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.
This is also the time, you feel relieved that you know what is wrong with you, and what you are facing. But unsure of where your future will go in terms of 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. On our last appointment to him where 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. C crumbled put her head on my shoulder and cried her heart out.
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.
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.
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.
Our current medical professionals
Last August C had to have a lumbar puncture due to fluid build up around her brain. Through this we were put under a new Consultant. She 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 should have had an appointment in November with her, which was cancelled and a new one was going to be made. We are still waiting. If I ring to speak to her I get told she is busy and to take C into A&E. We have done this on many occasions and end up there for over 7 hours. Which with a child who is noise and light-sensitive causes her more stress.
When we do visit A&E they have no idea of the illness, I have to spell it out for them, and explain what it is while they google it on their phones. Our last visit was at the beginning of February where they were referring her to another department. We are still waiting for any appointment to come through.
As you can see there is no support out there, if you are struck with this illness or your child is, you have to go along blind facing brick wall after brick wall. We have GP’s who do not know about the illness, a Consultant who is too busy to see or talk to us and a child who is bedbound and suffering as no one will help.
You can read our story or any of the posts from ME Awareness week here