Who can help to get through to a GP

[lillipilli]

I am asking for a help for a friend. Their son was diagnosed with neuroblastoma at 5,5yo which is a rare age for this and recieved chemo, high dose chemo, stem cell harvest, surgery, radiation and immunotherapy is next.

My friend is of course heartbroken through all of this and they pretty much lived in hospitals for many months now. She is depressed and has panic attacks and due to that and caring responsibilities is unable carry on working.

She needs her GP to write a letter confirming this which she can send off to her insurance company but the GP is fobbing her off and they only sent a copy of a record rather than a letter in a format required by an insurers..

My friend isn't from the UK and doesn't have family here and it can be difficult for her to advocate for herself.

So I wondered whether a) I can call and try to ask her GP for that letter? , b) anyone better than me could do it?

Thank you for reading this and I would be thankful for any advice

My thoughts are with everyone going though this ridiculously terrible and unfair journey 🙏

Get a private gp just for this issue and pay for exactly what is needed. It’s the only way sometimes

The hospital team should help with this. It's a fairly standard thing that they will help with. She should have a CNS nurse and have access to CLIC sargent.

So has she had a fit note (sick note) from her GP for her employment and now she wants a letter to claim on her insurance company as she has some sort of critical illness policy, have I got that right? I had no trouble getting a sick note for employers in the same circumstances but letters for insurance companies are often chargeable. It might just be that she needs to pay for it. I would contact her Young Lives (formerly Clic Sargent) social world ask them to help her sort this out. Or ask her to forward you the email from her insurance company so you can explain to her exactly what is needed. GP will not deal directly with you.

Her insurance company should have provided a pro-forma for the GP to complete, they don’t do ad-hoc letters because the doctor doesn’t know which facts the insurer requires.

The problem is not the GP, it's the insurance company. Filling in these forms is not part of NHS work and for the remuneration offered by the insurance company, it is sometimes not worth the effort, Once they have the records, the insurance company should have their own doctor to decipher the information they need.

Thank you for your reply, yes they had 2 types of insurance - one for critical illness for the child, which they had no problem with. Another - loss of earnings for her. So it is about her ability to work in the circumstances. So I am guessing, perhaps, the CNS would not do that for her?

Thank you, this is super helpful <3

The CNS would not become involved in this. Hopefully the hospital referred your friend's child to Young Lives vs Cancer and they allocated a specific worker to her. In my experience the Young Lives vs Cancer staff are excellent at beating down beaurocratic doors - ie. drafting forms for blue bages, Disability Living Allowance, guidance on Universal Credit and Carer's Allowance, writing letters of support, applying to charities on their client's behalf (e.g. trips for the child, food banks for the familyand financial support for the family etc). So in the first instance, I would ask your friend to show her Young Lives vs Cancer contact her policy requirement regarding the letter. They should be able to clarify matters.

If your friend doesn't want to involve them, Maggies is another option - although they don't provide specific support for children with cancer, they do help adult carers with paperwork and guidance on benefits. The chap I spoke to was brilliant, and he followed up with phone calls and emails and made sure to check whether I got DLA within the required time.

If the GP continues to be a stumbling block, do as others have suggested and pay a private GP for the letter.

https://www.maggies.org/

@C152 oh thank you ever so much, this is so incredibly helpful. I know she is in touch with a couple of charities but don't know which. Regardless, this really helps to guide her and ensure she isn't wasting time and effort knocking on the wrong doors. Thanks again xx

@lillipilli I hope your friend gets on ok. It's shameful how many hurdles are put in front of sick children and their parents looking for help and support.

I just remembered - you can self refer to Young Lives vs Cancer, but they completely ignored me when I did that, even though my son was being treated at a hospital. It wasn't until we were transferred to GOSH that he was automatically allocated a Young Lives vs Cancer rep. So if your friend hasn't heard of them, suggest she ask her CNS to refer her. As I said, worth their weight in gold for the time they will save her filling out forms on her behalf, calling and chasing things up, banging down doors etc. Maggies are even better.

This is a bit off topic, but in terms of other charities, Spread a Smile is brilliant for kids and their families. If she's not already on their list, I'd suggest she check it out. Everything is free, their volunteers (singers, magicians, balloon creators, artists) visit hospital wards, they arrange many days out throughout the year to places like the theatre, lego themed days, F1 racing etc. They also offer bespoke sessions online for kids too sick to get out to meet them in person, and they ring kids on their birthday and will offer an online entertainer for free.

https://spreadasmile.org/

Starlight used to post excellent play boxes direct to a family's home, but I think they only do it via hospitals now. Still worth a look and asking the hospital play specialist or CNS (if they're the helpful sort) if they can apply for one:

https://www.starlight.org.uk/how-we-help/health-play-services

Cancer Support UK posts very good free kids kits to the family directly. Ours had everything shown in the photo online and the lavender stuffed rabbit is the best thing ever. DS finds it enormously comforting:

https://cancersupportuk.org/cancer-kits/kids-kit/

@C152 Oh, thank you so much for all this truly helpful info and your good wishes. I will pass on this message to her, I know she will be really touched. They are an amazing family and have very little support system here. I am myself not from the UK originally too so trying to help navigate all this as best as I can, and some GPs can be better than others too.

Thank you so much for your help, and I am sending the very best wishes to you and your loved ones too. And I am so sorry to hear that you and your son had to go through all of this too 💙

PS on another note if someone finds it helpful who stumbles across this thread, I would always recommend to other people to try and find a different GP if theirs are objectively falling short. You can search CQC rating of the practice online and I can attest that from personal experience going from a "required improvement" to "Excellent" was just like entering another world I didnt know existed.

It’s possible that the GP will charge for this kind of document, as it will take time to write and review her records and essentially take the care needed to make a thoughtful and convincing case for her to submit to her insurers.

Interested to learn if she manages to get the second claim paid. I got the critical
illness one fine, but loss of earnings one they will not pay. Claim I am having ‘ a normal response to a stressful situation’ and not a mental health issue. GP, mental health nurse and psychologist not good enough evidence apparently.