Grade 4 rectal prolapse.

i am sorry but I do not understand why a colostomy cannot be done in Scotland. I am aware soop does not have bowel cancer but that operation is bread and butter to patients who do.

As you said, you were going to give up being Mr. and Mrs. nice guy and girl. Please start soon!

kittylester

From what I understand (and I could very easily be!) the op soop needs isn't doable now but there is an op she can have on the NHS eventually or immediately for £25,000 if she pays privately.

Hopefully soop will put me right!

If I understand correctly, I think soop has been under investigation for 10 years and this has got worse until unbearable so surely this should now be classed as URGENT?

If the operation can be done now, follow annsixty’s advice. If it’s a new operation you need, go to your GP and don’t take no for an answer. You shouldn’t be in this awful position, ten years is a ridiculously long time to wait. You will need to make a big fuss, no nice, but the only way. Good luck dear soop.

Calistemon the word urgent is a moving feast. It used to be classed as "we will operate as soon as there is a bed available" or if you were in the hospital you may be taken to the theatre at 2 am. Now it means you will get treated immediately if you are lying in the middle of the road with multiple fractures after an accident.

I know - "urgent" could mean many things.

LauraNorderr, you mentioned the possibility of a lifetime mortgage to pay for soop’s operation. Obviously soop and her husband would need independent financial advice before entering into one, but I would just mention two things. First, interest rates are rising and rates for these products tend to be higher than for ordinary mortgages. £100 per month can quickly become £200++. Second, if either soop or her husband were to die or go into care the income of the other may be insufficient to meet interest payments. This is not the case with straight equity release where there are no repayments, but of course the remaining equity in the house is then very significantly eroded by the time it is sold when both parties have died or gone into care. I expect this is why she was investigating the possibility of crowdfunding.

charleygirl, sadly the operation soop needs is anything but a routine colostomy.

soop - what an intolerable situation you find yourself in. Time to take charge of this - no more Mrs Nice Guy! As Ann suggested there is the emergency/ambulance route, but I am unclear as to whether the surgery you require is available on NHS?? At the very least you would hopefully be given a colostomy to relieve your symptoms.

The private route would be the quicker route and there are ways to fund this. Most private healthcare providers (BMI/Spire etc) offer the option of borrowing to cover cost of treatment. Could you perhaps look at this in 3 stages? Organise borrowing so you can get surgery asap, perhaps ask your family if they could make the first couple of repayments which would then give you time to arrange a crowdfunder instead of waiting until you’ve raised the money. There is also the option of equity release/lifetime mortgage where you make no repayments. Interest is added to the capital borrowed and repaid on sale of property. Of course this could substantially reduce your heritable estate, but I’m sure your children would rather see you free of pain and distress.

I do hope you manage to arrive at way forward very, very soon.

With all due respect germanshepherdsmum the current interest rate on a lifetime mortgage is tied in to the end of the agreement. In our case 2.1% but currently 2.9%.
Of course legal and financial advice must be sought.
I have pm’d Soop with more detail and will answer questions she has, if any, by pm.
I would never advise equity release where interest rolls up year on year.

Thank you for your very kind and helpful comments and suggestions. I value your input.

The surgery is available on the NHS. The waiting list is endless, thanks to Covid preventing patients with life threatening conditions having to wait for many months longer for access to consultations and surgery.

Ross Hall is a private hospital. We paid initially for a consultation to help us to understand how bad/or not the prolapse was. We then paid a further sum for an investigation under anaesthetic. The cost of having surgery would be £25,000. We have already released equity from our home for previous health matters. In order to raise such a sum we would need 'Crowd Funding' which we are investigating.

My husband is in essence, my carer. I am very happy with the simple life we enjoy together. There are risks involved with any surgery. I could return home with a lessened quality of life. Who knows!

We are not ruling out any options. In fact, we spend a good many hours discussing the pros and cons. Three weeks to wait before I have a telephone conversation with the surgeon [in whom I have every confidence.]

How do I cope in the meantime? That's the question.

And yes, twenty years ago I underwent anterior/posterior ventral suspension surgery at a private hospital in Cornwall. It cost £5000. As a result of the surgery, I had to stay in hospital for ten days because my bowel would not perform. Over the years, the condition worsened. The private hospital have no record of the surgery performed. Previous consultations with NHS have asked what the surgery was. No details were available.

So, here we are.

Thank you and I am most grateful to you for taking the time to respond. It helps to talk.

soop thanks for the explanation.

I hope you don't mind my asking but have you had a benefits check done?

In England, AgeUk would be the people to ask for help In England, I think you would qualify for Attendance Allowance at least.

And, not for soop, but I agree with Laura about Lifetime Mortgages.

I don’t have any financial skills to offer, sadly. On the issue of other people being in worse situations, though, my thoughts are that ten years is a pretty appalling time to be waiting for a solution of some sorts.

The other thought is that there are of course many people in dire need, but this is the system our governments have given us and we all have to make it work to our advantage. I doubt very much that one patient not seeking treatment A will result in another patient receiving treatment B.

