Discussion
The Mrs has been suffering for quite a while now with difficulty in swallowing and feeling full even after a couple of mouthfuls of a meal or drink. Lots of tests have been done, including endoscopy tests etc, and Achalasia has been diagnosed. I am sure you can imagine how difficult this has been for her, exacerbated because she is T1 diabetic.
Today she received confirmation she has been accepted onto the waiting list for POEMs surgery - either endoscopic or laparoscopic. The kick in the teeth was the news she could be waiting at least 12 months or more.
We have no idea whether being diabetic would bump her up the queue, how the decision to do endo or laparo affects timescales and whether worsening condition changes the state of play. Lots of questions to ask but she is proper down today. Waiting for the letter to formulate a response and discussion with GP/Consultant etc.
We do not have private healthcare, but it is an obvious possible and hopefully relatively immediate solution. Questions I have:
How much is likely to cost?
Who do I approach?
How quickly can she get this done?
All Qs I doubt can be answered here - google offers very little from a UK perspective (though I am looking too specifically maybe) .....but anyone who can advise on 'what they did" would be greatly appreciated.
BTW neither of us have ever delved into private health before!
VMTIA
Today she received confirmation she has been accepted onto the waiting list for POEMs surgery - either endoscopic or laparoscopic. The kick in the teeth was the news she could be waiting at least 12 months or more.
We have no idea whether being diabetic would bump her up the queue, how the decision to do endo or laparo affects timescales and whether worsening condition changes the state of play. Lots of questions to ask but she is proper down today. Waiting for the letter to formulate a response and discussion with GP/Consultant etc.
We do not have private healthcare, but it is an obvious possible and hopefully relatively immediate solution. Questions I have:
How much is likely to cost?
Who do I approach?
How quickly can she get this done?
All Qs I doubt can be answered here - google offers very little from a UK perspective (though I am looking too specifically maybe) .....but anyone who can advise on 'what they did" would be greatly appreciated.
BTW neither of us have ever delved into private health before!
VMTIA
Radec said:
I'd Google HCA and Achalasia and give them a call for advice for private treatment.
I understand there's 3 stages of it and costs will depend on what's needed.
Ballpark I'd say around £5-10k with procedures and scans etc.
Thanks for this. Passed to Mrs who has also discovered the consultant she is seeing in hospital is actually under The London Clinic - so again thanks - we have a couple of options now. She is now waiting for the op - everything else pre op is done - hence the confirmation of the waiting list this week.I understand there's 3 stages of it and costs will depend on what's needed.
Ballpark I'd say around £5-10k with procedures and scans etc.
Might be expensive but will likely be cash well spent.
Update time!
Mrs has been in discussions with The London Clinic (her consultant works there too) and has an all inclusive quote of just under £7K. This includes the initial consultancy (which I find odd as it will be the same surgeon as she has been seeing up till now), the op, anaesthetic costs, aftercare and hotel services for an overnight stay.
Consultant appt within the week, op within two weeks after, so probably by beginning August, all done. I am relatively pleasantly surprised at the cost!
She is on the phone now to HCA HC to see if there is much difference.
She has the NHS appointment to discuss waiting times on Tuesday next week, so once we know the schedule we will decide whether we do the private thing. If she is top of the list to be done soon, NHS will be the way to go - though I suppose we remain at risk of cancellations!!
So seemingly positive today.
Mrs has been in discussions with The London Clinic (her consultant works there too) and has an all inclusive quote of just under £7K. This includes the initial consultancy (which I find odd as it will be the same surgeon as she has been seeing up till now), the op, anaesthetic costs, aftercare and hotel services for an overnight stay.
Consultant appt within the week, op within two weeks after, so probably by beginning August, all done. I am relatively pleasantly surprised at the cost!
She is on the phone now to HCA HC to see if there is much difference.
She has the NHS appointment to discuss waiting times on Tuesday next week, so once we know the schedule we will decide whether we do the private thing. If she is top of the list to be done soon, NHS will be the way to go - though I suppose we remain at risk of cancellations!!
So seemingly positive today.
That's good to hear you have a few options available now and I wasn't far off from my initial figure either.
Just to highlight in case you weren't aware that this is something that doesn't have a cure, treatment can help alleviate symptoms for a number of years in most people and its quite successful but there's a risk of longer term care and maintenance needed which can add to the cost.
Its all dependent on the person having the treatment though.
