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The pain and stress of waiting for a neurosurgeon

Posted By authenticqn94

"The pain and stress of waiting for a neurosurgeon"

About: Sir Charles Gairdner Hospital / Neurosurgical Unit

(as a service user),

My spouse has been suffering day and night with severe back pain since it started late last year. After seeing a doctor and having an ultrasound, ct scan and xray, the doctor sent a referral to Sir Charles Gairdner Hospital as they said there is nothing else they could do and my spouse needed to see a neurologist.

My spouse received a 'No Reply' text saying they had accepted referral and would contact us with appointment. Same text sent again a few days later. My spouse suddenly felt hopeful that soon there would be some help. But No. Their pain got worse and they had a fall as their leg gave way, lucky I was able to stop them hitting the ground. I was desperate to find them help and was lucky enough to find our GP who has been the only health care professional that has tried to help. They were shocked that it was taking so long for an appointment once they saw my spouse’s condition, I was concerned SCGH had lost our details, our GP resent the referral about a month later, still nothing. Our GP called and was told that unless my spouse develops Cauda Equina Syndrome, they saw no urgency. My spouse is type 2 diabetic, I believe that any problems with their bladder or bowel could risk their life. I was so shocked and so angry.

A couple of months later, our doctor sent another referral. 'No Reply' text received from SCGH. Still no appointment. My spouse is now on opioids which don’t help much, I see and hear them in pain 24 hours a day and have held them as they say, what is the point of getting up each day, I cant do anything, I feel nobody cares or wants to help. Hearing this breaks my heart. I am so sad, frustrated and angry that I cannot find a way to help them.

At the time of writing this, still no appointment. It has been around 5 months now waiting. Pain is getting harder for my spouse to deal with, they dry wretch trying to walk some days, now suffering insomnia and in the past couple of weeks they were feeling sick and not eating much. I am so worried. I am pleading for someone to help please.

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Responses

Response from Janet Zagari, Executive Director, Sir Charles Gairdner Osborne Park Health Care Group 2 years ago
Janet Zagari
Executive Director,
Sir Charles Gairdner Osborne Park Health Care Group

Submitted on 19/04/2022 at 9:39 AM
Published on Care Opinion at 9:39 AM

picture of Janet Zagari

Dear authenticqn94,

Thank you for raising your concerns about your spouse’s referral to SCGH. I understand how distressing it must be to see your spouse suffering and I am truly sorry that you have not yet received an appointment.

Without your spouse’s details, I am unable to investigate why your referral has not progressed. I can advise you that, once the department receives the referral, the usual process is for the information to be reviewed by a senior member of the team and triaged. The triage category determines how urgent the referral is and how quickly you will receive an appointment. Once this has occurred, the patient receives a letter or SMS advising them that the referral has been received and accepted and the appointment letter is usually sent 42 days prior to the appointment.

Given the symptoms your spouse is experiencing, I would strongly encourage you or your spouse to contact our Consumer Liaison Service on (08) 6457 2867 or via CLS@health.wa.gov.au so we can investigate this further and ensure that your spouse has been correctly triaged and receives their appointment. If your spouse’s symptoms have worsened since the GP last assessed them, I would also recommend they make another appointment so the referral can be updated.

Thank you for sharing your story, I hope that we hear from you directly.

Kind regards,

Janet Zagari

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by authenticqn94 (a service user)

Thank you Janet

I have sent through all our details via the email address you have supplied.

Including all three dates of texts sent from SCGH saying our referral had been received and accepted since the first one late last year.

Obviously appointment letter has not been sent and no communication at all. This is why I reached out, I feel I have no other options.

Of course my spouse's symptoms have gotten worse, it's not a flu. Our doctor has done their very best to help with pain management, but has held off upping my spouse's dose, because they said it could affect pain relief after surgery.

Please help my spouse to get their normal life back.

Update posted by authenticqn94 (a service user)

This is a follow up to my previous post and the hell which is the only way I can describe how I feel about our health system and how I feel it treats people.

First SCGH after 12 months waiting we received an appointment letter to see neurosurgeon. We were both so happy finally something was happening. My spouse who is now on crutches and struggles to walk more than 5 metres slowly pushes themselves to the appointment. After coming out of room they tell me it was a physiotherapist, not a neurosurgeon, who made them move and twist and was now in even more pain. I slowly got my spouse back to the car stopping occasionally because they were dry retching and finding it hard to breath.

The next 3 days was a new level of pain for my spouse, unable to get out of bed, telling me they can’t take no more and nobody cares. I hold them and selfishly ask them to hold on. 2 weeks later another appointment, this time it was the neurosurgeon or so we thought. Instead of the surgeon, we were seen by their offsider in training who after looking at the scans, which by this time are 14 months old, and asking my spouse if they leaned when they pushed a shopping trolley, in which I reply that my spouse can hardly make it from one end of the house never mind going to a shopping centre. But as usual, it seems nobody listens and nobody asked my spouse how they were feeling. Doctor says they need to consult with surgeon so steps out. I then hear them talking to the actual surgeon outside the door. Couldn’t believe it. How hard was it for the surgeon to pop in and speak to my spouse who had waited so long to see them. Anyway, offsider comes in and says my spouse needs back surgery, asks them to sign form and says it’s not life or death so mid to late next year for operation. My spouse had injured their spine over a year before.

As I am writing this, about 7 months after that appointment, we have heard nothing else from SCGH. Since that appointment, my spouse’s body has been in so much stress. My spouse has had a heart attack and has serious kidney damage due to the amount and length of time on pain killers. I have watched my spouse wither away in both body and mind, I went many sleepless nights afraid of what my spouse might do.

So angry and afraid I started googling neurosurgeons and sent emails to them all asking for someone to please help my spouse. One answered and agreed to see us. We went and got all new MRI scans ready for appointment. They were amazing as they looked at the scans they asked my spouse how they were feeling, where was the pain and how it was affecting their life. The only health professional to do this. The neurosurgeon couldn’t believe we had been waiting so long, all 3 discs in my spouse’s spine had now disintegrated completely as well as scaffolding. It was all bone on bone. The neurosurgeon turned and I recall said, you have suffered enough and booked my spouse in for operation. Tears of joy ran down both of our faces. My spouse had their operation a few weeks ago, 3 rods and 6 screws were put in their spine. Now we have hope again and after a long recovery we will have our lives back once again. To anyone reading my story and living the same hell, based on my experience, please don’t give up, get angry and fight back and you too may find someone to help you.

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