Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hello Jane: more on your email, two things I think are more problematic in Britain. 1. Registering a child as disabled: The health visitor at our local health centre has recommended that we have Ottilie registered as disabled. This, she says, will bring us tax advantages, and mean that, for e.g., her school (when she starts real school) will be compelled to create a timetable which doesn't require her to walk a long way between classes. We haven't done this. We're scared of the label 'disabled' and that it will cause people to look at Ottilie as different and not as capable as other children. But I think this may be another of the things we are slowly taking on board, and - depending on the development of the condition - may well do before Ottilie starts primary school in about 18 months. I didn't quite understand the tax question, but gather that there is an entry on the tax return which can be filled in if a child is registered as disabled, and this gives money back to the carer of the child. Doctors aren't required to look after this side of things, and I'm sending this in case you haven't been told about it. 2. Accusation of child abuse: I've spoken to my partner about this, and we think you should report the doctor to the General Medical Council. Very good wishes to your family, Dale First, A survey of British=?windows-1252?Q?rheumatologists=92_DMARD_?==?windows-1252?Q?preferences_for_Rheumatoid Arthritis?=> A survey of British rheumatologists' DMARD preferences for rheumatoid > arthritis > http://rheumatology.oupjournals.org/cgi/content/abstract/43/2/206>> P. Jobanputra1,2, J. 1, K. 2 and A. Burls1 Rheumatology > 2004; 43: 206-210 © British Society for Rheumatology 2003; allrights > reserved>> Abstract>> Objective. To determine the current disease-modifying anti-rheumatic > drug (DMARD) preferences of UK consultant rheumatologists.>> Methods. A questionnaire was sent in May 2002. We asked which DMARD(s)> was most frequently preferred first and sought the most typical > sequence of DMARDs, including DMARD combinations. Also we determined > the extent to which prognostic and other factors influenced treatment > choices. Comments were invited, written responses abstracted and key > themes identified.>> Results. After two mailings, 331 (of 460; 72%) suitable questionnaires> were returned. Ninety-five per cent (315/331) preferred methotrexate > (154, 46.5%) or sulphasalazine (144, 43.5%) or either of these two > (17,> 5%) as first-choice agent.>> Of those who chose methotrexate first, 80% (123/154) ranked > sulphasalazine second, 45% (55/123) combined sulphasalazine and > methotrexate and 49% (27/55) then added hydroxychloroquine to this > combination, in active disease.>> Of those who chose sulphasalazine first, 95% (137/144) ranked > methotrexate second, 75% (113/150) preferring methotrexate monotherapy> and 12% (18/150) the combination with sulphasalazine.>> Rheumatologists who preferred sulphasalazine first more commonly used > subsequent DMARDs singly than those who started with methotrexate.>> Leflunomide was more commonly preferred than intramuscular gold as > third choice (52/145 vs 29/145).>> The most popular sequence of DMARDs was methotrexate or > sulphasalazine, singly or in combination, leflunomide, intramuscular > gold and anti-tumour necrosis factor therapy.>> Poor prognostic factors influenced DMARD choice, but patient > occupation and drug costs did not.>> Conclusion. Methotrexate has displaced other DMARDs, especially > sulphasalazine, as agent of first choice and newer agents have > displaced older DMARDs. Whether the expressed preference for > particular DMARDs accurately reflects actual use, and is optimal in > rheumatoid arthritis, remains to be determined.>> 1Department of Public Health and Epidemiology, University of > Birmingham, Edgbaston, Birmingham and 2Department of Rheumatology, > Selly Oak Hospital, University Hospital Birmingham NHS Trust, > Raddlebarn Road, Birmingham B29 6JD, UK.>> Correspondence to: P. Jobanputra. E-mail: P.Jobanputra@...>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi Dale & Jane, In my experience in the UK there are many helpful disability benefits available if you can prove that you deserve them and you can deal with the torture of the application procedures. Whether we may like it or not, the fact is that the most serious cases of JIA are definitely disabling and can occasionally be fatal. My son has had Systemic JIA since he was 9 months old and is now 9 years old. We had to get a Statement of Special Educational Needs for him which is probably what the Health Visitor was referring to. Note that getting this statement will take six months or more (yes really) as it is a complex process involving representations from all your medical, social and educational departments. Not trivial. Regarding the accusation of child abuse, that also happened to us years ago. It put me into a state of total shock at the time and I wish I had reported the person responsible. My blood still boils just thinking about what was implied. So, many thanks for the tip, if it happens again I'll be straight on to the GMC. Best Regards, Oliver -----Original Message-----From: Dale Gunthorp [mailto:dale@...]Sent: 27 January 2004 20:59 Subject: Re: Jane: 2 UK issues Hello Jane: more on your email, two things I think are more problematic in Britain. 