oracle Report post Posted July 30, 2006 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
Viper Report post Posted July 30, 2006 She talks so much sense, just a shame no one will take any notice. And what a waste of a brilliant professional. Just out of interest, do you think The Newcomon centre at Guys,that is the department that deals with ASD's, was named after her? Quote Share this post Link to post Share on other sites
jlp Report post Posted July 30, 2006 Very interesting reading. We are lucky, we are seen regularly at the C&F Unit with an excellent consultant. I'm becoming more and more frustrated by the lack of appropriate education for autistic children however and coming to believe strongly that mainstream is not suitable for a large proportion of such children. What gets me is that they know ASC are rising so where is the provision for these children? If it's come as a surprise to them (which I doubt) then they should be making suitable provision available and quickly. I might even start nagging my local councillor and that's not me at all! Quote Share this post Link to post Share on other sites
TheNeil Report post Posted July 30, 2006 'If you are passive, you could be waiting years, but if you have a loud voice you will be seen.' Well that's just great isn't it? I didn't realise that things had gotten so bad that people were now treated on the basis of who can shout/moan the loudest/most. Maybe the NHS would like to introduce alternative methods for deciding waiting lists, like who can put in a hat quickest or tie their own shoelaces while blindfolded. No, let's just go for a straight race with the first person running from Land's End to John O'Groats getting to see a specialist. Actually the NHS could save a fortune and slash waiting lists if it only deals with illnesses, accidents and conditions that require no more than a sticky plaster I don't blame this specialist at all and I'm glad that she's come out and said this...not that it'll make a blind bit of difference. Actually I don't blame the doctors, nurses and consultants themselves. Who I blame are the policy makers, the government and the hospital trusts who put 'performance' above all else and then end up wasting a fortune on management consultants (and the like) telling them how to 'cut costs' and improve care - the people who know about the job are, like in so many systems/environments, the one set of people who usually get ignored Quote Share this post Link to post Share on other sites
Zemanski Report post Posted July 30, 2006 one more specialist not working for our children any more having said that I totally agree with what she is saying Z Quote Share this post Link to post Share on other sites
phasmid Report post Posted July 30, 2006 I summed up my dissertation with something along the lines of those with the loudset voices or deepest pockets got what they needed for their children this followed the opening statement which was based on a 10(ish) yr old quote from an HMI report saying this was pretty much the case then as far as SEN was concerned...nothing changes then. As zemanski says thats 1 lees voice shouting up for us Quote Share this post Link to post Share on other sites
Ohforaquietlife Report post Posted July 30, 2006 Just as well I've got a loud voice when I need one and effective letter writing skills then isn't it. Makes you feel like doing the same as the doctor in question - my brother lives in the US so we could go tomorrow if we wanted - but then you're faced with the ridiculous situation that kids that have not had all their immunisations cannot enter public schools and as the MMR was what put us in this predicament in the first place...well I guess we'll be staying here! I started off being very passive but soon learned that that gets you nowhere. You've got to bother the hell out of the people who hold all the cards - in the nicest but firmest way possible and then, just maybe, you might get somewhere. It's s**t though isn't it. I find the whole situation really depressing. ohf! Quote Share this post Link to post Share on other sites
PinkSapphireAngel Report post Posted July 30, 2006 Fantastic but heart breaking article. I have forwarded it to my MP and asked him to forward it to relevent Governemtn ministers. Quote Share this post Link to post Share on other sites
Canopus Report post Posted July 30, 2006 It's a complete tragedy that a professional in SEN is forced to leave the country because of the way the NHS is run. I think it's disgusting that someone should be forced into having to make such a move and I blame the government and NHS management. Quote Share this post Link to post Share on other sites
CarerQuie Report post Posted July 30, 2006 it's all true.However,it is only in later years that the human cost of the current policies will come to fruition.xx Quote Share this post Link to post Share on other sites
Guest flutter Report post Posted July 30, 2006 what hope do we have???? Quote Share this post Link to post Share on other sites
oracle Report post Posted July 30, 2006 (edited) deleted Edited October 30, 2006 by oracle Quote Share this post Link to post Share on other sites
marshmallow Report post Posted July 30, 2006 what hope do we have???? Thats just what I was thinking as I read the article Its such a shame that top professionals are leaving, but maybe if enough a brave enough to voice any concerns they have, like this lady has, the government will have to listen. Quote Share this post Link to post Share on other sites
