Hematology doctors

[maggie222]

Any hematology doctors on here that can have a quick look at some results.

Background: my son had 2 x bone marrow transplants in childhood. Just been transferred to adult services and 2 different consultants have said his hematology results are abnormal and referred back to his BMT doctor who is not getting back.

Son has recently gone downhill will lots of infections, nosebleeds and just sleeping constantly. His mental health has declined massively this past week and GP just asked for him to fill in a form at reception then a telephone consultation.

My gut feeling is screaming at me like it was he was a baby, took 18 months for diagnosis then he was seriously ill.

I would be grateful if somebody could take a quick look.

I agree with the previous poster, the lack of blood tests for follow up is concerning, my personal opinion is given his history, symptoms, blood test results and lack of follow up and baseline I would take him to A&E for an urgent blood test and second opinion of the haematologists there. You’re not being over cautious at all, going on what you’ve said it sounds like he’s not received good care and unfortunately may have been not followed up correctly because he’s recently transitioned from paeds to adults, which sometimes happens.

That sounds like very poor follow up to me (not a Haematologist, but I hang out with them a lot in a related but niche field).

First things first, get your DC seen by an Adult Haematologist, preferably a BMT specialist. I agree with a PP, you'd be reasonable to go to A&E given his history and symptoms, or if you don't want to drag him to Saturday night A&E (not usually the nicest place!), speak to a haem CNS at your nearest major hospital on monday and insist on them seeing him this week.

Once he's sorted, I'd urge you to consider making a complaint about the (lack of) follow up, with particular reference to years without bloods being done, and your emailing his previous team his abnormal results and not getting a response. The least they could have done was come back to you and say 'sorry not us any more, I've forwarded to Dr x in adults who will come back to you asap'.

I'm really sorry you've had such a bad experience, I hope you get your DC seen and feeling better asap.

I will be on the phone Monday and will not take no for answer this time.

I will keep you all updated.

Thank you for all your advice

I'd just take him to A&E on Monday to be honest. The Paed team can't treat him, and the referral via the GP will take too long. I think his mental health is a red herring at he moment and caused by how awful he's feeling physically so he needs to be in a hospital under specialist haem care where they can go through his history. Take everything you have in terms of paperwork and medical history.

Good luck OP.

Good luck. Hope you get answers soon. Be bolshy

If this was my son, I'd got to A&E now. He's not well, his old blood test results are worrying and he's clearly poorlier than in the summer when those blood tests were done. This sounds to me like the time you took him as a baby: you need to do the same again.

Did you get anywhere op

Sorry for the delay.

I have been fighting with the system for the past 2 days. He woke up with an eye infection too this morning on top of everything else he is picking up.

I spoke to his BMT consultants secretary who straight away said he is 18 so nothing to do with us anymore and we cannot see him. I stated that there was concern about his bloods from renal and endocrine consultants so she said get them to refer to adult hematology if they are concerned.
I did struggle to hold it together and said it is not up to them to refer he should have transitioned like all the other clinics. She then said she would speak to his consultant as the records state he was discharged from late effects clinic in 2018 and his consultant discharged him this this time last year as "he looked well enough"

She rang me back when she had spoken to his consultant and said he found nothing alarming with the bloods when he checked them. He said to come to clinic on Friday and he will do full blood screening and if they are concerned will refer him to adult hematology.

I am amazed they would just discharge after 6 years as an inpatient having 2 BMTs and all the complications afterwards as he turned 18, they said they expected renal to keep an eye on him which is a completely different genetic disease he has.

I have also contacted his GP and said he needs to speak to a doctor face to face not just telephone and can he speak to me. They have agreed the doctor will ring me first and then see him face to face tomorrow to discuss the mental health side.

Counselling is not available for upto a year in our area and I can see him just crumbling so I have called around to various counsellors for private sessions and managed to get him in tomorrow afternoon.

Hopefully now I have covered all bases. I don't know whether he will engage back in education. College are giving him some breathing space and emailing work home but he won't talk about it and just sleeps constantly.

Thanks again for your concern, I will of course update when I know anymore.

Wow. I’m devastated for you.

I’ve had more blood tests than him in the past 6 years, just because I tend to have low blood count due to genetics, which has no other symptom than I’m a bit tired.

