Anna has lived with the life-changing after-effects of Bell’s palsy for 10 years. During the pandemic she struggled with no access to treatment and was told to contact the NHS if her condition was worsening. Knowing everyone was under pressure she tried to be patient but eventually had to seek help. However, the lack of awareness about facial palsy with staff not grasping how much she was suffering made things so much worse. Anna says more awareness urgently needs to be raised.
Anna on her wedding day
In August 2011 I married my long-term partner Lewis. On my wedding day I could hardly eat anything because everything tasted so salty but in all the excitement I didn’t dwell on this. We had the most magical day but that night, our first night together as a married couple, I experienced the most awful pain in my neck and hardly got a wink of sleep.
It was the next day when we went down to have breakfast in the hotel with my mum and dad that my mum noticed something wasn’t quite right with my face. My right eye wasn’t blinking at all and the whole right side of my face was paralysed.
I tried to stick my head in the sand and tell everyone I was fine and would just go to the chemist for some stronger painkillers. However, the pharmacist told me to seek proper medical help so I made an emergency appointment with my GP, who told me rather matter-of-factly that I had Bell’s palsy. I started crying, I had only got married the day before, but my doctor could not have been less sympathetic. He just prescribed some steroids and said Bell’s palsy goes after a few months. He said if I wanted to know more to look it up on the internet.
I spent the next month at home avoiding work, mirrors and struggling with an eye that wouldn’t close. I was unable to eat food without it spilling and only able to drink with a straw. I felt really run-down and completely unsupported.
Anna had to wear an eye patch
After three months my GP was still unwilling to help me, the white of my eye was beginning to turn yellow, I was in so much pain because it wouldn’t blink. The first health professional to show me any compassion was an optician who told me I needed an eye-patch to save my sight because my eye was so dry.
It was really hard not being able to kiss my husband, we were newlyweds, and this led to agonising tears most nights. I was emotionally very fragile.
It wasn’t until October after our honeymoon that I started to get a little movement back in my right eye and the skin on the right side tightened up slightly. The changes were very minor though and I knew it was time for a second opinion but I didn’t know who could help me.
Anna’s face was paralysed
It was only by a chance appointment at hospital about an unrelated matter that I got talking to a doctor about my Bell’s palsy and they told me about another GP who had had the condition herself. Through the new GP I was able to get a referral to a specialist team in Glasgow in November 2012 and I was bowled over by how caring and considerate they were. My treatment included nerve graft surgery, physiotherapy, speech and language therapy and Botox injections. I was also supported by a psychologist with therapy.
The surgery did not take me back to ‘pre-wedding me’ but it really helped. With this much needed ongoing help I found I could talk properly and smile and eat and drink like a normal adult. I could also kiss my husband. I was having Botox injections every four months to help with the pain and tightness caused by synkinesis which is really debilitating. The ongoing medical treatment helped me regain my confidence and land my dream job.
Anna after surgery
Fast forward to 2020 and the pandemic hit and this is where things abruptly changed.
Anyone who knows me well knows that I have Bell’s palsy but mostly avoid talking about it as I don’t want to feel it dominates my life any more than it already does. However, after an extremely trying year I’ve decided that instead of continuing to quietly cry in private about my experiences, I’m sharing these to raise awareness that there simply has not been enough support during the pandemic.
There is an unusual stigma that surrounds facial palsy and a real lack of awareness from the general public. From being told “smile, it might never happen”, never helpful and a reminder that people assume you are just a miserable person, to people completely misconstruing your mood based on your lack of ability to form universally accepted facial expressions. Which means, this last year of video calls and zoom meetings has brought new challenges of being confronted with my appearance, causing me to feel the need to put on a performance and to be unnaturally animated, to prevent people from getting the wrong impression.
