Stop the Cruel Changes to Chronic Pain NICE Guidelines

Stop the Cruel Changes to Chronic Pain NICE Guidelines

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Claire Swain started this petition to National Institute for Health and Care Excellence and

Please Help us to Fight the Cruel Changes to National Institute for Health and Care Excellence (NICE) Chronic Pain Guidelines.

This is the homepage of the Campaign, please sign this petition to keep up to date with the latest updates.

We now have a UK Government and Parliament Petition - Commission NICE to Review Guidelines on Chronic Pain. We need 100,000 signatures for the Campaign to be debated in Parliament.

https://petition.parliament.uk/petitions/596304 

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).

Numerous vital Pain relief and management treatments are no longer approved by NICE guidelines. The British Medical Journal (2021) state that Pain Management Specialist have raised concerns about NICE’S Chronic Pain Guidelines. They say the Guidelines does not reflect clinical practice or current evidence.

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. We have now sent a request to the Information Commissioner and they have accepted our case.

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 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.

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 diamonds!

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/

https://www.rethink.org/advice-and-information/rights-restrictions/rights-and-restrictions/nhs-treatment-your-rights/

References

Equality and Human Rights Commission (2014)- https://www.equalityhumanrights.com/sites/default/files/human_rights_human_lives_a_guide_for_public_authorities.pdf

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-standards

British Medical Journal (2021) BMJ 2021; 373 doi: https://doi.org/10.1136/bmj.n942 (Published 09 April 2021)

Guardian (2021) - https://www.theguardian.com/commentisfree/2021/apr/09/painkillers-cruel-health-policy-nice-guidelines

 

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.

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At 50,000 signatures, this petition becomes one of the top signed on Change.org!