In January of this year I started to get a terrible headache. It never got any better and just made me feel so sick and drained. I then started to get pains in my legs and found walking terribly difficult for a while, it suddenly improved only to be replaced with back pain. Eventually the headache and pains throughout my body became so bad I had to give into them.
To this day the pains are still there EVERYDAY. I wake up with agonising back pain, as my feet touch the floor they hurt. My legs, hands, back, neck, knees, ankles, fingers, toes and shoulders hurt each and everyday. I have very little control over what comes out of my mouth as the words at times are jumbled and I stutter. My short term memory is horrific at times and I still have a headache. My sight changes from reasonably good to blurry, I find driving an issue because of the sight and my cognitive functions are not great. My sleep is disrupted to such a degree I can spend a week at a time with only getting 2 hours sleep a night. i have been on a combination of medications, some of which have side effects I have to manage on top of the pain and cognitive issues. I have tried various types of medication, both pain killers and antidepressants. I have been resisting the recommendation to go on Morphine as I know this has sever side effects and is very addictive. I do not need any other added complications such as addiction to deal with so I have refused, but I am getting to the stage where the advantages of Morphine out weigh the side effects. Currently I am on a mound of medication, which I have to set alarms for on my phone as I forget to take them due to the short term memory lose I have.
My Doctor is fully aware of the issues and has been a massive help. I have been diagnosed with ME otherwise known as Chronic Fatigue Syndrome. I was hoping that once a diagnosis was provided more long term help and health care would kick into place.
I have been referred to a pain management clinic, which has been discussed with my GP for over 3 months. She was unable to refer me until the Rheumatologist and the Neurologist had written to her. My appointments for these two were back in July. She received the letters in late September. I was over the moon when my doctor told me she was able to make the referral and in a few days I would be able to collect my "choose and book" paperwork, call the telephone numbers and make my first appointment. I had been waiting for so long and so much hope has been heaped upon the involvement of the pain management clinic.
I sat down and called the telephone number. After several attempts I got through and spoke with a lovely lady who took my details and said "yep, someone with give you a call to let you know when your appointment is" I was shocked. I asked what was happening and in a nutshell this is what is going to happen:
Now my referral has been received it will go through the triage process and someone will decide what treatment I need. This is without any communication from me. They will make choices about what I need based on the referral from my GP. At no time will they enter into a discussion with me or ask me any questions to gain a fuller understanding of how these symptoms effect me both physically and mentally.
Once they have decided what treatment I need I will then be contacted and told when and where I am to go.
It will take up to 2 weeks for my referral to go through the triage process!
It will take up to 12 weeks for my first appointment!
THAT IS OVER 3 MONTHS JUST TO BE SEEN FOR A FIRST APPOINTMENT!!!!!
All the time this is going on I am unable to work. After going to an occupational health review it has been recommended I do not return to work until after I have had several pain management clinic appointments and start to see some kind of benefit from them. Even when I am ready to go back to work it has been recommended I only start on a few hours a week and it could take up to 6 months for me to get back into full time work.
The reason why I am going on about this is simple. My life has become distorted with pain, frustration and a haze of cognitive inabilities. This has been going on for 10 months and the GP has been aware of it for the last 8 months. The referrals to the Rheumatologist and Neurologists took forever. The formal diagnosis kick started the referral to pain management. Now, after jumping through these hoops my treatment will be decided on by someone who has never met me and is based solely on what has been written by my GP and I have to wait another 3 months!
Potentially 13 months after this all started I get my first appointment to help me deal with what I go through each day.
It is hard enough holding myself together each day without the added stress of treatment being dangled like a carrot, only for me to have to jump through another hoop.
In the meantime I take a mound of medication, which does not stop the pain, but does ease it a little. I have tried several different types of pain medication, with various doses and concoctions.
The NHS is NOT free, we all pay towards the it. I am confused and feel down beaten by the numerous different procedures and policies. It is as if every obstacle is being put in my way to determine my need for treatment.
As each day goes by I feel less and less human, and more and more like a weirdo. My mental health and ability to endure these processes enforced upon me by the NHS is deteriorating. While I try my level best to keep a lid on my frustrations and disappointments, each time they have a negative impact on my health.
I do not understand why all of these procedures are there. I do not understand why it would take 13 months to treat someone. I can not comprehend that someone who has never met me or carried out an assessment will decide what is best for me.
In addition to this ongoing treadmill of attempting to get treatment, I am not working as I am unable to. I only receive SSP (statutory sick pay). That will last for 26 weeks. Once the 26 weeks are up, and it will be before I am able to go to work, I will get no payments at all unless I go through the process of making unemployment claims. Also, I am able to apply for PIP which replaces the old Disability Living Allowance. I have completed the forms, but guess what? It takes 26 WEEKS OR LONGER to be processed and there is no guarantee at the end of that time I will be able to get any help.
I have worked all my life and paid into the system. While that is a fact, I am not expecting to suddenly be inundated with the government saying, yep have this payment, or treatment, let me blow your nose and wipe your arse for you. However, I do expect for treatments and benefits to be processed in due time and for the red tape not to be used as a barrier to receiving help. I think it is so unrealistic that these things can take so long. If this were a service provided by a private provider it would not be tolerated at all. Can you imagine making a dental appointment, or ordering a new mobile phone only to be told it will be 26 weeks!
I know I am ranting, but I am so frustrated with the system. How the hell can I move forward and try and get myself better with all this going on?
Through ill health, which I have had no control over I am suffering because of the system currently being utilised by the government and the NHS. This really needs to be addressed and shaken up.
On a positive note, when I have been able to see a health care provider, such as the Rheumatologist, Neurologist and my Doctor, they have all been wonderful. This is not about the individuals providing the treatment. This is about the process and policies in place that make every step of a difficult journey even more difficult.
My blog is for me to let off steam in a positive way. I am sorry that this has become a rant. I just need to get it out of my system, paint the smile back on my face and pretend I am coping.