As mentioned above, I would normally continue to receive Botox, to help ease muscle spasms and synkinesis, through the NHS Facial Palsy clinic that I have attended since 2013. Having this treatment has helped me immeasurably as well as attending a Facial Palsy support group. The thing that has made the most impact in recent years is definitely Botox. Without it, I am unable to wash, drink, eat and sleep comfortably. I develop intense painful cramps in my jaw, particularly when I laugh or cry, meaning I have to stay on top of my emotions at all times, which has been challenging during the last year of lockdowns.
In 2020, I had two appointments with my NHS consultant cancelled without explanation. The first was rescheduled to a later date and as this date approached, I received another cancellation letter without any further appointments. Stress had been building for me throughout the year as my physical symptoms of facial palsy worsened. I was worried that I wouldn’t get treatment and the pain would continue to increase, making me feel less like myself. Within the letter it advised that if your condition was worsening you could contact the NHS, which I did. When I telephoned I was passed around several departments and didn’t manage to speak to anyone who understood my condition or could explain why I wasn’t able to see the consultant. I wanted to know if clinics were still taking place and if I was just unlucky, or if they had been put on hold under current restrictions. The last person I spoke to said they would send an email but that they understood lots of people weren’t receiving treatment for various ailments, even cancer patients.
I received another letter at the end of year with an appointment scheduled for February 2021. Every week that followed was a countdown to that day. Whenever I was in pain and discomfort I took solace in knowing that in a number of weeks, I would finally receive the treatment I needed. Each time I found it difficult to chew my food, I reassured myself that relief was just around the corner. I telephoned the NHS seven days before my appointment to check it was still happening, I was anxious it could be cancelled at the last minute. The call handler informed me that it had been changed to a telephone appointment, but that a letter had not yet been issued. I explained my situation and that this type of appointment wasn’t very helpful for a facial palsy patient. They advised I speak to the consultant about my concerns. I received a text message two working days before my appointment advising that this would be a telephone call and that it was scheduled for the day before my appointment had been due. When I receive Botox I have to take the day off of work. This is because it can be a traumatic and painful experience, without any kind of local anaesthetic, and I often feel faint afterwards, a small price to pay for the relief it finally brings. I was so upset by the lack of communication on the appointment that I decided to make a formal complaint, something I had been avoiding for nearly a year, as I know everyone in the NHS is working as hard as they can to do everything to help people in need of medical attention. This was something I did not want to do but felt that at this stage, I had no other option. Initially the complaints handler suggested I write an email, to begin a paper trail, but I pushed back on this, explaining that I had tried to raise concerns the previous year and was not any further forward, that I wanted to know if treatment was even possible during this time and how deeply my physical and mental health was being affected.
Finally feeling better after Botox
I repeated, this impacts how I eat, drink, sleep, wash, laugh, cry and feel throughout the day. They reassured me that my wellbeing mattered and given the seriousness of my complaint, they would ensure I was given an in-person appointment within the next five days. An hour later I was called with an update, I would receive treatment the next working day. Thankfully my work were very understanding. I was exhausted by the whole process, angry and upset. Had I chosen to make a formal complaint earlier, would I have been given treatment then? I worried about all of the other people struggling with facial palsy, not receiving Botox and continuing to suffer in silence. I felt lucky that I was able to harness my frustration, effectively articulate myself and gain a more positive outcome.
When I had my treatment, I asked if the facial palsy clinic was still running but was told that unfortunately it’s currently on hold due to staffing shortages related to the current restrictions and ongoing Covid-19 pandemic. I am concerned that there are so many people unable to speak up about the lack of care they are receiving and feel disappointed that patients are not given an explanation as to why this is happening. I hope that making the complaint has raised awareness within the NHS of the challenges faced by patients, and that the clinic will be running again as soon as possible. Facial palsy may not be a life-threatening illness, but it impacts most aspects of sufferers’ lives and more awareness needs to be raised. Facial Palsy UK have been a great help to me over the years and, coincidentally, reached out to me during my time of need at just the right moment, offering support and even just a shoulder to (virtually) cry on. Knowing they are here to help people like me gives me hope that no one need suffer in silence.
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.