Another sub-theme is that access should be especially speedy when a patient has a ‘flare up’.
28. More self-help/patient support groups
“Perhaps a support group within each PCT would help.”
Female. 45-54. Diagnosed. 10 years or more. RA currently stable. East Anglia.
“More self help groups.”
Female. 45-54. Diagnosed. 2 years or more, but less than 5 years. RA currently stable. East Anglia.
“local support group”
Female. 54-59. Diagnosed. 5 years or more, but less than 10 years. RA currently stable. glaucoma. East Midlands.
“Every Rheumatology Department of every hospital should have a patient support group and patient "experts" who could be at the end of a telephone for anyone newly diagnosed.”
Female. 60-64. Diagnosed. 10 years or more. RA currently stable. Greater London.
“more support group service”
Female. 35-44. Diagnosed. 2 years or more, but less than 5 years. RA currently stable. asthma. North-east England.
“I would definatly like the option of an organisation providing local support for patients. Where we can meet others in the same age range or situation and share experiences and tips to cope. More education for none sufferers and friends and family, empoyers etc would be a god send as i am sick of comments about it just being stiffness when i live with agony every day. Thank you for conducting this survey and letting us have a voice.”
Female. 25-34. Diagnosed. A year or more, but less than 2 years. RA NOT currently stable. East Midlands.
“I feel that a more integrated approach is needed that should included working with any existing or in the establishment of 'self-help' groups. Education is important as RA can affect anyone and is not just an old persons complaint and also the condition should not continue to be the butt of comedians jokes!” [Also filed under ‘Better awareness of the condition: among the public’.]
Female. 54-59. Diagnosed. 10 years or more. RA NOT currently stable. North-west England.
“local support groups, i'm a member of an online forum which is very helpfull but it would be good to be able to speak face to face with others who RA or care for people with RA, especially parents as raising a family when you have RA has many differculties and support groups could offer much needed help and advice on daily life issues.”
Female. 25-34. Diagnosed. A year or more, but less than 2 years. RA NOT currently stable. under active thyroid which is controlled by medication. South-east England.
“more patient support groups in my area”
Female. 45-54. Diagnosed. 6 months or more, but less than a year. RA NOT currently stable. pernicious anaemia, asthma. South-east England.
“provision of support groups specifically for my age group - there are lots of support for juvinile arthritis, and arthritis in the elderly, nothing for the 20 - 50 age range - please help”
Female. 35-44. Diagnosed. 10 years or more. RA NOT currently stable. lupus, epilepsy and hughes syndrome. South-east England.
“A local support group, perhaps run by the local hospital, with talks from local specialist and service providers.”
Female. 65-74. Diagnosed. 5 years or more, but less than 10 years. RA NOT currently stable. High Blood Pressure. Yorkshire and the Humber.
“With patients' consent, I would have found it very helpful to be put in touch (eg via consultants) with other RA patients with similar conditions - to be able to compare symptoms/treatments. Also if potential drawbacks to a particular medication were being explained it would have been helpful to have been able talk to someone who had decided to proceed with it.” [Also filed under ‘Other services:
counselling’.]
Patient and carer views
of RA services
Appendix I: Your one suggested
change
29. Being treated holistically
[A similar category to ‘Better doctor-patient relationship required’, ‘Better communication among medical professionals’, and ‘Integrated services’.]“More treatment of the whole package ie. physical and mental.”
Female. 45-54. Diagnosed. 10 years or more. RA currently stable. East Anglia.
“support services to be more tailored and regular eg mind and body”
Female. 45-54. Diagnosed. 2 years or more, but less than 5 years. RA currently stable. diabetes stroke bi polar. East Anglia.
“More holistic and personal treatment - RA affects all areas of healthcare. And in Norfolk we desperately need psychological help to be available. I chair an RA patients' group, and the stories I hear would make you weep.”
Female. 54-59. Diagnosed. 5 years or more, but less than 10 years. RA currently stable. Sjrogens, associated with the RA. East Anglia.
“For the hospital rheumatologist/GP to see one holistically.”
Female. 54-59. Diagnosed. 10 years or more. RA currently stable. Bronchiectasis and hypertension. East Midlands.
“With RA there is tendency to have other conditions as well. You may attend different hospitals with these conditions but there is no way of being able to tie everything up and treat you holistically instead of in little pieces...why isn't there a way of all hospitals/agencies having the same info and access to xrays and notes?”
Female. 45-54. Diagnosed. 10 years or more. RA currently stable. Osteoporosis Pulmonary vasculitis. Greater London.
“A more wholistic approach to care with time to 'know' the patient & effects of the Ra on lifestyle”
Female. 35-44. Diagnosed. 10 years or more. RA currently stable. gastric ulcer as a side effect of drugs SVT. Greater London.
“Care is compartmentalised too much and should be more holistic (i.e. taking into account my diagnosis of psoriatic arthritis + depression as well).”
Male. 45-54. Diagnosed. 10 years or more. RA NOT currently stable. psosiatic arthritis + R.A. + benign prostate hypertrophy + clinical depression + asthma. Greater London.
“To be looked at as a Whole person. My spinal stenosis limits my movement, and has done for the last 15 years, but is not taken into account by my RA proffessionals”
Female. 54-59. Diagnosed. A year or more, but less than 2 years. RA NOT currently stable. Spinal Stenosis, stress incontinence. South-central England.
“I would like to my problems with RA to be viewed holistically, so as I received a "joined up " approach to my treatment and needs.”
Female. 54-59. Diagnosed. 2 years or more, but less than 5 years. RA NOT currently stable. Asthma. Lichen planus. South-east England.
“More treatment for the patient as an individual rather than having to follow a set path of medication and care for all. Everyone has different needs and each person is different in the way they are able to deal with their RA.” [Also filed under ‘Better doctor-patient relationship required’.]
Female. 60-64. Diagnosed. 2 years or more, but less than 5 years. RA NOT currently stable. Hypothyroidism Osteoarthritis in knees. Yorkshire and the Humber.
“look at the patient as a whole - as mentioned before be pro-active not re-active. better medication advice/ dietary alternatives etc” [Also filed under ‘More information/education from medical
professionals’.]
I am an informal carer for someone with RA. Female. 45-54. Diagnosed. 2 years or more, but less than 5 years. The RA is NOT currently stable. Greater London.