I know they have mentioned aftercare in the package price but does this include possible scenario, it might be an idea just to double check on this if you do decide to go private.
Just to highlight in case you weren't aware that this is something that doesn't have a cure, treatment can help alleviate symptoms for a number of years in most people and its quite successful but there's a risk of longer term care and maintenance needed which can add to the cost.
Its all dependent on the person having the treatment though.
I know they have mentioned aftercare in the package price but does this include possible scenario, it might be an idea just to double check on this if you do decide to go private.
Radec said:
That's good to hear you have a few options available now and I wasn't far off from my initial figure either.
Just to highlight in case you weren't aware that this is something that doesn't have a cure, treatment can help alleviate symptoms for a number of years in most people and its quite successful but there's a risk of longer term care and maintenance needed which can add to the cost.
Its all dependent on the person having the treatment though.
I know they have mentioned aftercare in the package price but does this include possible scenario, it might be an idea just to double check on this if you do decide to go private.
As I was fist pumping at it being less than £10K (don't ask me why I had this figure in mind) I missed the last bits of the conversation - pretty sure he mentioned follow up telephone appointments etc. Will investigate more as she has to decide what she wants to do.Just to highlight in case you weren't aware that this is something that doesn't have a cure, treatment can help alleviate symptoms for a number of years in most people and its quite successful but there's a risk of longer term care and maintenance needed which can add to the cost.
Its all dependent on the person having the treatment though.
I know they have mentioned aftercare in the package price but does this include possible scenario, it might be an idea just to double check on this if you do decide to go private.
Incidentally, HCA came in at just under TLC quote - so happy. Also, HCA seemed a bit more on the ball, followed up with email, were more definite about cost breakdown, how the surgeon is selected etc. Was a good recommend so sincerely thank you.
Are you "in the trade", so to speak?
Kind of, I used to be the reward director for the staff benefits for a company I worked for a few years ago so dealt with the providers we used including PMI quite extensively so I have a bit of knowledge of how it all works.
I'd never heard about this condition until I had a case referred from an employee who was trying to get it covered under the PMI which after numerous conversations I then got a bit of understanding of it.
Ultimately it was denied due to it being a chronic condition and they had to go the self pay way.
I'd never heard about this condition until I had a case referred from an employee who was trying to get it covered under the PMI which after numerous conversations I then got a bit of understanding of it.
Ultimately it was denied due to it being a chronic condition and they had to go the self pay way.
Bit of an update.
Unclear whether it is related (caused by or exacerbated by) to the warmer weather but she has had a bit of a down turn over the last week. Lots of chest pain and simply not eating, struggling to drink. Can’t swallow her medication as that causes intense coughing. Bit of a nightmare situation.
Eventually called 111 who advised either GP or A&E. we chose the latter as simple thinking, same building as the consultant who is dealing with the achalasia.
What a mare A&E is. Although seen almost immediately at 1030 yesterday morning (which was a surprise), put on nutrient drips etc (I don’t quite know what), there was no bed so in a chair. In a chair till 0530 this morning when a bed was available on a ward.
Except the bed was not there so in another chair till just now.
She is remarkably cheerful…… but the right people are talking and decisions to be made to bring forward the POEMs procedure. Going in to see her shortly …….. she may be sent home, she may be kept in!
Anyway, in the right place for now!
Unclear whether it is related (caused by or exacerbated by) to the warmer weather but she has had a bit of a down turn over the last week. Lots of chest pain and simply not eating, struggling to drink. Can’t swallow her medication as that causes intense coughing. Bit of a nightmare situation.
Eventually called 111 who advised either GP or A&E. we chose the latter as simple thinking, same building as the consultant who is dealing with the achalasia.
What a mare A&E is. Although seen almost immediately at 1030 yesterday morning (which was a surprise), put on nutrient drips etc (I don’t quite know what), there was no bed so in a chair. In a chair till 0530 this morning when a bed was available on a ward.
Except the bed was not there so in another chair till just now.
She is remarkably cheerful…… but the right people are talking and decisions to be made to bring forward the POEMs procedure. Going in to see her shortly …….. she may be sent home, she may be kept in!
Anyway, in the right place for now!
I presume that motility studies have been done and are normal?
Diabetes can cause damage to the nerves of the oesophagus which would only show on biopsy or video fluoroscopy / barium swallow.
There are many other conditions that may affect oesophageal motility as well.
