Son's Brain Tumour - Lack of any communication from GP

[eversoslightlytired]

Outing myself here but in 2016 my then 8 yo DS was diagnosed with a brain tumour. He spent four months in hospital after an operation which removed the majority of it but not all. He has been left with disabilities both physical and cognitive. Still my boy but a slightly different version. In 2017 the tumour became active again and he went to the US for treatment and was there for 11 weeks.

During all of this time, from diagnosis til today, we have NEVER heard anything from our GP.

The operation he had in 2016 put him in precocious puberty and he has hormones injected every three months to stop this. Since he has come home from the US we have discovered a side effect is that the therapy has lowered his growth hormones and he will need to start daily growth hormones from July onwards.

Today, my neighbour dropped off some post that went to his house by mistake from the hospital (he has been away), post marked 22 March. This letter was a copy of a letter sent to our GP and says he needs medication as he now has low thyroid levels. The letter was requesting the GP start him on medication. I have heard nothing from the GP at all. This latest lack of communication from them for me is the last straw.

Am I wrong to be so annoyed that they have never contacted us, or am I being unreasonable and shouldn't have expected to hear from them?

I'm a little surprised the hospital is asking the GP to do anything. Most of the children I have encountered with malignancies are managed between the primary treatment centre, the local paediatric oncology shared care unit (where one exists - local general paediatricians if one does not), the paediatric oncology outreach nurses, and in some cases the local children's community nurses.

Having said that, in other cases where a hospital requests a GP to start medication, I would tend to anticipate it taking several weeks to happen. Hence if it's something needed sooner than that, the hospital would usually arrange the first few weeks, so that the GP can take it on thereafter. Where something has been requested from the GP, by the hospital, where it is clear that the hospital has also notified the patient/family (such as by copying in on the letter), I would anticipate the GP arranging the prescription, but them assuming that the patient/family knew to pick it up. A delay in coming to pick it up would thus probably imply to the GP that the hospital had done their part in arranging the initial supply, rather than that post had gone astray, so I would not expect them to chase the family.

I am really sorry for the difficulties you, your DS, and your family are going through. But in general I would say it is normal for the GP to have very little involvement, because, to be blunt, it is far more specialised than they are used to dealing with, and they usually don't want to add even more appointments into the mix.

Thanks nocoolnamesleft. We are under so many different departments at the hospital it's hard to know who I should and shouldn't be hearing from. Nobody has ever said that about the involvement of doctors so it is good to know and make me not so grrrr about them. I'll give the doctors a call on Tuesday to see if the prescription is ready for collection.

The gp will be expecting you to book an appointment to sort his meds

Rightly or wrongly it’s you that needs to lead and coordinate his care not any of his drs. It’s a massive burden on a parent.

And agree - usually the consultant/specialist should start the treatment - the gp then issue it going forward.

I’m so sorry for what you are going through.
My mum has a brain tumour and the lack of communication between different doctors/consultants etc is a constant battle. With my mum all her main communication is with the consultants in London, but she can never speak to anyone and waits months between appointments. She see’s her GP fairly regularly but he shys away from getting too involved and just helps her with the minor stuff. I think generally the GP’s leave it to the consultants. Very frustrating.

Sorry about what you are going through.

You might like to look up a relatively new charity, called Success, which is aimed at supporting children (and their families) who have survived brain tumours in childhood. Sadly endocrine problems like you describe are almost universal.

Good luck!

Thanks everyone. Sorry for disappearing. Been away and then daughter's birthday party. I will definitely contact GP for the prescription. Thank you oxcat1. We are definitely struggling with lack of support so I will be looking them up.

My son has a rare condition, nothing like this but complex. We’ve seen his GP once who made it clear he had no idea what the condition is, didn’t really care to find out, and couldn’t be any use to us. That’s been that really! When my mum has cancer her GP was utterly wonderful so I guess it depends who you get.

Oh, I’ve also been on the drugs I suspect they’re giving him (GnrH analogues?) and I am convinced it’s caused something called central hypothyroidism but again, the GP doesn’t know what it is and after years of asking he spoke to an endocrinologist who insisted this is impossible (it’s not). Worth reading up on it as it may be being caused by a pituitary issue and not the thyroid gland itself. If you get any info relating to the meds and thyroid issues please do let me know as it’s a real struggle to get much information.

I think I was just expecting a "hi, sorry to hear about DS. How are you all doing". It is the same surgery that I have been with since I was born and when I was diagnosed with breast cancer they called me in just to tell me they were thinking of me and asking how I was doing. Mind you since then (2014) all the original doctors have left/retired and we now have a brand new set of Drs. I guess the old style of "doctoring" has gone.

