Write an open letter
Would you like to write an anonymous letter to your GP, ME/CFS Specialist Service, or Social Care provider? How about telling them exactly what you feel about the treatment you have received and the kind of changes you think would made a positive difference? Your letter might convey gratitude at the good level of service you received, or it might not…
What we are proposing is that you write an anonymous open letter that is not meant to be sent, and we will share all those we receive in blogs next week. They’ll also form part of the Health & Social Care report we will be publishing in the near future. We think it’s a good idea to tell HCPs exactly what you want without feeling you might have crossed a line that could jeopardise future relationships.
Hopefully, it will be an exercise that can help to express your gratitude or to get things off your chest while productively suggesting changes that might be made to health and social care that could improve these vital relationships.
Your open letters can be sent to: Feedback@meassociation.org.uk Please title your email: Health & Social Care Letter. We will not publish your name or the name of any HCP.
The following was written by someone with ME/CFS whose partner is a GP:
Dear GPs,
Although I am not one of you, I have some idea of your struggle. I have seen countless times my beloved partner come home exhausted from his practice disheartened after cleaning up clinical administrative messes he did not create or spending three extra hours at work because someone needed him. I know it isn't easy for you.
Yet, please remember that it isn't easy being a patient either. The journey to the doctors' room is much longer than the walk from the waiting room.
I know that some people: put on a brave face for too long because they're afraid of the doctor thinking they're a timewaster, are in such physical pain that every step feels like a marathon, have to face their own pressures from work for having to have an appointment in work hours, are single parents to several children under school age who all need watching or dragging along, or are trapped in prisons created by their own minds against their will.
I am sorry that you are running behind, I am sad that you are overstretched and underfunded, I am thankful that you stay late and sometimes sacrifice your own family’s needs for my own.
But please remember that this is not my fault. When you are exasperated at a patient with a seemingly trivial issue, remember that they are not medically trained and could have been worrying about it for days or weeks.
When you see someone suffering from a mental health crisis, remember that your body language says much more than your mouth, and if you act uninterested or eager to get them out the door, or if you won't stop typing their words for long enough to actually acknowledge the pain behind them, you are making them feel much worse.
When you see the chronic illness sufferer who has come in with several issues, please remember how hard it was for them to get there in the first place and don't snap at them that it is, “One appointment, one problem!” You have ten minutes allotted and your patient deserves that ten minutes even if you are running behind.
You are the gatekeepers of the NHS. Without you, we cannot access more specialised healthcare that we might really need. Please remember how powerful this makes you, and how much potential damage you may do to someone's quality of life by failing to listen properly.
Don't subconsciously label things as trivial or psychosomatic until you've truly listened. Just because something won't necessarily kill us doesn't mean it doesn't have a massive impact. And even if you can't cure it, we need it to be taken seriously – even if that's all you can do.
GPs, I am so thankful for you, and to you. Please remember that I am a person too.
MEAW21 Media Toolkit
We have a free range of posters and graphics you might like to download and use for ME Awareness Week and in the months ahead. We also have video you can watch and share.
You might also like to review the blogs we have been publishing this week all centred around Health & Social Care and the imminent publication of the vital new NICE Clinical Guideline for ME/CFS.
