"Lymphoedema -waiting for allocation of operations"

I  moved back to Scotland in 2017 due to my mother being ill and my self having a chronic condition called lymphoedema (too hot in Spain for this)

When I first arrived I signed with a GP and was assigned a lovely GP, she helped me a lot she referred me to the lymphoedema clinic in Glasgow where I got to meet my nurse who provided me with some bandages before she had even seen me.

Once she started treatment with me she advised me to get my GP to refer me to a lymphoedema specialist consultant to assess me as I could be eligible for a Lymphatic Liposuction which would get my legs back to a normal size. We had to ask for funding and eventually we got it so I was able to attend an appointment with the specialist consultant. He advised me I was able to have this operation, but my doctor didn't know we had to reapply for the funding. The consultant contacted my nurse to ask about my situation as until the funding was sent he couldn't put me on the waiting list, finally with a couple of calls and emails my GP managed to get that sorted and I was placed on the waiting list in may 2019 and was told it could take up to 6-9 months.

Unfortunately when it was coming my time COVID struck and everything stopped, even my weekly bandages so that made my health really deteriorate and there were no updates for 2 years of when this would resume. 

After that in 2022 I finally could start going back to my treatment with my nurse and we discussed the fact we hadn't heard of any updates so I started emailing my consultant. His secretary would always send me an email back advising there was no update that they didn't know when they would start again

So I started raising complaints as there was no communication, no updates, nothing, only what I got through my emails.

My nurse had even spoke to my consultant and told me that he wasn't doing the operations but what she really meant was he wasn't taking on any more patients only the ones he already had.

I raised a complaint and was told that there were no staff, they were only attending people with cancer, there was no theatres.

Time went on and still no updates so in 2023 I decide to escalate it to the Ombudsman as I just didn't get any updates from the hospital. I had information from my consultant as he wanted to start his surgery but the hospital wasn't able to give the go ahead. 

I got a response from the Ombudsman in June where I was told I cant skip the queue unfortunately but they would keep me informed with updates .

October comes and no updates either so speaking to a friend she advised me to speak to a SMP in my local area, which I did and they contacted on my behalf and got an answer.

Now that I was a priority case, they had to allocate me to the operations as soon as possible my legs by now were huge, I have had suicidal thoughts  loads of times, I'm so depressed, I just can't be bothered with nothing and I am only in my forties. 

I am a priority case but it says on the letter that they had had no updates from my GP or my nurse advising of my situation, but that wasn't right as my nurse had contacted my consultant on occasions and even spoke to his secretary.

As my mum had passed away during COVID I had to change GP so now I have a new who I contacted and told about the situation and he said they haven't contacted us to ask about your situation but send me the email. He updated them with my circumstances, as does my nurse.

6 months later still no update, no communication, nothing.

My consultant isn't to blame in this story as he wants to do his job but for some reason Ninewells hospital and Tayside boarder are unable to let him.

People like me with a chronic condition called lymphoedema are suffering the consequences and I have been neglected treatment which could be a life saver for me. I am depressed because I can't wear anything, I can't do anything as I walk around with legs like tree trunks or elephant legs, I also deserve to have a nice life, and be able to do things.

I used to be a very fit person loved being out and about now I just struggle to get to work, I have changed jobs due to this illness. I cant work in things I like as my legs hurt all the time and not including other issues you get with this illness.

I just wish the day my consultant can do this surgery and I get my appointment, while me and the other people who suffer from this are waiting for a better life.

I cant blame any of the professionals that have helped me (doctors and nurses) but I feel I can blame a hospital that is taking 5 years to allocate me to have 2 operations that I really need.

Sorry for my long story but I think we need to know what's happening as we are all vaccinated against Covid and we have flu  vaccines every year.