onlycrazygal Report post Posted July 30, 2006 i commend her for speaking up shes brave.......especially when sooo many dont.....but then again they value there jobs, such a shame she couldnt stay to speak up on such issues! it would be nice to write a reply to her from an organisation such as this through the newspaper......now wouldnt that be interesting.... hugs, paula Quote Share this post Link to post Share on other sites
smiley Report post Posted July 31, 2006 Couple of bits that stood out for me...... because in all conscience I can no longer participate in a corrupt and dysfunctional system that is dishonest in its treatment and management of children with special needs.' 'We are excluding these children from primary school. What sort of message does that give? We are excluding them from school, from society, from having any existence. she argued. 'It is perfectly possible for an autistic child to be happy and well adjusted. They do not have to be violent and unhappy. The choice, she says, is: 'Invest now or build prisons later.' Hmmmmmmmmm Quote Share this post Link to post Share on other sites
Lucas Report post Posted July 31, 2006 I get the gist of what she says and agree totally, it's just the finer points where she says Autism makes the children violent or their behaviour is down to Autism; at odds with her other statement that moving them to a better enviroment would improve their behaviour. I can't help but get caught up in the details, though I still understand what she means to say as a whole. Quote Share this post Link to post Share on other sites
Canopus Report post Posted August 1, 2006 I am starting to think that the private sector will have to be responsible for supporting people with AS and ASD. I doubt the NHS will ever provide any quality support and advice for the forseeable future. I read somewhere that the NHS is not going to offer alternative medicine and will stick to established medical practices. I'm not sure how to interpret this but does AS and ASD class as alternative medicine in the eyes of traditional psychology and psychiatry? I think the NHS is one of the worse places for parents to get advice if their kids have AS and ASD. For a start, how many doctors are aware of Ian Jordan and are they even allowed to recommend an appointment with Ian Jordan under NHS protocol? I'm sure NHS doctors are prohibited from recommended private medical facilities. Quote Share this post Link to post Share on other sites
Emum Report post Posted August 1, 2006 I am starting to think that the private sector will have to be responsible for supporting people with AS and ASD. Except that private medical insurance won't cover anything which is related to autism (or at least ours wouldn't) on the basis it is a chronic condition not an illness, and to pay for all the interventions which our children need privately full time would be exorbitant. The going rate for independent SLTs, OTs and psychologists seems to be anywhere between ?50 and ?100 per session, with assessments and reports often being 3 or 4 times this amount, and for consultant paediatricians between ?150 and ?250 per session. Can any of us really afford this kind of money on a weekly basis? Quote Share this post Link to post Share on other sites
Luanad Report post Posted August 2, 2006 She talks so much sense, just a shame no one will take any notice. And what a waste of a brilliant professional. Just out of interest, do you think The Newcomon centre at Guys,that is the department that deals with ASD's, was named after her? No it wasn't named after her - just coincidence. It's actually the Elizabeth Newcommen Centre and it was there when I trained a s nurse there 20 years ago - she's only been in Britain 7 years. Helen Quote Share this post Link to post Share on other sites
Canopus Report post Posted August 3, 2006 Except that private medical insurance won't cover anything which is related to autism (or at least ours wouldn't) on the basis it is a chronic condition not an illness, and to pay for all the interventions which our children need privately full time would be exorbitant. The going rate for independent SLTs, OTs and psychologists seems to be anywhere between ?50 and ?100 per session, with assessments and reports often being 3 or 4 times this amount, and for consultant paediatricians between ?150 and ?250 per session. Can any of us really afford this kind of money on a weekly basis? It's Hobson's choice. Either go private or get no help at all. The NHS is subservient to the government and it is the will of the government that the NHS will not offer certain medical and psychology services. An example of a service not offered on the NHS is excimer laser treatment to rectify certain visual defects. If the NHS doesn't have any staff who are knowledgeable about AS or ASD or if staff are bound by rules and regulations as part of government protocol that they cannot give much needed advice to parents then it will be a pointless effort and a waste of time for parents to ask their GP or hospital doctors for help and advice. You might disagree with me but I think it will be a smarter move to set up a better private sector support and advice network for people with AS and ASD than it will be to lobby the government to reform the NHS to offer high quality services for AS and ASD. My experiences of trying to get the government to do something have never been successful and politicians and councillors steadfastly refuse. Quote Share this post Link to post Share on other sites
Guest hallyscomet Report post Posted August 5, 2006 This doesnt surprise me at all, I am sure we can all say there is nothing new about this. We/I have learned by being loud I get action. I just happened to be very lucky to be in the right place at the right time, and I had the best network of professionals around me guiding me all the time. It is infuriating as some one with this level of experience turning their backs because of exhaustion with the system. H Quote Share this post Link to post Share on other sites
