Calling anyone with a knowledge of the medical system - what can i do?!

[Kerri28]

please please can anyone help me, i have no knowledge of the medical system and dont know how to proceed next, but my dad clearly needs medical attention.

My dad is a healthy 64 year old who has recently had a lung removed through lung cancer and is now having chemotherapy as a preventative emasure. The chemo has (as yet) given him no side effects and he feels fine.

however since having his lung removed he has had a problem swallowing food, he gets a pain in his chest and it feels like his food is "blocked" and he has to walk around to help make it go down, and he coughs a lot. sometimes it is up to 20 minutes before he can eat the next mouthful!! yesterday this problem got a lot worse with him unable to swallow anything and vomiting when he tried. he could sip water.

he phoned the doctor who was relatively disnterested because my dad was due in hospital today for a CAT scan and the doctor passed the buck to the hospital and said they'd look into it. so dad ate nothing yesterday except his breakfast. he went into hospital today at midday having eaten nothing and had his CAT scan. after much waiting and demanding he eventually saw a registrar who examined his CAT scan and said there was nothing blocking his oesophagus and he would need a barium meal to discover the problem. She told him this is not available at weekends and as he is due in hospital on monday for chemotherapy to ask someone then. She also said that A&E would give the same advice.

so dad went home. he is now liquidising all meals and adding water so he can slowly eat them, but each "meal" takes about an hour to eat and causes him discomfort. I am appalled that no-one is worried about this and is continually passing the buck.

dad doesnt want to go to A&E because he feels tired (due to lack of food most likely) and thinks he's just wasting his life sat in hospitals and no-one will help.

I phoned A&E to explain the position and to ask whether, if he needed an endoscpy, or a barium meal, one would be available to him, but they said they couldnt answer this as it was "speculation"!!!

what more can i do? if dad waits til monday he will be even weaker and more tired and less likely to fight for medical attention than he is at the moment.

does anyone have any suggestions as to who i can speak to to get him seen properly?

TIA

for your dad kerri

i have nothing helpful to add ...sorry

bumping this for you

hope someone comes along soon x

bump again

Do you have Macmillan nurses in Ireland? If so, hook up with one if you can, they are wonderful at reducing symptoms.

Sorry if this is tactless, but does your df have a terminal diagnosis? If so the local hospice might be able to get him 'sorted'

Can you go to the hospital with him and be his spokesperson? Us Brits are so/too polite, it is often easier to be pushier on someone elses behalf rather then your own - iyswim.

this sounds very frustratig for you, i would be upset if it were my dad too.
There are many side effects to chemo, this may be one of them.
What other medication is he on?
ok so A&E were not helpful BUT they are right, it would be speculation, no one will give you a concrete answer without examining your dad.
Services are limited at weekend unfortunate but true. There are services available tho.
take some reassurance from the CT scan, if there were a blockage, causing such extreme symptoms it would be visible on the scan.
Dont really know what to suggest.
maybe some one else will be along to advise you.

kerry, terrivbly sorry, misread your name, and thought you were a kerry in Ireland!

If you are in the UK, get him to see a macmillan nurse, they are wonderous

I don't know what to suggest re the hospital (though I'm wondering if your dad has reflux, which can make swallowing difficult) but to keep your daad going over the weekend maybe you can get him some Complan which comes in various flavours. Or if there's a chemist open near you, get some Fortisip drinks. They should help keep his strength up.

Oh that's really distressing for you and your dad Kerri. It's an awful feeling when you feel "on your own" on Sundays and there is no medical attention to hand. I can really sympathise. There just seems to be such a lack of coordinated care in the NHS and that feeling of being passd from dept to dept is not very nice at all ...

I went through something very similar with my father - so I know how distressing that feeling of having a blocked throat will be for him - but my father had a different sort of cancer so bumping for you and wishing you and your family well and hope you get some decent answers on Monday.

Btw, I'm no expert but suggest just keeping up your father's fluids until Mon (which you are probably already doing anyway). My father used to take sips of high-protein drinks every 15 minutes - we used a timer - and it's surprising how much you can ingest that way.

If you feel he may be in need of emergency care, do you think you could call out an emergency doctor who perhaps could give you something to relieve the pain your dad is experiencing temporarily and at least give you some advice and reassurance until Monday?

bumping for you & good luck

How miserable for your poor dad. Will you go with him on Monday ?

If not, I think you should. Have worked in the NHS (management) and unfortunately you do have to push push push.

I know that does not help in the short term. NHS direct would prob send you to A&E and if your dad does not want to do that there is very little you can do. I initially thought go to A&E but if you can keep his fluids up inbetween now and Monday, then prob best not to cause him anymore distress.

Out of hours Doctors do not get a good press (ie Thames doc)and tbh do not think I would call one.

Would it be a GP from your local practice to come out ? Maybe call them. What is your local hospital ?

Freeze some OJ or another juice into lollies if he gets fed up with milk based drinks.

