I have been back in Scotland for over a year, and 10 months in North Lanarkshire.
I have Rheumatoid Arthritis, Ehlers Danlos Syndrome, severe hearing loss, very painful tendinitis and problems with a sublaxing shoulder which causes pain and numbness. I also suffer from Depression, and as a result of the pain I am always in, and the fact that I have not been given my usual anti-depressant medication, it has just got worse.
I can't walk properly due to excessive pain in my achilles and feet, and that has now caused problems with my knees, which already have osteoarthritis and my hip which was under control, but has now relapsed.
I have not been able to sleep through the night for months. I always wake up several times a night in pain and have to use ice spray and take more pain medication in order to go back to sleep.
On arriving here in North Lanarkshire I was on several treatment plans and all of these problems were being managed well, but none of these have continued due to covid, as well as not being able to get a Psychiatrist/Psychologist/Orthopaedic surgeon/Audiologist/Physiotherapy/acupuncture/pain therapy/ appointment. My conditions call for ongoing management and therefore the 10+ years of previous treatment that I have had has been wasted, as I am back to square one.
I have only had one GP appointment, which was last week, where the Dr suggested more pain medication and put me on a list for xrays, which may take a while. My GP prescribed Pregabalin, which I am reluctant to take, as I have been on it previously and the side effects were very bad. I have carpal tunnel in both wrists which I was told to get my own splints for as the NHS could not supply these at the moment. I asked if they could assist me with my other health issues as I had not managed to see a GP in 10months, but they said that he could only deal with the shoulder/carpal tunnel problem. The GP is not taking appointments and all of the referrals that have supposedly been done have come to nothing.
Basically, the only Dr that I have seen in the last year has been the Rheumatologist, who decided not to put me back on the Abatacept Infusion which I have been on for 8 yrs, but said that they are not sure if this will cause long term damage or not, and the referrals to Maxillo-facial (my jaw clicks out of joint, is painful and makes an awful noise when eating), Foot and ankle (Achilles tendonitis & unstability), and ortho (hip & neck pain/instability), I have heard nothing from anyone.
The GP apparently referred me to the Audiologist last year (I am more than 50% deaf with one hearing aid that works), I have not heard a thing. When I call to ask for batteries, which I incidentally did receive early last year, I am now told I can't have as I have no card from the Audiologist, which I am still waiting to see.
I was referred to an alternate treatment clinic while still living in Glasgow last Feb, so that I could have acupuncture and physio, which I never actually got to. But apparently they can't offer me that in North Larnarkshire, which makes no sense to me at all.
I also need to see a gynecological urologist, as I have a severely prolapsed bladder (which has had several surgeries), which I mentioned to my GP, but he said that he could not deal with that at the moment. So have not even been referred.
In short, I have had basically no help at all for a year and everyone is blaming it on covid. I am 100% aware of how dangerous covid is and have been shielding as was recommended by my GP, but the severe ongoing pain is making my depression worse and with not being supplied with my Bupropion, and with only one hearing aid working and not getting battery supplies my life is getting more difficult by the day.
If I need to move homes in order to be in an area where I will be offered some sort of care, then I will do so. But I need help in identifying which area would be best.
My biggest worry is that I will end up being disabled due to having no care and management. Which ultimately would cost a lot more as I would not be able to continue to work.
Throwing pain medication at me is not a solution and will only make matters worse as these are addictive.
I am so disillusioned and disappointed with the lack of interest shown by NHS staff, the red tape which is not allowing me access to hearing aid repairs and supplies, the hours that I have spent on the phone trying to get help, and not even getting through to a person. Where do I turn to now? If there is a Dr anywhere in the UK that specialises in Ehlers Danlos, I would love to know about it, so that I can get the help that I need.
"Lack of general care due to covid"
About: General practices in Lanarkshire General practices in Lanarkshire University Hospital Monklands / Rheumatology University Hospital Monklands Rheumatology ML6 0JS University Hospital Monklands / Trauma & orthopaedics University Hospital Monklands Trauma & orthopaedics ML6 0JS University Hospital Wishaw / Rheumatology University Hospital Wishaw Rheumatology ML2 0DP
Posted by Lesley A (as ),
Responses
See more responses from Marjorie McGinty