Emum Report post Posted August 5, 2006 You might disagree with me but I think it will be a smarter move to set up a better private sector support and advice network for people with AS and ASD than it will be to lobby the government to reform the NHS to offer high quality services for AS and ASD. My experiences of trying to get the government to do something have never been successful and politicians and councillors steadfastly refuse. My concern about this is what happens to those who just can't afford the private help? We are fortunate in that my husband has a well paid job, so even with my giving up work to look after E, we are able to afford some private intervention. I regularly speak to other parents, however, who simply could not afford even one private SLT or OT session a month on their income. The NHS may not offer enough help, but at least it offers some, which is available to all. If we agree that it should all be opted out to the private sector, those who already have a lot to contend with due to lack of family income, will be much worse off. Quote Share this post Link to post Share on other sites
Canopus Report post Posted August 6, 2006 My concern about this is what happens to those who just can't afford the private help? We are fortunate in that my husband has a well paid job, so even with my giving up work to look after E, we are able to afford some private intervention. I regularly speak to other parents, however, who simply could not afford even one private SLT or OT session a month on their income. The NHS may not offer enough help, but at least it offers some, which is available to all. If we agree that it should all be opted out to the private sector, those who already have a lot to contend with due to lack of family income, will be much worse off. I am very concerned about this as well but until the NHS establishes proper facilities to deal with AS and ASD then using NHS services will be like trying to order sushi in an Italian restaurant. The problem is the will of the government and the attitude of NHS managers who hold a highly conservative outlook. For the time being both are committed to concentrate only on traditional established medical and psychology rather than embrace more recent developments and knowledge. My experience with the NHS has been very chequered to say the least and I strongly believe that bad advice is often worse than no advice at all. I am worried that parents that use NHS facilities for their kid with AS or ASD could end up being shunted from person to person because none of them know much about AS or ASD, or are not in a position to give certain crucial pieces of advice because of NHS rules and regulations. Worse of all they could be given bad advice such as being told the problems are nothing but a childhood whim or even worse, schizophrenia. Spending ?200 on a private session with an expert in the field who can give the highest quality advice will almost certainly be the best move and seen as money well spent. I have talked to other parents with kids with AS who have wasted vast amounts of time and effort battling with NHS and getting nowhere before going for a private appointment that they say was a miracle and money well spent. If you want the NHS to offer better services for AS and ASD then I suggest you discuss the matter with your MP. I know someone who works for an AS support group who is soon going to meet their MP to get them to make the government do more to support people with AS and ASD. I was recently talking to a lecturer in psychology from a university who is interested in AS and the university is in the process of setting up a special facility to offer services for both kids and adults with AS. If you would like more information about this then PM me. Quote Share this post Link to post Share on other sites
UltraMum Report post Posted August 6, 2006 No it wasn't named after her - just coincidence. It's actually the Elizabeth Newcommen Centre and it was there when I trained a s nurse there 20 years ago - she's only been in Britain 7 years. Helen There's a Newcomen street there too ... Elizabeth Newcomen left money for a school back in the 1600's sometime - i think for girls specifically but i may be wrong ... I trained at Guy's as a radiographer .. slightly more than 20 years ago!!! Quote Share this post Link to post Share on other sites
onlycrazygal Report post Posted August 7, 2006 can we really point the finger to the mismanagement and ill funding of the NHS......of course its a contributary factor no doubt of that........ just feel that the merge between LEA s , Social services, and the medical profession is an unhealthy one. These people can and have been overzealous with there findings, they lease freely between themselves as to what THEY feel is in the best interests of our child.... i feel the departmental merge is/can be very detrimental to any asd child pre or post dx..... ive found all it takes is a derogitry comment from one professional and it has a knock on affect influencing every professional that you come across...... the government must be very careful when it comes to the childrens database, eg. i have a report from accident and emergency that says my son was 2yrs old and was presented to them with a buckle fracture to his ankle., apparently he fell off the couch........ the truth of the matter is that hes never broken a bone in his life..... hugs, paula Quote Share this post Link to post Share on other sites
