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Long wait for epilepsy clinic

Posted By leatherbs64

"Long wait for epilepsy clinic"

About: Fiona Stanley Hospital / Neurology Department, Neurophysiology Outpatients & Ward 6B Rockingham General Hospital / Emergency Department

(as a relative),

My relative who has been suffering drug resistant epilepsy for nearly three years now is on the wait list for nearly a year now for the epilepsy clinic at Fiona Stanley  hospital.

They had a seizure last month and taken by ambulance to Rockingham hospital by paramedics. Massive ambulance ramping that night. They stayed with my relative for hours til they got a bed. Then after nearly six hours and no doctor seeing them was going to be put in wheelchair back in the wait room. They now have three drugs trying to control and they have a special needs child and premmie toddler trying to cope. The hospital was insanely busy that night. They left as couldn't face waiting in waiting room which would have been more hours so went home and slept.

I fear for my relative's safety as they have night seizures and this wait for the epilepsy clinic is worrying. Their partner cant leave them some days . Their partner is self employed. So they are really struggling.

My relative is category two I believe on their referral. Its hard to contact hospital neuro so we enlisted a private neuro who does phone consults in between six monthly appointments at Rockingham hospital. I believe my relative's GP can never get hold of anyone at hospital . 

I am seeing my relative's condition worsen on a weekly basis and their whole personality has changed. They are quite down lately. Just wondering how long this wait will go on as their condition is showing no sign of improvement even with three drugs now! They are having daily symptoms and seem to be getting worse. I am actually fearing for their life at this point.  I would have thought a category two referral would have a fairly high priority?

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Responses

Response from Neil Doverty, Executive Director Fiona Stanley and Fremantle Hospitals Group, South Metropolitan Health Service 9 months ago
Neil Doverty
Executive Director Fiona Stanley and Fremantle Hospitals Group,
South Metropolitan Health Service

Submitted on 16/07/2024 at 11:54 AM
Published on Care Opinion Australia at 12:49 PM

picture of Neil Doverty

Dear leatherbs64,

I am sorry for the delay in access to specialist Neurology Services at FSH. Unfortunately in the public system we are experiencing very high demand for Neurology services and as a result wait times are extended well beyond current triage category expectations (for category 2 this is 90 days). At FSH we regularly audit our waitlist aiming to reduce wait times where possible.

As it sounds like your relative’s condition may have changed since referral, I would encourage them to attend their GP who can send escalation notes to the service which will allow the specialist clinicians to review current clinical information and may lead to a change in the triage category of the referral.

As your relative has experienced a wait time longer than expected, they can also call the Neurology department directly on (08) 6152 0618 to ask for a rough estimate of when they may be seen.

I hope we are able to see your relative soon and apologise for the wait they are experiencing.

Kind Regards,

Neil Doverty

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from Kath Smith, Executive Director, Rockingham Peel Group, South Metropolitan Health Service 9 months ago
Kath Smith
Executive Director, Rockingham Peel Group,
South Metropolitan Health Service

Submitted on 16/07/2024 at 1:06 PM
Published on Care Opinion Australia at 4:38 PM

picture of Kath Smith

Dear leatherbs64,

Thank you for taking the time to share your relatives recent experience at the Rockingham General hospital (RGH) Emergency Department (ED), I am very sorry to hear that they waited such a long time after having a seizure. The RGH ED aims to see and treat all patients as quickly as possible, unfortunately at times there can be multiple life threatening emergencies in the department at one time and this can lead to delays in other patients being seen. When this occurs, patients waiting with the ambulance staff and in the waiting room are monitored regularly and any concerns or abnormalities are then escalated to a medical officer for review. Patients/carers may also escalate concerns at any time via the Aishwarya’s care call from the ED waiting room via the pink Aishwarya care call phone or their own mobile phone.

I am very sorry that we were not able to provide a more comfortable space for your relative to wait and for any distress that this caused, I understand their frustration and completely understand their decision to go home and sleep. If you would like any further information or if we can assist you further, please contact our consumer liaison team on 9599 4323.

I sincerely hope that your relative will have access to the care and support they need via the FSH epilepsy clinic.

