alsAs many of you will know and have followed our story, my Daughter became ill over 4 years ago with ME. She is now diagnosed as Severe ME, Fibromyalgia plus other conditions. I am feeling Let Down Again, by medical professionals.
This morning when sorting out her morning medication, it suddenly hit me that we have been let down again. This should not be a surprise really. Also for you as I have written about this many times before.
When C first became ill we had a lovely (at first) Consultant who seemed to generally care about C. In the end he had no idea of how to treat ME. He kept telling C when he next sees her she will be running around and back to normal. On our last visit he had her in tears and she refused to see him again.
Our next Consultant was great and we only stopped seeing him as he retired. Unfortunately that hospital did not see children with ME.
We were put back under GP care, unfortunately our GP does not understand ME. The arguments that I have had with them are amazing. We took C for a regular opticians eye test last August. This resulted in us having to urgently take her to eye casualty. She had a mri the same day and turns out she had excess fluid around her brain and pressing on her optic nerve. This resulted in her having 2 lumbar punctures and finding a lovely Consultant who was shocked at the treatment we had received and that we were under no Consultant. She promised everything and would look at all services she could to get C the best treatment possible.
We felt finally someone was listening to us. We had an outpatients appointment to see her in November which was then cancelled and promised to be rebooked.
Medical Help in 2019
C was crying in pain with her head, I rang our Consultant but spoke to her secretary who passed the message on. My Consultant rang and told us to bring her into be checked for her fluid level around her brain. To go to A&E and they would send her straight to the ward.
We rushed her there checked in at A&E and had to sit in children’s A&E waiting to be seen, I told them we had to go straight to the ward but no we had to wait. This is with a child who due to her headaches has noise and light sensitivity. Finally after 2 hours we were seen and they phoned the ward and was told our Consultant was not there and we had to wait in A&E. Another 3 hours waiting and someone came to see her and agreed they could see pressure. Another person came and said it was fine and after 7 and a half hours we were sent home.
This has happened twice now, and we have still not seen our Consultant even though I have tried many times to see her. So fed up of being let down all the time.
We had enough
Finally, I contacted our MP, who we met and he was disgusted with the treatment we had received. He is aware of ME as he goes to the debates in parliament when he can. He contacted the CEO of our hospital while we were there and forwarded the reply for our response.
The hospital came back with a load of made up stories to which we responded with proof.
About two weeks later our Consultant phoned me and admitted she does not know about ME and what can be done to help C. She agreed to put the referral through for physio and after me stating it was just for muscle strengthening and not GET, she agreed to put this in the referral. We have her first appointment next week.
UCLH is our nearest hospital that deals with ME. Unfortunately they are not taking on any more referrals, other options are miles away with inpatient. This would mean us having to take time off work and find somewhere to stay while she was in hospital.
We are also under a Neurologist who is great, and has helped with new medication, we last saw him in April and I am trying to find out when our follow up appointment is.
What happens in the future
C is going to be 16 in November which means she will be under adult Consultants, I am hoping that this will mean she gets better support and treatment to the lack of what she has been receiving up until now.
Having a child with a chronic illness is hard and unless you are going through this as well, no one understands just how hard it is living everyday like this. But the medical professionals should be somewhere we can rely on to get the medical support needed.
C had her eyes checked a couple of weeks ago, and is really suffering again. I do not know what to do or where to go, as from where we are at the moment. No one cares or understands, or will give her the medical support needed. I am just praying it is not fluid build up and just a headache.
Sadly this is a common story and is nationwide not just my area. Surely this is something that has to stop and be addressed. Our children are missing out on so much they have lost their friends, schooling has gone because they are too ill, no social life. Come on medical professionals please help us.