Hi. You might recall that I posted a few weeks ago to say that my MP was writing to the Department of Health on a couple of points on my behalf. Julian Sturdy is my local MP and I’ve got him on board to help me on the ME Awareness front. I received the following reply:
“To update you further with Julian’s work on raising awareness of ME at Westminster, earlier this month Julian tabled written questions to the Department of Health asking:”
“what steps the Government is taking to raise awareness of myalgic encephalomyelitis among (a) healthcare professionals and (b) the general public” and about any plans the Department had “to mark International Awareness Day for Chronic Immunological and Neurological Diseases on 12 May 2018”.
The replies received to these two questions were to say the least disappointing. I have therefore sent the following response to Julian, plus three other local MP’s and my local councillor:
“I’m afraid it seems that any official requests for help in this area are met by replies that just tell us how things are, which department deals with what, and pretty much as if the information has been lifted from the departmental site in a cut and paste exercise. Usually the information we receive, is less than we already know. Our lives are consumed by this illness and therefore with what little energies we have, if there’s any spare from just getting through a day, we use it in trying to get better and research every available avenue to learn more.
What the 250,000 people in the UK with ME and their families really need is a response that has feeling and says that the situation is terrible and just not good enough and that the author of the reply will take it on and get something moving to help the people they represent.
I think it’s why so many feel government is out of touch with people who are really suffering. There is a real need for a champion to step forward for those who are in desperate need, and feeling that nobody is really listening. From what I understand, although many have died through complications caused by ME, the biggest cause of death has been through suicides, and that’s something I really do understand. This is borne from the feeling of being shunted off to the side-lines as it’s all just too difficult to deal with by those who are elected and empowered to help us. Whereas the likes of two other terrible illnesses, MS and Parkinson’s are well known and are given support, by the NHS Choice’s own figures, there are more ME sufferers in the UK than both those illnesses combined, yet we are virtually ignored.
Please don’t treat this subject as you might deal with letters about potholes or street lighting issues. This really does affect the lives of those in your community, and the only real help is being given by those who are very ill themselves. We are having to protest and scrap to be heard, but we need you guys to step forward and speak up for us.
Thank you Julian for the work you have done so far, but we must not just accept the bland responses given that can be produced by a member of the team just doing a quick Google search or cutting and pasting handy paragraphs. There is a whole underground of support groups for people such as us, in the main lending each other support although ill equipped energy and health wise to do so, I hear cries for help on pretty much a daily basis from one group or another from individuals who can’t see the point in carrying on. Is this the country we have become ?
This is not against one party or another. This plea is totally non-political in that I understand how the system works and that it’s easier to shout louder when you don’t hold the purse strings, but it needs real action from all parties. Can I just ask how you might feel if you wake up tomorrow morning to find that one of your children has ME, and there’s nothing being done to help ? With figures estimating that there are likely to be around 800 in the York area alone with ME, 200 being bed or house bound, it’s a real possibility.
Can I ask if one of you will step forward to be our voice please ?