Hello all,
The following information is also available as a downloadable document. Please use the following information when contacting your local MP or people of influence. Let's fight this together - There is Power in Numbers!
(Please Only Edit where Necessary)
Cover Letter
Dear YOUR MP,
RE: Please Help us to Stop the Cruel Changes to NICE Chronic Pain Guidelines.
I would like to request an appointment with you at your earliest convenience please (with disabled access). I understand you are busy and receive a large amount of correspondence. However, I would like to add further information and facts to my last letter in the hope you will pass my letter to ‘The Department of Health and Social Care’ (Government Department). After Speaking to the Parliamentary and Health Service Ombudsman, I have been advised that NICE do not have a regulatory body, but they are overseen by the Department of Health and Social Care. Therefore, the Ombudsman explained our concerns of distress should be sent to the department via our local MP.
Numerous vital Pain relief and management treatments are no longer approved by NICE guidelines.
Please see attached detailed document and review the following facts.
Over 36,000 thousand people have signed our petition and expressed the severe distress they are experiencing since the changes have been made.
The Faculty of Pain Medicine (2021) state the changes will risk those who are diagnosed with Chronic Pain that subsequently develop Secondary pain will not be recognised or treated appropriately.There is also a risk that Pain management programmes and effective pain relief medication will be removed and severely reduce quality of life. In addition, Dr Rajesh Munglani who is a consultant in pain medicine at Royal Papworth Hospital and is a council member of the British Pain Society states That many chronic pain patients rely on such drugs to achieve any quality of life. I know chronic pain is torture and dominates every moment of the day (Guardian, 2021). We have reviewed the evidence that NICE has made available to the public and found that numerous outcomes for secondary interventions for medicine and other treatments have been withheld (NICE, 2021a). We have made a Freedom of Information Act request for this information and any additional research studies that may have been used to form the basis of their decision. However, NICE has declined both the initial request and internal appeal. The Information Commissioner has accepted our case to investigate The Freedom of Information Act Request.
The Faculty of Pain Medicine (2021) state that they have significant concerns regarding the evidence base supporting the NEW Chronic Pain guidelines. They explain that pain is a field in which choice of analysis of data can significantly affect outcomes. They respectfully point out that highly relevant Cochrane reviews regarding pharmacological, psychological, manual therapy, exercise, acupuncture, electrical physical modalities and pain management programmes have been excluded. They note that this has also been highlighted in stakeholder feedback from the Cochrane Pain, Palliative and Support Care (PaPaS) Review Group published in September 2020. This document clearly lays out the difficulties and challenges regarding interpreting results in pain research as well as how to mitigate them. This is an area that requires further deliberation to avoid patient populations that may gain benefit from interventions from being disadvantaged as well as avoiding interventions in those that will not benefit. They also note that several patient groups have also expressed similar concern.
The new NICE guidelines for chronic pain conflict with existing legislation and guidance from other specialist organisations. For example, Article Three of the Humans Rights Act (Equality and Human Rights Commission, 2014) prohibits inhuman and degrading treatment. If caregivers (someone who is providing 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.
I hope you will consider helping us,
I look forward to hearing from you soon,
Best wishes
Your name
Include your full name and address.
References
Faculty of Pain Medicine (2021) - https://fpm.ac.uk/fpm-concerns-regarding-new-nice-chronic�pain-guidelines
Guardian (2021) - https://www.theguardian.com/commentisfree/2021/apr/09/painkillers-cruel�health-policy-nice-guidelines
NICE (2021a) - https://www.nice.org.uk/guidance/ng193/evidence
Faulty of Pain Medicine (2021) - https://fpm.ac.uk/standards-guidelines/core-standards
Equality and Human Rights Commission (2014)-
https://www.equalityhumanrights.com/sites/default/files/human_rights_human_lives_a_guide_f
or_public_authorities.pdf
Stop the Cruel Changes to Chronic Pain NICE Guidelines (2021) - www.change.org/stopchronicpain
Additional References in attached documents.
Paper Protest
Dear MP
RE: Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines.
For a moment, please imagine you are in so much pain that all you can do is curl up in a ball for hours. You are crying and wishing for it all to go away. Then a health or medical professional says, “You will be alright after you do some Exercise and some Acceptance Therapy”.
How would that make you feel? For many of us that is our new reality.
The Department of Health recognises chronic pain both as a long-term condition in its own right and as a component of other long-term conditions. Across the UK there are currently 14 million people living with chronic pain (PainUK,2020). Yet, the fight to get timely and effective treatment for 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 continues to be one of the most under funded services within the NHS. Despite the huge amounts of money that have been poured into the NHS by the present government the provision of specialised pain services continues to diminish as local service commissioners fail to see them as a priority (Action on Pain,2021).