It may well just be in the pipeline. Especially if it were only posted 22nd March. The letter may not have got to the GP until the beginning of last week so depending on how fast the turn around is there could be a letter in the post. One thing that I wish hospital letters would make clear what they expect us (the GPs) to do. Some letters say people need repeat bloods but have they told the patient or is it up to us to call them in? Same with medication. Tell us if you have told the patient to collect the medication or whether we have to phone them.

Agree with GP involvement for cases like your son's. The hospital usually manage everything. I'm a GP and have had a young patient with a BT they always went straight to the hospital. My late husband also had a brain tumour and if ever he was unwell we phoned the nurse specialist. Rarely saw the GP.

This must be a worrying time for you and I wish you and your son all the best.

FancyNewBeesly. The low growth levels and low thyroid levels were side effects we were warned about of the proton beam radiotherapy he received last year so it hasn't come as a surprise.

The 22nd March is only a week ago. The chances are it hasn’t been processed by them and put on the patient’s records.

Hope you are ok OP, sorry you are going through all this. I have found the same with our GP, I went through breast cancer in 2016 and DH was diagnosed with a brain tumour last year, neither of us have had any communication or support at all from the GP.

missyB1 I am so sorry to hear your news. My thoughts are with you. I was diagnosed late 2014 and DS was diagnosed early 2016. My DDad in December finally succumbed to the prostrate cancer he had been fighting for 10 years. Cancer sucks

I think I know where you're coming from. I'm surprised they haven't called to say, we've received correspondence about DS, how are you all doing?, please let us know if you need anything.
My DS was referred to Paediatrics by his Health Visitor aged 2 (and later diagnosed with autism). Our GP phoned when they were copied into his referral to say just that.

My son has a rare condition, nothing like this but complex. We’ve seen his GP once who made it clear he had no idea what the condition is, didn’t really care to find out, and couldn’t be any use to us. That’s been that really!

We had pretty much the same experience with our daughter. No support or involvement from the GP to a point that clearly surprised our consultant. They not only failed to attend any TAC meetings about her treatment but didn't even acknowledge the request. We wondered whether they are just too busy to do things like that but the other professionals said it was unusual to be ignored like that. We had to manage 13 different prescription medications without any help at all from the surgery, and in fact frequently their actions made it harder.

Sympathies, OP.

So sorry to hear about your DS and sorry your doctor isn't more helpful. I have a lovely doctor who will call me once a week at times but its very rare I think. Even still a lot gets lost between hospital and GP. I think the GPs are just so busy they maybe don't have time.

I would expect them to get in touch re a medicine but mine also didn't. I record everything in a Word file as a fair amount gets lost. My husband is French and their care and cancer success rates are so much better but its better funded too and all computerised.

I'm sorry to hear about your son.

I think communication within the NHS is woeful - between different depts within the same hospital, between hospital and GP and between different hospitals. 1 hospital that I'm treated at takes months to write to my GP so if they want the GP to start a new medication, or change an existing one, it takes forever. I now carry a folder around with me that contains all my blood test results and clinic letters so that I can show different specialists because there is just no record otherwise.

No wonder things are missed or patients lost to follow up.

I know what you mean SweetieBaby. I'm always surprised when I get a copy of one letter from one department at the children's hospital posted to another department in the same building!!

I know. It's crazy. As are the mistakes within the letters - just this week I have developed Chromes disease (rather than Crohns that I've had for 18 years). Ok so that's quite funny but often stuff is just wrong. The letter will mix up left and right or report disease in the wrong joint. I then have to argue that it's a mistake because the information within a letter is believed above all else. Fortunately in my case I only have arthritis but what if it was more serious? How can mistakes not be picked up and corrected? If I didn't know about my own health I might just accept these mistakes and not know to challenge.

Yes it’s a good idea to keep all the letters and clinic reports etc in one folder and take it to all appointments

Communication within the nhs is shocking

Hi
DD has a complex, life limiting condition that requires quite specialist management from consultants, we very rarely contact her GP other than for basic things and they have never contacted us although there are a lot of locums in so this might not help as we never see the same doctor twice. We are currently having issues around medication that her consultant wants prescribing in liquid form but GPs will only give tablet so we drive up to the children's hospital every month to collect it! So I wouldn't necessarily assume they will prescribe it and would make an appointment to see them. Our GPs (understandably) not keen on managing her care and all health issues are referred to consultants (abx for a gastrostomy infection, treating reflux or UTIs etc)

These late side-effects are the main focus of this charity, for exactly the reasons you have identified: lack of any structured or focused support after the main phase of treatment is finished. It was begun by a neuroendocrinologist at Great Ormond Street Hospital, and they held the first ever conference dedicated to these survivors and their parents last November, with another one planned for later this year.

As you can tell, I have been quite involved in this charity, so PM me if you would like further support and I can put you in touch with a couple of parents who are on the organising committee, but very familiar with all these sort of problems, both physical/health and administrative!