NHS Rant

[Ace Modder]

So my wife has been suffering for about 18 months with pains in her lower belly area.
Her GP put her on numerous diets, like lactose free, gluten free etc. Nothing seemed to help!

Her pain was getting worse and worse.
Until this March when she ended up in A&E as her doctor couldn't help her any more as he had run out of ideas. She ended up on a ward for 4 weeks, it took them over 3 weeks to work out that the nerves which connect to the muscles that contract and push things along in her bowels/intestines etc had died and the muscles were not doing their job.
The only solution is to have a pace maker fitted in her lower back to do what the nerves should be doing.

Anyway, she was referred to the specialist for this treatment. She has been taken back into hospital 3 or 4 times since March because the pain became unbearable etc for her. (note she is on morphine daily for the pain at home) She has been unable to attend work since March, she has tried to go back a few times, but her employer doesn't want her there because she is not really fit for work.

Anyway - 6 months later and she still has not had the initital appointment to see the specialist - 6 MONTHS!!!!!!!

What a joke the NHS are! The thing is though, she was taken to hospital via an ambulance 2 days ago and spent 36 hrs in hospital, and then sent her home again, unable to really do anything and said she has to wait for the specialist appointment. She has tried to call the consultants secretary, numerous times, and never been able to get any answer about her scheduled appointment.

The cost for ambulances, and a total of around 8 weeks stay in hospital (fragmented stays) since March much be adding to the costs for her care. If they just did the op immediately all these unneccessary costs would be ended. Imagine this situation x 50,000 people - no wonder the NHS doesn't have enough budget, they could save loads if they dealt with people in a much more timely manner.

And her quality of life is poor at the moment too due to the daily pain she is in. She either tries to sleep all day or is that full of pain killers she is like a space cadet for much of the day. Seriously not fair.

 

[Ace Modder]

Sent you trust.

Thanks replied to you.

I think its hood for things that are immediately obvious, but if its not ohh boy.. it can be terrible.

Yup, 100% agreed

Go private if you can. NHS is a sinking ship

I wish we could, the cost for the op etc and all the aftercare she would need from the op works out at around £18k, we don't have that kind of money available to us. Insurance is useless, because for pre-conditions they are not covered

 

[Ace Modder]

Do they? How do we go about making a complaint?

 

[Ace Modder]

It sounded like there had only been one referral and a wait of 6 months, maybe the OP can clarify?

Correct.

 

[Ace Modder]

sell the car ?

The car is financed, and cannot be sold - if i sold the car, I wouldn't have enough to cover the cost due to deprecation anyway.

 

[Ace Modder]

The nhs is being deliberately under funded to create these problems so it can be turned into a privatised operation. There’s plenty of cash around to support it, it just needs to be allocated sensibly. Brexit, HS2 and Trident spring to mind. It’s basic Tory policy, get rid of anything publicly owned so the rich can get richer...

What bothers me is that people are either too stupid to see what’s going on or don’t care.

Sad state of affairs.

I have always thought this too. But what we/I do to stop it? Nothing!

 

[Ace Modder]

@Ace Modder Hiya Pal, I'm truly sorry to hear about your missus and all the trouble she's having its not fair. How are you holding up?

Having been a patient recently I can attest to just how broken the NHS is at the moment. We're in desperate need of a Labour government to roll back this privatisation but something needs to be done now. I saw an article this morning about a lad from West Derby, not to far from me that I knew from when I ran the door at a pub there. I couldn't say he was a mate but over the 2 years I was there he was often the highlight of my night, he was a cheeky **** full of energy you could always have a laugh with. Tom died of meningitis related sepsis roughly a year ago, not sure if it was related but his partner also lost their unborn child and tragically had a double funeral.

The report claimed his death was a result of a catastrophic failure in communication, reported staff shortages and a failure to identify his condition at each and every opportunity. The trust has apologised. This simply isn't good enough!

The doctors, nurses, health care assistants and everything in between are overworked, understaffed and lack organisation. Because of this you are getting staff that are dangerous, by design or by exhaustion, disinterested and unwilling to take responsibility. I hope to god things improve soon, I hope your wife gets the treatment she needs.

That is such a shame.

The plot thickens with the local hospital now also.

So when I worte this post yesterday, a short while after my wife received a call from her GP checking up on her (expecting her to still be in hospital) but A&E sent her home the previous evening. The GP was angry, he asked her to attend his office immediately, so she did.
He then made some calls when she was there, she had a bed available on the SAU ward (surgical assessment unit). I drove her to the hospital after going home to collect some things for her, when we got to the hospital at around 5pm there were 0 beds available, and she was left to sit in a chair till around 9pm when she was finally given a bed on a ward. She has seen a doctor today - who said that she is taking far too much pain relief medication, and he thinks she shouldn't be - she explained that she takes them because of the constant pain and suffering she is having. The doctor seems uninterested in her pain and suggested they need to clean out the current blockage in her bowels and then once done they can just send her home again. They ahve given her some laxitive powder - THE SAME amount that she just takes 3 times a day at home, experience of this will show that it won't remove it for her.

They just do not care about sorting her out properly at all. Short term attempted fixes which result in a vicious cycle over and over again in another few weeks. I have drafted a letter to the CEO of the hospital and I will be sending that later today to log an official complaint.