Kind regards,

Kath Smith

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

Update posted by leatherbs64 (a relative)

My relative rang Fiona Stanley epilepsy clinic and they couldn't give my relative any update on wait time at all. Their Dr sent through asking had anyone reviewed my relative’s referral and now hopefully my relative is seeing same said Dr to send through some notes on their change in meds which are three in total now and daily episodes that are affecting them. I feel it is tragic our system is under this pressure and a disgrace that our state government needs to address. In my opinion, we used to have an amazing health system, seems that isn't the case any more!!! So not happy with the response as my relative is going down hill and trying to look after a young child and partner is too scared to leave them alone. I don't know how they are paying the rent with the two hundred a week increase they just got and we help as much as we can but I feel my relative needs to be seen. I fear for their safety

Update posted by leatherbs64 (a relative)

My relatives Gp did what was recommended on here and sent urgent review of referral some weeks ago now to Fiona Stanley and about three weeks ago the GP called my relative into their clinic and said it had been forwarded by Fiona Stanley back to Rockingham hospital. And still no appointment.

The Gp also did a scan as my relative now is getting frequent extended periods of hand numbness was more one side now both and pins and needles. They do have bursitis in one shoulder but it was thought not the cause. Their GP is of the belief it is on neurological nature. Given they are now on very high doses of three meds one being frisium but getting auras and smells still moments of feeling a seizure coming on, they are still no further on with this.

It is almost three years now they have been epileptic and now 12 months on the Fiona Stanley epilepsy clinic wait list. As recommended on here they also rang the Fiona Stanley epilepsy clinic as on here I was told they would be able to give my relative an estimate of possible wait time for an appointment.

My relative was told can't tell them when. Also Rockingham hospital got the recent referral from Fiona Stanley hospital and they can't say when they will be seen there either. My relative is dealing with an autistic child school age and a premmie two year old with delays. Their partner can't leave them some days and is self employed. Their mental health is suffering and financially they are going under. No one can tell us when they will be seen by Epilepsy clinic Fiona Stanley and we are going around in circles. I am really fearing now for their life as they are catagory two! They are also on the wait list for the gynocologist as they are now having fortnightly periods! What more can we do?! Please someone help

Response from Neil Doverty, Executive Director Fiona Stanley and Fremantle Hospitals Group, South Metropolitan Health Service 8 months ago
Neil Doverty
Executive Director Fiona Stanley and Fremantle Hospitals Group,
South Metropolitan Health Service

Submitted on 20/08/2024 at 2:01 PM
Published on Care Opinion Australia at 3:11 PM

picture of Neil Doverty

Dear leatherbs64,

Thank you for reaching out on behalf of your relative – you sound like a good advocate to have and clearly care deeply for your relative.

There are a few different issues you have raised now, and as we cannot identify your relative from the information provided, we would strongly encourage them to phone the Patient and Family Liaison Service (6152 4013, Monday to Friday 8.30 am to 4.30 pm) or email them (FSHFeedback@health.wa.gov.au). Once we have your relatives details and consent we will be able to fully investigate what is happening and hopefully provide them with guidance and a meaningful update.

We look forward to hearing from them soon.

Kind regards,

Neil Doverty

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

Update posted by leatherbs64 (a relative)

Hi they have already done this and nothing has happened! But that was to Rockingham Customer liason. They just keep getting redirected continually. No appointment time. Can you provide me with an email so you can look into it personally as my relative gets no where

I feel like no one cares and no one is taking this seriously.

They are hardly leaving the house now!

Update posted by leatherbs64 (a relative)

I have contacted before and my relative with out of control epilepsy still no appointment 14 months on wait list. Was told recently would be seen by Dr this month but no appointment at Fiona Stanley hospital. My relative rang today to be told their referral has been sent on by Dr to Sir Charles Gardiner hospital as Dr thinks maybe brain surgery. The private neuro my relative occasionally sees thinks that is jumping the gun and a different med to be tried. They are on three meds and now also not gone into a full seizure has had two episodes of losing sight this week for extended over an hour each time with Aura. No one can still tell them when they will get an appointment at Sir Charles Gardiner. My relative is home sometimes alone with their toddler delayed premmie so dangerous

The frustration is mounting terribley here as I believe its becoming dangerous. Their partner is trying to work in their business but mostly can't. I am helping financially now. When will my relative be seen? They were told they would be kept on list at Fiona Stanley but that hasn't happened

So they are now on the wait list at Sir CHarles Gardiner

This is all so not acceptable in my opinion.

Three drugs and not controlled and losing sight

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