1. Registering a child as disabled: The health visitor at our local health centre has recommended that we have Ottilie registered as disabled. This, she says, will bring us tax advantages, and mean that, for e.g., her school (when she starts real school) will be compelled to create a timetable which doesn't require her to walk a long way between classes. We haven't done this. We're scared of the label 'disabled' and that it will cause people to look at Ottilie as different and not as capable as other children. But I think this may be another of the things we are slowly taking on board, and - depending on the development of the condition - may well do before Ottilie starts primary school in about 18 months. I didn't quite understand the tax question, but gather that there is an entry on the tax return which can be filled in if a child is registered as disabled, and this gives money back to the carer of the child. Doctors aren't required to look after this side of things, and I'm sending this in case you haven't been told about it. 2. Accusation of child abuse: I've spoken to my partner about this, and we think you should report the doctor to the General Medical Council. Very good wishes to your family, Dale First, A survey of British=?windows-1252?Q?rheumatologists=92_DMARD_?==?windows-1252?Q?preferences_for_Rheumatoid Arthritis?=> A survey of British rheumatologists' DMARD preferences for rheumatoid > arthritis > http://rheumatology.oupjournals.org/cgi/content/abstract/43/2/206>> P. Jobanputra1,2, J. 1, K. 2 and A. Burls1 Rheumatology > 2004; 43: 206-210 © British Society for Rheumatology 2003; allrights > reserved>> Abstract>> Objective. To determine the current disease-modifying anti-rheumatic > drug (DMARD) preferences of UK consultant rheumatologists.>> Methods. A questionnaire was sent in May 2002. We asked which DMARD(s)> was most frequently preferred first and sought the most typical > sequence of DMARDs, including DMARD combinations. Also we determined > the extent to which prognostic and other factors influenced treatment > choices. Comments were invited, written responses abstracted and key > themes identified.>> Results. After two mailings, 331 (of 460; 72%) suitable questionnaires> were returned. Ninety-five per cent (315/331) preferred methotrexate > (154, 46.5%) or sulphasalazine (144, 43.5%) or either of these two > (17,> 5%) as first-choice agent.>> Of those who chose methotrexate first, 80% (123/154) ranked > sulphasalazine second, 45% (55/123) combined sulphasalazine and > methotrexate and 49% (27/55) then added hydroxychloroquine to this > combination, in active disease.>> Of those who chose sulphasalazine first, 95% (137/144) ranked > methotrexate second, 75% (113/150) preferring methotrexate monotherapy> and 12% (18/150) the combination with sulphasalazine.>> Rheumatologists who preferred sulphasalazine first more commonly used > subsequent DMARDs singly than those who started with methotrexate.>> Leflunomide was more commonly preferred than intramuscular gold as > third choice (52/145 vs 29/145).>> The most popular sequence of DMARDs was methotrexate or > sulphasalazine, singly or in combination, leflunomide, intramuscular > gold and anti-tumour necrosis factor therapy.>> Poor prognostic factors influenced DMARD choice, but patient > occupation and drug costs did not.>> Conclusion. Methotrexate has displaced other DMARDs, especially > sulphasalazine, as agent of first choice and newer agents have > displaced older DMARDs. Whether the expressed preference for > particular DMARDs accurately reflects actual use, and is optimal in > rheumatoid arthritis, remains to be determined.>> 1Department of Public Health and Epidemiology, University of > Birmingham, Edgbaston, Birmingham and 2Department of Rheumatology, > Selly Oak Hospital, University Hospital Birmingham NHS Trust, > Raddlebarn Road, Birmingham B29 6JD, UK.>> Correspondence to: P. Jobanputra. E-mail: P.Jobanputra@...>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2004 Report Share Posted January 28, 2004 Hi Dale, Before Ottile starts school contactyourlocal education department. This gets the ball rolling. Her Statement will take about 3 months from the first contact with department. This will enable Ottile to get any physio or hydro needs met during school time and a special needs assistant trained to do the job. Are you claiming DLA? I applied and was turned down but took them to tribunal and won. Is worth the money for any equipment you may need. I never worried about my son being classed as disabled as he is in main stream school and is treated no differently to any other child. Child tax credits are worth looking at claiming but only if you are receiving DLA. You get more money if you have adisabled child and are claiming, I wasnt aware of this either. Have you contacted The Lady Hoare trust who have independant