 

[Ace Modder]

I have and disagree. Read my post regards my own experience. People always think they need seeing straight away and that their case is urgent, when in reality you can wait.

When my wife is suffering that much than she would rather be dead that alive due to the constant chronic pain is not urgent, what is? Especially when she is swigging morphine from the bottle in order to try to counter the pain, surely this is considered a fairly urgent case? We were not expecting a 1-2 week turnaround, but March to September and not even had the initital appointment for the specialist is a too long for any case... no?

 

[Ace Modder]

She has tried all different type of pain meds and all different diets too, nothing really has a positive inpact.

 

[Ace Modder]

Has she tried prokinetic agents to stimulate gut motility like metoclopramide, domperidone, prucalopride, and tried SNRI's to help the pain in the gut?

Anyway, ask about those with your specialist if you haven't tried them.

The specialist she has never met yet...? Will ask her to talk to the general doctor on the ward about them, and also her GP too.

 

[Ace Modder]

Well using my own experience, life or death is urgent.
Snip!

Whilst I agree 100% your sons cases was of the top-upmost importance and I'm glad he got such great care.

But it doesn't excuse that she has not even been seem by her specialist for an initital consultancy in over 6 months for something which is giving her daily chronic unmanageable pain. There is a reasonable time frame, and quite frankly it's been broken for my wife.

 

[Ace Modder]

In this thread I haven't even spoken about the mental state of my wife either, she is so low at the moment that it is affecting everything, she is not coping mentally at all. I wanted to keep the thread just on track for the hospitals inability at manage her direct problem.

Her GP is helping her manage the mental state she is in at the moment, but she isn't in the best of places - quite understandable too. She doesn't get more than 60 mins uninterrupted sleep ever, because the pain wakes her up constantly. She is napping on/off during the day due to lack of proper sleep, but short naps do not do what a proper 7-8 hours sleep does. This is also affecting her mental well being.

But this is just a byproduct of the underlying primary issue, that is her condition.

 

[Ace Modder]

@Ace Modder thanks for the updates and sorry to hear a bit more about the severity of your wife's condition.

I may have missed your response to a number of us who previously, in the thread, suggested paying to see a consultant. I still believe this is the best course of action in parallel to your GP/A&E visits and normal NHS referal and if you explain the severity, they will usually see you within 24 hours esp when paying. Your GP can expedite referal to private and the GPs/Consultants do communicate.

You shouldn't be in this situation but you and your wife are and this will be the most expedient way to get further referrals or treatment. Often the consultant will refer you to himself on the NHS if they do both (esp if you cant afford private long term and explain that) and depending on severity/affordability they will speed this up for you considerably.

Follow up Consultant appointments are only typically £100-£150 though privately.

OK, thanks I think this is seomthing to really consider, but currently as she is still in hospital on a NHS ward cannot do anything yet.

 

[Ace Modder]

Hi all.

Interested news today, I wrote a complaint letter, and then provided it via email to the Chief Executive of the hospital.

But prior to doing that I left a voicemail with the specialists secretary today explaining I wanted to speak to her before I send a complaint - but by 2pm I never got a call back so I sent the complaint letter.

Anyway - at 3:30pm I got a call from the secretary of the specialist who explained the wait time for an initital appointment is 12-15 months, and the referal was only made in May.
I told her that this is crazy time frame, but she explained that he is the last resort specialist for the whole country in this field and he gets referals from the whole of the UK, and there is only one of him. I kind of understand it is not her fault or even his - but the bigger failing of the NHS if they won't recruit another specialist into the UK like him, his workload is crazy.

I asked about other options and I mentioned private, she said that if we paid £160 for a private appointment that could be done in 1-2 weeks and then my wifes case could be referred back to the NHS and the whole wait time could be skipped and proper treatment planning can get underway. So now we are going to go for this, I have set the ball in motion and now I'm waiting for a call from the private health care centre where he conducts his private work. (His schedule is Thursday evenings for this) and is only a few miles from our home.

I just wish the NHS could have explained this months ago to us, as I would have gladly forked out £160 for her to have jumped a 15 month wait.

I wonder what will come of the complaint email I sent though.

 

[Ace Modder]

Let the complaint go through the process. Complaints like that are welcomed by teams as they help build a case for investment.

The NHS won’t be allowed to tout for a private service, hence it not being discussed with you previously.

I really don’t like the whole go private to cut the NHS queue, I totally would do it in your position don’t get me wrong, but it goes against the NHS ethos and I’m surprised it hasn’t been stamped out already tbh.

Be careful of your expectations with the abdominal pacemaker too, I believe the benefits aren’t always amazing and can be short lived. There is a NICE guideline on them which is worth a look.

I intend for the complaint to continue on, not cancelling it at all.

I have never been a believer of having to pay for private when we pay tax into the NHS service. But £160 a small price to pay to try to move things along quickly. We know the pacemaker isn't something which is a 100% fix, but any attempt to fix things is certainly worth a shot.

 

[Ace Modder]

Wow! £160 creates time that the specialist doesn't have - amazing.
Well done on persevering.
Andi

I know, the mentality of it is staggering. The system is broken for sure. I'm just doing what is needed to try to help my wife.

 

[Ace Modder]

Really pleased to hear things are progressing, albeit with you having to pay for the privelidge

Thanks.