Grade 4 rectal prolapse.

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.

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!

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

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.

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.

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.

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.

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.

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.

I know - "urgent" could mean many things.

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.

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.

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?

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!

annsixty

I think I will offer my advice in case I was misunderstood.
I think soop should call an ambulance citing unbearable pain as she is almost totally unable to empty her bowel.
Once in hospital hopefully the seriousness of her condition will be seen for what is is and she will get her operation there and then.

That sounds like a plan, annsixty

Surely someone is capable of performing this operation on the NHS, when we think of some operations that may be less urgent or necessary being carried out.

If they cannot do this at your nearest hospital, they need to refer you to somewhere where they can.
2nd opinions somewhere completely new might be more productive.

I think a posse of Gransnetters needs to accompany you, soop, who absolutely will not take 'no' or 'not possible' for an answer.

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!

I don’t know the details and if it’s true that the operation you need is not done on the NHS then there are two options.
Call the ambulance, scream in pain and hope for an operation that will at least make you more comfortable.
Or
Raise the necessary finance. A lifetime mortgage with a company such as Legal and General can be raised against your home. Let’s say £30,000 to allow an extra £5000 for incidentals. You can opt to pay the interest only for the rest of your days, currently 2.9% so less than £100 per month.
The capital would be paid back without further interest or penalty if you sell up, go in to care or on death, this latter comes to us all eventually but be reassured that you or your children would only owe £30k when you eventually need to sell.
The extra £5000 amounts to just over 4 years repayments if your finances were stretched.
Please don’t be offended as I have no idea of your personal circumstances.
I hope this doesn’t sound harsh but please explore all your options, it’s only money and you can’t take it with you.
I’m sure your children would want you to take every possible measure to have a happier, healthier and painless life.
Sincere good wishes to you.

I think I read on Soop’s Kitchen that the NHS don’t do the exact operation she needs and that it is only done by one private surgeon in Scotland where she lives.

You should not be having to wait with this dreadful condition. I think you should do whatever it takes to get this operated on pdq. It is possible to be too stoical!

I think you can see from this that none of us would blame you for circumnavigating the system!

I suggest the same - call 999 - good luck x

I used to work as a Carer, so helped many people with their personal care. I used to go to a lady who had a grade 4 rectal prolapse - it was the worst thing I'd ever seen (and I'd seen many things). She was in her 80s, in awful discomfort, and the NHS wouldn't operate because of various other conditions she had.

Soop £25,000 is a huge amount of money. Could you afford it? But why should you have to pay? I'm sorry, I don't know what to advise you, but I wish you the best of luck x

I’d like to get behind Annsixty’s good advice.
Please stop being brave, let them see your pain, your tears, your agony. Call 999 scream and thrash about, it won’t be an act, it’ll be you telling it like it is. What have you got to lose.

I agree with calling an ambulance, it is AWFUL you are not being treated. It really is not appropriate that you have been waiting 10 bloody years to have it sorted out properly

Oh I am so sorry to hear this, having nursed patients with this I so empathise with you, and really cannot understand why you cannot be helped. I agree with other posters about seeing your GP, stamp your feet if needs be, nicely of course!! this is an awful situation for you to be in, and as well as a physical problem it must be causing you mental anguish. I really hope you can get surgery soon.