Hopefully you'll be more informed on Friday

@ActualHornist

I'm just angry as a few years ago when I brought up transitioning from child to adults services, his consultant said he would keep James under him on an informal basis as in his words "adult hematology will just start messing around with him doing unnecessary tests". I trusted that was the case and I would be able to contact the department with any concerns.
Today was a whole different story it was crazy, the secretary just kept repeating that he is 18 and I cannot speak to you or deal with him. She read back on the system and said he has been discharged completely and you will have to get the GP or renal doctor who was concerned to refer to adult hematology at your next appointment in a few months.
I just said, ok I will take him straight to A&E and if anything serious transpires I will hold the department responsible as you cannot just not follow up on a patient who had 2 x BMTs along with lots of complications requiring drugs that were not normally used on children as he was so poorly, they had to get special permission to use them.

It's like they think he will go through life with no complications even though it affected his growth and destroyed his bones, he has osteoporosis, plates in his knees, will need hip replacements in the next few years and fractures in his lower spine - but according to them he looked well enough to discharge.

The blood tests may come back as normal but at least I can be reassured and look at other reasons such as his mental health. The secretary said the consultant didn't find the previous blood results of concern even though 2 other consultants did.

Hopefully I can get him on the mend now, he just keeps asking for a hug. He looks so pale and its scaring me.

I’d go straight to PALS. Immediately.

Seriously.

Light a fire under their arses.

In fact - I’m so spitting mad for you - I’ll frigging ring that secretary and tell her that you’ve employed me as your son’s advocate, that you’re going to PALS, that my next step is to contact Irwin Mitchell tomorrow morning unless someone has your son in clinic tomorrow and starts taking this seriously.

Honestly, I’m absolutely raging for you.

I just think the system is overwhelmed and broken too.

I ring the GP at 8am on the dot and I am number 39 in the queue and that is only to try and fight for a telephone consultation, the receptionist interrogates you to find out how much of an emergency it is.

Then there is no funding for the mental health services, some of the children in the drop in centre looked around 10/11 and it broke my heart and every parent was being told they couldn't help their child as the funding had been pulled a few weeks ago.

The hematology are a busy department and it is probably easier for them to just offload and let somebody else deal with it when they turn 18.

Every part of the services I have dealt with this week is at breaking point IMO.

I tried so many private counsellors and they were all booked up for months and that is paying £50 an hour privately.

Hopefully if you get his issues addressed then he'll feel more settled.

OP I'm so sorry you've had such a battle to get your son seen, I'm genuinely shocked at how you've been fobbed off. To essentially say 'he's 18, not our problem, not interested' is appalling - I've known (busy, sought after, internationally recognised) paed consultants come out of clinic to see previous patients who are now adults if they relapse, just before xmas one came up to an adult ward to visit a 24 year old who'd just had a new cancer diagnosed, who he had treated up to the age of 12. I am shocked your previous team have been so blase as to discharge from follow up without even discussing it with you and your son, that is not standard practice and as I said before, in our Trust post BMT patients are followed up for life, let alone a young person who had 2 transplants at such a young age. However pushed the services are, and they are, we care about our patients and so we provide the care they need however busy we get, to do otherwise is unthinkable.

Well done for fighting for your son, it's hard to keep pushing when 'experts' say they're not concerned but you know something is wrong. You are doing the right thing by him and once he's sorted please make a formal complaint, this should never happen, what if he'd been an 18 year old estranged from parents or something and had no one to fight his corner? All the best to you both.

@nothingcomestonothing

I have doubted whether I am making a fuss over nothing as everyone says my teenager would sleep 20 hours a day if I let him etc but he has just gone to a shadow of who he was.

This time last year he was accepted on a program to study in USA, was excited about his future and a confident young man and I cannot believe the difference. He has stopped college even though his predicted grades are AAA, won't discuss anything. He said something strange today that he hurt if somebody touched him like his skin hurt which I found strange.

I was just shocked as I was under the impression that late effects clinic who prescribed his hormone injections etc would keep following him up as we were told due to 2 transplants and using some of the conditioning drugs like busulfan he would be sterile but they would deal with all that and make the referrals when ready, he is gay and says he just wants dogs so not relevant but this was the things we were told about follow up in his adult life but they have actually discharged him 2 months after his 16th birthday.

The message I was given today is that if his consultant is happy with bloods on Friday that will be it but if anything shows up they will refer him to adult hematology. So we are back to having no follow up and no point of contact. I will need to ask this question on Friday as surely they cannot leave him with no follow up?

I am just really disappointed to be honest, his doctor was really good to my son and dedicated as he had 2 really bad transplants as far as complications with gvhd and infections. He was one of the first patients to receive transplant for his condition and had been turned away by other hospitals in the UK due to prognosis of surviving the regime but he did and I am so proud of him.

