"Left in the dark over waiting times"

I was referred to the Glasgow Endometriosis centre end of 2020 by my consultant on NHS Lanarkshire due to them being unable to offer me any further suitable treatment and me meeting the NICE guidelines for referral to a specialist centre, saw the head of the centre virtually in April 2021. I was put on the wait list for surgery with the centre and told I'd be getting Excision with them or one of their team due to the complexity and confusing nature of my case and previous surgical findings and an MRI indicating deep disease (bowel/and/or bladder involvement), and that it was suspected I was stage 3 or 4. This was in April 2021. They did explain to me that due to Covid there was a backlog so I'd be waiting a while but I was told roughly 6-12 months. 

I have since had no further communication or follow up from the centre with an update or anything regarding waiting times.

I have phoned and emailed the secretary but had no replies. I then ended up in A&E overnight in December 2021 due to worsening symptoms.  I had an ultrasound scan and a follow up with my initial consultant from Lanarkshire was made. In February this year I was made aware through social media channels and other patients posting on forums that NHS GGC had stopped performing routine surgeries again, having only just picked up the back log. I was also told that that the Glasgow Endometriosis centre has stopped funding for surgeries for anything other than CONFIRMED stage 4 disease; in other words even if you have suspected stage 4 you're now not eligible for funding.

This meant that patients are being referred back or put onto a list with a general Gynaecologist who may not have the skill or expertise to treat the disease. I was extremely distraught and upset about hearing this, as I assumed and was assured I would be getting the correct treatment I need with a specialist. Furthermore what upset me even further was finding this out through word of mouth, this had not been confirmed to me by NHS GGC or communicated to myself at all. I've been left in the dark enough when it comes to waiting times for surgeries etc, then to have found this out felt like a real let down in communication.

Upon hearing this information I contacted the consultant's secretary again, asking where I was on the surgeries list and what list as I'd heard again through social media there are different lists (again, not something that should be found out through social media as it puts patients at worry). I was informed I was on the list with a general Gynaecologist and that they couldn't tell me where I was on the list, or indicate when I'd be getting my surgery, but that I'd hopefully hear soon. I confronted them regarding the fact I was told I'd be getting Excision by a specialist and that I meet the NICE guidelines to be treated at the centre by a specialist. I then got a rather worldly ruded email back with a copy of the guidelines 'reminding' me of them. 

I have read and reread the guidelines several times having waited 10+ years to get a proper diagnosis, so I know when I am eligible for what treatment. I have been advised by other specialists I am eligible for this and that it is the correct course of treatment as well.

As you can imagine this just made me feel even more distressed, angry and upset as yet again I felt like I'd been left in the dark. 

I have since had my follow up after my A&E admission with my consultant at Wishaw. 

I explained/relayed all this information, and they were astounded and confused. They cannot firstly understand why I've not had an update or any form of communication regarding surgery, even if there is going to be a delay. I still should've had communication regarding delays. And secondly she cannot understand what has happened re surgical  treatment at the centre by the specialist. There is a letter dated April 2021 stating that is the treatment I will be getting. They have said that if that is not the case anymore, Wishaw should've been informed about changes and it would be on the system, but it's not. 

As a result of this I'm now at an absolute loss. I feel extremely frustrated, let down and upset by all this. It has been a total lack of communication, miscommunication and I have been left feeling in the dark about what is actually going on and who to trust. 

It is hard enough living with a debilitating condition, but to then add all of this pressure on top feels like a total let down. 

I feel extremely disheartened and disappointed in NHS GGC and the entire system. My mental health has been extremely affected by this as well and I just feel completely let down.