make sure their school also knows what is going on with their sibling and how to support them. Even in the same school, not all everyone will make the connection (especially if your children have different surnames or your surname is shared by several families) so make sure you inform key staff.

Consider adding an additional friend/ neighbour/ relative to the siblings' lists of emergency contacts and those with consent to collect them from school.

Cataracts and large print books -

If your child's had high dose radiation to the head and high dose chemo, they're pretty much guaranteed to get cataracts. The speed with which they develop is different for every child, but once it starts to deteriorate, don't wait to long to have corrective surgery, as the nuero surgeon warned us if you wait too long, surgery won't help and they'll eventually end up blind forever.

When it's in its early stages, I found it helpful to use a toddler plate, which has each section divided up, then always put regular food on the same section of the plate, and place the plate in front of them in the same way, so they know what they are eating and can feel where it is, even when they can barely see it (if at all). e.g. I always serve the same veg with dinner, so each type of veg always goes on its own section of the plate. The main element, like meat, always going in the largest section etc.

Have a mini handheld light (not a torch; bigger than a torch, but not so big and heavy that they can't hold it in one hand), that they can pick up and hold close to things, to help them see. This works better than just having an overhead light on, as they can move the light over what they want to see, to avoid shadows.

Contrast colours are easiest to see when it comes to schoolwork (i.e. thick black marker pen on pale piece of paper). Writing on pale pastel coloured paper, like yellow or pink, is easier for most people to see, as it reduces glare (which also helps with fatigue).

I've just discovered that the Guide Dog Association sell large print books, with the print in different sizes, with different line spacing options, different font and different coloured paper. I'm really impressed! Their website warns it can take a few weeks for the end product to arrive, but it only took a few days and the book looks like a normal book (just a bit bigger!), with a proper cover and binding.

They also sent out a free sample book showing all the different font, size and paper options, so DS could look through and pick the combinations that were easiest for him to read.

https://www.guidedogs.org.uk/getting-support/help-for-children-and-families/living-independently/customeyes-books/

This is such a great list and so thoughtful. As a parent who has been on this horrendous cancer journey for over 10 years I totally agree with you on every point. I wish back when my daughter was first diagnosed that there had been a resource like this. Back then CLIC Sargent (now young lives vs cancer) were quite helpful but now our primary hospital doesn’t have a link with them anymore.

In our experience hospitals do quite regularly mess up! I know it’s added pressure but try to keep on top of appointments, pre check the day before if necessary especially if your journey is a long one. Keep a spreadsheet of regular blood test results, particularly the chemo dependent ones (Neuts & platelets) we’ve been turned away for chemo before and after arguing realised they were looking at the week before’s results!

sending love and solidarity to everyone going through this. Sometimes you really do feel alone in this world x