His doctor always seemed happy and proud to see how well he is doing, the last time he did see him he was planning his studies and looked well, hence they discharged him.

OP it sounds like you need to rock up at A&E and refuse to go anywhere until you are referred to someone who can help you. I have been in a similar position to your sons history and I know how tough it is.

Stay strong OP, even if the paed consultant is happy with the bloods on Friday insist on a referral to adult haem, if they get shirty about it say you are formally requesting a second opinion and will raise a complaint if denied one. Any consultant should refer for a second opinion when requested, the ones I work with are always happy to do so as they want patients to know and feel that they're getting the best care. Pose it as a given not an option, it's not 'shouldn't we have some ongoing haem follow up?' It's 'what is the name of the adult BMT consultant we're being transferred to?'

You have been told by the paed team that you're not their problem so turn it back on them and say that therefore you must have a referral to adults, even if it's just to meet and put a name to a face and get contact info in case of future issues, that's the least you should have. Honestly I thought our service wasn't doing transition very well but this is beyond my wildest nightmares, to lose a BMT patient to follow up should be impossible unless the patient tries to be lost. All the best.

woukd it be worth going to a private haematologist (not that he should have to) ?

Hope everything starts getting sorted on Friday

really I would consider taking him to A&E early tomorrow morning, regardless of any plan to come to clinic on Friday.
I am not a medic, but I think you and he have been messed about too much.
the nosebleeds, and now bruising, pain when touched, seem enough to me at attend A&E, plus unable to stay awake. talk in bullet points.

actually if I were you I would not mention any mental health problems, as this can become a convenient carpet under which to sweep symptoms, and lead to further delay/ pass the parcel/ do nothing. it should not be so, but it is, too often.
is and ought are parallel lines. we have to live with, and become crafty at dealing with what is, rather than waste energy asserting what ought to be.
take him to A&E, ask to see senior medical consultant if necessary. stand your ground.
don't say too much about poor service previously, just concentrate on worrying presenting symptoms now.
pick out 3 or 4 symptoms, as multiple issues can dilute attention.
once you get into the system properly, then you can lay it all out. you have to get taken seriously enough to get in first.
don't complain about other medics.
can you take someone else with you, to support, underline concerns, and be seen to be making discreet notes. good luck.

Hey @maggie222 any news?

Op just read your thread. I'm so sorry your poor boy is going through this. I think you know something isn't right and have to be his strong advocate. I hope you got some answers this week.

Hi everyone

Just to update that he saw a private counsellor on Wednesday evening who he said was really nice. He is seeing her weekly. I have also done the referral to our local teen counselling as I was advised he could get lucky and get a slot as there is issues he needs to work through from sexuality, years of hospital treatment and ongoing health problems, also his father was not the best role model (long story)
The GP has started him on Anti depressants as his assessment said he was moderately depressed so I have to trust this will help him.

We also visited hematology yesterday and sat down with his consultant. I think it was his secretary trying to block us as he said he is always happy to see us. He has carried out a full screening of his bloods including his BMT graft. His platelets came back whilst we were there better than they were which has calmed me a little, but we need to go back next Friday for the rest of the results. I will then discuss who is our point of contact going forward.
He promised if anything shows up it is fixable and not to worry so I am hopeful we will get him well, whether it is physical and mental. ( I did not mention the mental side of things)

I have had to deal with it from all angles of the mental health and physical health as time is not on our side due to his A Levels. He has a university interview midweek which he is attending so I am happy with that, also he has agreed to engage back with college. He had an issue with a particular teacher who likes to bring him to tears in class and has been almost bullying him. This was the last straw and why he walked out of college a couple of weeks ago. I had to put in a formal complaint as his friends backed up that she had an issue with him. Her argument is he is the top student and she just wants to push him to his potential - this unfortunately pushed him over the edge. College have agreed he does not need to engage with her any longer.

It's been a long week and I am an emotional wreck, falling asleep at 7pm as I am so drained. I have found this week much harder than when he was little going through his transplants - or maybe I have just forgotten what it was like. In the past few years I have had 5 major surgeries myself including kidney transplant so my partner has to keep reminding me to take time out as he is concerned for me.

Anyway, I feel this is much more positive than a week ago, it is just a shame it has been such a fight to get him help.

Thank you again for thinking of us and I will of course keep you updated.

Sounding positive