Please see below my letter to my local MP and AM, which I would like to be considered (anonymously of course) as part of your current consideration and consultation on Covid-19 in Wales.
I'd especially like this to be considered in light of the current lack of long Covid support or infrastructure for those suffering from the illness in Wales & the lack of recognition of the condition by some GP surgeries (including my own).
Please get in touch with me if you need any further information.
Kind regards, xxxx
__________________________________________________________________________________
Hello
I am your constituent xxxx of xxxx Cardiff.
I’ve been suffering from Long COVID for approximately 10-11 months now.
My most troublesome symptoms are constant pain and fatigue, shortage of breath, swollen calves and ankles, inability to exercise regularly, unexpected weight gain & sight problems/dizziness (amongst others).
These difficulties prevent me from effectively caring for myself and helping my elderly parents (who live around the corner from me & are in my bubble).
All of these factors along with my inability to take regular exercise has dramatically affected my already poor long-term mental ill health, anxiety levels and panic attacks.
Because of this I have felt totally helpless since the original lock down back in March 2020.
The only benefit I currently receive is enhanced ESA, but that is shortly up for review. This is also causing me additional unnecessary stress.
I have been told that I may be entitled to other help, but I don't have any idea where to start with this.
I briefly had a support worker from the Salvation army in Autumn/winter 2019, but she was taken off me before the lock down as it was only for 3 months. I miss this support greatly.
As a result, I'm not sure how to claim any additional benefits (or if I'm entitled to any). As I am no longer able to rely on family members to help run my household, I have often had to go without hot meals & live in a house which hasn’t been cleaned properly for months. I also am struggling to make ends meet financially (I have several debts owing) and am currently relying on my parents' help with paying my bills and mortgage. I really don't know what to do or where to turn right now.
As a single person with several chronic illnesses living alone throughout this unprecedented period, I cannot describe how scary or isolating this experience has been for me.
I have always been extremely close to my parents - especially as an only child - but I feel extremely guilty that I am unable to support them as much as I'd like at the moment. I can't even look after myself!!
I therefore can't help but be concerned about what the future will bring for me & them if nothing changes or indeed gets worse.
(For your information, my Dad xxxx is xx years old, and has had alzheimers and vascular dementia for at least xx years. My Mum xxxx, is xx and thankfully of very good health for her age. She too is finding it a struggle nevertheless).
I have recently become a member of Long COVID Wales, a support group on Facebook set up to support those living with Long COVID. The recently set up group currently comprises over 600 members and is growing fast.
The Twitter thread below includes the link to the preprint from the Patient Led Research team on Long Covid, with insights into symptom profile, time course and their impact on daily life, including the stark figure that almost 70% of those who fell ill prior to June are working reduced hours or not at all on account of their health.
https://twitter.com/athenaakrami/status/1343166511842787328?s=21
Please attend the Parliamentary debate on 14th Jan to represent myself and other constituents in the same situation.
Due to living in Wales I have not been able to access a Long COVID clinic like the ones being rolled out in England. I need specialist healthcare in order to get well, more than my GP is able to provide. This is because Long COVID is a new illness which doesn’t yet have any treatment protocols. It doesn’t seem fair that treatment is being allocated in England and not in Wales.
I myself have struggled to access health care even more often than before during the past year; I have had problems with accessing my medication and getting repeat prescriptions, not being able to get face to face GP appointments to examine my swollen and weeping leg problems, fatigue & worsening mental illness. This cannot go on indefinitely.
The total Covid positive cases in Wales is currently in excess of 155,000 & ONS estimates 10% will have Long Covid so that’s in excess 15,500 sufferers before you add those who had Covid in the first wave before community testing was available.
For more information about Long Covid please see the following article in the Lancet:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32705-7/fulltext
Please could you confirm whether you will be attending the debate on my behalf.
I would also appreciate any support you & your office can provide or suggest to help me and my family during this increasingly difficult time.
With Thanks
xxxx