Verity’s Story

Verity before Bell’s Palsy struck

My name is Verity, and I live in Hampshire. I want to share my personal experience with Facial Palsy in the hope of raising awareness about the challenges faced by individuals like me and shedding light on the gaps in knowledge within the NHS regarding this condition.

On the ominous day of November 3rd, 2020, I found myself rushed to hospital with symptoms that initially raised suspicions of a stroke. In the shower that morning I got soap in my eye and I couldn’t wash it out despite trying. I looked in the mirror and the left side of my face was not moving. I couldn’t blink nor smile. The fear and uncertainty of the situation was overwhelming, especially as a mother concerned about what this might mean for my children.

Upon undergoing tests in the hospital, the diagnosis revealed Bell’s Palsy, a condition that I had not been familiar with until that moment. The treatment approach presented to me was a five-day course of steroids and a leaflet on how to appropriately tape my eye down at night to prevent it from drying out. That was it.

Verity was diagnosed with Bell’s Palsy

What struck me most was the lack of information and guidance provided by the NHS. What caused it? They couldn’t answer. When will it go? They couldn’t answer. Most recover within three months was all they said. There was no follow-up arranged with my GP, leaving me to navigate this unfamiliar territory on my own. The only advice I received was to contact them if I did not see any improvement within three months.

So, modern day, I turned to the internet to help me. I joined a Bell’s Palsy social media support group on Facebook and began researching what I needed to do to get rid of this paralysis quickly. Never in a million years did I think that three years later I would still be doing the same and trying to educate others now what not to do when diagnosed. Reading other people’s experiences terrified me, but also felt vulnerable taking advice from people who I’d never met but felt it was my only option. I read that some people were given antiviral medication as well as steroids and I’ve always wondered if I should have had the same? I felt powerless and at the mercy of the NHS who didn’t really know. It was on this group I read that I should try acupuncture as it’s the most effective at time of diagnosis.

Within a week of reading all of this unqualified medical advice, I paid privately to have some acupuncture. The person was qualified but in hindsight didn’t have a clue about Bell’s Palsy and acupuncture, and best practice in this area. They used acupuncture with electrical stimulation in the needles. I later found out from my specialist facial therapist that this type of acupuncture during the early stages of Bell’s Palsy can cause synkinesis. Which subsequently I later developed.

During the onset of Bell’s Palsy I could not eat properly, speak properly, would dribble a lot and sound drunk to people on the phone. I did not want to go out and see anyone and thanks to covid I didn’t have to. The only good thing that came out of lockdown – I didn’t have to make excuses about not going out. My confidence was shattered.

Wearing an eye patch

I wore an eye patch 24/7 and when my eye got so sore I contacted the GP. They referred me to a high-street opticians to get the health of the eye checked. They didn’t ask if there was anything more they could do to help with the Bell’s Palsy. It was like that didn’t exist anymore and I just had a dry eye that needed treatment.

After about a month of no movement, I spoke to my GP, they referred me to an NHS Clinic in Hampshire and a private clinic to see who would respond first.  I remember speaking to the NHS clinic who said there was a waiting list but because I was early stages I was too early for their treatment because it “might” go away on its own. So, I went privately to see a specialist facial therapist because I wanted to be fixed. Fixed quickly. I was fed up.

I saw a wonderful specialist facial therapist based in Winchester, what they didn’t know about Bell’s Palsy wasn’t worth knowing. It was the first time I had met someone that genuinely cared about my progress and wanted me to get better. We helped each other in our research to help me improve. She supported me through the highs and lows with a few tears along the way. I remember feeling a flicker in my ear and she said that that was a bit of synkinesis and showed me an exercise that could help it. I recall asking when synkinesis would go away to which she replied “you just have to try and retrain your brain to tell your face to work how it should do, it won’t go away” I burst into tears. The thought of living like this forever was soul destroying.

Verity developed synkinesis

When my private specialist facial therapy came to an end, I tried the NHS again as I had heard Botox® injections might help. I then received some Botox injections from a maxilofacial surgeon to help ease the muscle tightness at an NHS hospital in Hampshire. This helped give my face some symmetry and ease the pain caused by the tightness. Unfortunately, in May 2023 I was injected by someone else on the team without suitable training and too much Botox was injected resulting in my eye not being able to blink for three months. Unbelievable. Another blow to suffer which I wasn’t used to as the Botox injections usually had a positive effect on me. This time it put me at risk of my eye drying out and becoming very sore – which it did.

It was thanks to my private specialist facial therapist that I discovered the Facial Palsy UK Charity in 2021. I will forever be grateful to her for this, as this charity have been incredible.

Facial Palsy UK (FPUK) educated me on all the things you should and shouldn’t do at the onset of Bell’s Palsy. Why could the NHS not direct me to them in the first instance? I learned that things I did i.e. electroacupuncture at the beginning, I should not have done. I should have relaxed more. Instead, I became very stressed at the lack of support which no doubt hindered my recovery.

Verity now

In February 2023 I wanted to explore whether surgery was an option as the aching feeling in my cheek and neck bands was relentless. Facial Palsy UK provided me with the details of my nearest specialist in the UK who treats people like me.  He is based approximately a 2.5 hour drive from where I live and takes patients from outside of the area providing they have a referral from their GP. Not all GPs would do it. Mine did, eventually, after they first declined because they said they couldn’t refer to a hospital so far away. I pushed back on them after FPUK said they do take patients all over England. This resulted in the referral being made.

In May 2023, 2.5 years after diagnosis, I received an appointment to see the specialist, a plastic surgeon with a specialist interest in facial palsy. I had to wait until November 2023 for the appointment but it was worth it, he was amazing. Empathetic, compassionate, and knew exactly what I was going through. Straight away he registered me to attend their specialist facial therapy course which I started in January 2024. My condition is severe enough that I am now on the waiting list to have the Selective Neurolysis operation.

Fundraising for FPUK

This experience has prompted me to speak out and advocate for increased awareness and education about Facial Palsy within the NHS. It is my belief that a more comprehensive understanding of this condition is essential for both medical professionals and the general public. Timely diagnosis, proper follow-up care, and access to relevant resources can significantly improve the lives of those living with Facial Palsy. Unfortunately, I didn’t get the right support at the beginning due to lack of knowledge of the condition.

As a thank you to Facial Palsy UK Charity for their unwavering support in my recovery. In 2022 I raised nearly £2000 for the charity in a sponsored walk in Windsor, Surrey. My family came and supported me and despite the blisters, I completed the 25km walk with a smile (well half of one) on my face.

I am hopeful that by sharing my story, we can initiate a dialogue on the need for improved awareness and support for individuals dealing with Facial Palsy.