Our Thoughts On Today’s Announcement
We’re really disappointed that NICE have ignored the legitimate concerns of people who live with the harsh reality of chronic primary pain day in and day out. The guidelines will now drastically limit treatment options for patients, denying doctors and patients access to a full toolbox from which they can choose the right treatment for the individual. In doing so, NICE ignores that pain medication isn’t about allowing patients to be ‘pain free’, it’s about helping people reach a point where they can function in the day.
In limiting patients’ choices, NICE is going against its own drive towards shared decision making between patients and healthcare professionals.
Worse, by limiting long-term treatment for this physical pain to psychological support, NICE are making patients feel like the pain is in their heads, invalidating their experiences and making them feel like they are alone in their battle to control their pain and find the cause behind it.
In 2019 we at Chronically Awesome did some research around how chronic illness affects peoples lives. Almost 700 people took part, and some startling figures came out of that, including:
- 43% of respondents have not sought help for mental, emotional and/or psychological difficulties for fear of having physical symptoms wrongly labelled as psychological.
- 39% said they have been misdiagnosed as having depression and/or anxiety.
- 41% said they have experienced symptoms of post-traumatic stress disorder (PTSD) as a result of their illness and/or treatment.
Today’s announcement only alienates those who need to feel supported. We share the anger and fear of our community, and the very real concern that this might just be the first step on a path towards the withdrawal of pain medication for more patients.
What You Can Do
We don’t have a huge number of options left open to us. But you can still write to your MP, your CCG and your NHS Trust.
Raising our concerns with those in power is vital if we are to stop these proposals coming into effect. You can do this by writing to your MP, and the heads of your local NHS Trust and Clinical Commissioning Group (CCG). You may also wish to write to one or more of the chairs of relevant All Party Parliamentary Groups (APPGs), details of which can be found below.
To assist you in writing to MPs, Trusts and CCGs, we’ve created a series of templates that you can use as they are or edit as you see fit before sending.
You can find your local CCG here.
There is a list of NHS Trusts here.
APPG on Endometriosis: Sir David Amess MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 3452. Email: amessd@parliament.uk.
APPG on Health: Dr Lisa Cameron MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 6855. Email: lisa.cameron.mp@parliament.uk.
APPG on Medicines and Medical Devices: Chris Green MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 8685. Email: chris.green.mp@parliament.uk.
APPG on Mental Health: Jeff Smith MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 5878. Email: jeff.smith.mp@parliament.uk.
APPG on Personalised Medicine: Sir David Amess MP, House of Commons, London, SW1A 0AA. Tel: 020 7219 3452. Email: amessd@parliament.uk.
