NICE have provided an Official Response!

Good afternoon,

I have received an email from Helen Finn (Senior Communications Manager at NICE). I appreciate Helen's apology. However, the majority of the content is what we already know. (Please see below) I am now planning my response. I have no intention of closing the petition after the publication date; if the proposed changes are made. I will continue fighting this but I will need the community's support. 

Best wishes,

Claire xx

Dear Claire

 

Please accept my apologies for our lack of response to your emails. I have looked back at our records and it looks as though this was due to a miscommunication in my team about who was responding to you. I’m very sorry for our mistake.

 

Thank you for drawing our attention to this petition, it is clear what an important issue this is for you and many others so I hope the following information is helpful.

 

I would like to reassure you that the guideline committee, which includes people with chronic pain, have the health and wellbeing of people with the condition at the forefront of their mind when they are reviewing the evidence and drafting recommendations.

 

The main focus of treatment regimens in the guideline are for chronic primary pain. This is pain that cannot be accounted for by a specific diagnosis - it is not the symptom of an underlying condition - and it persists or recurs for longer than 3 months. It is therefore pain with no known cause. It excludes pain related to confirmed diagnoses; for example endometriosis or arthritis.

 

The draft guideline recommends that paracetamol, non-steroidal anti-inflammatory drugs (these include aspirin and ibuprofen), benzodiazepines or opioids should not be offered to people with chronic primary pain.

 

We are aware that making recommendations about not using certain drugs or other treatments can be distressing for people already using those drugs. The draft guideline acknowledges this and recommends that clinicians discuss the risks and benefits of a treatment with the person with chronic primary pain and states the need to come to a shared decision about the continued use of drugs associated with safety concerns.

 

The draft guideline also acknowledges the need for further research across the range of possible treatment options, reflecting both the lack of evidence in this area and the need to provide further choice for people with the condition.

 

Anyone who is concerned about their chronic pain management should seek advice from their doctor, who will use their clinical judgement to assess whether the pain is likely to be a symptom of an underlying condition, or a disease in itself.

 

The consultation period is a very important stage of guideline development. The guideline committee have been reviewing stakeholder comments carefully and if there are areas of the guideline where feedback from stakeholders suggests a lack of clarity then we will endeavour to make it clear in the final published guideline. We currently expect to publish the final guideline on 20 January 2021.

 

It is also important to note that once the final guideline is published, NHS professionals and practitioners will be expected to take the guideline fully into account while using their professional judgement. However, they should also consider the individual needs, preferences and values of their patients or the people using their service. It will not be mandatory for the NHS to apply the recommendations in our final guideline, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian (where appropriate). 

 

For your information, NICE has published another guideline on neuropathic pain in adults: pharmacological management in non-specialist settings that might also be relevant to your circumstances, based on the text of your petition.

 

Once again, I am sorry for the delay in replying to you. I hope I have provided some clarification about this guideline.

 

Best wishes

 

Helen

 

Helen Finn

Senior communications manager (enquiries)

National Institute for Health and Care Excellence

Level 1A, City Tower | Piccadilly Plaza | Manchester | M1 4BT | United Kingdom

Tel: 44 (0)300 323 0141

Web: http://nice.org.uk