If motility is normal, but the lower oesophageal sphincter has increased tone (contraction) then achalasia is probably the diagnosis.
Diabetes can cause damage to the nerves of the oesophagus which would only show on biopsy or video fluoroscopy / barium swallow.
There are many other conditions that may affect oesophageal motility as well.
If motility is normal, but the lower oesophageal sphincter has increased tone (contraction) then achalasia is probably the diagnosis.
Weekend update!
Mrs N still in hospital, having had a shed load of tests and scans and X-rays. Upshot is the experts have consulted and decided to remain on the end August plan for the POEMs procedure. Which is disappointing - not because we have not bumped someone in the queue, but because of the following.....
On Friday night she was fitted with an NG tube to aid her feeding of the essential stuff (remember she is T1 Diabetic). Was traumatic for her having it fitted, but seems to have settled quickly. For those that don't know, a tube in through the left nostril and down past the damaged oesophagus so food can be either pumped in or gravity fed through the tube. The tube is relatively tiny and now not causing too much discomfort. Thankfully since Friday, her blood sugar levels have remained as constant as any time in the last year - so it must work!
She is stabilising basically at the moment and looks like she will come home Tuesday until her operation, which, if it does happen at the end of August, is still quicker than we can get it done via HCA or LHC.
With a half glass full point of view, this is simply awkward, but for me, if it keeps the levels under control, and lessens the constant pain, its rather clever and effective. She is in good spirits too, which is a big help. She has stated she does not want to go anywhere during the summer because she is conscious of the tube. So glad we sacked off holidays this summer!!
Mrs N still in hospital, having had a shed load of tests and scans and X-rays. Upshot is the experts have consulted and decided to remain on the end August plan for the POEMs procedure. Which is disappointing - not because we have not bumped someone in the queue, but because of the following.....
On Friday night she was fitted with an NG tube to aid her feeding of the essential stuff (remember she is T1 Diabetic). Was traumatic for her having it fitted, but seems to have settled quickly. For those that don't know, a tube in through the left nostril and down past the damaged oesophagus so food can be either pumped in or gravity fed through the tube. The tube is relatively tiny and now not causing too much discomfort. Thankfully since Friday, her blood sugar levels have remained as constant as any time in the last year - so it must work!
She is stabilising basically at the moment and looks like she will come home Tuesday until her operation, which, if it does happen at the end of August, is still quicker than we can get it done via HCA or LHC.
With a half glass full point of view, this is simply awkward, but for me, if it keeps the levels under control, and lessens the constant pain, its rather clever and effective. She is in good spirits too, which is a big help. She has stated she does not want to go anywhere during the summer because she is conscious of the tube. So glad we sacked off holidays this summer!!
Quick update - Mrs managed to get home on Wednesday - not Tuesday due to a clerical error in ordering the meds. Because her pain is thoroughly under control, she was quite ok with the delay. Tube feeding is all by syringe, but understandably she is very conscious of the tube hanging out of her nostril!
What was rather frustrating, she had confirmation of going home by the consultant at 11:24 on Wednesday morning - it still took another seven hours for her to be handed the meds and us walk out of the door. Flabbergasted when you consider the queues for beds that are in the hospitall!!
Anyway, we await to be called for the op.
Will update if anything happens; until then, stay safe everyone!
What was rather frustrating, she had confirmation of going home by the consultant at 11:24 on Wednesday morning - it still took another seven hours for her to be handed the meds and us walk out of the door. Flabbergasted when you consider the queues for beds that are in the hospitall!!
Anyway, we await to be called for the op.
Will update if anything happens; until then, stay safe everyone!
Big news! Mrs had the POEMs procedure today, all done by the professor.
Spoke to her just after lunch, she is in some pain, as you would imagine, but the feeding tube is out, her throat feels bruised and it hurts to cough and talk.
Post a general, she is not up for visitors and because of her being a type 1 diabetic, likely to be In For two nights.
Just hoping she is fixed ….. she was mighty depressed having had liquid food since late July. Soft food next week apparently.
Done though, thankfully.
Spoke to her just after lunch, she is in some pain, as you would imagine, but the feeding tube is out, her throat feels bruised and it hurts to cough and talk.
Post a general, she is not up for visitors and because of her being a type 1 diabetic, likely to be In For two nights.
Just hoping she is fixed ….. she was mighty depressed having had liquid food since late July. Soft food next week apparently.
Done though, thankfully.
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