NICE updated their guidance for the management of chronic pain on 7 April 2021. The changes that they implemented (despite widespread opposition from patients) is devastating. NICE (2021) no
longer recommends Bio Feedback, Tens, Ultrasound Therapy, Interferential therapy, Opioids, Non�steroidal anti-inflammatory drugs, Benzodiazepines, Anti-epileptic drugs including, gabapentinoids, Local anesthetics by any route, Local anesthetic/corticosteroid combinations, Paracetamol, Ketamine, Corticosteroids, Manual therapy and more. The removal of these treatments is causing
people who live with chronic pain severe distress and desperate consequences as they have provided us with a quality of life. The only treatments that NICE now approve are CBT, Acceptance Therapy, Acupuncture, Exercise and Antidepressants. We are not saying that the treatments are not
helpful, but they are insufficient on their own to allow people a quality of life and the decision to deny effective pain relief is inhumane and unethical. Our understanding is that NICE guidelines are binding on medical professionals, so there is limited scope (if any) for doctors and other medical
professionals to depart from the guidelines even if they disagree with them. It is not putting it too highly to say that this change will lead to the deaths of some chronic pain patients by suicide.
We have reviewed the evidence that NICE has made available to the public and found that numerous outcomes for secondary interventions for medicine and other treatments have been withheld (NICE, 2021a). We have made a Freedom of Information Act request for this information and any additional research studies that may have been used to form the basis of their decision. However, NICE has declined both the initial request and internal appeal. The Information Commissioner has accepted our case to investigate The Freedom of Information Act Request.
The only saving grace is that NICE is allowing current chronic pain patients to keep their current pain medication. Yet, this will be cruelly problematic when current pain patients need further medication and treatment. In addition, the current guidelines provide another tool for Medical Gaslighting which many of us experience and this adds further trauma. (Medical News Today (2020) states that medical gaslighting occurs when a medical or health professional dismisses or trivialises a person’s health concerns based on the assumption, they are mentally ill. For example, they may tell the person their symptoms are “in their head”).
For many of us with chronic pain there is no cure, yet effective pain relief (such as those medications that are no longer approved by NICE) can be the difference between having a quality of life and being bed bound. There appears to be such a negative stigma attached to chronic pain patients. We are not saying that addiction does not happen but (a) this is rare; and (b) addiction happens in other patient groups, yet we are the ones who are mostly targeted. We require pain relief medications or treatments to function not to get a ‘high’.
The new NICE guidelines for chronic pain conflict with existing legislation and guidance from other specialist organisations. For example, Article Three of the Humans Rights Act (Equality and Human Rights Commission, 2014) prohibits inhuman and degrading treatment. If caregivers (someone who is providing 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. In addition, The Core Standard for Pain Management Services in the UK have designed a framework for standard setting in the provision of Pain Management Services for Healthcare professionals, commissioners and other stakeholders to optimise the care of our patients (Faulty of Pain Medicine, 2021). They state “There must be a cooperation between primary care, secondary and local authorities to deliver effective integrated services for people with chronic pain. This will include pain management and other treatment such as medicines and injections.” The British Medical Association (2017) say it perfectly that Chronic pain is a complex condition, which has a substantial impact on the lives of those affected. The relief of pain should be seen as a clinical priority. Yet, NICE appears to haved is regarded all of this, and the real-life consequence are, and will continue to be, brutal. We are unable to attend an in-person protest due to our symptoms. Therefore, we have an online petition and campaign. The petition is currently on 36, 146 signatures and it continues to grow (Stop the Cruel Changes to Chronic Pain NICE Guidelines, 2021). However, we need help to get our voices heard and to stop this cruelty. One of the most ironic consequences of oppressing the disabled/chronic pain patients is that we have limited energy to fight oppression. Many of us use all of the energy we have completing basic personal care and household tasks and simply do not have the capacity to engage fully in this battle. We need the support of our abled bodied allies.
Please would you consider helping us by doing any of the following?
• Contacting NICE on our behalf and possibly have an appointment to discuss the issues stated above.
• Discuss the above concerns in the Houses of Parliament, where it will be officially recorded, and potentially come to the attention of the press and public.
• Pledge your support to our campaign or write to the local media on our behalf.
Thank you for your time,
Yours Sincerely
Include your full name and address.
References
Stop the Cruel Changes to Chronic Pain NICE Guidelines (2021) - www.change.org/stopchronicpain
Equality and Human Rights Commission (2014)-
Medical News Today (2020) - https://www.medicalnewstoday.com/articles/gaslighting#summary
Pain UK (2020) - https://painuk.org/call-to-action/Action on Pain (2021) - http://www.action-on-pain.co.uk/
British Medical Association (2017) - https://www.bma.org.uk/what-we-do/population�health/prescription-and-illicit-drugs/chronic-pain-supporting-safer-prescribing-of-analgesics
NICE (2021a) - https://www.nice.org.uk/guidance/ng193/evidence
NICE (2021) -https://www.nice.org.uk/guidance/ng193
Faulty of Pain Medicine (2021) - https://fpm.ac.uk/standards-guidelines/core-standar