The Removal of Opioid's from Sensible Chronic pain sufferers.

[Bodstar11]

My Letter to British Pain Society.

Mr Bhaskar. I read with intent your articles on Opioid analgesics. Firstly may I add. I am currently in the process of starting legal action against the MHRA and their guidance published a few months ago regards to the prescribing of these particular. As a carer who has seen my Mother and Father have these drugs removed from them and their repeat prescriptions in the last few months. My Mother and Father both have chronic debilitating illnesses.They will not improve. My, and others (Change.Org) believe that this is a travesty of justice. I speak for more than myself. The problem is not with the Opioid analgesics. The problem is with who is taking them, how much they are taking, and why. Our GPS wanted too keep them on Co Codamol however, they say their hands are tied. This is wrong. My parents, along with thousands of the nation, are being automatically switched to Gabapentin or Tricyclic anti-depressant the majority (Without) consultation. I always notice scaremongering factors before these articles and comments are made. Task forces sent out. The National office of Statistics and so on. Patients on 6/8 Co Codamol tablets are not going to overdose and die. To believe this is nonsense. My parents who are almost 80 years old are NOT getting the pain relief they did when prescribed Co Codamol and Tramadol. Opioid have been used since the 19th century for pain so I contest the argument too which is circulating that "they don't really work". If dependency in chronic pain, which will blight them for life develops, then I'm content the benefit outweighs the risk.

We cannot all afford the amount of money which your facility deems necessary for treatments and prescribing of medicines. This is why GPs/Specialists in the NHS are the majorities first port of call. I cannot instruct you what to say in your beliefs however, I would ask you to take the time to look at thousands of the British public in similar circumstances as my parents. And the last 7 months has not been easy regards to the switch in medication. So please think of the bigger picture. Fully informed patients who have been successfully treated with Opioid analgesics are being caught in the middle (again) to, safe to say, abusers of this group of medicines.

[Madlegs1]

Good for you. Wishing you success. Tashi.

[Bodstar11 in reply to Madlegs1]

Thank you very much for your reply and endorsement.

[Bodstar11]

Any Further Help from Patients or Carers with the same opinion and may wish to help, would be appreciated.

[Hidden]

It's great of you to do this and I hope you have success in your legal battle.

Can you let me know more please e.g. have you any links to the article you refer to?

Do you know what exactly the MHRA have said. Any links to that?

I have briefly read the MHRA advice and it seems to me that the way the advice is being implemented in your parents case may not be consistent with what the advice actually says!

I partiularly recall that the recommendations made by the Opioid Expert Working Group of the Commission on Human Medicines initially stated that opioids weren't recommended for "primary" chronic pain. I don't know if that was extended to all forms of chronic pain.

If not, then it may be that your parents doctor has put their own interpretation on the advice.

[BBMBRB in reply to Hidden]

I've just sent a link to the NICE guidance added herenice.org.uk/advice/ktt21/ch...

[Hidden in reply to BBMBRB]

Thanks.

Personally, I don't disgaree with the MHRA reccomendations or the NICE guidelines.

It's how they are apparently being implemented which is the problem.

I can't say, but it does appear as if your parents opioids were stopped without any discussion with them, without offering other support and without their consent.

I may have missed it, but I can't find anything in the guidelines saying that opioids should automatically be stopped.

The assessment guide (your parents should have had an assessment before changing medication) differentiates between "primary" an "secondary" pain. What is there's classed as?

It's worth following up some of the links in the NICE guidelines e.g. the concept of "shared decision making" is mentioned several times. This means that the doctor and patient should have a detailed discussion following which BOTH agree on a decision about treatment options.

Note that Professional codes of practice recommend a shared decision-making approach to care, including those of the General Medical Council, General Pharmaceutical Council and Nursing and Midwifery Council.

Please particularly note the GMC ethical guidance on Shared decsison making and consent, published last year. Please also not that "consent" also means that all relevant information has been given to your parents, in a form they can understand AND it has been checked that they have understood.

Also note that it is up to the patient to decide what information they want, not up to the health p[rofessiuonbal to filter it to what they think.

Contravening the ethical code is acting unprofessionally.

A care plan should be agreed and your parents should have access to that plan.

Their plan would seem to need to include physical and psychological therapies to support them. Were they?

I AM VERY MUCH ON YOUR SIDE and fighting my own legal and ethical battles with my local trust.

However, I think you have to pick your battles and pick who it's best to pick them with.

Note the following from the NICE guidance on shared decision making.

" Options for local implementation:

Encourage and support a shared decision-making approach to care. Visible organisational buy-in and support are essential for this to succeed. Individual healthcare professionals need support and training to incorporate and develop shared decision making in their practice.

