Leeds disabled activist campaigning against proposed changes to chronic pain treatment

A disabled activist  from Leeds who suffers from a  chronic pain condition is campaigning against major changes to the way patients like them are treated.

By Mark Lavery
Monday, 7th September 2020, 6:00 am
Saba Mir
Saba Mir

Saba Mir, 28, of Woodhouse - who is non-binary - has suffered from ME for two years and is in severe and constant pain for which they are prescribed opioid painkillers co-codamol by their GP.

Saba said NICE, the National Institute for Health and Care Excellence, which governs how the NHS provides care and treatment in England and Wales, is proposing an overhaul of chronic pain treatment.

Saba said proposals put forward in the NICE Chronic Pain Guideline mean that people suffering from their condition and other chronic pain conditions in future will no longer be prescribed opioid painkillers along with around ten other medications.

Saba said NICE proposals are for the opioids to be replaced with offers of cognitive behavioural therapy, acupuncture, antidepressants and acceptance therapy.

They were studying for a masters degree in gender studies at Leeds University in 2018 when they fell ill with ME - also known as Chronic Fatigue Syndrome.

Saba has lost a lot of mobility in her arms and legs, struggles to walk and has to use a wheelchair.

Saba said they are in severe and constant pain and need daily doses of co-codamol to be able to function.

Saba said: "GPs don't prescribe opioids to anyone, it is a very controlled and measured process.

"This proposal would have a huge detrimental effect on the wellbeing of people who have a chronic pain diagnosis

"Having chronic pain is an awful thing to go through. Without the medication I would be in debilitating pain constantly. I wouldn't be able to function.

"Even when I take my painkillers I don't have full pain relief. Without them I wouldn't be able to function or walk properly.

"I wouldn't be able to speak because of the debilitating pain it causes."

Saba added: "This affects tens of thousands of disabled people that live in the UK, and will approximately affect one in four patients going forward in the future.

"This can affect anyone needing treatment whether you are disabled or not."

A spokesman for NICE, said: "The recommendations for drug and other treatments in our draft guideline on chronic pain are for people with chronic primary pain.

" Chronic primary pain represents chronic pain as a condition in itself and which can’t be accounted for by another diagnosis or where it is not the symptom of an underlying condition (this is known as chronic secondary pain).

" It is characterised by significant emotional distress and functional disability. Examples include chronic widespread pain and chronic musculoskeletal pain, as well as conditions such as chronic pelvic pain. People with ME would not be covered under these recommendations."