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"33 year old with no quality of life"

About: Queen Elizabeth University Hospital Glasgow / Neurosurgery (Ward 64 – 66) Queen Elizabeth University Hospital Glasgow / Spinal injuries unit University Hospital Wishaw / Emergency Department University Hospital Wishaw / Physiotherapy University Hospital Wishaw / Trauma & orthopaedics University Hospital Wishaw / X-rays and Scans

(as a service user),

I am a 33 year old woman who injured her back in June 2017 while walking the dog, since then I have been back and forth to Doctors, Physio's and Hospitals. I was an avid gym goer and extremely fit and I have now been reduced to either being in a wheelchair or walking with crutches. My mental health has seriously deteriorated , to the point where I wont leave the house. My plans to have children have been completely halted. I have had to change my work  to get something more able to accommodate me, I have to work, I have no option. I work for the emergency services. The medication I have been given affects my health, I make me ill and depressed and I have gained 5 stone in weight in 7 months. I have often contemplated the point of being here, I have no life. 

I went to my GP in the June about my severe back pain and the pain in my legs. The doctor was sympathetic about my condition, but seemed flippant about my prognosis. I was referred to NHS Physio and Wishaw General but the waiting list was that long, I paid for private physio as I couldn't wait. I went to private physio every week for 2 months at least and did get some relief. After this i was moving in bed one morning and the pain returned but worse. I then paid again for private physio. I then received and appointment to see an Osteopathic Therapist in Wishaw General (this was several month after my initial doctors appointment). The therapist was lovely and agreed that I needed to receive and MRI scan to diagnose the exact condition.

Once again the waiting list was months and months. I called them every week to find out if there were any cancellations and then eventually  in December I got a cancellation. The very same day I had the scan the therapist called me to advise that I had a bulging disc in L5 S1 and it was pressing on the S1 nerve on the right side and the disc was also bulging on the left side of the L5 S1 and in the S1 cavity and this is why I was in so much pain.  The therapist also advised that surgery would be the best way forward and that they were sending me over to the Neurology Dept in the Queen Elizabeth hospital, this was the start of December. I contacted the hospital to advise that I would be available at anytime for a cancellation only to be told that the waiting list to see a surgeon for assessment was at least 36 weeks.

My doctor then put me on Gabapentin and kept upping the dosage to try and lessen the pain. It make me very ill, I live day to day in a haze and feeling unwell. I then eventually got an NHS Physio appointment in January,. The physio then advised that hydrotherapy would maybe be beneficial. I then changed all my shifts at work to attend the appointments , sometimes losing money, the first 2 sessions were good, the physio helped and showed me what to do. I then went on holiday (I was booked before my injury) in  wheelchair because I wasn't able to stand or walk any distances. I still done my hydrotherapy that I was advised to do in the pool when I was away.

When I came back they physio had moved and I basically left in a pool myself the other sessions I had left as the physiod there didn't advise on how to progress. While if I asked what to do they would help but I needed the 1 to 1 sessions as the Gabapentin causes me to have memory loss and sometimes I couldn't remember what to do. I feel the last sessions were a waste of time. When the hydrotherapy was finished I was then sent to another physio, who was lovely but I don't think actually done anything. This physio would check on how far I could bend, advised to keep doing the exercises I had been given me and sent me on my  way. This continued for several months the same , I attended, was made to bend and sent on my way.

I then received the holy grail, the appointment with the surgeon, I still had to wait but it was a glimmer of hope that this may be finally coming to an end. I then had an accident and fell down the stairs in the house, the gabapentin makes me dizzy, and I had to be taken to hospital where I was kept in for 2 days and received another MRI scan. they sent me home after it and advised me to wait to see the surgeon in a few weeks. The physio gave me crutches on the next visit as i was still not walking straight.

I went to see the surgeon in Glasgow near the end on June and was advised that surgery would be the best option, I said this was fine but I had to attend a family wedding in October and that could I either be booked in before or after this.  The surgeon seemed agreeable to booking me in for after and told me my notes accordingly would be updated accordingly. I then got a letter through from the Neurosurgery dept to  advise that I wouldn't be seen again until at least the end of November. I called them an spoke to a lady who then told be that they were running around 4 and a half months behind meaning that I more than likely wouldn't be seen again until March 2019!!! nearly 2 years after my initial complaint.

