Positive comments
“I found the book very interesting and helpful and I would look forward to further information” a mum, Gwent.
“Fantastic book. I wish I had this when my daughter was first diagnosed. Thank you for providing it so much information was in it and so well written.” Mum in Potters Bar
“I thought it was excellent. Some websites can be very negative, but I felt your book struck a balance between the facts and hope for the future” Mum, a community nurse.
“Keep up the excellent work” voluntary sector worker, Scotland
“I thank you kindly for the books and information I received from you in the past, when my granddaughter was finally diagnosed it was mild hemaphlygia not juvenile arthritis.” (a grandmother)
“We all found your handbook very useful, especially for our 15 year old son who has juvenile arthritis. We also gave your extra copies to family GP. Thank you.” (a mother)
“Thank you for all your help” (GP surgery)
“Preston branch of Arthritis Care closed. Change of structure of a/c nationally branches now not as were. I sent for the handbook for a little girl with R/A and have passed on your details to the family.” (Arthritis Care worker)
“Thank you for sending the books, they were extremely useful” (A mother)
“I will pass on your newsletter and the form – recently received – to the neighbour of mine, who is the mother of a son with arthritis in the hope that she and, perhaps, her son will respond to you. However, in the meantime, I wish to make a donation towards helping the excellent work you are doing.” (a neighbour)
“Very good advice and information, my daughter’s O.T. used the info when advising about school. Her consultant and physiotherapist also had a look!” ( a mother)
“Brilliant handbook – so glad to have found a source of information that relates to our son.” (a mother)
“This has been the most useful, informative, realistic and pragmatic resource we’ve discovered … keep up the excellent work.” (a mother)
“Excellent book!!! Well done!” (a paediatric O.T.)
“Handbook is brilliant. It really helped us so much” (a mother)
“Excellent. Answered a lot of my questions. Helpful and easy to read.” (a mother)
“It is fantastic and there should be a pile of them at every hospital!” (a mother)
“By giving a copy of the handbook to the grandparents (my parents) it stopped them from questioning my judgment, they used to say things like “are you sure she has that, if it was me I would be asking more questions and wanting more answers” (a mother)
“It has been fantastic, the school has found it very very useful and it has helped my husband understand JIA. As for me it has been a fantastic reference book. Keep up the good work please.” (a mother)
“I work with many children who have arthritis and find it very useful to give them a copy of you most helpful handbook” (Contact a family incorporating Lady Hoare Trust)
“Look forward to receiving latest edition in order to feedback. Excellent website! Well done its fantastic for kids with JIA. Recommending to our patients here. Please could I have more flyers advertising your book for our clinic please.” (Rheumatology department Occupational Therapist)
“I thought that the handbook was excellent, it answered a lot of questions that I forgot to ask or didn’t have time to ask at an appointment, as my daughter has only had arthritis for a year there is so much we were still unsure of. Thanks – you made it a bit easier.” (a mother)
“Fantastic advice and support at a time when we really needed it. It’s also brilliant to give to teachers and assistants at school so that they can really understand about the pain our child is in and how they can best support her.” (a mother)
“The book is the best source of information in a simple quick reference format.” (a mother)
“Excellent book, lots of useful tips and contacts! Well done.” (a mother)
“Very useful for the families I work with” (Social worker at contact a family)
“The handbook was an invaluable resource which I have since given to my daughter at school to aid her and another child with JIA.” (a mother)
“I think your handbook is excellent and well presented. I find it a great help to me in supporting a child with arthritis in the mainstream school.” (a recipient of the book)
“Excellent handbook. Maybe one for siblings as my younger child gets very jealous of the other who has arthritis.” (a mother)
“The parents who have received them have fed back very positive feed back. We tend to give them to children newly diagnosed. They have reported that the book is very informative and they find it useful over the months following diagnosis and some refer to it as their “Bible” of help. We find it very helpful ourselves as it is providing the parents with a total guide and helps them from feeling totally alone. We have had very positive feedback re the website as well.” (Specialist liaison nurse)
“Fantastic handbook, I have read it cover to cover and it has been a huge help to me and my family, it has helped us all through the first eight months of coping with JIA, helping my six year old son.” (a mother)
Suggestions for improvements
“Excellent work; have you included a section on marriage therapy?” (a GP)
“I would like more information on the transition phase (for my 13 year old son) and much more on the uveitis aspects (for my 10 year old son) as they both have JIA.” (a mother)
“My daughter has uveitis as well as arthritis and has just had a trabeculectomy on her right eye. More information about eye disorders would be nice. Please contact me if I can help.” (a mother)
“I have found the handbook very helpful – especially the encouragement regarding DLA applications (and have finally won my appeal!) I would, however, like more information on the transition phase (for my 13 year old son) and much more on the weitis (?) aspects (for my 10 year old son) as they both have JIA.” (a mother)
“Our daughter turned out not to have arthritis which was great. However, there were many similar features and it was thought to be arthritis for a while. We have struggled to find any information about what happened to her so info about related conditions would be good, such as viral conditions, pain syndromes etc.” (a mother)
“more information regarding the eye condition iritis would be useful.” (a mother)
“Excellent handbook – only wish it had been available 10 years ago! Would welcome more information on latest information about drug side effects, e.g. Methotrexate, Naproxen.” (a mother)
Negative comments
“Whilst much of the book was useful, constructive and comprehensive, the omission of the specialist nurse role in working with these children was a very significant one and prevented me from recommending the book to the families I work with.” (a specialist nurse) CHOICES have already made this adjustment in the latest edition, July 05
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