social workers who can discuss and benefits with you? Any questions please ask as Ive been through it all recently. Jane -- Message sent with Supanet E-mail Re: Jane: 2 UK issues > Hello Jane: more on your email, two things I think are more problematic in Britain. > > 1. Registering a child as disabled: The health visitor at our local health centre has recommended that we have Ottilie registered as disabled. This, she says, will bring us tax advantages, and mean that, for e.g., her school (when she starts real school) will be compelled to create a timetable which doesn't require her to walk a long way between classes. We haven't done this. We're scared of the label 'disabled' and that it will cause people to look at Ottilie as different and not as capable as other children. But I think this may be another of the things we are slowly taking on board, and - depending on the development of the condition - may well do before Ottilie starts primary school in about 18 months. > I didn't quite understand the tax question, but gather that there is an entry on the tax return which can be filled in if a child is registered as disabled, and this gives money back to the carer of the child. Doctors aren't required to look after this side of things, and I'm sending this in case you haven't been told about it. > > 2. Accusation of child abuse: I've spoken to my partner about this, and we think you should report the doctor to the General Medical Council. > > Very good wishes to your family, Dale > > > > First, > A survey of British > =3D?windows-1252?Q?rheumatologists=92_DMARD_?= > =?windows-1252?Q?preferences_for_Rheumatoid Arthritis?=3D > > > A survey of British rheumatologists' DMARD preferences for rheumatoid > > arthritis > > http://rheumatology.oupjournals.org/cgi/content/abstract/43/2/206 > > > > P. Jobanputra1,2, J. 1, K. 2 and A. Burls1 Rheumatology > > 2004; 43: 206-210 © British Society for Rheumatology 2003; all > rights=20 > > reserved > > > > Abstract > > > > Objective. To determine the current disease-modifying anti-rheumatic > > drug (DMARD) preferences of UK consultant rheumatologists. > > > > Methods. A questionnaire was sent in May 2002. We asked which DMARD(s) > > > was most frequently preferred first and sought the most typical > > sequence of DMARDs, including DMARD combinations. Also we determined > > the extent to which prognostic and other factors influenced treatment > > choices. Comments were invited, written responses abstracted and key > > themes identified. > > > > Results. After two mailings, 331 (of 460; 72%) suitable questionnaires > > > were returned. Ninety-five per cent (315/331) preferred methotrexate > > (154, 46.5%) or sulphasalazine (144, 43.5%) or either of these two > > (17, > > 5%) as first-choice agent. > > > > Of those who chose methotrexate first, 80% (123/154) ranked > > sulphasalazine second, 45% (55/123) combined sulphasalazine and > > methotrexate and 49% (27/55) then added hydroxychloroquine to this > > combination, in active disease. > > > > Of those who chose sulphasalazine first, 95% (137/144) ranked > > methotrexate second, 75% (113/150) preferring methotrexate monotherapy > > > and 12% (18/150) the combination with sulphasalazine. > > > > Rheumatologists who preferred sulphasalazine first more commonly used > > subsequent DMARDs singly than those who started with methotrexate. > > > > Leflunomide was more commonly preferred than intramuscular gold as > > third choice (52/145 vs 29/145). > > > > The most popular sequence of DMARDs was methotrexate or > > sulphasalazine, singly or in combination, leflunomide, intramuscular > > gold and anti-tumour necrosis factor therapy. > > > > Poor prognostic factors influenced DMARD choice, but patient > > occupation and drug costs did not. > > > > Conclusion. Methotrexate has displaced other DMARDs, especially > > sulphasalazine, as agent of first choice and newer agents have > > displaced older DMARDs. Whether the expressed preference for > > particular DMARDs accurately reflects actual use, and is optimal in > > rheumatoid arthritis, remains to be determined. > > > > 1Department of Public Health and Epidemiology, University of > > Birmingham, Edgbaston, Birmingham and 2Department of Rheumatology, > > Selly Oak Hospital, University Hospital Birmingham NHS Trust, > > Raddlebarn Road, Birmingham B29 6JD, UK. > > > > Correspondence to: P. Jobanputra. E-mail: P.Jobanputra@... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Dear Jane I wonder could you help me. I haven't posted very often, but keep up to date with everyone by reading all the posts. I live in Northern Ireland. My son Mark has pauciarticular arthritis. It is localised in his neck, but when his neck is in flare, he can't even get off the chair. He also has Iritis in both eyes. I applied for DLA, and was turned down. They are now reviewing it but I think they will still turn me down. Can you give me any suggestions of what to do? I'd really appreciate any help. Janette Subject: Re: Re: Jane: 2 UK issues Hi Dale,Before Ottile starts school contactyourlocal education department. This gets the ball rolling. Her Statement will take about 3 months from the first contact with department. This will enable Ottile to get any physio or hydro needs met during school time and a special needs assistant trained to do the job.Are you claiming DLA? I applied and was turned down but took them to tribunal and won. Is worth the money for any equipment you may need. I never worried about my son being classed as disabled as he is in main stream school and is treated no differently to any other child.Child tax credits are worth looking at claiming but only if you are receiving DLA. You get more money if you have adisabled child and are claiming, I wasnt aware of this either. Have you contacted The Lady Hoare trust who have independant social workers who can discuss and benefits with you?Any questions please ask as Ive been through it all recently.Jane-- Message sent with Supanet E-mail Re: Jane: 2 UK issues> Hello Jane: more on your email, two things I think are more problematic in Britain.>> 1. Registering a child as disabled: The health visitor at our local health centre has recommended that we have Ottilie registered as disabled. This, she says, will bring us tax advantages, and mean that, for e.g., her school (when she starts real school) will be compelled to create a timetable which doesn't require her to walk a long way between classes. We haven't done this. We're scared of the label 'disabled' and that it will cause people to look at Ottilie as different and not as capable as other children. But I think this may be another of the things we are slowly taking on board, and - depending on the development of the condition - may well do before Ottilie starts primary school in about 18 months.> I didn't quite understand the tax question, but gather that there is an entry on the tax return which can be filled in if a child is registered as disabled, and this gives money back to the carer of the child. Doctors aren't required to look after this side of things, and I'm sending this in case you haven't been told about it.>> 2. Accusation of child abuse: I've spoken to my partner about this, and we think you should report the doctor to the General Medical Council.>> Very good wishes to your family, Dale>>>> First,> A survey of British> =3D?windows-1252?Q?rheumatologists=92_DMARD_?=> =?windows-1252?Q?preferences_for_Rheumatoid Arthritis?=3D>> > A survey of British rheumatologists' DMARD preferences for rheumatoid> > arthritis> > http://rheumatology.oupjournals.org/cgi/content/abstract/43/2/206> >> > P. Jobanputra1,2, J. 1, K. 2 and A. Burls1 Rheumatology> > 2004; 43: 206-210 © British Society for Rheumatology 2003; all> rights=20> > reserved> >> > Abstract> >> > Objective. To determine the current disease-modifying anti-rheumatic> > drug (DMARD) preferences of UK consultant rheumatologists.> >> > Methods. A questionnaire was sent in May 2002. We asked which DMARD(s)>> > was most frequently preferred first and sought the most typical> > sequence of DMARDs, including DMARD combinations. Also we determined> > the extent to which prognostic and other factors influenced treatment> > choices. Comments were invited, written responses abstracted and key> > themes identified.> >> > Results. After two mailings, 331 (of 460; 72%) suitable questionnaires>> > were returned. Ninety-five per cent (315/331) preferred methotrexate> > (154, 46.5%) or sulphasalazine (144, 43.5%) or either of these two> > (17,> > 5%) as first-choice agent.> >> > Of those who chose methotrexate first, 80% (123/154) ranked> > sulphasalazine second, 45% (55/123) combined sulphasalazine and> > methotrexate and 49% (27/55) then added hydroxychloroquine to this> > combination, in active disease.> >> > Of those who chose sulphasalazine first, 95% (137/144) ranked> > methotrexate second, 75% (113/150) preferring methotrexate monotherapy>> > and 12% (18/150) the combination with sulphasalazine.> >> > Rheumatologists who preferred sulphasalazine first more commonly used> > subsequent DMARDs singly than those who started with methotrexate.> >> > Leflunomide was more commonly preferred than intramuscular gold as> > third choice (52/145 vs 29/145).> >> > The most popular sequence of DMARDs was methotrexate or> > sulphasalazine, singly or in combination, leflunomide, intramuscular> > gold and anti-tumour necrosis factor therapy.> >> > Poor prognostic factors influenced DMARD choice, but patient> > occupation and drug costs did not.> >> > Conclusion. Methotrexate has displaced other DMARDs, especially> > sulphasalazine, as agent of first choice and newer agents have> > displaced older DMARDs. Whether the expressed preference for> > particular DMARDs accurately reflects actual use, and is optimal in> > rheumatoid arthritis, remains to be determined.> >> > 1Department of Public Health and Epidemiology, University of> > Birmingham, Edgbaston, Birmingham and 2Department of Rheumatology,> > Selly Oak Hospital, University Hospital Birmingham NHS Trust,> > Raddlebarn Road, Birmingham B29 6JD, UK.> >> > Correspondence to: P. Jobanputra. E-mail: P.Jobanputra@...> >> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
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