Following on with ME Awareness Week, today I am going to talk about medical support. I will be talking about our personal experiences, but unfortunately this is nationwide.
ME is very hard to get a diagnosis for, which is understandable. Usually after 3 months of getting no better and various tests have been carried out you will get a diagnosis of ME/CFS.
You will find that you have a feeling of relief that you know what is wrong with you, and also what you are facing. On the other hand the fear of what the future will bring, and recovery.
We started our journey under a lovely Paediatric Consultant. Unfortunately he did not understand or know about ME, or other symptoms surrounding the illness. We used to see him every 3-6 months and during that time I could ring and speak to his secretary.
At our appointments he would say to C, you will be feeling much better next time and will be running around outside playing games. This was to a child who was at the time 11 and needed support as her legs would give way. I know he was trying to help, but the lack of understanding and saying these things made it worse. On our last appointment to him C was in agony with her head and in a wheelchair as her legs were too weak. He sat there and said he can not do anything else for her and she had gained weight, she had not. C crumbled put her head on my shoulder and cried her heart out, refusing to even look at him again.
I do not know how, but I managed to stay calm. While I politely pointed out her medication and her illness has yes made her weight go up slightly. But she was not overweight. C refused to see him again, and we backed her in that descision.
This hospital has a big peadiatric ME department, and we were very relieved when we got an appointment here. The journey was horrendous as we had to take train, tube and taxi. It literally floored C. We were there for a very long time and the appointment was very tiring. At the end they agreed C had severe ME. We had a few follow up telephone appointments but they just stopped and we were forgotten about.
I asked my GP to refer me to another Consultant, his name kept coming up in the ME community. Parents from all over the country travelled to see him privately. And he practiced from one of our local hospitals and we were very lucky to get an appointment with him. He was amazing and the first person to talk to C and listen to her. He diagnosed Severe ME and Fibromyalgia. We came away full of hope with a list of supplements and medication.
Unfortunately, we only saw him once more as he retired, and is now only doing private appointments with adults. This changed in November last year where we arranged to see in privately as C is now 16
On our own
This led us with no one apart from our GP, who I have had many rows with as they do not understand ME. They also do not know of any children who have ME.
I rarely take C to our GP now as it is too much stress on her to then be told they can not do anything. Or will not prescribe anything without a Consultants agreement. Which is hard when you do not have one.
I once called out our GP to do a home visit, as C was very bad and also having problems with her breathing. The GP rang and asked questions saying she is just seeing if she needs to do the home visit. I told her she does as C is very bad and was told it is her decision if she warrants one or not. I put my point across and she did turn up. She kept her handbag over her shoulder looked at C for about 2 minutes. Then told me she is ok and made me feel like a neurotic mother. C was not well I phoned 111 who told us to call 999, which I did and she was blue lighted in an ambulance.
Finally a new medical professional
In August 2018, C had to have a lumbar puncture due to fluid build up around her brain, this was found during a routine opticians appointment. Through this we were put under a new Consultant who was shocked we had no medical support and promised a load of different support avenues she was going to help us with.
Through her we are seeing a Neurologist to try to get to the bottom of C’s constant 24/7 migraine headaches she has had for over 4 years.
We had an appointment to see her in the November which was cancelled. Everytime I rang to speak to her I was told she was busy. Once I did manage to get to speak to her and she told me to bring C in straight away go to A&E and she would see her imediately. We got there and sat over 7 hours to be sent home, C is noise and light sensitive so she was in a worse state by the time we left.
Eventually months later with no medical support, we contacted our MP. He was great and emailed the head of the hospital. The lies we got back in response was awful. Eventually the consultant rang me and told me she does not see C as she does not understand the illness.
You will have seen my posts about C being ill, and being admitted to hosptial, they kept trying to get the same consultant to see us. I refused and kept repeating our last conversation with her. The medical support for ME is disgusting and unless you know where to get support it is very lonely and very scary. I am much happier that we are seeing our consultant privately now, as he also researches into the illness.
Has ME affected you or someone you know?