Good luck and thinking of you.

thanks guys, dad doesnt have a terminal illness which i guess is why no-one is that worried about him, we do have macmillan nurses and they are great, he always ask's their help but they are also closed at weekends! (everything closes in devon it seems!)

have spoken to nhs direct and they say that as he can ingest fluids he will not be given any kind of scan as an emergency, and it is likely he'll be told to wait until monday.

he is on anti-reflux meds as of today which arent working and nhs suggest, as do you guys that out of hours ctors might be able to get him something stronger...

thanks for all your replies, you've all been really helpful!!

cross posted 39andcounting. We're in plymouth, derriford hospital. our doctors surgery was the person who told dad originally to wait until today for treatment, so he has not much faith in them but he says he will phone out of hours doctors, although right now he is trying milky runny mashed potato because he can keep down slim fast drinks (!) which he got from our local shop. Will go with him on monday me thinks.

You need to get some 'Build up' drinks prescribed for him.

Some of them are fairly vile, but some are reasonable, and they contain a meals worth of nutrition in a small tetrapac. Fortisip is one brand.

If he is vomiting because he is feeling sick, rather than because something is stuck in his throat, you should talk to the macmillan nurse about getting some better anti-emetics, there are lots of different ones on the market, some even exist as 'melts' that don't have to be swallowed

Kerri28,you have my sympathy.We've just spent 5 weeks fighting for the correct treatment of a vulnerable person.

On another note,my cousin had part of his lung removed due to lung cancer a few months back.He had real trouble swallowing afterwards & was sent for an endoscopy.It turned out that something {poss his diaphragm}had been caught by the stitches during the op & he is waiting to go back & have it corrected.His was by no means as severe as your dad's though.

Please don't feel bad about kicking up a fuss to help your dad.There is a lot of buck pasing,lack of communication going on in the NHS & it seems that only those who shout the loudest get helped.

Wishing you & your dad all the best.
fg

Hi Kerri,

Im not a cardiothoracic surgeon, but I wonder if actually rather than a blockage, it is possible that there has been some damage to the nerves that make the oesophagus contract in a coordinated manner. This would be more likely if indeed he has had an entire lung removed, rather than just a lobe.

This would not show on his CT scan, you do need a barium swallow.

Barium swallows I'm afraid are not considered to be urgent investigations, although he should be able to get one early next week.

In the meantime, he does need to stay hydrated, the 15 min suggestion is spot on, he just needs to get very small amounts down. Don't panic about buying build ups or whatever, make a smoothy - full fat milk, banana, some frozen summer fruits, sweeten with honey. Hot chocolate with cream.

What you do need to do is to get one of the medical staff to "own" this problem, and it may be that the oncology team who provide his chemo are actually the people that will take this on and get it sorted.

It would be worthwhile going in with him to make sure that a proper plan gets put in place.

In the meantime, keep an eye out for signs of dehydration - he needs to be weeing regularly, his skin should have a bit of bounce, his eyes will look a bit sunken if he is dry. Other symptoms that would prompt me to make him go into hospital would be feeling lightheaded on going from lying to sitting/standing, if you can check a pulse it should be less than 100 beats a minute.

Hope this helps a bit, you are clearly very worried.

Pinkveto, wot wonderful advice and so reassuring. Dont thin I'll contact NHS direct next time, I'll just find you on MN.

I'm sure Kerry has got alot from your post..

thank you SO much pinkveto, i certainly have got a lot from your post. i have just spoken to him again and he is eating soft puree's like mash and gravy and drinking now, still with problems, and still not "proper" food but he feels much better. he is a very kind gentle man who doesnt speak through his emotions much and is a bit of an "internal worrier" which i think makes him more despondent than angry when things go wrong. I will go with him on monday. have just passed your advice on to mum who is looking after him very well, but doesnt like to push her opinions onto him cos he goes even more introverted. Amazingly he listens to me, probably cos he doesnt have a choice

I second Pinkveto's advice, but after your last post, globus may be adding to the problem.

The proper name for it is globus hystericus, which makes it sound worse than it actually is. Its best described as that feeling of a lump in your throat when you are anxious, but it can cause problems swallowing. As a result of being anxious you can't get things down, and it then makes you more likely to have problems swallowing next time because you are now worried about things not going down.

I hope you have understood what I have explained, that it can be a physical manifestation of psychological stress. If he tends to internalise things anyway, this could be adding to an actual physical problem.

The way out of the cycle is to try to reduce anxiety about eating i.e. choose the right consistency of things so that they are easy to swallow, choose the right time for him to eat - either on his own or with others depending on when he feels most relaxed, to take his time over eating and to choose things that he enjoys eating rather than things that are 'good' for him.

Smoothies are great, but don't forget about soups, jelly, mousses, yoghurt, even sucking on boiled sweets will keep his sugar levels up and encourage production of saliva which is vital for mixing with food to help it slide down. Once he's eating better you could try him on lentil wedges (recipe on the weaning page) as they mush down easily when you chew them to get him back to solid food. Things like bread tend to go claggy and are best avoided for a bit longer.

Hope you get him back to his meat and 2 veg soon.

SAdly Kerri the only way to get heard in the NHS these days is to jump up & down. The wonderful staff are so bogged down in paperwork & over-booked case loads they often don't want to add any more to the burden so fob you off if it appears non-urgent.

The advice of the other posters is great but I think you need to sit in with Dad at the GP's /hospital & firmly but politely get the point over as I'm sure you will!!

I'm sorry to insult your hospital but it has a reputation for being brilliant in parts & terrible in others (management/admin wise) so get that foot down!!

Good Luck!