This is not the time to stop fighting!
“Our lives began to end the day we become silent about the things that matter.” Martin Luther King JR
It appears NICE have not listened to a word we have said, not from our petition or from the genuine stakeholders. They are very aware of our distress, yet they have not even been in touch since they have released their devastating decision.
This is not the time to stop fighting! Our lives matter and I refuse to just accept this barbaric decision for the entire chronic pain community.
We reached a fantastic 30,824 signatures. I am overwhelmed with the amount of support we received. I want to take this opportunity to thank everyone who signed and shared this petition. I also want to thank the genuine stakeholders. In addition, I want to say a huge thank you to everyone who went that extra mile with the petition. Your kindness and hard work will not be forgotten.
Please see the following:
1. How to try to protect yourself in relation to the new guidelines and medical gaslighting.
2. My plan of action for the petition and what I will be doing for the campaign.
3. What help I need from you.
What NICE are saying?
In a nutshell – if you suffer from chronic pain, you will be offered anti-depressants, exercise, acupuncture and psychological therapy (acupuncture and psychological therapy will be limited).
Here is the detailed guidelines - https://www.nice.org.uk/guidance/NG193
If you are currently receiving medication for your chronic pain (such as opioids) - NICE are allowing us to continue taking the medication but are advising health/medical professionals to ensure we know the risks and to make a joint decision with us.
Surely, everyone who suffers from chronic pain should have the right to decide if they wish to take pain relief medication or similar therapies; especially when they understand the possible risks involved. I would much rather have a quality of life.
This is especially bad for those who are just starting their long journey for medical help for their chronic pain. In addition, this is severely bad for future chronic pain patients who will find getting pain relief medication near impossible.
In addition, I know many of you have experienced Medical Gaslighting. Sadly, I can see this being another weapon used for medical gaslighting and another added fight for the medication we desperately need just to keep our quality of life (of any level). For example, I am currently on a morphine medication and I am hoping to have a chronic pain surgery later this year to improve my quality of life. Yet, due to the change of NICE guidelines – I am unsure if this will happen as it has been removed from the guidelines.
How to try to protect yourself or your loved ones with Chronic Pain?
Firstly, thank you to all the medical, health, therapeutic and alternative professionals that have supported the chronic pain community. You are rare gold!
Your Human Rights
The Human Rights Act is currently under review; however, I believe that Article Three of the act is not under review for change.
Article Three prohibits inhuman and degrading treatment. If caregivers (such as your GP/Nurse etc) fail to provide care that is needed to avoid preventable suffering such as pain relief in a clinically appropriate form, then this could amount to inhuman or degrading treatment.
Article Three prohibits inhuman and degrading treatment. If caregivers (someone who is providing you medical or health care) fail to provide care that is needed to avoid preventable suffering such as pain relief. Then this could amount to inhuman and degrading treatment.
Useful websites: https://www.legislation.gov.uk/ukpga/1998/42/contents/enacted https://www.equalityhumanrights.com/sites/default/files/human_rights_human_lives_a_guide_for_public_authorities.pdf
Your Rights as NHS Patient
I advise you to understand your rights as an NHS patient.
For example, we do not have a right to ask for a second opinion. However, you can ask for a second opinion and if the doctor is found unsure about a diagnosis because they did not refer you to a second opinion such as a specialist, he or she can be found negligent.
Useful Websites:
https://www.citizensadvice.org.uk/health/nhs-healthcare/nhs-patients-rights/
file:///C:/Users/Clair/Downloads/nhs-treatment-your-rights-factsheet.pdf
My Action Plan in regards to this Petition/Campaign
· I am going to keep sharing and raising awareness of this campaign/petition.
· I am not going to give up on this campaign.
· I am going to research methods of advocacy. I am going to read appropriate books about how others have changed laws and how others have won against big originations etc.
· I am going to continue researching pain medications and the benefits of how they are helping people like myself.
· I am going to continue engaging with the chronic pain community and hopefully they will join forces with me again.
· I am going to contact media sources again to attempt to raise further awareness of the campaign/petition.
I Need Your Help
I am not able to do this on my own. This needs to be a community effort.
· Keep Sharing.
· Talk to others about the petition.
· Contact your local newspaper and radio stations about your chronic pain journey and please mention this petition.
· Contact your MP.
· Do you know an Influencer or a popular YouTuber? Sharing the petition on their platform could raise awareness and hopefully help us gain more signatures.
· Don’t let this petition/campaign be forgotten.
If anyone would like to help with the petition or would like to share an idea with me? Please contact me via Instagram – clairebearmelmel.
Disclaimer – This is general advice. I am not a medical or a legal professional. My background is in Occupational Therapy, Care and Mental Health. I have suffered from Chronic Pain for many years and I was previously a carer for my mother who had a neurological disease (she also suffered from chronic pain). All cases will be different, therefore please take appropriate advice before proceeding.
References - Pain UK https://painuk.org/call-to-action/ & Action on Pain http://www.action-on-pain.co.uk/you-and-chronic-pain/about-chronic-pain/