Social Media Campaign, MP Template & We are Close to 35,000 signatures!
Good afternoon all,
Firstly, Thank you all so much for your supportive messages. I really appreciate it.
We are close to 35,000! - This is fantastic! thank you all for your hard work.
Social Media
How is everyone getting on with the social media campaign? I have seen lots of people joining in and using the tags suggested. Thank you! all this is brilliant and will help us spread the word. I have provided updated instructions (Below). Someone kindly pointed out to me that on Facebook the instructions will be above the photo, it is just Instagram where the instructions are below the photo. In addition, I have attached a photo of another example where you can support a friend/loved one who suffers from chronic pain through the campaign.
The Official Social Media Campaign for our Petition.
- Instructions
A photo of yourself (If you suffer from Chronic Pain) or someone you care about who suffers from Chronic Pain (with their permission).
With text on the photo saying - " I Suffer from Severe Chronic Pain and I Deserve a Quality of Life.
Please Read Below/Instagram - Above/FB"
Or "I suffer from Chronic Pain and I Deserve a Quality of Life. Please Read Below/Instagram - Above/FB"
Or "My Friend (Or wife/husband/girlfriend/boyfriend etc) Suffers from Chronic Pain and She or He Deserves a Quality of Life. Please Read Above/Instagram - Below/FB."
Please see the example in the photo attached.
(I have blurred my photo because I feel our needs as chronic pain patients are being blurred out. We are being ignored - let's make sure our voices are heard! )
I used the app Quotes Creator but please feel free to use what you feel most comfortable with.
- In the Social Media Text.
Stop the Cruel Changes to Chronic Pain NICE Guidelines.
Please Sign & Share -
- Essential Taglines - #NICE #NationalInstituteforHealthandCareExcellence #stopthestigmachronicpain #stopignoringus #wedeserveaqualityoflife #chronicpainisnotNICE
Possible Taglines - #chronicillnesscomunity #spooniecommunity #westandunited
#wearenotaddicted #chronicpaincommunity #weneedmedicationtofunction
My Example of MP letter and Template. Please use this as a guide only.
Dear (MP names)
Explain your current situation or your loved one situation in regards to chronic pain. Explain how the medication/therapy/intervention etc that has been taken away from the NICE guideline is currently helping you. Explain how you may have experienced medical gaslighting.
The NICE GUIDELINES govern how the NHS provides care and treatment. They are published cruel changes that will further debilitate thousands of people who suffer from chronic pain. These changes will dramatically reduce my quality of life and many others. I am reaching out to ask for your help.
The charity Action for Pain (2020) state several recent surveys points to around 1 in 7 of the UK population having chronic pain. Add to this those actually “affected” by chronic pain then the ratio changes to 1 in 4! Yet the fight to get timely and effective treatment for your chronic pain is often long and difficult. It is incredible to think that despite the clear evidence provided by the above figures treatment for chronic pain is still one of the most under-funded services within the NHS. (Action for Pain - 2020)
Yet, NICE has published guidelines removing numerous pain relief medication and treatments; which would make my life and many other chronic pain patients lives unbearable in regards to access and possible additional medical gaslighting.
Please see this link for the detailed NICE guideline - https://www.nice.org.uk/guidance/NG193
Please see this Link for the Petition - 'Stop the Cruel Changes to Chronic Pain NICE Guidelines' that has over 34,000 signatures. http://chng.it/YYf9LZYs
Yours Sincerely
(Your Name, Address and Telephone number)
This is one of the email/letters I sent to my Local MP prior to NICE publishing the barbaric decision. I have removed my address and other personal details. The MP replied to this specific email saying that she would not help.
Dear Alicia,
My name is Claire Swain and I live in Melton Mowbray. I was previously a health professional who specialised in mental health. Sadly, I lost my employment and independence when my health dramatically declined due to a neurological disorder. I am mostly housebound due to the severity of my symptoms. My symptoms include chronic pain, chronic fatigue and mobility difficulties. However, until I was prescribed Oramorpth (Morphine Opioid - Based Medication) I spend the majority of my days curled up in a ball in pure agony.
The NICE guidelines are proposing cruel changes that will dramatically reduce my quality of life and it will be the same for many people like me. I am sure you will have heard of the ‘Opioid crisis’ and some people becoming addicted to Opioids. Yet, what about the other side of the story? There are many chronic pain patients out there including myself where their quality of life has improved since being prescribed opioid medication. I take medication to enable me to have some ability to function.
I have tried and completed numerous methods over the years with an open mind, including the methods they are suggesting as keeping as ‘acceptable treatment’. Those treatments provided me with no pain relief and did not support my ability to function.
The NICE guidelines also recommend removing anti epileptic drugs for chronic pain. I am prescribed an anti-epileptic drug called Topiramate which has dramatically reduced my migraines from daily to once a month. (Migraines are one of my symptoms)
I have had to fight every step of the way to receive support and treatment. The majority of the time I have faced Medical Gaslighting especially before I moved to Melton Mowbray (5 years ago). I am truly exhausted by it all and everyday life is difficult as it is. And, now this feels like the last nail in the coffin.
I felt overwhelming relief when I moved to Melton as my GP here has supported me and consequently, my neurologist and pain consultant has arranged for me to be referred to a neurosurgeon to have ‘Chronic Pain Surgery/Brain Stiumilation’ as a next step to control my pain levels (It is on hold due to COVID 19). Under these proposed guidelines, the NICE guidelines would take that away from me as well.
I truly feel in despair and I wondered if you would be able to help me, please?
I have set up a petition to ensure our voices are heard. Please see link -http://chng.it/YYf9LZYs
Here is a link to the proposed changes - https://www.nice.org.uk/guidance/GID-NG10069/documents/draft-guideline
Thank you for your time,
Please let me know if you have received this email.
Best wishes,
Claire Swain