Forum Replies Created
September 7, 2018 at 6:09 pm #161742Reply To: I'm afraid of Americans (I'm afraid I can't help it)
Mike, I think where I was lucky I managed to find a good hospital unit, which is considered the best that kind in the country. That always helps you get what you need. I also had a good GP who would do whatever I asked him.
Moving on to the misdiagnosis point. When I was first diagnosed my brother and sister had already been diagnosed with Duchenne. I was then tested again at 15, which confirmed Duchenne and again tested 10 years ago which again confirmed Duchenne. I match the progress of DMD perfectly. It’s just that I keep going, somehow! But I do agree with Catatude diagnosis procedure knowledge has improved. I can’t be bothered to be tested for a fourth time is nothing was really be gained in relation to my treatment.
DavidAugust 31, 2018 at 4:04 pm #161284Reply To: I'm afraid of Americans (I'm afraid I can't help it)
Hello Shane. Your post caught my eye. I too was diagnosed as having DMD when I was around three years old, as were my sister and brother. I attend a very good unit here in London at which the doctors question my diagnosis as I am now 58. They feel I have Limb Girdle. However I had three tests for Duchenne all giving the same result. I have not attempted to be retested for Limb Girdle as I can’t see the point. The doctors agree I would receive no different treatment.
I would like to move on to your point about insurance. We here in the UK have a distant system I’m sure you’ve heard of the National Health Service. When you get treatment free at the point of use. My experience of the NHS it’s similar to Catatude and totally different from embayweather. I have never had any issues in getting equipment. My hospital unit provide me with two nippy ventilators, cough assist, a suction machine and all the little bits such as tubing and masks free. The good thing is if I want small bits of equipment such as tubing and masks I just ring up and tell them and they post it to me immediately. Again no charge. I also have provided by my local authority a ceiling hoist, a wheelchair which is comfortable and what I require and a special bed. Also I receive funding for employing carers. The district nurse and my GP are also only a phone call away. I certainly would not want to swap our health system for one similar to yours in the USA.
DavidJune 23, 2018 at 3:10 pm #159172Reply To: Student Nurse wanting to hear family experience's with boys with DMD
Hello, yes I will be happy to talk to you if you wanted to. I, along with my brother and sister have been diagnosed with Duchenne Muscular Dystrophy.
DavidApril 1, 2018 at 4:17 pm #155527Reply To: Things they are a changing
Enjoying our debate! Firstly your MP, if you live in an area where your MP has no worries about losing his seat, then yes it is hard to get them to do anything. Luckily, our MP only has a narrow majority. It is one of the problems of our parliamentary system. However, that is another debate!
I am also fortunate that I attend a very good respiratory unit, the Lane Fox Unit, at St Thomas’s hospital and have good social services in our area. I have all the equipment, medical, and social that I require at this moment.
I have spent many hours in A&E. I am ventilator dependent 24/7, my brother and sister who both had muscular dystrophy, like myself, both of who have now died, spent many hours in A&E and in hospitals generally. My eldest daughter, has severe asthma and my mother died in September 1st last year. So I am aware of the problems.
About my point, regarding charging some people. I just wonder who would we leave out of the system? Drug takers? Drinkers? Smokers? Overweight people? Anorexics? People with mental health issues? Long-term unemployed? Asylum seekers? What’s about people who do dangerous sports? Or just sports? My brother-in-law was told by his GP on three occasions, that he didn’t think he should get treatment! Why? Because he hurt his knee playing football, his ankle playing squash, and his back exercising in the gym! I thought doing sport is recommended?
I agree with your point made earlier, that the NHS is being slowly privatised. I fear the System we will end up with in 40 or 50 years will be like the American system. Right now some 40 million Americans do not get coverage under their system.
DavidMarch 30, 2018 at 2:23 pm #155520Reply To: Things they are a changing
You have my sympathies, not that that helps you. What I will say is that if you need medication it should be provided free. We all know that spending on the NHS it Has been capped and has failed to keep up With inflation, but you still have the right to free medication and treatment.Have you tried to contact your MP?
I agree with you that there is backdoor privatisation. Situations like yours prove it. We need to put pressure on the government to increase funding. We have to do it by voting for politicians who will meet our needs.
However, I must disagree with your point regarding certain groups being made to pay for treatment. The NHS should be a service for everyone, free at the point of delivery. If you start picking out groups who should not receive treatment what happens to those people? What other groups could be included? Maybe some people may think that people like us with MD Should not get treatment. They may ask why should I pay for someone else’s medication? No, treatment should be free to everyone.
The government keeps telling us we are the fifth richest Country in the world. I think that should mean we can provide Health care for all. Don’t let them divide us into groups. If you do that you may find yourself in the” wrong” group.
DavidNovember 16, 2014 at 2:59 pm #95015Re: Am I the worst mother?
Hi Woodstock, my mother had 3 children with DMD, 2 boys 1 girl. I am the only survivor and am in my 50s now. My parents struggled too in the days, pre carers and very little financial help. You will get through but take/seek out any help you need and try to live as “normal” a life as you can.