I think I need to clarify my position on what I want to achieve by meeting with Dr Beadsworth and the team at Broadgreen.
I believe that the amount of time and tests that we have to go through in order to be diagnosed with ME should be the all the waiting that we have to do.
If you Dr diagnoses you with ME you should not have to wait a further 8/12 weeks in order to see the team at Broadgreen and have your treatment started .
What I mean by treatment is being assigned a occupational therapist who will order a home assessment should you need it as well as walking aids and of course the 6 months of treatment that they offer from Broadgreen.
If your Dr is not qualified to diagnose you with ME then you should be referred to Dr Beadsworths team at the Royal.
I may be wrong in saying this and correct me if I am , the team at Broadgreen are not meant to diagnose you with ME . They offer an introduction to ME and give demonstrations, refer you to occupational health.
My experience :
Timescales observed and all tests done in order to rule out any other illness .
Symptoms of ME ✔️
My Dr then referred me to What was Dr Millers team at The Royal .
They confirmed treatment and then referred me to Broadgreen which I waited 4/5 months possibly more for .
As I was Severe my treatment was the introduction to ME and then monthly phone calls . I was Severe , I was in agony , helpless and because I didn’t answer the call (because I was completely out of it )they discharged me from their service and referred me to occupational health .
We need a more streamlined system so that people who are in desperate need , receive help immediately.
No one should be left in pain and without proper care and medication, it’s 2018 .
I firmly believe that opening channels of communication between us , Dr Beadsworth and the team at Broadgreen will make a real difference not just to us but for people waiting desperately for answers.
A major improvement that needs to be made is the care that we receive.
Patient A should not get a care package that is different Patient B .
Who knows if we can reduce the waiting and diagnose people maybe it would reduce the severity that some of us have reached .
I know personally that all of the waiting , lack of diagnosis, pressure from work, being managed out of my job , incorrect medication , constantly being admitted to A&E because I couldn’t control my pain and the anxiety that comes from having your families life upside down certainly hadn’t helped me .
I want to hear your opinions.
What do you want to see changed ?
What do you think is being done right ?
What do you think about the amount of time you have had to wait to be diagnosed?