Consider patient empowerment, activation and preparation campaigns, such as the Ask 3 Questions or Choosing Wisely campaigns, to explain what shared decision making involves, why it might help, and provide interventions such as question prompt lists"

nice.org.uk/advice/ktt23/ch...

The MHRA recommendations will be based on evidence, which makes them hard to dispute, so I hope you are seeking legal advice to see if there's any point to taking possibly expensive legal action against them in particular.

I very much suspect for the reasons I've given, that things have been improperly implemented in your parent's case. There are various options for you, depending on who exactly is responsible for failing to comply with the various guidelines.

I'd like your efforts to succeed.

Best wishes

[Bodstar11 in reply to Hidden]

Yes Manerva, I have lots of PDFS from various bodies MHRA included. Our local Library is closed so I am awaiting on a printer being delivered. The Library was the only accessible point that has printing get facilities. I will highlight the points that I contest in the guidance and up to date publications. Kind regards.

[Hidden]

PS.

I note the reports emphasise the "dependency", "withdrawal" and adverse "side" effects of opioids and the harm they can cause whilst the dopamine agonists aren't even controlled!

[Hidden]

Another PS

I don't know if things have changed in the last 8 months, but you might find this link helpful

healthunlocked.com/rlsuk/po....

[Jumpey]

Power to you.And solidarity.X

[Hidden]

Bravo!

[WideBody]

You have my support from America.

[BBMBRB]

As a pharmacist in the NHS I am surprised that a GP would withdraw these drugs from patients who have been on them long term for a specific reason.Here is the link to the NICE guidance which I don't think your parents doctor has understood correctly.

I hope this helps.

nice.org.uk/advice/ktt21/ch...

[Bodstar11 in reply to BBMBRB]

Good morning. Thank you for your time in replying. I must say as you are a Pharmacist, I am surprised you haven't experienced the swift switch of patients being taken off Opioid medication and being placed on non-Opioid medication. Really?. The Gabapentin and Pregalin manufacturers must be doing a rip roaring trade now along with Tricyclic antidepressant manufacturers not too add, Non Steroidal Anti inflammatory drug manufacturers. Please don't take that previous comments as sarcasm because it most definitely is not. And yes, they are being stopped abruptly in some cases and some with reduced amounts over repeat prescription time lapses. Kind regards.

[BBMBRB]

Here is another helpful guideline which talks about not using opiods in primary chronic pain that is pain with no clear underlying cause.I do think some doctors are misunderstanding this

nice.org.uk/guidance/NG193

[Hidden in reply to BBMBRB]

I agree with you.

[Hidden in reply to BBMBRB]

Thanks for the link, an interesting link.

Firstly, noted that the NICE guidance, like most NICE guidance is NOT mandatory.

Also that for people already taking medicines not thought to be helpful the recommendations do NOT say that they should automatically be stopped. (Section 1:2:11).

Also section 1:2:10 lists ALL the medicines that it is recommended should not be initiated which includes Gabapentinoids and NSAIDS.

I just hope that doctors don't start confusing the prescription of gabapentinoids for RLS with the prescription of them for chronic pain.

[BBMBRB in reply to Hidden]

It's only NICE technical appraisals ( usually for a specific drug) whixh are mandatory NICE guidelines are not.

[Hidden in reply to BBMBRB]

Exactly, which is my point really.

Even if the guidance said "stop opioids", doctors aren't compelled to do it.

[BBMBRB in reply to Hidden]

Absolutely and they should look at each patient individually and come to a joint decision based on the evidence

[Bodstar11 in reply to BBMBRB]

Thank you for your reply to my original post. This, in what you have stated, is the Crux of my argument and what I believe should be happening. Not mass removal and switching of drugs from Opiate to goodness knows what alternative. And it is happening without consultation and assessment in a large number of cases. Kind regards.

[wildlegs]

You only wish your doctor could feel your plain for awhile. I’ve been taking Tramodol for 10 + years and it really really helps. I’ve recently moved from Florida to Wisconsin and my new doctor wants me to cut back on the mgs I presently take ( from 200mg to 150 mg) . It may be okay but if it works why mess it up?

[Hidden in reply to wildlegs]

Quite right, if it's not broken, why try to mend it?

[Bodstar11 in reply to wildlegs]

I may be jumping the gun here to coin a phrase however, I would check with your GPS that their intention is not to wean them off you entirely hence the reduction in dosage. I don't want too alarm but this may be the soul aim. Kind regards and wishes for better health and wellbeing.