Husband in hospital unit, told to phone 111 for pain management

[TheTruthWillSetUFree]

Sorry, may be posting in the wrong place.
my husband has renal failure and has dialysis in a renal unit three times a week. He had colorectal surgery for an unrelated issue a month ago. Since then, he has been in terrible pain every time he opens his bowels which lasts for 4 to 5 hours afterwards. There is usually blood in the loo. He had no pain relief for 4 days after surgery because the renal consultant would not answer questions from the GP about safe medication for renal patients. He was eventually told by the GP to go to A&E, waited hours and ended up in resus because he had missed his dialysis slot and regular bleeding causes issues with raised potassium. He was then referred as a surgical emergency and told he had a fissure and discharged. He was told that he should have had a referral straight to surgical emergency from his consultant.
This morning he was screaming in pain when he went to the loo. I’ve taken him to dialysis and he’s asked for the on-call nephrologist, to get a referral back to surgical emergency and advice on pain relief. He’s been told to either phone 111 or his GP. He can barely talk, he’s in so much pain, even after oromorph, paracetamol, nefopam and codeine.
We are at our wits end. Nobody seems interested in helping him.
AIBU in expecting a hospital unit to look after a patient?

He had colorectal surgery for an unrelated issue a month ago.

Surely he needs to go back to the consultant/surgeon here?

The surgery was performed by a general surgeon and he saw his registrar in the surgical emergency ward.

The dialysis unit may have to send him round to A&E for assessment. Dialysis units are sometimes classed as outpatient facilities not inpatient units and as such the surgical Doctors would not be commissioned to review patients there.

Surely the unit where he had the operation should have been the ones prescribing pain relief post surgery, not his GP?

This is unbelievable and yet having been ping ponged around the nhs departments myself I fully believe it.
Can PALS help?
Can you make such a fuss that the ward or wherever calls down senior management?
I’d also like to know who is the twat who voted that YABU here.

This is awful. Unfortunately you will have to kick up a fuss otherwise they will just continue to ignore you. Hope you get some help.

If he has been discharged in to gp care he needs to go via them, be it a prescription or urgent referral back to the acute surgical clinic . You could try PALS or contacting the surgeons secretary but that may delay things.

First of all, sending solidarity and a hug, this sounds horrendous for you both.

When a patient has multiple issues and conditions it can seem like a game of pass the hot potato between consultants and departments and often communication is extremely poor. Likewise post op care supposed to be coordinated with GPs can be very hit and miss.

You say you are currently on the dialysis unit. Is there a consultant on the unit? Is the problem the untreated/ unmanaged fissure?

It may be advised to talk to PALs - while they can't intervene on clinical matters, they may be able to help with regards to the poor communication and sign posting to get the right course of action in place.

Given the description you give of your husbands current condition it might be wise to highlight his vulnerability and raise safeguarding concerns.

Sadly it sometimes takes being firm and politely forceful to get thing moving in the right direction.

I wish you all the very best, and no, YANBU.

These are the people who should be dealing with this. What did the discharge letter say? There should be contact details on there for any complications or questions.

PALS were involved when the consultant refused to advise on pain relief. Everyone is hiding behind ‘the system’ and protocols. There are lengthy emails between the unit and PALS which are very detailed, inaccurate and don’t address the issues.

Discharge letter from surgical/SEU said to call or get a referral. They don’t answer their phone. On-call nephrologist can refer but unit refused to call him. Waiting for call from GP now.

If the pain is so severe he can’t go about his daily duties he needs to go to a&e. Surely the surgeons can speak to the on call renal team re safe and effective pain management. Sorry you are going through this

Is the issue with the pain management that they don't want to prescribe due to potential negative impact on the renal issues? Or are they just not explaining/ communicating at all?

Lots of issues with pain relief due to the renal failure and build-up of toxins. GP very careful about prescribing and likes to check with consultant. Consultant doesn’t like questions from GP or general surgeons. Also opiates cause constipation which makes the bowel problems worse.
Staff on dialysis unit now getting worried about the state he’s in.

Fissures are incredibly painful and need to be managed, he may need surgery (my DH did)
It was a few years ago but even now sometimes everything goes into spasm and he will be deep breathing waiting for the pain to pass

That's without all the issues your DH is dealing with.

Hopefully the staff on the dialysis unit will be able to get things moving, fingers crossed for you both x

I've come across these weird hierarchical stand offs between consultants and GPs etc before and it beggars belief, as it's hardly in the best interests of the patient x

It drives me mad that things have to reach acute crisis point before action is taken.

All I can offer is a virtual handhold, and let you know that those of us who've gone through similar with our loved ones completely understand your fears and frustration xxx

@TheTruthWillSetUFree , I’ve just PM’ed you with some info and links.

You have my every sympathy. Joined up treatment in the NHS fell apart post Blair, with no one taking overall responsibility for a patients journey. My late husband actually called 999 from the dialysis ward on a couple of occasions, also after unrelated general surgery, to get any attention at all. You then have to take it up via PALs, who are broadly well meaning but ineffective for serious, systemic issues, as well as making the Trust CEO aware and copied on all correspondence. It’s wrong that you have to fight for proper treatment, but you do. We had to result to multiple SARs and lawyers on several occasions to get to the bottom of instances of negligence, and were on first name terms with the CEO of the Trust as we had so many meetings. And yet, until faced with legal action, absolutely no accountability. The culture of cover up at all levels in the NHS is a national disgrace.

Our local hospital has a system under Martha’s Law called Call for Concern where you can raise concerns for inpatients and have a review.

Many thanks to everyone who took the time to reply. We spent 4 hours in A&E yesterday (thankfully it wasn’t very busy) and then we were sent to SAU. Eventually saw a consultant who said he has a large fissure and she booked him in for an MRI and surgery, and also prescribed stronger pain relief.
The junior staff on the renal unit were very concerned about him yesterday because he was writhing in agony for 5 hours. His dialysis was also compromised by the rectal bleeding and he now has too much fluid. The senior staff just told him to ring his GP and said there was nothing they could do.
He had an email from the CEO’s office today about the PALS contact 2 weeks ago. I think they will be getting an update today!

I'm so glad you have made progress and that hopefully your poor husband can start on a road to at least partial recovery from one issue at least x It beggars belief how the situation was handled and it's definitely worth pursuing I feel, however I'm also aware how frustrating all the bureaucracy can be for little return.

Wishing you both all the very best x

Hopefully your poor DH will get some relief now. So sorry you are having to go through all this. It sounds appalling.

Not an uncommon situation, there's no joined up care, hopefully the surgery goes well and the pain team/ anaesthetist can actually help control his pain, it's a complete mess.

Just to be clear, although your husband was in the dialysis unit, this is not the same as being admitted to hospital as an in patient. It's like going to outpatients clinic and saying that you were "in hospital". Technically true but doesn't really accurately describe the situation.

Dialysis units have medical cover for emergencies only, and there are some satellite dialysis unit where there is no Dr on site. Even in hospitals with renal drs present, they put medical emergency calls out to the on-call medical team for sick patients.

Gosh op I'm so sorry he's in so much pain, that must be terrible for you to watch too. Have they said how quickly they can get him in for the MRI/surgery? I hope it's not too long