More likely, it will result in the powers-that-be saying that there’s no demand for Treatment A and that funding can be cut, which make the overall problem worse. This situation has occurred in my wider family, and I can assure you, no one wins.

Thank you for your explanation. I hope someone with knowledge or experience of crowdfunding can come on and help you.
Maybe you could start a new thread on IT headed ‘how does crowdfunding work’. This might attract an answer.
The same thread on mumsnet should probably be an even better source as the younger ones are generally more up to date on all things social media.
Worth a try. Good luck

LauraNorderr I am with you 100% re equity release. It would appear crowdfunding is one way forward if any of us understood how it worked!

I expect this is why she was investigating the possibility of crowdfunding.

I don't think soop herself suggested this but another kind Kitchener thought of it.

Soop
I have nothing to add only that I’m bloody furious at the un-fairness of it all.?

For those who want to know how to crowdfund.

www.crowdfunder.co.uk/how-crowdfunding-works?utm_source=google&utm_medium=cpc&utm_campaign=ex_crowdfunding&utm_term=ph_how_to_start_crowdfunding&gclid=Cj0KCQiA-eeMBhCpARIsAAZfxZBFuakEGtSUqyLwz1kaYncmYrVmOyUgaoT6aZg8nz-uP_yUjdUyTjUaAgUuEALw_wcB

The only experience I have of crowdfunding was a coastal trek I did some years ago to raise money for a disability charity. The Go Fund Me website is one of the main providers. Their website explains how it works.
tinyurl.com/nuzxv9a8

We are researching 'Just Giving'. My husband does receive a modest attendance allowance. Thank you for mentioning the point.

The laxatives that I'm having to take because I am seriously constipated result in frequent dashes to the bathroom. The daily walks that we have enjoyed for years, cannot now be enjoyed.

I assure you that I am not a 'drama queen'. Far from it. However, this condition is taking its toll both physically and mentally. I cannot ask to be admitted to hospital as an emergency because, at the moment, it is no such thing. BUT, if that should be the case, I won't hesitate to get myself seen in A&E.

Please continue to share any thoughts or information with me. I am extremely grateful to be able for your kind responses.

Pitching-up at A&E, even in an ambulance, will not get Soop a colostomy!

There is no guarantee that the ambulance will take her to a centre of excellence that can perform this type of surgery, and unfortunately now matter how dire her situation is, it would not necessarily be deemed an emergency.

Ten years is a long time to suffer - what a terrible situation to be in. If you can cobble-together the funds from family and friends/equity release then I would do that - grossly unfair I know.

I think calling an ambulance is a very good idea!

I say that because there is nothing to lose - and a possibility of having something done.

It seems to me that some people go to A & E for the slightest thing, and others hang on in excruciating pain, waiting for their 'turn' for treatment.

Dd3 was in excruciating pain from gall stones bit was told there was a huge wait. Being a big brave girl she was prepared to wait but one night when the pain was awful, her partner called an ambulance and she queue jumped. Not on purpose but because she was In dire straits and looking after 3 children!

I don't think your daughter queue-jumped kitty - it was obviously judged an emergency and she was operated on.

She could have quite easily have had a 4 hour wait in A&E and sent home with pain killers.

I have thought about this and am going to play Devil's Advocate here.
What concerns me is that after having to take at least a two hour journey in an ambulance, depending on where it is decided to take Soop, she is then sent back home from A&E, with having any surgery. Added to that, there is no visiting allowed here in acute wards, due to Covid.

I am so sorry to read of your difficulties Soop. You mention that your husband has attendance allowance. I wonder if you have also considered Carers Allowance as your DH is your carer? I don't know how much it is but some extra allowance could go into the pot. It may may be possible to do a mixture of crowd funding and using this extra allowance to pay some of the hospital costs on their credit schemes. Not fair I know. In the meantime get yourself on the waiting list and see if you can bring pressure to hear on the NHS to sort you sooner. 10 years of severe pain is unconsciable. I would recommend also presenting your MP with clear evidence from your medical records and see if he/she and your own GP can get you treated urgently. All of this must play havoc with your mental health as well as the physical issues and I would also strongly emphasise this. ?

Calistemon It was another kitchener that suggested crowdfunding and recommended a good website (gofundme). Others thought it a good idea. I then left a link for this site on the kitchen hoping someone would look into it for soop and MrS.

Who ever sets up a fund needs to know soop well enough to be able to give as much information as possible.

A combination of LauraNorderr's suggestion and crowdfunding would really set soop up financially. The private surgeon she saw sounded excellent. Soop said he was the best.

www.gofundme.com/en-gb?utm_source=google&utm_medium=cpc&utm_campaign=UK_GoFundMe_EN_Exact_Desktop&utm_content=gofundme%20uk&utm_term=gofundme%20uk_e_c_&gclid=Cj0KCQiA-eeMBhCpARIsAAZfxZDeNq3IPTfYD2sDAiaQ3CncCz1v0SRpz-ppgom6jb71VBz_9bF1kpoaAnF6EALw_wcB