I have now sought out to go private but the cost it that excessive I am now going to have to put my home up for sale to fund my surgery. I work and I have always worked and contributed and I am now going to sell my home me and my husband have worked hard for, so I am not living in pain. oh and I have also been signed off from physio at Wishaw! as there is nothing for her to do until after surgery!  I am at a complete dead end now, I have no life, my mental health is hanging on by a thread, I will have no home and my marriage is in tatters and I have no further options. I am a optimistic person and even while in extreme pain I have tried to continue on and go to work and contribute and not lie down to this but I have no fight now left in me.

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Responses

Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde 5 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde
Submitted on 31/08/2018 at 11:07
Published on Care Opinion at 11:35


picture of Nicole McInally

Dear malinpark

Thank you very much for sharing your feedback with us and l am very sorry to read that you are waiting for surgery and the impact that this is having on you. There are a number of services who have waiting lists that are long and I am sorry to say that Neurology is one of these services and we are aware that there are patients who are waiting longer than we would hope. The staff are trying to improve our waiting lists but this does not take away from the difficulties and pain that our patients are experiencing.

I have shared your feedback with the General Manager responsible for Neurology. Would you be able to contact me at Nicole.McInally@ggc.scot.nhs.uk with some personal details including your date of birth so that we can look into this further?

Thank you

Nicole

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Response from Ruth Currie, Acting Head of Physiotherapy, NHS Lanarkshire wide, NHS Lanarkshire 5 years ago
Ruth Currie
Acting Head of Physiotherapy, NHS Lanarkshire wide,
NHS Lanarkshire
Submitted on 31/08/2018 at 14:38
Published on Care Opinion at 14:59


picture of Ruth Currie

Dear malinpark,

I am sorry to hear of the difficulties you are having since injuring your back and the impact that is having on your day to day life. It sounds as if this is a very difficult time for you and your husband.

If you would like to get in touch with our Patient Affairs manager at Wishaw General Hospital on 01698 366558 with your name, address and date of birth, we will be able to look into your physiotherapy and hydrotherapy journey.

I hope you benefit from the planned surgery and are able to return to a full and fulfilling life.

Kind regards,

Ruth Currie

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Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde 5 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde
Submitted on 04/09/2018 at 14:49
Published on Care Opinion on 05/09/2018 at 09:09


picture of Nicole McInally

Dear Malinpark

Please accept my sincere apologies for the length of time you has waited so far for treatment.

The Neurosurgery department at the Queen Elizabeth University Hospital (QEUH) provides Neurosurgery services to the West of Scotland population. Unfortunately, due to high demand for surgical services, the waiting time for treatment is longer than we would like. The department are doing all they can to create additional surgical capacity, where possible, in an effort to reduce the waiting time for patients receiving treatment.

Craig Broadfoot

Clinical Services Manager

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Update posted by malinpark (a service user)

Thanks Craig for taking your time to read my story and reply. I’m afraid it sound like a usual standard reply that would be sent out. I have been waiting since December 2017 to see a surgeon and to receive the surgery. That is around 38 weeks so far ( That is me not counting the time wating from my GP’s initial referral which would now put this at around 66 weeks!) I myself work for emergency services and appreciate more than most how under pressure services are but none of the service users I deal with would wait even anywhere near the length of time I’ve been waiting. The delay is now causing other side effects and once again I have fallen and hurt myself due to being so unstable on my feet combined with the medication which doesn’t help, only masks basic symptoms. Is it going to take me to fall again and cause my disc to cause cauda equina for something to be done? Also as I previously stated my mental health is at its lowest point and everyday is a struggle to just get by. As I previously said I appreciate your reply but it is impersonal at best.

Response from Yvonne Ross, Patient Affairs Manager, University Hospital Wishaw, NHS Lanarkshire 5 years ago
Yvonne Ross
Patient Affairs Manager, University Hospital Wishaw,
NHS Lanarkshire
Submitted on 10/09/2018 at 10:40
Published on Care Opinion at 11:39


picture of Yvonne Ross

Dear malinpark

Many thanks for contacting me last week. I would like to thank you for your kind comments about the staff who have dealt with you within Lanarkshire. Since speaking to you that day, I have liaised with my colleagues in physiotherapy to ask if they are able to provide you with advice on how best to management your symptoms whilst awaiting your surgery. I will contact you again once I receive their feedback.


Kind regards

Yvonne Ross

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Update posted by malinpark (a service user)

Thanks Yvonne,

I appreciate any help that can be sent my way. You’ve been very helpful and I look forward to hearing from you.

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